Recently, I’ve found myself increasingly interested in the aftercare for women’s colorectal cancers. Men, it’s not that you don’t concern me, it’s just that I don’t know if we have the same issues. Any of you feel as though you’re going through early menopause? One would think that 3 years out from active treatment, most of my questions would have been answered, my medical team would have me on a solid plan to treat any chronic side effects, and things would mostly be under control. On the contrary, at 3 years out I have more questions than ever about my follow-up care. Yes, I see my medical oncologist every 3 months, but that’s just because I keep getting cancer. If things had gone according to plan, I would actually be at once a year by now. When I see my onco, we chat about whether or not there’s something in a lung, quick question about how I’m doing, and off I go for another 3 months. We are still treating the cancer, but haven’t really addressed the larger scale chronic side effects. When I go in to see him for my check-ups, I’m a rubber band ball of anxiety, and terrified every time. Can you blame me if I forget to ask about a bone density exam?
No cancer is ever desirable, but there are things we’re more comfortable with, like blood, bones, lungs, and breasts. People love breasts. We suckle at the boob, are held tight to the bosom, and consider breasts to be PG-13 accordant. No one has that kind of relationship with the rectum, or the vagina for that matter. In truth, I believe it’s because we see the rectum as dirty, and most men have never actually figured out the vagina, so there’s a sense of failure there that makes it incompatible with their medical skill. On my first visit to MD Anderson I met with all of my doctors over two days, at which point I got an earful that left me somewhat catatonic for the following few weeks. Somewhere in there, a PA told me I might have some fibrotic scarring from the radiation to my pelvis that could cause sexual dysfunction, and if that happened I had options. It was part of a long list that included my 95% chance of spontaneous hip fractures in one or both hips by the time I’m 75 from osteoporosis caused by zapping my pelvis, radiation burns, the probability of being thrown into early menopause, and the side effects of the 180 chemo pills I would take over the period of 29 rounds of radiation with a 5 day booster at the end. My brain was over-served, and anything that didn’t immediately affect me flew right over my newly diagnosed head.
11 months and a lifetime later, I was out of active treatment, 6 months after that, I tried to have sex. Almost 1 1/2 years after I was told I might have pelvic floor troubles. Whatever your thoughts are here, I had been distracted by a battering of life events, and had not been thinking about my libido, but when I did, it was enlightening. The pain was so bad that penetration wasn’t even close to an option. It was mortifying, and another reminder that I got to enjoy a “new normal.” I was psychologically devastated, but because of my PT background, and years of referring other women, I knew to ask for pelvic floor PT, which had a huge impact on not only my sex life, but also my bowel functioning. Remember, it’s all connected, but if I hadn’t have asked, it wouldn’t have been offered. Why wasn’t it offered after I had healed from my radiation burns, or as part of general follow-up care, because regardless of if you’re having sex or not, anyone with that much trauma to the pelvic floor should get a PT referral.
The first day of my last period ever was was the first day of my chemoradiation at MD Anderson in June of 2015. The powers that be are a real hoot, aren’t they? That was almost 4 years ago. Am I in menopause? Who knows. I have hot flashes, or spontaneous scorchingly high fevers for shortish duration, occasionally or with some regularity depending, and sometimes I feel a little crazy. Everyone, meaning doctors, asks about my cycle, and everyone accepts that the radiation fried my ovaries, but beyond that, no one seems too interested. Remember how I said I was told that I would spontaneously break one or both of my hips someday because of osteoporosis from the radiation? Has it ever occurred to anyone to request a bone density exam for me? No. And before you get on your uppity old high and mighty horse about me being my own best advocate, let me just tell you that I’m fatigued with being my own best advocate, and would like some help.
Where is my care pathway? All of my friends and clients with breast cancer have had ongoing care pathways, and comprehensive follow-up for the chronic side effects from treatment. So seriously, where is my care pathway? A client was telling me the other day that her osteoporosis following radiation from breast cancer had reversed to osteopenia because of a few years of a bone drug, and true dedication to physical activity. This was excellent news. How did she get her first bone scan? A referral from her oncologist. Another friend post-treatment for breast cancer was telling me about her hormone treatments due to being thrown into menopause from her cancer drugs. How did she know about her hormones? Because of a referral from her oncologist. Did either one request these referrals? No. They were part of a care pathway.
As a 47 year old female who suffers side effects from a somewhat debilitating cancer, I am sitting around wondering where my care pathway is, and why I’ve had to figure so much out for myself. Bowel cancers are on a meteoric rise in the under 50 population, which means a lot of younger women are going to be living with the chronic effects of treatment. What are we doing for us? I’ve had excellent ongoing care for my recurrences from my medical oncologist in Austin, but he is young, and he looks at me and thinks I’m doing amazingly well, generally. My menopause, bone density, and sexual function are not on his mind, but they should be, because I’m pretty sure that my PCP is assuming this is an oncological issue, and I agree with her. A quick Google search provided me with at least 10 different breast cancer resources in the Austin, TX area, if I expand that search nationally the options are staggering. The same search for colorectal cancer resources provided 2 specific ones through our main cancer centers, and I can tell you right now that those are mostly lip service, then a dozen general cancer resources. Otherwise, us bowel cancer people are doing it for ourselves. The online community is thriving and knowledgable, but it has taken me 4 years to track those communities down. 4 years where I struggled. We need to fix this.
While I continue to be unimpressed with the guidance I got on diet, exercise, and general solutions for common long term side effects of treatment, I am even more disappointed with the the attention paid to my women’s health issues. They are no less devastating or important than those of our breast cancer counterparts, and have been largely overlooked in cancer care. With the rise of colorectal cancer in the under 50 population, it is imperative that we begin to develop the appropriate chronic care pathways for people who have lived through treatment, and I think it needs to start immediately.