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List of all of the Side Effects I deal with that wreak my QOL

macb04
macb04 Member Posts: 756
edited September 2020 in Managing Side Effects of Breast Cancer and Its Treatment

Some other thread here is taking about regrets over treatment causing loss of Quality of Life.

Heres my list of all the thing that are wrong with me since the bc industry destroyed my health.

  • Radiation Fibrosis of my L arm. Tightness that never completely goes away.
  • Lymphedema of my L arm/axilla and back ( intermittent but there)
  • Lopsided reconstructed breast despite 15 reconstruction surgeries
  • Blotchy, splotchy skin and telangectasia of my skin from rads damage
  • Lung damage from rads. When it is really quiet I can hear the gurgling from my L lung only, just at the top of my lung.
  • Heart Damage from rads despite Breath Hold Technique that causes palpitations, and decreased exercise tolerance. I still exercise, but can't do nearly as well as before. If I exercise after eating, even hours before, I can feel out of breath and faint. Now I only exercise in the morning on an empty stomach.
  • Vision- markedly worse overall, and now I have some degree of night blindness.
  • Hearing - just ask my kids, now I say what all the time. Impacts my job too.
  • I have really slow GI transit. I may get diagnosed with Gastroparesis. No other causes, not diabetic. It sometimes follows chemo poison damage.
  • Incontinence. I remember the first time I had an accident.. My mortification was complete. See HUMILIATION. I had to drive home in wet clothes.
  • Vagina - dried up and painful unless I forever take Vaginal Estrogen
  • UTI's - hadn't had one for over a DECADE before my health was ruined by the bc industry. Now feels like it happens ALL the time. See Incontinence above. Makes that worse. Sometimes I can not make it to the toilet in time now. .............DEPENDS anyone??????
  • Sex- WTF? Hardly interested and get very little enjoyment out of it. See UTI. See Vagina dried up.
  • Did I mention my brain damage..? They have a lovely catchy name for it. But damn, I can't remember what the word is! It's like sometimes my words are gone, gone gone. People look at me funny because I am fluently talking away and then WHAM! my box of words is a jumble that I quickly have to sort through. I am 4 years out from the chemo poison, so I would guess this word aphasia is PERMANENT. The onco told me after I was poisoned that chemo probably wouldn't do any good anyway........... Way to go, scca for good care. See vision/hearing and impacts my job.
  • They didn't tell me they were frying my Thyroid. My Thyroid is IMPORTANT! It's a master gland, runs your whole body. The Hypothyroidism I had got considerably worse after rads. See Gastroparesis/see hair thinning/ see heart damage and exercise intolerance.
  • My HAIR - really thinned out in the front. Who doesn't like to be a bit bald? Lets all rock that bald look. Actually I don't like to be sparse on top. ACTUALLY HATE THAT. Thank goodness for Bioidentical Progesterone. Some of the hair grew back, but nothing like what I had before.
  • Did I mention I am terrified of shots now? I cry at the dentist, and have to get the gas. Sometimes my hair is wet with my tears. I wouldn't say I loved the dentist before, but Now, it's BAD.......
  • Oooooo, how about the Rotator Cuff tear from the Cipro I was put on for a UTI and hemorrhagic Cystitis during chemo poison. ... See UTIs
  • The mutilation bothers me every damn day. That never goes away completely. Scars don't stretch. I am uncomfortable in my own skin, my body always feels wrong now.
  • I should mention I have almost no savings.I had money in retirement. Mostly gone, although I am back at work and trying to save again. See 15 reconstruction surgeries. See Rotator Cuff tear. See parking and gas for all the mostly useless trips. See bandages/gauze/antibiotics/ IVs/ high out of pocket deductibles. I am just trying to take care of my kids. They missed out alot on things other kids got. Just couldn't afford it. I was so broke sometimes that I had to hunt down change to fill my gas tank/ or get groceries. 30 dollars in change is an insane thing to dig up. I couldn't even afford Counseling, my husbands insurance wouldn't pay for it. People assume there is all this assistance available for people from the cancer industry. There is no truth to that at all. I got a 100 dollar gift card from scca, that's it. $100 dollars didn't go far at all.
  • I caused my kids harm when I terrified my younger girl one day while having a screaming fit from the tamoxifen. Gave that sh*t up. Couldn't take the mood swings and depression. My youngest was only 7 when she saw me become a deranged, crazy person. I still cringe just thinking of it, wasn't my fault, but they never warned me that could happen when they prescribed tamoxifen.
  • I don't feel safer, ever. Every time I have a new ache or pain I get afraid all over again. If I had known how bad this would get, really understood, I would have told them hell no! I am trying but constantly experiencing setbacks. This just sucks, ruins my QOL. No one told me all the things I should have known , paternalistic medicine in action. I didn't even know all the right questions to ask.

Wow, even I had no idea of the number of things that are SNAFUed. Glad I wrote that down.

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Comments

  • xxyzed
    xxyzed Member Posts: 39

    Here’s my list of all the things wrong with me thanks to breast cancer.

    1. Fibrotic left pec muscle from radiation

    2. Pins and needles down left arm from cancer in lymph nodes and resulting surgery and radiation.

    3. Mild lymphedema down left arm from cancer in lymph nodes and surgery.

    4. So much weight gain.

    5. Many, many scars from surgeries.

    6. Heartburn from medication.

    7. Slow hair growth from medication.

    8. Brittle nails from medication.

    9. Ongoing fatigue.

    10. Nose and mouth sores from medication.

    11. Dry skin from medication.

    12. Reduced income earning capacity from so long on leave and in part time employment due to treatments and fatigue.

    I’m sure there is more but that’s enough for me

  • dtad
    dtad Member Posts: 771

    So sad...we need to do better!

  • illimae
    illimae Member Posts: 5,721

    My wish for you all is some relief from your SE’s and a change in perspective. Things could always be worse.

  • macb04
    macb04 Member Posts: 756

    Of Course it could be worse, but still that is an amazingly long list of terrible sh*t and no safety.

    Frankly I feel majorly abused by the the money grubbing bc industry, which is I am sure is OK with a list like this, or the one from XYZED. Our Quality of Life was torn right out of our hands.

    We Deserved Better. We have paid our pound of flesh in pain, blood and grievous suffering. Where is their progress? Where is acknowledgement of our Rights to Full Disclosure of All the Side Effects?

    I had a Right to that info, so did you All.

  • xxyzed
    xxyzed Member Posts: 39

    My perspective is fine and thankfully life goes on but it comes at a cost. I'm glad my side effects are all manageable and I can mostly function as a normal person but they are still there. I complete my current treatment soon so hopefully my list shortens in a few months. I think they can do better and improve disclosure of these ongoing effects especially in my case around radiation damage.

  • traveltext
    traveltext Member Posts: 1,055

    macb04's list of side effects is incredible and I really feel sorry for her. I'd be asking questions of my healthcare providers to find out why so much went wrong. While I had virtually no side effects from extensive treatment for a serious breast cancer, and two years later went through treatment for an aggressive prostate cancer with similar consequences, I know we are all different. For me, though, being in remission for both diseases is everything considering there is yet no cure for any cancer.


  • obsolete
    obsolete Member Posts: 338

    In sadness & sympathy for you ladies & men and all BC patients, I empathize with your pain and am disheartened by your treatments SE's.

    The common suffering of PTSD and the stages of grief following a BC dx are also acknowledged. Anxiety & emotional pain are very real, which all of you know.

    Add to your lists near-fatal PE (blood clots in lungs), not the worst of which our sisters' many treatments bring on so much pain & suffering from SE's.

    Thanks for this thread because BC patient's acceptance of initial treatments needs changing... blinded by science, fear mongering, intimidation and emotional confusion upon a cancer dx. CURES are needed, NOT more painful treatments. But would there be as much PROFIT in cures?

    BC patients' complacency with the BC corporate "for-profit" cancer industry needs further scrutiny & evaluation, as does the entire allopathic medical industry's business model. Emphasis on "for profit"... while all cancer/medical research & treatments would be better suited for benefits of the "greater good" for humanity, rather than "for profit" *.

    Best wishes to all.

    *Note: Edited to add "men" ... sorry!

  • macb04
    macb04 Member Posts: 756

    Thanks Traveltext, xyzed, and obsolete. I wrote down all the things the bc industry did that wreaked my health and sanity so that other women and men could see the true extent of the impact on my Quality of Life. There is very little transparency within the bc industry over how women are treated, how effective the treatments are versus the inevitable trade-offs of miserable side effects.

    In my wildest Nightmares I never anticipated half the things wrong with me. Like I never thought I would loose my Night Vision. That wasn't mentioned as a possible chemo poison side effect. It was only after I started going Night Blind, and I started researching it did I find there is a connection. It got somewhat better when I started taking high doses Retinyl Palmitate, but the oncology people just shrugged their shoulders. What if I can't see to drive at Night at some point? Then I will have to quit my job. I have been impoverished by the bc industry before. I don't want to be impoverished again.

  • dtad
    dtad Member Posts: 771

    illimae...sorry but your comment to macbe04 that it could always be worse seems a little insensitive! Our side effects from treatment are very real and hers are particularly difficult. QOL does matter and we are here to support each other. Validation is extremely important. Lets try to remember that!

  • peregrinelady
    peregrinelady Member Posts: 416
    Sorry dtad, maybe illimae was trying to point out (in a nice way) that despite the side effects, at least Mac is still alive.
  • macb04
    macb04 Member Posts: 756

    Thanks dtad for your support. I think that illimae has probably had a hard time of things like many of us. I get that. I am not saying I am unusual in that regard. We all have our own crosses to bear.

    I am just burdened down by so many side effects at times, that it makes really pissed off. I do not ever feel that I owe my life to the bc industry, don't ever even believe they saved me. I more often feel that people survive despite the " treatment ", not because of it.

    Just my opinion.

  • secondchancetoo
    secondchancetoo Member Posts: 12

    Heartmacb04, my heart goes out to you. As a two time veteran of this curse, I can tell you, I so relate. I am also a retired nurse as well, so seeing the inside track of the medical system is a real eye opener....to put it mildly.

    I refused most of their offerings, because frankly I have precious little faith in any of it. But, I did indeed have two mastectomies that have left me with a myriad of long term effects, tightness, neuropathy,scarring, body image issues that just won't quit, etc. that are now my companions for life.

    I declined the anti hormonals, chemotherapy, radiation for my close margin on one breast. I have absolutely no regrets regarding those decisions. If I were to progress I am at peace with my choices. Nobody that receives all of these "treatments" is guaranteed any success, that's for sure. This disease is an enormous crapshoot, and I truly believe that there is only one entity in control of our lives....and it sure isn't the breast cancer industry.

    Sending good karma your way to help you cope with your challenges

  • macb04
    macb04 Member Posts: 756

    Thanks secondchancetoo, I used to have such faith, but really I am boiling mad at times.

    I remember asking questions of the rad md, and having my concers dismissed. I should have gone, told her to f*ck off, but she was my third second opinion, and I was getting so very much sh*t and push back from the onco md/ breast surgeon and my family.

    Really they deployed unfair scare tactics and fear mongering. None of them had my welfare or best interests at heart, I was just a number at scca. A money making number.

  • msphil
    msphil Member Posts: 185

    hello I feel your pain I too suffered most all of these to today have some. But I am a 24 yr Survivor of it All Praise God. I had a pacemaker first for couple yrs then taken out ICD implanted asthma fibromyalgia hypertension allergies etc But I'm still here with husband n family. ill take side effects a choice some didn't get. msphil idc stage2 0/3 nodes 3mo chemo before n after had reconstruction my body rejected expander taken out got married after chemo before rads 7wks on Tamoxifen for 5yrs.I'm Blessed.

  • exercise_guru
    exercise_guru Member Posts: 333

    We call what you described "Tamoxifen Rage " I had it terribly it nearly ended my marriage. I would have to go in my room from 6pm on to avoid it. Effexor did help but not as much as the new eating program I follow.

    We call the Chemo Brain" Betty" Sorry to anyone named Betty but I forget everything and have terrible short term memory. I have to write things down before I leave the room or I will get into the next room and forget it.

    I also have poor vision at night and I think I am developing something in my right eye I need checked ( I am only 45)

    Also severe neuropathy in hands and numb dead foot feeling in my feet. I am trying acupuncture for this.

    Because of thiis can't exercise like I once did and haven't been on my road bike for quite awhile because of balance issues and hand pain.

    Also hate my reconstruction. It didn't turn out the way I hoped

    I also have fatigue come on after 5 often.

    Those are the worst side effects. I watched "forks over knives " and changed to their diet to try to counteract these symptoms.

    I feel for you because I often am discouraged and frustrated.

  • fredntan
    fredntan Member Posts: 237

    I grew a dead bone out of my jaw from july 2016 to nov 2017 with no one to tell me how to treat it. It was horribly painful. ONJ is a rare side affect of biophophonates. I am having slight issues breathing tonight. I fear it time to say goodbye to afinitor. The fatique is horrible. I look normal. so even my hsband doesnt really get my fatique. Every week its a new side affect to deal with..sept and oct was sinus infecrions. last week UTI. this week will be some respiratory stuff. I have had so many scans. I fear getting more CT scans. I am lucky though. I have been NED for over 4 years.

  • macb04
    macb04 Member Posts: 756

    msphil, glad you are still here, and persevering despite it all.

    HI exercise guru. That just sucks to be kept from good activities like biking because your balance is impaired. Your list of messed up side effects is too long, like mine.

    Tamoxifen Rage, hadn't heard it called that before, but that is an apt fit. I was going to go postal. I frightened myself, as well as my children. I felt almost completely out of control. I can't forgive them for not warning me. What if I had really harmed my kids? I can look back now and know I wasn't in my right mind while on that evil tamoxifen sh*t.

    fredntan, I see you are on the endless Merry-Go-Round of side effects too. I am sad to hear you are so worn out, but glad you're still NED.

    I feel for you all. We shouldn't be expected to be grateful it isn't worse. I just want a day without bc side effects dragging me down, taking up my time. That's not that much to ask, not really.

    Blessings to you all.

  • macb04
    macb04 Member Posts: 756

    I wish that I didn't feel the need to list all the side effects, I don't ever feel safe, so none of it was worth it.

  • illimae
    illimae Member Posts: 5,721

    Things could always be worse was not meant to be insensitive. It is a motto that I’ve always used to help me see the bright side of bad times, it’s worked well for me, hopefully anyone that finds that kind of thinking helpful would appreciate the reminder. If not, that’s cool too, we all deal with things differently 😀

  • macb04
    macb04 Member Posts: 756

    Well, illimae, I see you are definitely more of an optimist than me. I have had a lot of hard events happen , and having such dreadful "treatments " done has just caused such harm, to me emotionally and physically.

    Everyone has different ways to cope. Just can't swing the, it could be worse, thing.

  • macb04
    macb04 Member Posts: 756

    One more I should add is PTSD. Years have gone by and it can all come flooding back. I am never free.

  • macb04
    macb04 Member Posts: 756

    bump

  • macb04
    macb04 Member Posts: 756

    I am also loosing my hearing from the poison. Lovely, just lovely.

  • dtad
    dtad Member Posts: 771

    macb04...again I'm so sorry you are dealing with so many side effects from treatment. Our feelings need to be validated by members of this community as well as family members and MOs! My main reason for this is they need to come up with better treatment options! Whoever they are! Somehow I feel like because we are women we are just suppose to grin and bear it. We need to speak up! We deserve better!

  • macb04
    macb04 Member Posts: 756

    Thanks so much dtad. I agree, we should have our feelings and experiences validated, but feels like that is often an uphill battle.

    I think you are so right, that sexism influences how the bc industry and society at large treat us. Men wouldn't put up with half of the humiliating and debasing things done to us " for our benefit " Bullsh*t. The entire medical industrial complex makes a friggin ton of money off of each and every ine of us tortured women.

    WHY DO THOSE MEN ALL GET SO MUCH MONEY THEY DON'T DESERVE???

    THEY PROFIT OFF THE OUR SUFFERING AND PAIN. THERE WERE TIMES I COULDN'T AFFORD TO BUY GAS FOR MY CAR

    SHAME ON THEM!

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    Three companies responsible for half of all global cancer drug sales
    Here's a breakdown of the three companies that controlled roughly half of all cancer drug sales in 2013.

    No. 3: Novartis (NYSE:NVS): $8.6 billion in total oncology drug sales
    Novartis' appearance on this list probably shouldn't be a huge surprise as it's been a cancer drug powerhouse for quite some time. In 2013, it counted on chronic myeloid leukemia drug Gleevec (known as Glivec overseas) for nearly $4.7 billion in global sales, but also relied on Sandostatin (for acromegaly) and Afinitor (breast cancer) for $1.6 billion and $1.3 billion in global sales.

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  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    Mac, your side effects are devastating.

    The industry needs to do a better job of developing treatments with fewer side effects, needs to do a better job of figuring out how to minimize side effects with existing treatments and needs to do a better job on educating us about the risks & side effects of treatments, so that we can make fully educated decisions and aren't caught by surprise. It happens that MO's primary area of research is the side effects of cancer treatments. Interestingly, he appears to be a lot less aggressive that most MOs I see referenced on this site when it comes to treatment recommendations.

    But is any of this because of sexism? "Men wouldn't put up with half of the humiliating and debasing things done to us". Sorry, not true. Many men in my family had or have prostate cancer. If anyone thinks breast biopsies are bad, do a bit of reading on MRI-guided prostate biopsies. And side effects from treatment? How different is this list from what we experience with breast cancer? And I'll bet there are lots of side effects that these males patients are told about until they develop them.

    image

    As I see it, the medical community is so focused on the disease that they forget about the patient.

    "Yeah! we've cured/controlled the disease. But the patient's life is destroyed. Well, Oops! nevermind about that."

    That too often seems to be the attitude. But it's not because most breast cancer patients are women. No, it's just a general blindness in the medical community that has them treating the disease and not the human being with the disease.

  • dtad
    dtad Member Posts: 771

    bessie...I understand what you are saying about men and prostate cancer and I agree. However whenever I try to make this point prostate cancer is always the only male disease that people mention. How about all the money that has gone into male sexual function like Viagra and now a prescription drug for crooked erections? Are those really more important than better BC treatment options? Also what about all the strides made for heart disease? For a long time cardiovascular disease was considered a male dominated disease and the money for research was unlimited. Now we know that women also die of heart disease at an alarming rate but that had no bearing on the research money allotted for a very longtime. By contrast my dear cousin died of metastatic BC over 30 years ago at the age of 38. When I look a her treatment compared to todays very little is different. She had poor QOL for the ten years between diagnosis and her death just like many do now. All that being said IMO we need to speak up for better treatment options!

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    "prostate cancer is always the only male disease that people mention" Yes, and this thread is only talking here about breast cancer for women, right? It's a one-for-one comparison.

    dtat, Are you seriously complaining that breast cancer doesn't get it's fair share of research dollars? Certainly within cancer research, breast cancer gets more than it's fair share: https://www.cancer.gov/about-nci/budget/fact-book/data/research-funding

    Are you seriously saying that there have been no changes in breast cancer treatment over the past 30 years? What about the approval of Tamoxifen for early stages and prevention? The development of AIs... Herceptin... the Oncotype test... 2nd and 3rd generation chemos... Perjeta... I could go on...

    Are you seriously complaining about the strides made against heart disease because it hasn't benefited women enough? Yes, the mortality rate for men has been reduced more than for women but men used to be diagnosed with heart disease at double the rate of women which is why heart disease was considered a men's disease. Fortunately the mortality rate for women has also come down. That said, more women will die from heart disease than breast cancer and more definitely needs to be done.

    Are you aware of how much the mortality rate has declined for breast cancer? In 1995 the incidence rate was 130.9 per 100k women, and the mortality rate was 30.6 per 100k women. In 2014, the incidence rate was 125.3 and the mortality rate was 20.5.

    image

    I believe researchers need to think differently when they develop medications and consider both the effects on the disease and the effects on the patient. I think this applies to all medical conditions. There is nothing unique about breast cancer, except that it gets a whole lot of attention. We are all personally affected so we see the impact in our own lives. But people with many other diseases could say the same thing.

    I don't like making it an "us" versus "them". Lots of my family members are "them".


  • alicebastable
    alicebastable Member Posts: 1,946

    Some of us are also thems! And I've had body parts with cancer that actually get a bit jealous of all the attention breast cancer gets, even though I've had breast cancer. It's an odd feeling. But of all the fund-raising for cancer treatment and research, breast cancer is way up there compared to most others. None of it is perfect. I don't remember being promised perfect. I blame the disease, not the researchers, physicians, and technicians.

  • macb04
    macb04 Member Posts: 756

    See, I do blame those doctors, and the industry that covers up for them. My oncologist hannah linden at scca, got annoyed with me for not being obedient and unquestioning and said to me, in front of her nurse and my friend, and I quote " If your cancer comes back they are going to cut off your arm"

    I complained to her bosses, and the patient complaint department at scca, in writing. Told them exactly what she said so they had no doubt how egregiously cruel and traumatic it was for me. They could have called me to talk about it, questioned my friend as well as the nurse who witnessed the verbal assault. Instead they did nothing.

    They sent me back a form letter stating they were sorry " I wasn't happy with her care"

    Just recalling that scene makes me feel all shaky like I did that day, and reminds me that that horrible bullying woman got all the support, and that she got away with bullying and victimizing me. There is no excuse for that level of institutional neglect and cruelty.

    The system is broken.

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