Post-mastectomy pain-

As many of you know, I had a double mastectomy last year. Not really a difficult decision given what I was facing, but traumatic nonetheless. Originally, I had planned on reconstruction at the end of treatments. So at the time of my mastectomy, I was fitted with tissue expanders. It was quite odd to go into surgery with breasts and come out with “foobs” of sort. Little empty breast implants waiting to be filled with saline, at regular intervals. The first visit to the plastic surgeon was to remove the drains that have been inserted to keep fluid from building up in your chest wall…little did I know it was also for my first fill. It was a bit daunting to see the syringe come out! However, you’re pretty numb across your chest so I didn’t feel anything but pressure. With that being said however, after the fill my chest revolted. See the expanders are there to do just what their name implies- stretch the chest muscles to accommodate your “real” implants. Well as we were walking out of the office, my chest started to let me know it didn’t appreciate it. The best way to describe it – a charley horse sensation all centered on your chest. Yes that’s as painful and uncomfortable as it sounds. With every fill up (fill’er up doc!!) the pain would come but then dissipate just in time for my next fill. During this time I also starting having pain under my expanders and in my ribs. Finally I was happy with my size and chemo began. All through treatment I was in pain from the expanders. I could feel the hard ridge of them and my ribs were killing me. So then I thought about using my own tissue to reconstruct rather than implants. My logic was they wouldn’t have to be replaced like implants do and perhaps more comfortable. Part of that was driven by the fact that steroids were making me gain weight despite my lack of appetite. At the time of my plastics consultation I didn’t have enough tissue on me to spare, but that all changed thanks to miserable steroids! Anyhow, after treatment ended back to plastics I went with the thought of NO implants, but instead fat and tissue grafting. Well….best laid plans and all that. How many surgeries? How long of a recovery? In the end I opted not to reconstruct at all. Yes I’m part of the Flat and Fabulous Club !

Back to surgery I went, this time to remove my expanders and my full hysterectomy. It was such a relief to get those damn expanders out. It wasn’t long before I realized that removing them didn’t take care of the persistent rib, arm and side rib pain. Eventually I was diagnosed with Post-mastectomy pain syndrome. What is that you ask? Persistent pain stemming from how extensive a mastectomy is. It can cause neuropathic pain which is what I’ve got along with muscles that like to cramp up from me guarding my ribs. It all adds to the continued fatigue I’m struggling with. I spoke to my oncologist last week and we’ve changed my work schedule, meds and I should be starting physical therapy soon. I was also advised just how long recovery from treatments can take. Up to two to three times the length of treatment. Yikes. I told her that I wish that oncologists would educate patients to survivorship. Granted at the time of diagnosis we’re all pretty much focused on one thing. Killing the cancer and getting on with life.

Anyhow- if you need more info on PMPS here’s a link. https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/pain/post-mastectomy-pain-syndrome.html

As always #fuckcancer

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4 Comments

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  1. Thank God, your day to day fight is ending, mine is beginning, can i pick up here posting, i think it will help

    Liked by 1 person

  2. Nah, the electives section of medical school for oncology specialization gravely needs a make over. The more ancient curriculums from the 1970s and 80s still snake into our healthcare community mainly via the older white guy demographic. My current onc falls into this group, but he’s very good and leads many cutting edge clinical trials, so no complaints – he’s very knowledgeable in integrative cancer care, and takes personal interest in my wellbeing. Yet, if I weren’t also keeping up I do not think he suffers through patients who do not take an interest in their own health. It’s give and take between patient and doctor, and in some way it’s up to us to lead them to giving information to us we sorely need. But, each one of my doctors, nurse practitioners, nurses, radiologists, etc., after I get the sideways Scooby-doo 👀 blank stare for asking informed questions, if they haven’t gotten these questions from other patients. Most acknowledge “Rarely.” Some say “no, never.” And the reason? They’re used to us not wanting to know. This shocks me. You and I and other people who want to be involved in the decisions made about their care are the outliers apparently. But I suppose it’s up to us then to help our care teams know what would be helpful to share even if people do not want to know, but still need to be told. We live in our bodies. Our care teams get to know us, along with their many other patients, all,through a few short visits and our films and other tests. Dare I say, patient know thyself?

    #fuckcancer indeed, my dear comrade.

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