My public journey through breast cancer is well-documented on this site. (Key the words “breast cancer” into the search bar and you’ll find the posts.) Today, I’m yapping about the collateral damage that can accompany a diagnosis. You know, cause having breast cancer is just. not. hellish. enough.
To start, when newly diagnosed, you focus on the right now of treatment, as do the docs and the rest of the medical team (Yep, with diagnosis, you get a team of medical professionals.). This is as it should be. There is a devastating colony of mutant cells growing within that must be stopped.
KILL IT WITH FIRE! < Pretty much my initial go-to.
So, you enter into treatment, hoping, praying, for the best. You might have surgery. CUT IT OUT! You might have chemo. POISON ALL THE CELLS! You might have radiation. ZAP THE SPECIFICS! You might have post-treatment drugs. SWALLOW THE HOPE!
What you usually don’t have is an eye on what those treatments might mean after they are long completed, because you’re focused on trying to save your life. You’re trying like hell to live. You weigh your options and pick your treatment based on what you can gain, not on what you may have to give up.
What most of your team won’t dwell on is that there may be collateral damage with treatment.
What does this mean exactly?
I can only speak for myself, so that’s what I’ll share.
I endured chemo, surgery and radiation, in that order, during the active phase of ridding my body of cancer. I had an extremely successful outcome for which we were thankful. As of this writing, I am still undergoing a Herceptin infusion once every three weeks until the fall. This treatment will give me the best odds of never having a recurrence of my particular kind of breast cancer. I am also taking an aromatase inhibitor (a pill to be taken for 5-years) to help against recurrence, as well.
Let’s break it down per treatment:
Chemo at its basic level is pumping highly toxic drugs into your body in the hopes that it will kill cancer cells, known and lurking. For a gal who won’t even use pesticides on her yard or in her house, this treatment was a hard pill to swallow, one I considered bypassing. Yet, after my research, I concluded to take the good with the bad.
My collateral damage from chemo is lingering neuropathy in my fingers and weakness in my hand strength. Will it come back? Who knows. The research suggests it will and I have recovered most of what I lost initially, so I have hope. But more than hoping, I actively exercise those fingers and frequently try to open jars beyond my capabilities. It’s quite the sight.
My digestive system was also compromised during chemo, most likely exacerbated by antibiotics. Next week, I am a year (!) post-chemo and am just now able to eat what I normally eat without fear of upset. Almost normal! (Garry wants you to know that I’m never normal.)
My lasting damage thus far is minimal. I still have a bit of soreness (I’m eleven months post) and some lost range of motion. I’m working on building the muscle and the soreness will work its way out. My surgeon advised I could feel sore for up to a year post-surgery. This information has allowed me to give myself the grace needed when I start to wonder if I’ll ever feel the same.
My course of radiation was modified and shorter than the typical prescription, so my post treatment side-effects have also been minimal.
I have a bit of breast soreness, but there are days I wonder if it’s surgically or radiation driven. Mostly, I accept the change and do what I can to alleviate the pain. As the days pass, the pain is abating, which gives me hope that one day I won’t have it at all.
The bugaboo about my infusions is that I am symptomatic and experiencing what are hoped for temporary side-effects, but we can’t be sure if it’s the Herceptin or the pill that is causing my side-effects. Until the Herceptin is done, we won’t know for sure, but my doc thinks, is betting, that the Herceptin is bothering me the least and the drug the most.
Until this part of my treatment is done, I won’t know for sure.
One of the scariest issues with Herceptin is that it can cause serious heart problems. Those who receive infusions also get an echo every three months during treatment to make sure the heart is strong and healthy. So far, my heart is doing great, but the possibility is always on my mind.
Her2 breast cancer is aggressive and Herceptin is a true wonder drug, allowing women diagnosed with Her2 to live long and normal lives. Again, for me, the risk of permanent/temporary collateral damage is worth the gain that Herceptin offers.
Taking a pill that causes much of my lasting pain is where most of my struggle is these days. If you want a peek into some of the symptoms this drug can cause, CLICK HERE.
Every three weeks, before my infusion, I meet with my doc and have a list at the ready of my new drug-related symptoms and questions of how long I’ll have to endure the side-effects. Each time there is discussion of the unknown length of time, because it varies per person and body chemistry, and really not much offered than the encouragement to hang in. There is some research that suggests the first six-eight months are the toughest in terms of side-effects. I’m just finishing my third month and am resolved to stay on the drug at least through this tough-out period.
I’ve experience severe muscle/joint pain, numbness and tingling in my hands (my neuropathy needed a friend!), sleeplessness, racing heartbeats, digestive issues…blahblahblah. It’s annoying as hell, but on the upside I have a newfound respect for those suffering chronic medical issues. Those folks who battle it out every day, without the option of stopping the pill that is making them feel like crud, are my new heroes. Badasses all.
The #1 bottom line with the drug is this: it is a powerful deterrent to recurrence if taken for 5 years.
The #2 bottom line with the drug is this: many women stop the drug entirely because of the side effects before making it to the prescribed 5-year mark. Many stop within two years.
I’m not judging, because I don’t know how long I’ll make it. If the side-effects stay, it becomes a quality of life issue. Do I want to struggle every day? Does taking the drug outweigh the possibility of having a recurrence? I would have answered that question with a resounding YES! until I experienced the side-effects myself. Now, I can’t be sure.
Being diagnosed with breast cancer was the beginning of an education I wished I never had to start, yet here I am. Let’s open the dialogue, let’s share our truths with each other, even the stuff that’s not so cheery, the stuff that pisses us off, so when the next person is diagnosed and dealing with everything that will come their way, a light of hope is shined in the name of knowledge.
What we are left to deal with after treatment may not be the stuff of cupcakes and vodka martinis, but together we are strong and can face whatever comes, you know, as long as no one touches our cupcakes and vodka martinis.
* Disclaimer: All information in this series is based on my personal experience and is not intended to take the place of your doctor’s advice.
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Wednesday 27th of July 2016
Dear Patti: I always love reading your journey and updates! Coincidentally, as I started reading this, I realized that it was exactly a year ago today that I had my last radiation treatment! Woohoo! I'm still kickin'! Also, still have that nasty hematoma from my surgery, but not nearly as big as the last time I mentioned it. After the doc removed 50cc's of fluid/blood, I stopped counting, but it is smaller. My post-op drug is Letrozole, with all of it's fun side effects. I had achy joints before treatment, but my swollen ankles and feet are a killer! Some days I can barely walk and keep ice packs on my feet at night while watching TV. One year down and 4-9 more years to go! Cindy
Wednesday 27th of July 2016
ONE YEAR!!! WOOT! The side-effects are monsters and I'm so sorry you're having to endure such pain. I laughed at your 4-9more years to go. Gaa! So true...
Thursday 21st of July 2016
Hi Patty. I feel like I am an isolated on an island with no information post all the treatments so it was great to come across your post on Mr Love 2 Create today. I will be reading back through all your cancer posts.
I am on year 3 after having the surgery, chemo and radiation and continuing with 'the pill' - I don't like the side effects, interesting that you have hand tingling, me too and I thought it might be carpel tunnel syndrome but it comes and goes so maybe it is left over stuff from chemo, radiation of of course, that pill. I did have to get the pill changed after the first several months - I just couldn't think clearly anymore. Changing to another brand/similar/same stuff made things livable. I don't like the side effects, I've added 30 + pounds of weight, stiff joints etc but as you say, its better than the alternative.
Friday 22nd of July 2016
Oh, Joy (love your name!), I'm so sorry you're feeling isolated. Post-treatment info is harder to come by, isn't it. It's part of what I hope to do here: shed some light on the truth of what happens next. Be well and thank you for #1: reading and #2: taking the time to share your experience.
Mother & Daughter
Thursday 21st of July 2016
I was an oncology nurse for 24 years, yet your story offered me insight. You are so right, as a health care worker our first thought is to kill the cancer, and we don't always think beyond that. Sometimes it does come down to quality vs quantity, and who am I to tell someone which is the better option. The old adage about walking a mile in someone else's shoes applies here I think.
Thursday 21st of July 2016
I understand the immediate stance of my team, of any team. That said, it is important for the possible long-term side-effects to be discussed. It is rarely brought up, except by me. Education is key, as is understanding.
Thanks for your thoughts.