Questions to ask your radiation oncologist

It’s a good idea to bring a list of questions to your first appointment with your radiation oncologist. Bring a pen and paper, or take notes on your phone. This will help you make sure you’re not left with any lingering questions — and give you the opportunity to refer back to the answers later.

Here are some questions you might want to ask:

  • What type of radiation will I be getting?
  • What will happen during the radiation treatments?
  • Where will I be getting treatment?
  • How long will the treatments last?
  • How many treatments will I need?
  • How can I prepare for my treatment?
  • What is the goal of the radiation treatment?
  • How does radiation fit into my overall treatment plan?
  • When and how will we determine the outcome of treatment?
  • Are there any alternatives to radiation?
  • Will I be able to drive myself to and from my appointments?
  • Will the treatment affect my ability to carry out my daily tasks? Will I be able to work? Take care of my family? Do regular household tasks? Exercise? Have sex with  my partner?
  • Do I need to follow a special diet during treatment?
  • Can I continue to take my prescription medications and vitamins/supplements during treatment?
  • What side effects can I expect from treatment?
  • When should I expect them to start?
  • What can I do to manage my side effects?
  • Will I have any late or long-lasting side effects?
  • Will my treatment affect my ability to have children?
  • Do I need to take any special precautions before, during or after my treatment?
  • With pelvic radiation, do you recommend treatment with a full bladder? With a vaginal dilator in place for women? Why or why not?
  • For pelvic radiation specifically, can you get me a referral for pelvic floor physical therapy after completion of radiation therapy?

Here’s a downloadable PDF for you to print out and take to your appointment.

Looking for more questions?

Check out this article by RT Answers. 

Want to learn more about radiation?

Join one of our COLONTOWN Facebook groups:

  • Corner Cupboard is a place to discuss treatment side effects and management
  • In Liver Lover’s Lane we talk all about liver metastases.
    Join us in Lungston for all things related to lung metastases
  • In Legoland, we discuss bone metastases
  • Come join us in The Attic to learn about brain metastases
  • If you want more information about distant lymph node metastases, join us in In the Distance
  • Join Tough Chicks to learn more about how radiation affects women’s fertility
  • The Mighty Y-90 neighborhood has the answers to all of your questions about Y-90 treatment
  • If you’re suffering from late or long-lasting side effects related to treatment, check out The Late Show

Want to join? Fill out the registration form here.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand biomarker test breakdowns. We’re here for you! See our list of Learning Centers here.

Last updated: April 28, 2022

What side effects might I experience?

While radiation therapy is great at killing cancer cells, it can also affect healthy cells — meaning that many patients experience side effects from radiation treatment.

Here, we’ll go into common side effects that some patients experience, and give you some tips on how to manage them. Side effects vary depending on which type of radiation treatment you’re getting.

We will cover side effects from:

  • External radiation
  • SBRT
  • Y90

External radiation

Although you won’t feel anything during the actual radiation treatment, you may begin to notice side effects as your treatment progresses. Most patients begin to experience side effects within a few days, but most are temporary and will go away within a few weeks of your treatment finishing. However, some patients develop late side effects months, or even years after treatment ends.

Side effects can include:

  • Bladder problems
  • Bowel problems
  • Fatigue
  • Skin changes
  • Bone changes
  • Changes in sexual health and fertility

Bladder problems

Radiation can irritate the lining of the bladder, which can cause urinary changes — such as needing to go to the bathroom more frequently, or a burning sensation when you pee. These side effects often go away within several weeks of finishing treatment, but in the meantime, you can manage them by:

  • Drinking plenty of water. 8 to 12 glasses per day is a good goal
  • Avoiding anything that can further irritate your bladder, such as alcohol, caffeine or spicy foods
  • Talking to your doctor if you are experiencing this side effect, as they may be able to prescribe medication to help

Bowel problems

This is probably one of the most common side effects of pelvic radiation. Many people develop diarrhea and experience some level of discomfort while pooping. It’s common to feel cramping. You may need to go to the bathroom more frequently, and with greater urgency. You might also feel like you need to go, but not be able to poop. 

These symptoms should go away within 2 to 4 weeks after finishing treatment, so it’s important to talk to your doctor if you’re experiencing these symptoms longer than that.

Here are some tips:

  • Drink more liquids. 8 to 12 glasses of water a day is a good goal. Be sure to add some type of rehydration fluid, such as Pedialyte, if you’re experiencing diarrhea. This helps keep you from getting dehydrated
  • Take Imodium to help with diarrhea
  • Limit liquids that have caffeine or alcohol, and avoid any foods that irritate your bowels
  • Eat food low in fiber, fat and lactose
  • Take a warm bath
  • Try a sitz bath. Fill a basin or tub with warm water, and sit in it for 15 to 20 minutes after each bowel movement. This can help relax the anal sphincter and provide relief from cramps
  • Try a stool softener, such as Colace, to help make it easier to poop
  • If you’re still in pain, your doctor should be able to prescribe pain medication. However, keep in mind that many pain meds can be constipating — so you may need to increase your dose of stool softeners too

Fatigue

Many people feel tired and fatigued during radiation, although this should go away within several weeks of finishing treatment.

Here are some tips:

  • Try to notice patterns of specific days, or times of the day, that you feel more energetic or tired. Use this to help plan your day so high-energy activities are scheduled when you tend to feel best
  • Make sure to get a good night’s sleep, at least 8 hours per night
  • If you feel tired during the day, take a short nap. Even if you can’t nap, sit down and relax
  • Some people find that light exercise, such as going for a walk, can help improve energy levels
  • Ask friends and family to help with tasks such as cleaning, shopping, cooking, childcare, and housework
  • Talk to your doctor if you’re struggling to manage your fatigue, or if it persists for more than a few weeks after treatment ends

Skin changes

Many patients experience changes to the skin in the area treated with radiation. Your skin may change color, become dry, itchy, or flaky — or even blister or peel. These changes should go away within a few weeks of treatment ending.

Here are some tips:

  • Keep your skin clean. Use warm water and a gentle soap to clean the area. Pat gently, and don’t scrub, as that can irritate the skin
  • Moisturize your skin. Use a good moisturizer, such as Aquaphor, to keep the radiated area moist. If over-the-counter creams are not working, talk to your doctor for a prescription. Some people experience discomfort if they moisturize before radiation therapy, so don’t apply any cream to the area before treatment
  • Avoid irritating the skin. Wear loose-fitting, breathable clothing. Avoid scented creams, chlorine, sun exposure, and shaving

Bone changes

Pelvic radiotherapy can cause bones in the pelvis to weaken, and can cause small, hairline cracks to form. These cracks are called pelvic insufficiency fractures, and can occur some time after treatment ends.

This can cause pain when walking or going up stairs. If you’re having bone or pelvic pain several weeks after finishing treatment, talk with your doctor. Your doctor can prescribe medications to help with pain and strengthen bones.

Your doctor may need to schedule a DEXA scan to check bone density. It may be a good idea to see if you can get a density scan before treatment, so they can note any changes. You may need periodic DEXA scans after treatment is complete. 

Changes in sexual health and fertility

Pelvic radiation can affect your fertility and sexual health, for both men and women.

Women

Pelvic radiation causes scarring and damage to the vaginal walls, which can affect sexual health. The most common symptoms women experience are loss of libido, vaginal dryness, pain during penetration, and a narrowing or shortening of the vagina (called vaginal stenosis).

Pelvic radiation will often cause infertility, and may induce menopausal symptoms in women who are not in menopause. Most young women with rectal cancer can go into menopause after radiation therapy unless specific steps are taken to prevent this.

Do not assume that your doctor will bring up these concerns. Make sure to discuss anything you are concerned about prior to starting treatment. If you’re experiencing symptoms after treatment that are affecting your quality of life and relationship with your partner, talk to your doctor. 

Here are some tips on how to cope:

  • For young women who have not had children, ovarian transposition (where the ovaries are temporarily moved above the field of radiation) can help protect fertility and reduce the chances of early menopause. If this is something you’re interested in, talk to surgeons who specialize in this procedure
  • If you are concerned about becoming infertile, speak to your doctor about options for preserving fertility before starting treatment. Common treatments include embryo freezing, egg freezing, or ovarian tissue freezing
  • Using vaginal moisturizers can help with dryness
  • Using a lubricant during sex can help ease discomfort
  • Using a vaginal dilator during radiation treatment can help reduce symptoms. If this is something you want to consider, talk with your radiation oncologist
  • Using a vaginal dilator after treatment ends can help prevent the formation of scar tissue, stretch the vagina, and prevent narrowing
  • Talk to your partner about how you are feeling, and the symptoms you are experiencing. Try to get creative and find ways to be intimate that are comfortable and enjoyable for both of you
  • Look for a support group where you can connect with other patients in similar situations
  • Try pelvic floor physical therapy. This can help with improving urinary, bowel and sexual function after treatment. Start physical therapy early, before you experience difficult side effects
  • Remember that regaining sexual function takes time!

More info on women’s sexual health after treatment here:

 

 

Want to learn more about women’s sexual health and fertility? 

  • Check out this article from OncoLink to learn more about vaginal dilators. 
  • Reclaiming Intimacy is an organization that offers education, support and products for people affected by cancer to help them improve their sexual health and intimate relationships
  • Organizations such as LiveStrongWomanLab and Reprotech have fertility preservation and financial assistance programs that are aimed at cancer patients who are at risk of losing their fertility due to cancer treatments
  • This link from Cancer.net has more information and advice related to cancer and intimate relationships
Men

Pelvic radiation may cause a drop in testosterone, alter blood flow to the penis, and damage nerves in the pelvic area. These changes can often cause erectile dysfunction. You may experience loss of libido, problems with maintaining an erection, difficulty reaching climax, orgasm without ejaculation, and pain during sex. 

Do not assume that your doctor will bring up these concerns. If you have concerns about your sexual health and fertility, be sure to discuss them prior to starting treatment. If you are experiencing symptoms after treatment that are affecting your quality of life or relationship with your partner, talk to your doctor.

Here are some tips:

  • Talk to your partner about how you are feeling and the symptoms you are having. Try to get creative and find ways to be intimate that are comfortable and enjoyable for both of you
  • Your doctor can prescribe therapies such as pills, penile injections, urethral pellets, vacuum erection devices, or penile implants
  • If you are concerned about the likelihood of becoming infertile, speak to your doctor about options for preserving your fertility before starting your treatment. For men, the most common option is sperm banking
  • Look for a support group where you can connect with other cancer patients in similar situations
  • Remember that regaining sexual function may take time!

Want to learn more about men’s sexual health and fertility?

  • This guide from The American Cancer Society gives a good overview of how cancer treatments affect sexual health and fertility in men
  • This guide from the American Cancer Society discusses how male fertility may be affected by cancer treatments
  • Check out this link to learn more from Michael Krychman, a sexual counselor who guides us through discussions on sexual health during and after cancer treatment

SBRT

SBRT is a very precise treatment, which minimizes damage to the healthy tissue surrounding the tumor. Luckily, this means that side effects are often minimal, and will likely go away within a few weeks of finishing treatment.

However, side effects can vary depending on the area being treated, and the organs surrounding it, so it’s important to discuss this with your radiation oncologist. 

Common side effects can include:

  • Fatigue
  • Swelling and pain
  • Skin changes
  • Nausea and vomiting

Fatigue

SBRT can cause fatigue for anywhere from a few days to a few weeks after treatment. 

Here are some tips:

  • Try to notice patterns of specific days, or times of the day, that you feel more energetic or tired. Use this to help plan your day so high-energy activities are scheduled when you tend to feel best
  • Make sure to get a good night’s sleep, at least 8 hours per night
  • If you feel tired during the day, take a short nap. Even if you can’t nap, sit down and relax
  • Some people find that light exercise, such as going for a walk, can help improve energy levels
  • Ask friends and family to help with tasks such as cleaning, shopping, cooking, childcare, and housework
  • Talk to your doctor if you’re struggling to manage your fatigue, or if it persists for more than a few weeks after treatment ends

Swelling and pain

SBRT may cause temporary swelling or pain around the area being treated. If this is a problem for you, your team can prescribe pain medication or creams to alleviate the pain.

Skin changes

Most people getting SBRT don’t notice any skin changes during treatment — but you may see some changes 4 to 6 weeks after you finish. This can include pink or tanned-looking skin in the area that was treated. You may lose some or all of the hair in the treatment area — but your hair will usually grow back within 3 to 6 months.

Nausea and vomiting

This is most common when receiving SBRT to the liver or bowel. If this is a problem for you, chat with your team. They can prescribe medication, and refer you to a dietician who can give you tips on alleviating your symptoms.

Y90

The good news is that most patients who receive Y90 experience few side effects — and these side effects usually go away within a week or so following the procedure.

Some patients experience a low grade fever, mild pain, fatigue and lethargy, which usually clear up within a week. If you experience this, remember to rest and take naps when you need to. Listen to your body! Maintaining a healthy diet, staying well hydrated, as well as doing some light exercise can help boost energy levels. Don’t feel bad about asking friends and family to help out with daily tasks!

Some patients may also experience moderate pain, along with nausea and vomiting. If this is the case for you, speak with your doctor. They can prescribe medication to help alleviate these symptoms, but for most people, the symptoms go away within a week of the procedure

Want to learn more about radiation side effects?

Join one of our COLONTOWN Facebook groups:

  • In Rectalburgh, we discuss all things related to rectal cancer, including long and short course pelvic radiation
  • Mighty Y-90 is all about the Y-90 procedure
  • In Liver Lover’s Lane, we discuss all things related to liver mets, including SBRT and Y-90
  • Lungston is the place to discuss lung mets, including treatments such as SBRT
  • Corner Cupboard is a place to discuss treatment side effects and management
  • In the Late Show, we talk about the late effects of treatment, including late effects of radiation
  • Tough Chicks is a group specifically for patients who identify as women to discuss sexual changes and side effects from radiation
  • Poker Club is a group specifically for patients who identify as men to discuss sexual changes and side effects from radiation
  • If you’re under 40, come join us in Youngstown where you can ask questions about preserving sexual health and fertility

Want to join? Fill out the registration form here.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand biomarker test breakdowns. We’re here for you! See our list of Learning Centers here.

Last updated: July 28, 2022

Radiation for metastases: What to expect

Different radiation techniques are sometimes used to treat metastases in different parts of the body. Two commonly used treatments are called SBRT and Y90. Here are the basics:

SBRT

SBRT stands for stereotactic body radiation therapy. In colorectal cancer, it’s used to treat small metastases in the liver, lungs, lymph nodes and bones. It may also be called the CyberKnife or Gamma Knife, referring to the brands of machines used.

SBRT delivers a high and very precise dose of radiation to small tumors. It’s usually done over 3 to 5 treatments, administered over 1 to 2 weeks. 

It’s important to make sure you understand how SBRT will fit into your overall treatment plan, because it’s not usually possible to receive SBRT twice to the same area, if you experience recurrence.

Most external radiation experiences will be similar to SBRT.

Want more info? Watch this video:

 

Before the procedure

During your initial visit, you’ll meet your radiation oncologist. They will explain your treatment plan, the goals of treatment, and give you an idea of what to expect. They’ll also address any side effects you may experience. They will go over anything you need to do to prepare for your SBRT treatment.

It’s always a good idea to prepare questions in advance and take notes during your appointment, so you can refer back to them later. Sometimes it can be helpful to bring your carepartner or family member for a second set of ears!

Simulation

The purpose of the simulation is to create a detailed treatment plan — so you can maximize effectiveness and minimize damage to healthy tissue surrounding the tumors.

Before your simulation, some treatments require placement of small metal markers (called fiducials) in or near the tumor. This helps the radiation oncologist better locate the tumor during the simulation and treatment. This step is usually performed as an outpatient procedure prior to your SBRT treatment. However, it’s not necessary for most patients receiving SBRT.

During the simulation, your team will use detailed imaging techniques to locate your tumors and track them over time as they move with your breathing cycle. You will be positioned on the table, possibly with a variety of immobilization devices or body molds to help keep you in place. This also makes it easy to get you into the correct position when you come back for treatment. 

During the imaging process, you’ll probably be asked to hold your breath several times. The breath holds usually range from 10 to 30 seconds. If you’re getting treated in a part of your body that moves when you breathe, you may also practice with breathing apparatuses during the simulation. They may go in your mouth — like a snorkel — or may be strapped to your chest.

At the end of your simulation, you will be given your treatment schedule.

Treatment day

SBRT is usually given over 3 to 5 days over the course of 1 to 2 weeks — depending on the size, location and number of tumors being treated. Each treatment will take anywhere from 20 minutes to an hour.

During the procedure, you’ll lie down in the same position you did for the simulation. The machine will rotate around your body several times, delivering beams of radiation to the tumor from different angles. You will not feel or see the beams going into your body. You’ll be asked to hold your breath several times during treatment, just like in the simulation

After the procedure

After you finish treatment, you’ll have regular follow up appointments with your radiation oncologist. You will likely have a CT scan before each appointment, so your team can see how your body is responding to treatment.

Remember that some side effects will continue for a few days or weeks following treatment. Be sure to ask your doctor about what to expect, and report any side effects during your follow-up appointment.

Want to learn more about SBRT? 

Check out this article from UCLA for more information on the procedure and what to expect. 

Today I had my preparation scans for Stereotactic Body Radiation Therapy (SBRT) to my lungs. First, they laid me on my back and put a mouthpiece with a tube in it, plugged my nose, and put special goggles on me so I could see a screen. Using the screen as a guide, they first had me breathe regularly and a red line went up and down, tracking my breathing. Then they introduced a green bar at the top of the screen. After three regular breaths, my job was to inhale to bring my breath line up to the bar and hold it till the bar disappeared, about 20 seconds. They did this 3 times, then asked me to hold as long as I could , which was 27 seconds. I recommend practicing deep diaphragmatic breathing daily a week or so before this procedure, so you know how to breathe in slowly and hold it in your lower belly.

During this, they scrunched up a pillowy thing I was lying on, molding it to my body, and blew air into it to make a personalized immobilization cushion for the actual procedure. 

After that, they put me in the CT scan machine with my arms overhead for one session of held breath, then took off the mouth, nose, and eye gear and did one last scan. Then the technician put stickers on my body marking the coordinates that will help the radiation oncologist get the tumors precisely. Then I was done! The whole thing took about an hour.

Day 1 of SRBT at [my cancer center] in the bag, for one of my two lung mets. My machine was a TrueBeam. I lay in my handcrafted body mold with my arms over my head, but they did NOT use the breathing apparatus on me —said I didn’t need it. They arranged me, pulled up my shirt to just below my breasts, turned on a big circular plate thing over my chest, and said they’d do some imaging and then the treatment. I could see in a mirrored part of the circular plate that a square over a part of my chest was lit up, with a green line of light through it. Parts of the machine slowly passed over my chest — the circular plate, a square panel, and another square panel. Since French lounge music was playing and the equipment looked so space aged, I felt like I was in a 70s sci fi porn flick. Big Barbarella vibe. I got kind of sleepy. About 15 minutes later they came in and I said, oh, is the imaging done? And they said the whole thing was over, treatment and all. And they stuck a new sticker on me, right over where the met is, and hauled me up and I went home. 5 more to go. But it’s all rather boring! No side effects 3 hours later!

I said I’d blog my SBRT experience, but it was too boring to write about every session. So, I’m done now, having had 3 sessions for a metastasis in my left lobe and 3 for a metastasis in my right lobe, over the course of 2 1/2 weeks (Fri., Tues., Thurs for left lung and Mon., Weds., Fri. for right lung). Each session was very quick, 15 minutes in a Varian TrueBeam, with me lying on my back with my arms overhead, on a special pad that had been contoured to my body. 

I ended up not needing the breathing apparatus, so I breathed normally while a series of mysterious panels rotated over my torso, with a green beam of light coming down over them and through some of them. Music played—a different genre each time, from French lounge music to smooth jazz to Fleetwood Mac. It was relaxing. I had no side effects except fatigue the night of the radiation, when I went to bed early and slept well.

I had a PET scan after treatment #4 for other reasons, and nothing showed in the left lung that had had the full 3 treatments, though the lesion in my right one still showed up as it had had only 1. Hoping for clear chest scans in a couple of months!

Y90/SIRT

For colorectal cancer, Y90 is used to treat liver metastases. It’s a minimally invasive procedure, which involves inserting tiny glass or resin beads that contain the radioactive isotope yttrium 90 into the blood vessels that feed liver tumors.

The radioactive beads are delivered to the tumor through long, thin tubes called cathethers. They cut off the blood flow to the tumor, while sparing healthy tissue as much as possible. Once the beads are lodged in the tumor site, they deliver a high dose of radiation to the tumor, killing cancer cells.

Y90 is not usually intended to “cure” the liver or eliminate tumors entirely, but it can be very effective in controlling tumor progression and extending survival.

Learn more about Y90 here:

 

Before the procedure

You will have an appointment with an interventional radiologist, who will explain the goals of treatment. They’ll also go over how to prepare, what to expect during treatment, and what side effects you might experience.

You should receive detailed instructions about eating, drinking, and taking medication or supplements before the procedure. Come prepared with questions, and take notes to refer back to later.

You’ll need to arrange for someone to drive you to the procedure and pick you up afterwards. And because you’re receiving a high dose of radiation, you will probably be told to limit close contact with other people — particularly children and pregnant women — for a time after the procedure.

Your team will also take blood samples and do an angiogram, which helps them map out the blood vessels that are feeding the tumor. If necessary, they’ll use coils to block the blood vessels feeding other organs, such as the stomach, bowels, and lungs.

Treatment day

Y90 treatment is usually done as an outpatient procedure, although some people may be admitted to the hospital.

You’ll receive an IV sedative, as well as medication to prevent pain, nausea, and infection. A nurse will monitor your vital signs. You’ll receive local anasthesia to numb the area where the catheter is inserted into the blood vessel.

The doctor will make a small incision, insert the catheter, then use imaging technology to move it into the correct position. Then, they will insert the small radioactive beads through the catheter. The catheter will be removed, the incision will be closed and covered with a small dressing. Then you should be able to go home!

After the procedure

In the 10 to 14 days following the procedure, radioactive material will be released from the beads, into your tumors. The beads lodged in capillaries can also cut off blood supply and help kill the tumors. 

Y90 can cause hyperplasia, or enlargement of the liver. Y90 can be targeted to specific areas in the liver, so it’s possible to receive this treatment multiple times to target different areas. 

Because you’ve received a high dose of radiation, your doctor will probably recommend avoiding close contact with kids and pregnant women, and to avoid extended contact with other family members or pets. This is because the radioactive seeds are implanted in the body, and will continue to release over time. 

You may be asked to schedule a follow up appointment.

Want to learn more about Y90? 

Check out this article by Radiology Info. 

Diagnosed: July 2018

Stage: IV

Type: Colon cancer, metastases in liver

Now this is a story all about how my life got flipped-turned upside down and I’d like to take a minute just sit right there I’ll tell you how I was diagnosed with stage 4 colorectal cancer. My name is Jason, and I was diagnosed stage 4 at age 35 on July 17, 2018. Two weeks prior to this date is when I first experienced any symptoms that were considered red flags. I went to my PCP to get it looked at, mentioning diverticulitis that my mom had several times, and they ordered a CT scan to verify. There was a 5cm sigmoid mass and 14 metastatic lesions in my liver, all but one being 2.5cm in diameter and the last one being 11.5cm x 7cm.

Due to a full blockage via the tumor and the extent of cancer in the liver, I was deemed inoperable and an emergency 10cm titanium SEMS stent was placed to keep the sigmoid colon open and me alive. I began chemotherapy within a week of diagnosis (I’m a lucky guy), and I had 9 cycles of FOLFIRINOX (slightly different than FOLFOXIRI), the big guns to start. 

In November and December 2018, I took a heavy chemo break to have Y90 mapping and 2 Y90 procedures done. I resumed heavy chemo within a month and did 11 cycles of FOLFOX. I stopped this due to it diminishing my platelet counts to the point we were concerned I may need a bone marrow transplant. During the time after my Y90s, I started to see an integrative medicine doctor who helped improve the symptoms and side effects I was experiencing. This allowed me to go back to work in May 2019. 

Scans in August 2019 showed a very good and continued response to chemo and Y90. I also had 5 biopsies (4 colon, 1 liver) performed, with results of no malignancy detected. Scans still showed a few liver spots and one near the colon. October 2019 CT scans showed 2 abnormalities on the lungs. I had an upper respiratory infection at the time when those spots showed up. To be safe, my team put me back on FOLFIRI with Vectibix for 4 cycles. I asked about the possibility of resection surgery for both the colon and liver and was told that it still was not approved by the review board, especially now that those two spots showed up in the lungs. Scans in November 2019 revealed the lung spots were much smaller and labeled as consistent with inflammation or infection, but they could not rule out metastatic disease due to the possibility the chemotherapy was what had shrunk them. I then asked about surgery again and was told no, chemo for life. 

This is when I decided to take the knowledge learned in COLONTOWN, and others, to seek out a second opinion about liver surgery, because what did I have to lose at this point? I wanted to have confirmation by one of the best that I would truly not be a candidate for resection surgery. Learning this information would let me feel confident that I had at least tried to exhaust all options before resigning myself to the chemo for life and inoperable prognosis.

I got my second opinion from a specialist who focuses on only mCRC liver mets. He reviewed it all and explained to me that I was the perfect candidate for his resection surgery. He explained that my right lobe Y90 procedure had worked a bit of overtime and killed off my entire portal vein. It performed its own Portal Vein Embolization (PVE) that [a specialist] uses as a gauge in his two-part surgery. Mine had already shown that the left lobe compensated for the dead part of the right and I would be having surgery with curative intent in a single surgery instead of the 2-phase surgery he normally requires. Best part is his surgery comes with an average of 40-50% curative rate. This is a game changer after being told inoperable beyond palliative reasons. The January lead up CT and PET scans determined the lungs had no lesions and it was infection or inflammation.

He brought on board another surgeon to perform my anterior resection surgery, stent removal, and ileostomy placement. I had a 9 hour long surgery on February 25, 2020 and had 30cm of colon including my stent removed, my entire right liver lobe removed, gallbladder removed, and ileostomy placed.

My pathology report came back two weeks later to reveal that I had a rare, near complete pathological response to the 30 cycles of chemotherapy and two Y90s; with <1% of total tumor remaining from date of diagnosis, 99% was tumor necrosis, the remaining tumor was removed well within the margins, and 5 microscopic lesions on the left lobe were ablated successfully. Of the 31 lymph nodes removed during surgery, all were negative for metastatic cancer! My surgeon was glowing with excitement at the report and basically called me his unicorn patient. WOW, I am a lucky dude to hear that from one of the best at what he does. The other surgeon was impressed at the colon as well, minus the whole stent part (about to get to that), and he is a very good CRC surgical oncologist that had just came from [a great cancer center]. I fully recovered from that massive surgery successfully and had my ileostomy reversed on May 19, 2020. Not one bit leading up to that surgery was easy though.

Three weeks prior to my liver/colon surgery, my friendly lifesaving stent decided to flip the tables and try and kill me by fracturing and perforating my bowels. If I had emergency surgery here in Kansas to remove the colon and stent, it would have taken the curative liver surgery off the table- a surgery I was told I would NEVER have prior to this. Sorry, not having it, I had come too far to not try and tough it out. I have three children, one that was born just two hours after my 8th chemo cycle, and my wonderful wife, who was 6 months pregnant at diagnosis — so I decided to tough it out and make it to the surgery in California come hell or high water.

Those three weeks were extremely difficult for me, because I basically lived in a hot shower, could not eat or drink more than a few cups of water or liquids at a time, and had to have a heating pad on me constantly. I was taking 6-10 showers per day for 20-30 mins at a time to fight off the hunger pangs and the tremendous pain of the stent not wanting to pass much stool (and then when it managed to pass something, it felt like razor blades). I was away from my family, suffering in my parent’s basement, not able to sleep for more than a few hours at a time- tired, scared, lonely, doped up on pain meds, just ready for the day to come when I would become chopped liver, desperately hoping the stent would not get infected or fail my body, even though it had perforated my bowel. 

My stomach was making noises from antibiotics that were not from this world, starting to swell a little bit due to inflammation. I had previously managed to get off the opioid pain meds for a long time due to not having any pain, but I had to have them those three weeks, it hurt so badly. If I had to describe a feeling I was going through, it was dying. I lost an additional 35 lbs. to the already 75 lbs. lost in the year and a half prior due to cancer. Losing 35 lbs. in 3 weeks was very taxing on my body in that short time before surgery. I wish this feeling upon no one. 

Considering what I had just gone through, getting to the surgery was a major accomplishment in my cancer experience, and my medical oncologist now is over the moon about the results of the liver surgery. However, in October of 2020 my CT scan revealed a spot near my coccyx and my rectum as well as a positive Signatera test (88 mtm/ml) and we started me back on 4 more cycles of FOLFIRI and Vectibix before more scans. The day after my last chemo infusion I discovered I had COVID-19 and it delayed my treatments and scans for a full month. Once I was able to get scanned again, the tumor board decided that to get me to a surgical state again that I would need to have 28 chemoradiation sessions to my entire pelvic region. This happened in February and March of 2021 and it caused me some considerable side effects, especially with LARS symptoms and specifically clustering and tenesmus. I was spending upwards of 2 hours on the toilet, and it was not a fun time but my tumor did show response to both the chemo and chemoradiation we threw at it. 

My scans prior to surgery revealed that the tumor had infiltrated my coccyx bone and I had a full abdominal perineal (APR) resection surgery on June 4th, 2021 with an en block coccygectomy, where they remove the entire tailbone and, in my case, also 1cm of sacrum. I lost my entire rectum and anus in the procedure too and was stitched up from behind like a Ken/Barbie doll and got a permanent colostomy bag. 

The margins were clear, albeit very close (1mm), but clear and I was determined to be NED on the follow up scans and pathology report. The same pathology report showed 0 of 11 lymph nodes positive for cancer too. I took a Signatera test before surgery and after surgery as well and both came back negative, but we will continue to use that and standard monitoring tools to watch for reoccurrence and on an accelerated schedule of 2 months instead of 3. The permanent colostomy bag is very easy too, I spend less than 5 minutes per day messing with it most days which is great compared to the 2 hours I was spending on the porcelain throne. We opted to not do any more chemo or radiation, even though 5 sessions of SBRT was offered if I wanted to be overcautious and I am okay with that and being aggressive with the monitoring.

I have my own maintenance routine as well, taking a few supplements that have shown some preventative measures for CRC that were recommended by my oncologist and surgeon- Vitamin D and low dose aspirin. I also take one that is repurposed but under the direction of my integrative medicine doctor, which is an immunomodulatory, but that is for another discussion. Mental health, diet, and exercise have been important, with a largely Mediterranean style, high fiber diet. I cannot stress enough how important it is to take care of your mind during this cancer experience as well as just your physical well-being. Easier said than done, but if you can see a therapist to talk or find a meditation that works for you, then please do it, and don’t hold back. There is no shame in any of this, none of us deserve this and it can really help to talk to a professional. I see a therapist every week to talk about so many things, but it has helped get me through many of the harder to process emotions than I can do on my own. 

I cannot tell you the feelings and emotions that come with going from a situation of not having much hope with a bad prognosis… desperate, scared… and having that flipped completely around and being NED. It has been positively life changing and very emotional at the same time. I have a lot of survivor’s guilt, so I try to cope by providing help to others. I try to help them find their own voice in their cancer experience or try to point people in the right direction (which may prove to be beneficial to their situation). No one in my family will ever understand it either, no matter how much I explain it to them, that’s why COLONTOWN is also my family; we all understand the depth of it all here and there is comfort in that.

I know exactly where some of you all are. It isn’t fun, hearing things that make you go to dark places, things that add layers of stress to an already stressful world that is life-changing, life-impacting nonsense that no one deserves. I’ve had about 6 surgeries including a fistula surgery, 34 chemo treatments, 2 Y90s and mappings, 28 chemo radiations, countless other procedures along the way, 5 colonoscopies, a chemo leak from the take home pump that caused severe chemical burning, had to learn to self-catheterize when my tumor had blocked me from urinating, many ER trips, and so much more. I want to provide some hope, love, support, and encouragement for those who too may feel lost and hopeless at stage 4 and that even something as simple as knowledge of a new procedure or drug protocol your oncologist may not know about that you may learn here, or if you seek a second opinion, or as many as you need, that it can change the whole trajectory of your prognosis, maybe not, but worth pursuing.

One of the first things my integrative medicine doctor told me the first time I met him, after looking me straight in the eyes, was: “Jason, I want you to keep your eyes on the prize, and never take them off. Set a goal, plan a vacation, an upcoming event, anything to look forward to and to keep your eyes on the prize. When you reach your goal, immediately set a new one and remember to always keep your eyes on the prize”. What he said stuck with me, and I never looked back no matter what was going on.

Want to learn more about radiation?

Join one of our COLONTOWN Facebook groups:

  • Corner Cupboard is a place to discuss treatment side effects and management
  • In Liver Lover’s Lane we talk all about liver metastases.
    Join us in Lungston for all things related to lung metastases
  • In Legoland, we discuss bone metastases
  • Come join us in The Attic to learn about brain metastases
  • If you want more information about distant lymph node metastases, join us in In the Distance
  • The Mighty Y-90 neighborhood has the answers to all of your questions about Y-90 treatment
  • If you’re suffering from late or long-lasting side effects related to treatment, check out The Late Show

Want to join? Fill out the registration form here.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand biomarker test breakdowns. We’re here for you! See our list of Learning Centers here.

Last updated: April 28, 2022

Pelvic radiation: What to expect

When it comes to treatment day, you might be anxious or not sure what to expect. We’re here to help!

Before the procedure

If radiation is a part of your treatment plan, you will probably start off with a visit to your radiation oncologist. They will explain the details of what you’ll be receiving, and what to expect. During this appointment, you should have an opportunity to ask any questions that you have about the treatment.

Simulation

After your meeting with the radiation oncologist, you will probably schedule an appointment for your simulation. The purpose of the simulation is to map out an accurate and effective radiation plan so everything goes smoothly day of treatment.

When you arrive at your simulation, the technicians will start by performing a scan. This helps the radiation oncologist decide where to aim the radiation beams and how much radiation to deliver to each area. 

First, they will ask you to lie down on the machine, and help you find a good and comfortable position. For pelvic radiation, you will probably lie on your back, with your legs in a “frog position,” or on your stomach.

The technicians may use molds or other devices to help keep your body still, or help keep specific body parts outside the field of radiation. These will be the same molds you use during the real thing.

In some places, you might be offered to have a vaginal dilator in place during each session. This is done to help move the vaginal wall away from the field of radiation. If you’re comfortable with this, you can ask for this adjustment. The simulation will also need to be done with the dilator in place.

After you’re positioned correctly, you will receive a few small tattoos on your abdomen. Yes, real tattoos! These small dots help the technician position you correctly in future sessions. 

After getting the tattoos, you will lie still on the machine while pictures are taken. This helps your radiation oncologist plan your treatment. At the end of your simulation, you should be given a schedule for your radiation treatments.

Treatment day

Your appointment will be fairly similar to the simulation. Many patients are asked to come to treatment with a full bladder. This helps protect your small intestines from receiving radiation damage. If that’s the case for you, make sure to drink plenty of fluids before your treatment — but not so many that you’re uncomfortable!

If you want to have a vaginal dilator for your treatment, this will also be placed.

You will lie down on the machine. You’ll need to be completely still for a while, so make sure to let the technician know if you are uncomfortable. The treatment should only take about 10 to 15 minutes.

During this time, the machine will rotate several times around your body, delivering the radiation treatment. You will not be able to see or feel the beams entering your body. It won’t hurt at all!

The technicians operating the machine will be in another room, but they should be able to see and hear you clearly. So don’t be afraid to speak up if you have any concerns during treatment.

After treatment has finished, you can go home and get ready to come back the next day.

After the procedure

If you’re having long course radiation, you will receive treatment for 5 to 6 weeks. If you’re having short course radiation, you’ll only be treated for 5 days.

You will probably meet with your radiation oncologist at least once during your treatment, just to check on how things are going. Be sure to ask any questions you have about treatment, and report any side effects you’re experiencing. Side effects usually start anywhere from a couple days to severeal weeks into treatment — and they will probably continue for a few weeks after treatment has finished.

When you are done with your radiation course, you will be given a follow up appointment to check in with your radiologist a few weeks later.

Want to learn more about what to expect on treatment day? 

Check out this article by Memorial Sloan Kettering.

Diagnosed: July 2019

Stage: II

Type: Rectal cancer

After receiving the news at my colonoscopy that I was cancer-arse (rectal cancer), my first meeting was with the surgeon. He told me I would need chemotherapy and radiation, followed by two surgeries. After hearing that, I went home, immediately hopped on Amazon, and ordered a head wrap in preparation for chemotherapy.

Once I met with my Oncologist, who had ordered and reviewed additional tests to resolve a staging discrepancy between T3 and T2, he decided that the type of chemotherapy he would prescribe for me is one that does not cause hair loss. I am now in search of a dress to match my head wrap, so it can have a useful purpose in my wardrobe. I learned from that to ask questions, including ones to which I think I already know the answer, and to stay in the moment as treatment evolved, resisting the urge to get ahead of things. 

The chemo medication I was prescribed was a pill form, Capecitabine (Xeloda). It arrived by mail in a rather terrifying looking bag with special handling instructions:

Upon removal, they were much more innocent looking pretty pink pills of precious poison. For my treatment plan, I took 1800mg twice daily, 12 hours apart concurrent with radiation for 42 days. Choosing a routine that works for one’s individual schedule is important, so doses are not missed. I worked long days, so I took my first dose right away in the morning at 6am and then went to radiation immediately afterwards, taking the second dose at 6pm right before my second job. 

The only challenge to this was that I was unable to have food until after radiation. It was probably due to this food delay that I experienced some nausea with the morning dose of chemotherapy. It was not severe, so I managed it by distraction, breathing exercises, and eating a cracker right after radiation. The other side effects I experienced were diarrhea and fatigue. The diarrhea improved over the course of treatment and may have been partially or even mostly caused by the cancer itself.  Fatigue was the most challenging side-effect for me. Both the chemo drug and radiation caused fatigue. I was unable to take time off work and just kept putting one foot in front of the other each day, resting when I could. Radiation fatigue has weakness in addition to tiredness, which I definitely experienced (I recall the moment I realized that manufacturers were not, in fact, putting lids on more tightly than they used to). If you do experience side effects to chemotherapy, there are medications to treat some side effects that you could discuss with your prescriber. Otherwise, know that side effects from chemotherapy resolve after treatment has ended and you will feel better.

Want to learn more about radiation?

Join one of our COLONTOWN Facebook groups:

  • In Rectalburgh, we discuss all things related to rectal cancer — including long and short course radiation treatment.
  • Corner Cupboard is the place to discuss treatment side effects and management.

Want to join? Fill out the registration form here.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand biomarker test breakdowns. We’re here for you! See our list of Learning Centers here.

Last updated: April 28, 2022

What types of radiation are there?

Radiation treatments can include:

  • External beam radiation therapy (EBRT)
  • Stereotactic body radiation therapy (SABR/SBRT/CyberKnife)
  • Proton therapy
  • Brachytherapy (Y90/SIRT)
  • Intraoperative radiation therapy
  • Intensity modulated radiation therapy (IMRT)
  • Brain stereotactic radiosurgery (Gamma Knife)
  • Palliative radiation therapy

Learn more about the different types below.

External beam radiation therapy (EBRT)

EBRT is the most commonly used type of radiation to treat rectal cancer. These radiation beams are very precise, targeting the tumor while avoiding as much of the surrounding healthy tissue as possible.

EBRT is usually given either as a long course — over 5 to 6 weeks — or as a short course, over just 5 days. Research has shown both types to be equally effective in many cases, although several factors can affect which type you may get. Your radiation oncologist will determine which is best for you.

Short course EBRT

Short course radiation therapy is usually given over 5 days. You will receive 5 gray (the unit we use to talk about radiation, often shortened to Gy) of radiation on each day — or 25Gy in total over 5 days.

Although this seems lower than the total radiation dose in long course EBRT, the radiation received by the tumor is comparable between the two regimens. Studies have shown the two approaches to be similarly effective in most circumstances.

Short course EBRT can reduce the total time spent in treatment and time off work for rectal cancer patients. 

However, short course radiation may result in more scarring of your rectum. Though recent studies show this not to be the case, many radiation oncologists hesistate to recommend it if you plan on following a non-operative, or “watch and wait” protocol. 

Short course radiation is the most common rectal cancer radiation treatment in many European countries.

Learn more about short course radiation therapy and non-operative rectal cancer management here:

 

Stage: IIIB

Type: Rectal cancer, with high rectal tumor

I received short-course radiation, which consisted of 5 treatments.

In general, my experience was very manageable. I didn’t have any issues with my skin or discomfort in my rectum. The only issue I had was back pain after my second treatment. It was very uncomfortable.

My doctor prescribed me a steroid pill that I took for two days. That took care of the pain, and it didn’t come back. I was given vaginal dilators, which I could use comfortably. There doesn’t appear to be any vaginal stenosis.

After my short course radiation I went through 6 rounds of CAPOX. My treatments worked well. I had a complete clinical response. I chose to not get the operation and am following a watch and wait protocol.

Long course EBRT

Long course radiation therapy is given over 25 to 28 days along with oral chemo tablets (capecitabine/Xeloda). You will receive 50Gy of radiation in total. 

Traditionally, long course EBRT has been the most common radiation therapy treatment plan, but recently, many centers have been moving in favor of the short course plan — especially due to the pandemic!

Long course radiation is preferred if you are planning to take a non-operative, or “watch and wait” approach. This is because long course radiation is thought to cause less scarring, so there’s less damage to the rectal tissue. Also, the current studies on the watch and wait approach have only been done with long course radiation, so we don’t have data to determine whether short course radiation works the same way. 

Want to learn more about long and short courst EBRT?

This article from Cancer Therapy Advisor discusses the advantages and disadvantages of the two approaches.

And this article from Memorial Sloan Kettering explains why short course radiation has recently gained more popularity in the US.

This DocTalk with Dr. VanderWalde gives an excellent overview of EBRT as rectal cancer treatment:

 

Stereotactic body radiation therapy (SABR/SBRT)

SBRT is a targeted radiation technique that is often used to treat small liver, lung, bone and brain metastases. This treatment is often called the CyberKnife, which refers to a brand of machine that is used.

It is more targeted than regular EBRT, so it allows the radiation oncologist to focus on a smaller area — sparing more of the healthy tissue. This is important in organs with more sensitive tissue, such as metastases in the brain.

This therapy is often used to target small tumors, where surgery is not a good option. This could be due to the location of the tumors, your overall health, or the presence of metastases in other organs.  There are usually a limited number of tumors that can be treated with SBRT — and the same area cannot usually be retreated if you have a local recurrence.

Proton therapy

This type of radiation uses proton beams instead of photon beams — the type used in standard EBRT. 

Proton beams may be able to target tumor tissue while sparing more healthy tissue.

Learn more about proton therapy in this DocTalk with Dr. Jethwa:

 

Brachytherapy radiation (Y90/SIRT)

This type of radiation is also called selective internal radiotherapy, or SIRT. It is usually used to treat inoperable liver metastases.

During treatment, tiny glass or resin beads — filled with the radioactive isotope yttrium Y90 — are placed inside the blood vessels that feed a tumor. 

Learn more about Y90 here:

 

Intraoperative radiation therapy

In this treatment, you’re given a high dose of radiation during surgery to kill any leftover cancer cells. This is done by an interventional radiologist in one large dose.

Intensity-modulated radiation therapy (IMRT)

IMRT is an advanced form of radiation therapy that delivers precise doses of radiation specifically to the tumor, or certain areas within the tumor. A highly sophisticated computer controls the radiation beams from different angles, allowing the radiologist to deliver higher doses of radiation to the tumor site, while minimizing damage to the surrounding healthy tissue.

Brain stereotactic radiosurgery

This is also called the Gamma Knife, referring to the brand of machine that is used. It is a non-invasive radiation treatment commonly used to treat brain metastases. This type of radiation is usually used when tumors are very small or located in places that are difficult to surgically remove.

Gamma Knife is an extremely precise form of radiotherapy that uses about 200 different beams from different angles to accurately deliver radiation to the tumor. 

Palliative radiation therapy

Radiation therapy can be used to relieve pain. If a tumor is pressing on a neighboring organ, and is causing pain or discomfort, radiation therapy can reduce the size of the tumor and provide relief. Speak to your healthcare team to discuss your options. 

Want to learn more about radiation?

Join one of our COLONTOWN Facebook groups:

  • In Rectalburgh, we discuss all things related to rectal cancer, including long and short course pelvic radiation
  • In Liver Lover’s Lane, we discuss liver metastases
  • Join us in Lungston for all things lung metastases
  • In Legoland, we talk bone metastases
  • Come join us in The Attic to learn more about brain metastases
  • If you want more information about distant lymph node metastases, join us in In the Distance
  • The Mighty Y-90 neighborhood has answers to all your questions about Y-90 treatment
  • Try Tough Chicks, a women’s only group, to chat about radiation side effects

Want to join? Fill out the registration form here.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand biomarker test breakdowns. We’re here for you! See our list of Learning Centers here.

Last updated: April 28, 2022

What is radiation?

You might hear you’re getting radiation treatment. But what is it, exactly?

Radiation oncologists use beams of high energy to alter and damage the DNA in cancer cells, ultimately killing them. These beams come from a highly specialized machine, and are aimed directly at your tumor. You will not see or feel the beams going into your body during treatment.

Radiation can also affect healthy cells, although side effects may take a few days to set in. Radiation therapy takes time to work, and will continue to work in the body for several weeks after treatment has finished.

How is radiation used to treat colorectal cancer?

Radiation treatment can be used:

  • Before, after, or during surgery to kill any cancer cells left over and prevent the tumor from coming back
  • As a palliative measure, if a patient is unable to undergo surgery or if the tumor is causing pain or a blockage
  • To treat metastases in the lungs, brain, bones, liver, or other areas
  • As a local treatment done concurrently with systemic treatment — like chemotherapy or immunotherapy

Radiation is more commonly used to treat primary rectal cancer than colon cancer. If you have been diagnosed with rectal cancer, it’s more likely that radiation will be part of your treatment plan. This is because most of the rectum does not have a protective peritoneal covering that encircles the colon. This makes it more likely for a rectal tumor to break through and spread locally in the pelvic cavity (the space between your pelvic bones). Tumors here are difficult to treat with surgery.

If surgery is a part of your treatment plan, you will likely have radiation first to help kill cancer cells, shrink the tumor, and make it easier for your surgeon to get all of the cancer while sparing the healthy parts of your rectum. 

Want to learn more about the differences between colon and rectal cancer? 

Check out this article by the University of Michigan. 

Find out more about radiation therapy here:

Check out this DocTalk with Dr. Sanford to learn about radiation for CRC:

How will radiation fit into my treatment plan?

If radiation is part of your treatment plan, your healthcare team will first take into consideration your entire treatment history and any future treatments that are planned. 

This is because there are limits on the recommended amount of radiation you can receive over a lifetime. It’s also difficult to re-treat an area that has already been treated with radiation. This means that if you have any local recurrances, your treatment options may be more limited.

If you have any concerns about how radiation may affect your future treatment plan, it’s important to speak up and ask your care team.

Can radiation be combined with other treatments?

Yep, radiation can be combined with other treatments, such as chemotherapy or immunotherapy. Oral chemo pills (like capecitabine/Xeloda) are often given alongside long-course radiation.

Want to learn more about radiation?

Join Rectalburgh, one of our COLONTOWN Facebook groups. Here, we discuss all things related to rectal cancer, including long and short course pelvic radiation.

Want to join? Fill out the registration form here.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand biomarker test breakdowns. We’re here for you! See our list of Learning Centers here.

Last updated: April 28, 2022