Today is the 5 year anniversary of my stage 3b rectal cancer diagnosis.
I will have my annual scans in September and hopefully it’s all clear — and then I can graduate from all the surveillance and finally get my port out.
I have a lot of mixed feelings today. I am very glad to have made it to the 5 year anniversary of my colorectal cancer (CRC) diagnosis with No Evidence of Disease (NED). This is the more common outcome for early stage (stage I-III) colorectal cancer, with 5 year survival rates of over 70-90% for this group.
About 151,000 people will be diagnosed with CRC this year and ~80% will be diagnosed at earlier stages where curative intent therapy — treatment aimed at curing the disease — is quite effective. About 10-30% of these early stage folks will progress to stage IV despite the treatments and about 20% of people are stage IV at diagnosis. Unfortunately, only about 14% of people diagnosed at stage IV will make it alive to 5 years. The sad and random part of it all is that we don’t get to choose what cancer we get or what stage it will be at diagnosis. We just have to learn to deal the best way with the hand we have been dealt.
That said, from my experience as a patient, survivor and patient advocate, I have been humbled, inspired and educated by scores of AMAZING humans — young, old and in-between, rich, poor and in-between, scared, fearless and in-between. The way each of us deal with something like cancer is uniquely us and there is no right or wrong way. ANY way that gets you through it all, whatever that means, is the right way.
But here are some random thoughts about what can make this experience more tolerable.
A positive attitude helps us heal is bullsh*t. Just like it was bad luck (along with some questionable genes and environment and their interaction etc etc) that got us our colorectal cancer, it is extremely random what determines who will have early stage disease (a delay in diagnosis is a big problem for young people) versus late stage, and whose cancer will respond well versus whose won’t.
As humans, we like to think all of this complexity can be bent just the way we want by the sheer force of our will.
Newsflash — It’s all just f*cking random sh*t we don’t have much control over. Maybe the people who survive are lucky and the ones who die are just unlucky. On our part, we try to do everything we can to make us move from one group to the other. The million dollar question is, what things have a real impact in influencing our luck?
Just like diet and exercise and a low-stress life are risk-reduction strategies to reduce the risk of having cancer in the 1st place, (sigh, side note — how well did that work for us?), similarly, our actions can help with slightly modifying our luck in dealing with cancer.
I want to say that bad biology of the tumor is what kills in most cases, and our ability to influence this bad biology is miniscule. But there ARE a TON of things we CAN influence to make our life with cancer tolerable and liveable and even help us THRIVE despite what’s killing us… And sometimes these can help us survive longer too. This is DEFINITELY life-altering. Remember that life is slowly killing all of us anyways.
Here are a list of random things that came to my mind:
Let the diagnosis sink in, but MOVE ON. Cry, wail, scream, throw things, break things, punch things, retreat into silence, be numb—do whatever you do to cope when you get news you cannot tolerate. But don’t live here.
Get your TEAM together — This can be I, me, myself or your entire church or village or extended community or your immediate family or the atheist group you hang out with. A counselor is a good idea. So is a cancer support community. Whoever. Get them around you. You will lose & gain people at this step. That’s life. Again, don’t live here… move on.
Get a good MEDICAL TEAM together. They need to be competent, knowledgeable and involve you in shared-decision making (if that’s your style). They can be top-notch if you can afford it, but don’t have to be. An NCI Cancer Center is always a good bet. An experienced and caring community oncologist is a great start as well. More on this later.
Join a great CANCER COMMUNITY to educate yourself, where others have experiential similarity with you and people have walked this path before you. Check out groups like COLONTOWN where people discuss treatments and clinical trials and new and emerging ways to treat disease & treatment side effects. Cancer care isn’t uniform across the country or the world. Knowing what others are getting in similar situations can help you know if what you are getting is Standard Of Care (SOC) and if there are better ways of doing certain things at specialized cancer centers. This can be life-altering. Stay away from non-scientific support groups. Stay clear of sites/people that tell you that you can juice/eat back to health.
F*CK the positive attitude. Deal with things the best you can and get help (see a counselor) when things get overwhelming.
A positive attitude is great for people around you. Tell THEM that. Ask THEM to stay positive and MANAGE their discomfort, fears and anxieties, while you and your loved ones manage your disease. That would be the most POSITIVE thing they can do for you. And they can read all the cancer advice (or file them in a folder that they can delete at the end of each day or week) for you and work on THEIR self-control so they aren’t forced to vomit that at you every time they see you or talk to you. Instead, they can babysit your kids (if they are close to them) or play with them, or arrange a meal-train for your family or arrange to have your house cleaned or do laundry for you or manage the cancer-news for your friends circle, or stay away if they refuse to get Covid shots— whatever works for YOU. No you don’t want to hear about lemon rinds and coffee enemas, but could they help schedule your child’s soccer practice or play date? And no, if your friend’s dog or your work colleague’s distant relative died from the same cancer, you can keep that story to yourselves. And please don’t make us comfort you because you can’t deal with OUR cancer. The world around you needs to work on THEIR positive attitude when you say, sorry I don’t feel like calling/texting/doing any of the stuff YOU want. Cancer patients & caregivers would feel so much less stress and have so much more healing if the rest of the world was a bit more POSITIVE and let us be.
Get a SECOND OPINION ASAP. You read AMAZON reviews before you buy a chew-toy for your pet and shop for the best deals for bird-seed. Use those same skills to find the best care for you. Ask your support group how to go about it if this is overwhelming. Only your LIFE is at stake here.
Be REALISTIC. With advanced disease, especially with CRC, the chances of living long are bleak. The medical advances aren’t getting here fast enough. People are dying daily. I know we have stories of people living longer and cancer-free. Great stories to fantasize about and aspire to. But be REALISTIC about how much this fantasy can become real for you. As they say, hope for the best, but prepare for the worst. Don’t leave any stone unturned to get to the most realistic approach to YOUR disease. If possible, see a counselor early on. Get on virtual visits once a month. Get your family to see one too. When you buy into the fantasy that everyone with stage IV CRC can be cured, you may miss out on things that can be life-altering for you. A cure isn’t the only outcome worth living for. Stable, manageable cancer that allows you to have a liveable and enjoyable life is a great goal.
Ask the care team about GOALS OF TREATMENT: Spend some time discussing this. Revisit this discussion every 6 months. Find out if things have changed. Re-align to the new goals of care when things change. Discuss this with your carepartner and your family. Talk to a counselor when goals of treatment change.
Find out all the different ways to COMBAT SIDE EFFECTS. Report treatment side effects promptly. Let your care team tell you that they are expected. You don’t have to deal with things you don’t have to deal with. Exercise and physical activity are great fatigue-busters. I know, weird, right? But listen to your body. Do what you can. Get physical therapy (including pelvic floor physical therapy) to help manage long-term treatment side effects. For survivors, make sure to check out exercise programs like LIVESTRONG at the local YMCA. Tell your team what supplements you are taking. These may have drug-interactions with your treatment that may be important to consider.
ENJOY YOUR LIFE as much as you can DESPITE cancer. Don’t beat yourself up that you got cancer and if it is progressing despite everything you are doing. Nothing you did made you get cancer. That piece of cake you ate DID NOT cause the progression or Signatera to become positive. That one drink did not make your liver mets grow so fast. Moderation is key. Don’t dwell in the pre-diagnosis past when your life was idyllic. Grieve its loss, but move on. We don’t have a time machine yet. You are doing everything to live longer, but live a life that’s enjoyable too. Eat a balanced diet as much as you can, add in things you love to eat once in a while. Have that occasional drink. Focus on keeping life stress-free as much as possible. Enjoy the small things. Find a purpose. Chat with a fellow cancer-patient. Vent about cancer-life. Having cancer is super stressful. Dealing with it alone shouldn’t be allowed. JOIN a cancer community. Be kind to yourself. Your body is going through so much. Be kind to it too. After all, it’s the only one you have.
Hopefully, these tips are useful to you.
Watch this space for posts like this — my personal opinions, as well as posts on what’s hot about CRC from the Twitterverse and what’s going on at various cancer or oncology conferences.