Life After Cancer: Two Years After Stopping Treatment
On March 24, 2022 I stopped cancer treatment five years early. Since then I haven’t posted an update on how life is going, what my long term side effects have been, or even if I’ve had any scares mostly because I have been busy doing other things, and trying not to think about cancer as much. While there isn’t a day that goes by that I’m not in some way reminded of cancer, I don’t go out of my way to perseverate on it (as much as I can). But, since I am redoing my personal website, and haven’t done an update in two years, I figured why not throw something together going over life after cancer treatment and what long term side effects I have experienced as a result of my treatment.
Overall Life Update
Since March 2022, I finished hiking all of the trails in the White Mountain Guide, which has been a longtime goal of mine. I wanted to complete this goal in 14 months, however it took me 16 months, 12 days to hike 97.6% of the trails and officially finish all of the trails overall (I already had 58% done before starting over in June, 2022). On October 29, 2023 I finished my goal and quickly transitioned to working as much as possible. Over the course of the last two years, though, I’ve also had six month scans to make sure my cancer hasn’t returned.
Every September and February I have either a mammogram or a contrast MRI to make sure I am still NED (no evidence of disease). In February 2023, I had a small mass show up on my MRI and this resulted in a biopsy to rule out a cancer recurrence. The mass was benign, however it just served as a reminder that I will never be able to feel fully out of the woods in terms of cancer. My MRI in February 2024 showed no changes in that mass nor any additional concerns, so I can breathe easy until September when I will have my mammogram.
Having mammograms feels like a moot point for me because half my cancer wasn’t even visible on a mammogram. However, I don’t want MRIs twice a year (and that would not be necessary anyways). At my last appointment with my surgeon we agreed that I would be getting MRIs for the rest of my life to rule out recurrence.
In terms of medical appointments, I will see my surgeon every year forever, my radiation oncologist for another two years, and that’s it. I no longer see my medical oncologist because the appointments were pointless and cost me a lot of money. I was seeing her every six months since stopping hormone therapy in March, 2022, for checkups. But, all she did was a physical exam and talk to me about how I’m doing. No bloodwork or scans were done at these appointments and they cost me over $500.00 out of pocket. So, after my appointment in 2022 I chose to no longer see her.
Long Term Side Effects of Cancer Treatment
Before I get into my long term side effects I will summarize everything I had done. I had a partial mastectomy and reconstruction on my left breast and a lumpectomy, lift, and lymph node biopsy on my right. I had 20 rounds of radiation on both breasts, 12 rounds of Taxol chemotherapy, and 26 rounds of Herceptin immunotherapy. Then, I did 3 months of Tamoxifen and one month of ovarian suppression before discontinuing hormone therapy two years ago.
Hormonal Side Effects
Hormonal side effects, physical side effects, and psychological side effects are the three top categories I have experienced post-treatment. Hormonally, I am not sure how chemotherapy, immunotherapy, and hormone therapy have affected me other than to say that I am 40 years old and have been experiencing perimenopausal symptoms since 37 now. Specifically, I have been experiencing hot flashes and shortened cycles since my menstrual cycle started again in late February 2021. This is by far the most difficult side effect to live with and every month I am reminded of what I did to my body in order to eek out a few more years cancer-free.
Because I was NED when I started medical treatment for cancer (I had the cancer removed before starting medical treatment) it’s hard for me to know whether or not the medical interventions actually worked. I didn’t get to see the tumors shrink and had to take it on blind faith that my medical team’s insistence that I needed to do chemotherapy and immunotherapy wasn’t for nothing. Even though I know deep down that I made the right decision I harbor a substantial amount of guilt for putting my body through medical cancer treatment. Hot flashes and shortened cycles are hardly the worst side effects I could experience, however they are frustrating and several years early. Early perimenopause is also an unavoidable reminder that I had cancer.
There is a pretty strong likelihood that I will go through menopause several years early because of treatment. This leads to long term side effects like bone loss, cardiac issues, and a myriad of additional health problems that are related to postmenopausal life. Furthermore, it feels like I have lost a part of who I am because as a woman we are raised to believe that we were designed to have children. Even though I made a conscious choice not to have kids years ago, it feels really terrible to have that possibility taken away from me. I didn’t choose to become sterile or have menopause thrust on me years early, it was something that I wouldn’t have chosen if I had my way.
Speaking of things that I didn’t choose, I also have to live with the fact that I may have caused my cancer. Because my tumors was strongly positive for hormones (estrogen and progesterone) it’s really hard to believe that being on hormone birth control for decades didn’t play a big part in my diagnosis. And now, even if I wanted to take hormone therapy during perimenopause or postmenopause to help relieve my symptoms I can’t because any form of hormone therapy will feed whatever rogue cancer cells still reside in my body.
Psychological Side Effects
Living with the guilt that I may have caused my cancer is hard. But what is harder is living with the uncertainty that I will ever be able to feel safe again in my own body. I’ve taken to the philosophy that I have to live a lifetime between six month scans because I don’t have the gift of time anymore. I feel isolated, alone, and misunderstood by my peers and even those older than me. I feel frustrated and mad that I made the decisions I made back when I was in treatment because I have a really hard time believing I had to do the medical interventions. And most of all, I feel like there is no recovering from this. I made peace a long time ago with the fact that there is no going back to the life I once lived, and in many ways that’s a good thing, but at the same time I just wish I could be like everybody else and not be living in cancer land anymore.
The impact of the surgery on my mental health is also one that I am not sure I’ll ever get over. Being able to look at myself in the mirror and actually process what I am seeing is hard. I didn’t keep photos of what my chest looked like before cancer on purpose, but my husband has a few which were taken right before the surgery and I can’t even imagine that I used to look like that. The radiation tattoos stamped onto my chest and in my armpits, the scar next to my right collar bone, and the missing nipple, stare me in the face daily, reminders that I had cancer; ones that I can’t avoid. To believe that someone can get over cancer when all they have to do to be reminded they had it is look in the mirror is absolutely ludicrous.
Physical Side Effects
The long term physical side effects from cancer treatment are varied in severity but very much a part of my life. Besides the physical alterations and trying to process what my body looks like now, (which I am not sure I’ll ever be able to do) I have permanent nerve damage to my chest. Most of my left breast is numb and the scars that run from my armpit to the middle of my chest under both breasts are very sensitive and sore. I get shoulder pain if I carry a backpack too long, both my hands go numb at night if I sleep with my arms bent, and I have a spot below my left breast where a bundle of nerves are trapped in scar tissue causing burning pain if I do certain movements.
It took over a year for my stomach to heal from the chemotherapy and I had to take an antacid every day to minimize the reflux, but eventually I was able to transition off of it. My eyebrows and lashes went through a few more cycles of thinning and regrowing for the first six months after finishing immunotherapy, but they seem normal now, two years later. The only other physical side effect that I’ve experienced long term is my big toenails on both my feet barely grow. I’ve talked to other people who had chemotherapy that have experienced nail problems as well and although it’s a minimal side effect it’s really strange and worth noting.
The Future
With the exception of the psychological side effects of cancer, I feel beyond grateful that what I experienced, and still live with in terms of side effects, is minimal. Living a new life which began at 37 is hard, but I have such a unique perspective on things now, post cancer diagnosis, I wouldn’t expect life to be easy. I also wouldn’t expect anyone to get over, move on, or fully process cancer and I hope that other people who have been diagnosed with cancer, and are in the early stages of their new life, will see this post and feel seen.
When I was first diagnosed 3 ½ years ago I looked to those who had lived with their diagnosis for years and wondered if it ever got easier, if the fear subsided, if they were able to go days or hours without thinking about cancer, and for me the answer is sort of. I don’t think about cancer as often as I did back when I was still in treatment, but it still crosses my mind daily. I don’t feel terrified like I used to either. And it does get easier to become complacent, to put down your guard and relax a bit while you’re between scans. My anxiety rises during my two yearly scans but then as long as they come back clean, I am able to reenter dissociation land and not think about cancer as much for a few months.
