Radiation, The Aftermath That Never Ends

[Reposted on October 12, 2012.]
For a long time, complaining about the long and late-term side effects of radiation was a frequent theme on this blog. I haven’t bitched about being barbecued for a while now. That’s not because everything is just ducky, however. It’s only because (a) I got sick of talking about it, and (b) the problems it has left me with are a daily, constant presence. Oy, already…

A little background. First of all, this image here is only partly accurate. Yes, that is a radiation therapy gizmo, also known as a linear accelerator. For all you particle physics geeks out there, yes, linear accelerators are also known as ‘atom smashers.’ This is not a comforting thought when you are lying on the (of course, completely uncomfortable) table, with this massive thing that looks like a huge camera lens focussed on you, shining its little green crosshairs on your breast. That’s the other thing wrong with this image. You are not modestly covered up with a hospital gown. You are naked from the waist up. And the crosshairs are shining on your skin. And it’s cold in there. And you’re usually barely recovered from having some portion of your breast whacked off, so you have a hard time getting your arm over your head. And you have little tattoo dots on you, so they can aim the crosshairs at them before they zap you with death rays. But other than that…

Oh, and I actually found a web page describing how to make your own little magnetic linear accelerator at home. But I am NOT including a link. As if…

So, about four weeks after half my right breast was surgically removed, I had external beam radiation, for three weeks, per the Vancouver Protocol. This protocol is for patients with early breast cancers that can opt for lumpectomy (which was a slab-ectomy in my case). Standard, old-style radiation protocols call for six to seven weeks of radiation. The Vancouver Protocol uses slightly higher individual doses (called fractions) and cuts the number of visits in half. It also seems to lead to fewer nasty burns while you are having it, because by the time you start turning red, blistering, peeling, glowing in the dark, feeling like you want to bite someone, you’re almost all done. This was true in my case, as far as skin issues were concerned. Of course, no matter what kind of radiation you have, some of the side effects don’t start to show up until radiation is finished.

Radiation destroys cell DNA. The basic premise is that cancer cells don’t have the same ability to repair themselves that normal cells do. So, they are hoping that they zap you enough to damage the cancer cells and cause them to die, before they damage too many normal cells. But of course, radiation does damage normal cells, and even if these cells repair themselves, the repairs don’t return them to their pre-barbecued state. This is particularly true for the muscle, tendon, skin, lung, lymphatic and other soft tissue cells that happen to get in the way of the death rays. The repairs our bodies undertake are imperfect; instead of nice, brandy new muscle cells, for instance, the body may end up replacing the damaged tissue with more fibrous tissue that doesn’t act like undamaged muscle tissue. Fibrous tissue isn’t as stretchy. Fibrous tissue sticks to itself, a lovely phenomenon called adhesions. In other words, scar tissue. The scar tissue you see along a healed surgical incision is this kind of stuff. You can’t see the scar tissue that you end up with inside after radiation, but you can sure feel it.

I don’t know about your radiation oncologist, but mine was, shall we say, less than informative. And that’s putting it very, very politely. Let’s just say that informed consent was an unknown concept with this dude. Denial he was well acquainted with. Following is a list of problems I developed during, after, and waaaaay after having radiation. I was pretty much told that radiation had nothing to do with nearly any of these problems. But I know better. Research backs me up. So, because my rad onc was essentially a lying sack of unsmashed atoms, the only help I ever got from him for any of these problems was a jar of Silvadene. And actually the nurse gave me that.

Radiation Problems:

  1. Massive, body-slamming fatigue, which started after the 7th treatment. I haven’t been the same since.
  2. Folliculitis; this appeared as a bunch of teeny red blisters that weeped, and all my little skin hairs fell out. Bizarre.
  3. Burn, baby, burn. No explanation necessary.
  4. Decreased red and white blood cell count, suppression of immune function . This wasn’t even checked by the rad onc. Had to get my primary care doc to order the lab tests. Duh.
  5. Massive, extremely nasty respiratory infection by day ten of treatment. Not uncommon. The radiation field is over one side of your upper respiratory system, for one thing, and for another, your immune system is whacked. In the midst of a hospital complex that housed roughly 1600 doctors, no one at this ‘comprehensive cancer treatment center’ was capable of confirming the diagnosis or writing me a prescription for Zithromax. Instead, I had to crawl home, call my primary care doc on a Friday afternoon, beg them to squeeze me in, and get treated. Honestly, I would have even spelled Z-i-t-h-r-o-m-a-x for the rad onc, if that’s what his problem was.
  6. Bright red skin, big, blown-up armpit. This occurred about 3 days after I finished radiation. I remember that the armpit theme became a hot (literally) topic with my online radiation group. Sheer, unadulterated misery. At its worst, I couldn’t bear any pressure whatsoever over my barbecued self. All I could do was lie in bed, naked from the waist up, and whimper a lot.
  7. Fatigue, fatigue, fatigue. We’re in the post-radiation wasteland from here on out.
  8. Swelling, swelling, swelling.
  9. More upper respiratory infections.
  10. Continuing low red and white blood count, whacked out immune system. Now we’re about nine months post-radiation. Was also on tamoxifen by then, which just added to the fun.
  11. Signed up for a research study on post-treatment fatigue for folks with breast and prostate cancer at U-Conn Cancer Center. GOD BLESS YOU, YOU GUYS!!
  12. Developed chronic cough and shortness of breath. This was about a year after radiaton. After lots of back and forthing and ass-covering ambiguity and chest X-rays and CT scans, was diagnosed with asthma/acute bronchial inflammation, and told I had scar tissue on the pleural covering of my lung in the radiation field. Pulmonary function tests were, thank heaven, normal. Got drugs. Felt better. Felt pissed off at rad onc all over again.
  13. Meanwhile, had slight lymphedema early on, which turned into chronic axillary cording. Oh, goodie. Had bowstrings from my elbow through my armpit and down the right side of my trunk. My chest muscles felt like singed shrink wrap. I couldn’t raise my arm over my head. I had PT for three months. This all started immediately after radiation and continues to this day.
  14. Chronic adhesive capsulitis in shoulder, chronic spasms in trunk and chest muscles. My daily nemesis. Wake up every day feeling like my right side has been squashed by an elephant. As long as I stretch, play with my Theraband and take pain meds now and then, I can function. I also had to change my computer mouse for trackball thingy.
  15. Weird, occasionally sharp breast pain. Sometimes I get these incredible charly-horse spasms down the front of my trunk, from collarbone to waist, on my right side, when I bend over too quickly to pick something up. Still happens. Intensely nasty.
  16. Still have fatigue now and then. More now than then. Still taking neurostimulants. Also still have trouble sleeping well. There’s nothing quite like insomnia when you’re exhausted. Really special.

So, there you have it. Well, there I have it. I hope you don’t, but do tell me if you do. All I can say is that you’re not alone. It’s been three-and-a-half years since I finished radiation. Radiation has not, sadly, finished with me. I’ll include a few helpful links below.


Some links:
Arm & Shoulder Pain After Breast Cancer
Shoulder girdle exercises
Coming Up for Air — some details about soft tissue pain, lymphedema, cording, and respiratory side effects from radiation.
Info about cording and axillary web syndrome. Also a great resource for lymphedema.
LymphNotes.com. Another good resource about lymphedema.
The F Word. The nasty, but necessary, truth about post-cancer fatigue.
Adapting: Practical Stuff for Hands & Arms. Trackballs, ergonomic computer keyboards, and other stuff for those of us with impairments.
Losing It — And Trying to Get It Back. Fatigue and cognitive dysfunction revisited. Except I was even more pissed off by then.
Clinical Implications of Pulmonary Changes After Breast Cancer Radiation. Oy.


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This entry was written by Kathi, posted on Wednesday, March 21, 2012 at 03:03 pm, filed under Fatigue, Lymphedema & Cording, Pain & Neuropathy, Radiation . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

47 Responses to “Radiation, The Aftermath That Never Ends”

  1. Oh Kathi,

    I’m so sorry you (and so many of us) had to suffer through radiation. Your radiation onc makes me so angry! It’s bad enough to go through being burned alive, but to have a doc that is clueless or won’t clue you in is heartbreaking. I’m sorry that there isn’t a better mode of treatment. My radiation was the old style, 33 days.

    I remember, all too well, the lining up of those gizmo thingies (sorry, I’m not as good as you about the terminology) on my tatoos.

    Radiation sucks.

  2. Thank you, Beth. More fuel for the informed-consent, patient self-advocacy fire. Honestly, despite the advances that have been made in much more targeted radiation, radiation seeds, etc., standard radiation still strikes me (as does much of cancer treatment) as remarkably crude. Let’s hope cancer treatment gets a lot more sophisticated in the near future. There is just too much collateral damage with our present options.

  3. I think radiation side effects tend to get played down compared with chemo. We all know the chemo will make our hair fall out, put us into premature menopause, make us puke, blah, blah, blah…. But way too little attention is paid to this. I think it’s probably gotten better since I went through 11 yrs. ago, but still it’s not enough!

  4. Dayum. I’m profoundly grateful I didn’t have to have radiation. And that working with a myofascial massage artist has kept my mastectomy site free of adhesions. Not that anyone connected with the local cancer center suggested that therapy. Or that insurance pays for it. Just more of my self-advocacy. I’m so sorry you have this constant irritant/reminder/PITNAA (pain in the not-ass ass).

  5. LOL, Chandra!! Yes, it is a PITNAA! The only thing I can say is that I know it could be worse. But yes, I do think that radiation side effects continue to get soft-pedaled. And shouldn’t.

  6. I agree with Julie that radiation is played down compared to chemo, but let’s face it – both kill good cells too. Both have terrible side effects. Both are beyond nasty and I wouldn’t wish either one on my worst enemy.

    I did not have radiation, but my mother did and I closely observed what she went through. Plenty of unpleasantness.

    Thank you for this honest account of your experience with radiation. Like many things cancer related, it’s never completely over even when it’s “over.”

  7. Kathi,

    Cold comfort but you are not alone. It’s been dreadful, and it just gets worse. And people just look at you as though you should just snap out of it already.

    I used to think of I could just have a few days off I could catch up with my own life, let alone work, but now I know I never will. Entropy is the order of the day.

    So it isn’t that we are weak and just not trying, this is real and it sucks…

    Anne

  8. Thanks, Nancy. Most of the treatment for breast cancer is about as subtle as a sledge hammer. And we’re left with the bruises.

    Anne, I am touched by your comments. Yes, I always, ALWAYS feel like that — that if I just had a few days off, I could catch up. And you’re right. I never do. I’ve at least been able to keep a roof over my head, for which I’m thankful. And yes, people are astonished that we’re not ‘all better.’ Sigh. And it does suck. When I think of how glowingly healthy I’d always been, I know that this is just the crummy luck of a crummy draw. Thanks for your empathy. It’s much appreciated.

  9. Hi Kathi,
    This sounds so absolutely horrible! I am so incredibly lucky that I never had to have radiation! I am still thanking my lucky stars for that! It really puts side effects of treatments into perspective that is for sure!
    I wanted to suggest something to you. My naturopath has made his own gel specifically for radiation (he is quite well known for it actually in the naturopathic circles) and it is called “Ray-Gel”. A friend of mine who had breast cancer used this during her radiation treatments and she came out of it without all of the burning etc. It might help give you some relief. I am sure if you contact him he can send you some in the mail. His name is Dr. Noel Peterson at the Center for Traditional Medicine (myctm.org) and he is simply incredible and knowledgeable and I give him credit for my health today. He has saved many lives.
    My heart goes out to you dear one. I can’t imagine how much this must affect your life.
    Many healthy blessings always.
    Laura

  10. Kathi, I am sooo sorry your beginnings of lymphedema turned into cording. That sucks. I hate what radiation does to axilla. There ought to be a law against it.

    Thank you for the links to helpful resources. I’m sure they will help many people no matter how far they are from their radiation. The “F word” link really caught my eye, lol.

    I wish my surgeon had told me early on that I couldn’t get an implant on the side that was radiated. I might have opted for a mastectomy instead. But I can’t look back. I won’t look back.

    You’re a gem for bringing this hidden epidemic to light. XXX jan

  11. Thanks, Jan. My shoulder & trunk have been really bad this week. Starting to feel better. I’m very interested in that lipo-transfer technique for breast recon. No scars, no implants, no flap grafts, no long surgeries. Radiation doesn’t matter. I still have all my skin, so I’d probably be a good candidate. Going to look into finding a surgeon who does it around here.

  12. Hi Kathi. I am very sorry to hear about your ongoing grief from radiation treatment. I also had radiotherapy (5 weeks – using a technique that somehow compensated for the fact that I’d had a post-mastectomy implant on the relevant side). It’s way too soon to tell if I will have long-term side effects, but after reading your post I feel forewarned of the possibility. One thing that helped me, I think, was that the team at the hospital where I had the treatment portrayed radiotherapy as a big deal and were careful to discuss potential side-effects, including respiratory issues. Once I started to show signs of burning, the nurses also kept me back for half an hour after each treatment to examine my skin and give me a ‘soak’ – this involved lying on a recliner while bucket loads of sorbolene were slathered on the radiation field and covered with wet bandages, after which the lights would be switched off and I’d be left to snooze for 20 minutes! This seemed to help my skin and also helped, I think, by making me feel like the treatment was being acknowledged as tiring and something that required careful (and caring) follow up. I also suffered that weird folliculitis you mention. And the saga continued after returning to Darwin post-treatment, while still covered in burns (which I was covering – as per nurses’ instructions – in a complex combination of unguents and dressings). This kind of moist environment can fester something dreadful in a tropical wet season. Let’s just say that within days I was covered in a horrible rash and urgent steps needed to be taken to prevent it going fungal (a very real risk in these parts!). Ah, the fun never stops. Thank you for telling it straight!!

  13. Liz, it’s so good to hear that you were warned of the potential problems, and that you were looked after! It makes all the difference. It doesn’t prevent things from going awry, but at least you are better prepared when they do!! Thanks for sharing your experience. Hopefully, it will help other folks who develop problems to understand why, and to get help for them. Good luck, by the way. I hope you get off lightly over the long term.

  14. Kathi,

    Thanks for sharing all your pain. I hope and pray that soon all the problems subside. It is very important to have good practitioners during all this. I am sorry that you got such a >>>> of a so called professional.

    Chris K

  15. Thanks, Chris. It’s important to for us to know the truth & to tell the truth. And I’m feeling a lot better right now!

  16. I had a pretty nasty rash towards the end of my radiation, but other than that, my big side effect was boredom–and depression. I felt more like a cancer patient in radiation than I did in chemo. They need to figure out a way to set up those table to emulate recliners, I say. 😉

    I had that you’re having such issues–I’d never even heard of cording til now. I totally need to google it.

  17. Hey, Wendy. Yeah, those tables you lie on for radiation are just awful! Mine was an open metal grid. No cushioning. Lovely. There’s info on cording in a few of the links below the post. Step-Up/Speak-Out has some, as does Lymphnet.

    It all sucks.

  18. Reading your on-going radiation saga took me back to my miserable complications post radiation, even though it took place nearly nine years ago.

    I completed my radiation treatment with fairly bad radiation burns that didn’t seem surprising to anyone but me. As a result, the “boost” treatments that I was supposed to receive in the final days of my scheduled radiation plan were cancelled due to the “breakdown” of the skin on my chest wall (why does that sound like it was somehow my fault?).

    Fast forward one month from the completion of treatment, persistent low grade fevers, skin on my chest is (then) completely shredded and looking terrible and scary. My docs tell me it is all within the realm of normal following radiation treatments, and they assure me that it is safe for me to travel across country (by plane) for a family vacation. I travel to Boston only to awake the next morning with a ruptured abscess along my scar line which landed me in the hospital on IV antiboitics which was only the beginning of this long, scary, post radiation tale. I will spare you the many details, but 9 months of non-healing wound care along my mastectomy scar line was finally resolved (after 6 weeks of daily hyperbaric oxygen therapy – which did not resolve the problem) by a rib resection and reconstruction of my chest wall, after finally determining that the underlying problem by osteo-necrosis (i.e. dead bone) of the rib which needed to be removed in order to heal. All I believe as a result of too much, or perhaps misdirected radiation.

    So, yeah, I hear you. Why aren’t we warned, or at least told of the possible complications that can occur during or following radiation? Seems like we should be entitled to know what lies ahead.

  19. Good lord, Sarah. That’s just awful. I don’t know what is up with some rad oncs & why radiation gets soft-pedaled. I really don’t. We are absolutely entitled to know what might happen. It’s call informed consent. I’ve known other women who’ve ended up with rib fractures & necrosis. And I’ll tell you, I’ve also read about how some of the linear accelerators are not well-calibrated or checked for proper working operation, too. It takes a lot of precision to get it right, and even when they do get it right, it’s an awful form of treatment. I hope you are all right now. Thank you for sharing this experience.

  20. How could they sell thousands of women annually on radiation if the truth got out? Thanks to Kathi and all the com”mentors” for their candidness. Changes will only come for DCIS/breast cancer treatment when enough women demand it! I have been saying NO to rads for over 2 years despite the hard sell and that their is very little harm, damage, discomfort, pain, short & long-term repercussions. Doctors tout only benefits and statistics of lowering recurrence. They fail to also tell us that our chances of an invasive recurrence is actually higher (according to some studies) Please read my story/perspective at http://www.dcis411.com ~ Peace and health to all ~ Donna

  21. Here, here, Donna. And thanks for sharing your link. The aftermath of radiation has been the primary bane of my post-cancer recovery. And how few of us ever get real informed consent about it?

  22. […] http://accidentalamazon.com/blog/2012/03/21/radiation-the-aftermath-that-never-ends/ […]

  23. Can’t believe what I’m reading here. And here I am lamb ready for the slaughter – about to folllow another less than professional oncologist suggesting that I do 5 weeks of radiation after a lumpectomy wich concluded pre- cancer cells DCIS so I can reduce th risk of reoccurance wich is only 20%!

    Form what I read about – the hell you have been through and my cancer is level 0 pre- cancer I shouldn’t be considering radiation at all. Why are doctors lying to their patients and conversions them that such brutal thing as radiation is good for you???

    I’ll be seeking second opinion for sure. Thank you all for sharing your stories.

  24. Playnice, I’m glad you found your way to this post. It’s important to get all the info you can and to feel that your rad onc is telling you the truth about long & short-term side effects & is prepared to help you deal with them. If you had nice wide clear margins after surgery, that makes a big difference. And it’s also good to know the truth about your recurrence risk. If you can live with a 20% one, then perhaps you can live without radiation. Each of us has to figure it out for ourselves. Good luck & ask lots of questions. And ask about the Vancouver protocol, which is only 3 weeks long. That’s what I had & I’m glad I did. And even with that, I ended up with all this nonsense!

  25. Thanks Kathi,
    I will ask about the Vancouver protocol as well as Van Nuys Prognostic Index, which I found about in another blog https://sites.google.com/site/dciswithoutrads/van-nuys-prognostic-index . It looks like in same cases radiation treatment is not needed as there is a very low risk of reoccurring and there are a number of other factors to consider before treating everyone with radiation.

    Will do some more digging and will share if I come across more useful information.
    Keep spreading the word and build awareness. I’m lucky I come across your blog in time 🙂

  26. Yes, Playnice, the Van Nuys Index really helped me get to the bottom of my real recurrence risk & decide to go off tamoxifen.

  27. Thank you Kathi…. I too wish I had the kind of info we are able to share now through social media. I would have made a different decision when it came to the rads for the BC. My BC was a direct result of full mantle radiation treatments received in 1983 for Hodgkins Lymphoma. The overlap of additional radiation for the BC burned my brachial plexus. Leaving my right hand and arm useless, and with extreme nerve pain, stinging, burning, tingling, stabbing……never stops, day/night… Is even part of my dreams… And of course many other good cells were damaged, leaving multiple other problems, issues and lots of pain and weakness. Damaged my heart and lungs. I even went through a lung resectioning because of false spots/scars seen from the rads. It was not lung cancer as they automatically assumed. That surgery was 100 times more painful than my double mastectomy. And has left behind it’s additional scaring problems. So…. We are all able to post our experiences for others to read and research prior to deciding on treatments. And your blog is the best I have found. I know you have helped many. The more we all share our experiences the more we can educate those unfortunate newbies to the hate crimes of cancer and it’s treatments.
    Much love and thanks to you Kathi!!
    Stay strong,
    Cindy

  28. Treatment for Hodgkins is a bear, Cindy. I’m so sorry you went through all that. Thank you for sharing this. I had a friend who had Hodkins twice! Once in high school, then again 20 years later. Never happens, but it happened to her. They could only do chemo because of the first treatment. Amazingly, she is okay now, almost 20 years after 2nd round. Oy…

  29. Although I hadn’t read this post and wasn’t aware of some of the SEs you mention, I was aware of plenty of potential SEs. Like Playnice, I had only a single stage 0 lesion and I thought WBI was overkill.

    My BS told me about IORT and that’s what I opted for. There were some short term SEs like fatigue, and I still get some soreness but that have occurred from surgery alone. That’s all.

    Time will tell if IORT was “enough” but I was comfortable with my decision. Not everyone qualifies for IORT but for those who do, IMO it’s worth seeking out.

  30. GJ, I hope you don’t have any long-term effects. IORT is supposed to be easier in that regard. Let me know how you do.

  31. Boy, the radiologist I saw this afternoon REALLY did a hard sell to persuade me that I should have the six-week course of radiation for low-grade DCIS with huge excision margins. Thanks in part to your information, Kathi (plus the Van Nuys Prognostic Index, yay!), I declined.

    She downplayed and outright denied the side effects: there aren’t any, according to her. Not with the whiz-bang modern techniques. Lung problems? None! Ribs? nah. No one gets blisters. Oh, but there is a teeny problem that it will increase the risk of Sarcoma (death sentence, anyone?).

    Wow.

    Meanwhile, I couldn’t get the picture out of my mind of the one patient in the waiting room: a Chinese lady in her 50s or so. She came in walking with excruciating slowness, and sat with her elbows braced on her knees, staring at the floor. Like she was at the very end of her strength, and nearly comatose with exhaustion. It was frightening. The clerk bustled over and congratulated her for being at her “last treatment,” chirping cheerily as the poor woman didn’t even flicker an eye in her direction.

    Now, she may have had a dangerous cancer that would justify this harsh treatment regimen, but it sure cast a hard light on the consequences.

  32. Wow, Gail. Amazing. Yes, thank goodness for the Van Nuys Prognostic Index. I didn’t find that until after the radiation, but it helped me make other decisions. We ARE grown-ups, after all. And we are entitled to make up our own minds. I’m including a few links here about the VNPI:

    Treatment Decisions for DCIS

    Univ. of Southern Cal Study on VNPI, DCIS Excision & Radiation

    Significance of VNPI in Treatment of DCIS

    Thanks, Gail, also, for the link you included, which further reviews the USC study. I’m adding it here:

    VNPI and DCIs Management

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  34. how about the side effects from the 5 Day Radiation via Mammosite. Can’t lift my arm even though I have had physical therapy since Feb. and it is now Oct. Pain and restriction and adhesions on the left side of my body. I am so depressed about the whole thing. I wish I had taken the damn breast off and skipped radiation. Was not made aware of any of these potential problems.

  35. I almost did Mammosite myself, Carmella, but I wasn’t a good candidate, it turned out. Radiation is damaging in all its forms, yet the side effects seem to continue to get soft-pedalled. It’s so frustrating. I wish I had known beforehand, too. I am doing better with the pain since I first wrote that post, mostly because I’ve been persistent about stretching & using my theraband. Hang in there.

  36. Thank you for sharing this so honestly and well. It is a story that I know all too well. My radiation issues caused my lumpectomied breast to fibrose and I ended up having to get a mastectomy which has left me with Post Mastectomy Pain Syndrome. Not one of my doctors was informative and would look at me like I was crazy. I am just now recovering and will never be the same.

  37. Oh, Sharon, this is much too common a story. *sigh* Hugs to you. Gentle ones.

  38. It’s been 9 months since radiation and I still wake every morning feeling like I have a straight jacket on that side. Between surgical adhesions, radiation tightness, unpredictable cramps, numbness, phantom breast pains, lymphedema, fatigue, etc, and then the femara all-over aching, and my doctors and family seem to think that I need to just be more patient and positive. I don’t dare complain too much or they start talking antidepressants. (I am going to a counselor who thinks that idea is ridiculous.)

    I cannot hang up clothes in closets or reach things in my kitchen cabinets without a lot of effort and discomfort. And that is an improvement, because now I can at least reach. The doctors say just do the wall crawling. HA! I have a list of daily exercises from the physical therapist in addition to that, I go to the gym several times a week and force myself through the exercises on the stretching bars and they say “it will come, just keep finger walking up the wall.” The wall walking, by the way, does nothing for my need to move my arm horizontally so that right hand can reach over left on certain piano pieces and so that I can do beats 2 and 3 when directing. I can finally do them, but not smoothly and in time as is necessary. (But, as there is no teacher tenure in my state, I was “laid off” from my job as a music teacher, anyway.) And I’m not even sure exactly what problems are from the mastectomy, what is from the radiation, and what is from having had both.

    Incidently, another long term side effect, one I was actually warned about since I was already hypothyroid, was radiation might affect my thyroid “a little.” My TSH (while on medication) jumped from 2 to 15! I am now on a higher dose of medicine, but the effects of radiation on my thyroid may continue to be progressive over time.

    I realize cancer treatment as it is today, has a long way to go. The doctors cannot prevent many of these side effects, nor can they predict who will get them how badly. But, it would sure help if in the meantime they would affirm that we get them, and for some of us they dramatically impact our quality of life from then on.

  39. Oh, I can so relate, Elizabeth! It’s good that you are doing PT though, and I wrote another post about how all this can affect our arms & shoulders here, Arm & Shoulder Pain After Breast Cancer, that talks about things to watch out for, and has some exercise links. My most current post is about Vitamin D, so you may want to have that & your calcium levels checked, and yes, it’s not at all unusual for treatment to affect our thyroid levels, too. Deficient D can affect a lot of things, like fatigue, focus, and even how depressed we may feel. I’ve written a LOT of posts about fatigue, so if you click on that category (on my sidebar), you’ll find a lot of info about how it should be assessed and how to address it. I’ve been taking Provigil off and on for 4 years now for that, and the brain fog.

    Massive hugs in the meantime, and I’m glad you found your way here.

  40. A year and a half after radiation, I can relate to the impairment of the inner workings of my shoulder, side, and under arm, where the radiation zapped the lymph area (although the node showed no cells when removed and tested). But I was and am lucky about my lack of fatigue.
    My BIG problem is the horrible area under my breast with what looks like fat globules covered by saran-wrap thin skin. It is SO painful, and getting worse! The onc and the dermatologist are not helping at all. I am slathered in AquaPhor, and am in almost constant pain. I found this site looking for REAL help. If it were not for this kind of info, I would have kept taking Letrozole (Femara) which was killing me with side effects. Just finding out what was really going on with others made me stand up to my onc. Thank you for sharing, and for providing access to REAL knowledge. Radiation damage is absolutely horrible, and giving me MORE pain than a couple of years ago. Ideas?

  41. Marilyn, see if someone can provide some Silvadene creme. It was the only thing that helped when I was still crispy. And good luck!!!

  42. So glad I found this site! It has reassured me I made the right decision to not go ahead with radiation. I have to give my rad onc credit for emphasizing the fact that side effects are ‘long term.’ I sensed my surgeon was disappointed by my decision and maybe why I received a phone call from the rad onc saying she had reviewed my chart and thus my rad therapy ‘wouldn’t be so bad’ i.e. lowered my chance of suffering lymphedema to 20%…but I might end up with a stiff shoulder. When I did a search for ‘stiff shoulder following radiation’ I found your blog…and so grateful!! I’m 63 yo and do not want to endure long term SE’s. Dx: DCIS stage 2, responded well to chemo as tumor excised was 4mm. When asked how TPTB know that tamoxifen works, the breast clinic nurse stated: “We don’t know,” “we’re still experimenting with that.” With that response I’m not that encouraged to take any prescribed inhibitors. With all the money that is donated to breast cancer you would think treatment would not be so barbaric! Chemo was bad enough…don’t want to be barbequed! Thank you for sharing your experience and hope you are doing better.

  43. Wow, Marilyn. I’m glad your rad onc was truthful about the long-term aspect of side effects. Long-term, like forever. I still get spasms on that side sometimes that are really painful, but I’m a lot better than I was. If I had it to do over, though, I would have elected not to do radiation. I hope you’re doing okay now, too. I’m also glad you found your way to my blog. Glad it helped. xo

  44. I too, had radiation and now a year and a half laterI have stabbing pain where my sentinel lymph nodes were removed. I also have pain in my shoulder that radiates down to where the lump was removed.. I had a lumpectomy and rads and was stage 1 and grade 1 with a low oncodx score. I’m glad to find your blog to see that it is not just me. The radiologist said the fatigue would leave a few weeks after radiation-which it never did. My nipple is now inverted from the scar tissue that built up where the tumor was removed and from the radiation. The oncologist said I can go to a plastic surgeon to see if they can fix the nipple but he doubts it – due to the fact it is scar tissue and that it has been radiated.I wish they had told me the side effects from radiation. Not that I would have changed my mind about the lumpectomy and rads but so not to think I was crazy with weird pains and never ending fatigue.

  45. Tod, the fatigue is awful. That was the worst side effect for me. But even 8 years later, I still sometimes get terrible muscles spasms on that side. I can tell you that exercise and stretching does help. I wrote an extensive post here on arm and shoulder pain (check the Index) and more recently published a few articles in Healthline on the kind of exercises to do to help stretch out the scar tissue. They are here and here. They’ve made a big difference for me. Good luck. And thanks for commenting.

  46. In June/July 1998 I underwent radiation to my right breast after a “lumpectomy” for DCIS. I agree with all of you. Tonight, reading these posts, is the first time I have been made aware that reconstruction is not possible on a radiated breast. If I knew then what I know now, I would not have done radiation. The side effects keep on showing up. I have accepted the fact that my clothes are not ever again going to fit properly, even with a pad in my bra, but I don’t know if I will ever adjust to seeing the size difference. I was told that my right breast might be a bit smaller but no mention was made of how small a “bit” could end up being. The intense, grabbing muscle spasms were not mentioned. The never-ending pain in and around my breast was not mentioned. I have not had a mammogram in years because it hurts too much and for too long. Pretty, underwire bras are things of the past. Objects fly out of my right hand for no apparent reason and my right arm makes a crazy fast sweeping motion that I am unable to predict or control. I was 43 when this started and I’m 63 now, almost 20 years of a never-ending new normal that has created havoc in my life. I understand that I got off lightly compared to what some of you have been and are still going through. Blessings to you all. Thank you for your truths.

  47. Sharon, sorry to be late getting back to you. I can relate to everything you’ve described. The only thing I can say is that it might be possible to have reconstruction on your radiated breast, I’m told, as long as at least two years have passed after radiation is over. There are options now that didn’t really exist even 5 years ago. Like lipo-transfer. It may be worth it to talk to a plastic surgeon who specializes in breast recon. I may go back to one I’ve talked to before to see what’s what these days.

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