Long Term Radiation Side Effects 10+ years After?
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Hi Girls,
Last summer my problems drifted from chest wall pain to severe darting pains through my right arm. I went through all the tests and x-rays - blah blah blah and was certain it was cording. Good thing I didn't waste money on private physio cause it turned out to be radiation-induced brachial plexopathy or RIBP (nerve damage in the arm and shoulder). Basically same type of nerve damage as in the chest wall only in this case, some women lose complete use of their hand......eeeeek! They suggested I take Lyrica. Ha! You should see the side effects listed for this drug. That alone would kill me cause I'm so sensitive. I noticed there is a message board group on this website dedicated to RIBP. Maybe I can get some hints there. Just thought I'd mention this in case anyone else is wondering about shooting arm pain. It took doctors 4 months to finally figure out what I had.
Hey Barbarella - I use Asper-Creme on my chest. It helps. Thanks for the corn-starch tip. I use to put it in my stinky shoes but now I'm going to use it on my armpits - although I no longer sweat there thanks to surgery.
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sunny1012 i'm glad your doing your research on the rads I wish I would have. If I had it to do over would have not done radiation, especially after reading what the ladies have said about the effects later on. I'm almost 2 months out and am very sore. I had a lumpectomy and 2 lymps (no cancer) and an MRI that showed no cancer, so I don't really understand the need for radiation. I think I gust thought I didn't have a choice. There are natural products you can take to replace the Tomoxifen, I take Iodine, It;s worth looking in to. We have to be our own health advacate, I;m afraid alot of the medical field has turned to the dark side and it;s all about the money. My oncoligist told me the hospital makes more money on chemo than any other treatment they provide. As i;m sitting here typing my breast is just throbbing, like every one else I thought when radiation was over everything would be normal, half of my breast is numb to the touch. My husband wants to be close and I can't even make my self respond, have no feeling going on. You know besides all of this I feel great. I'm loved and needed by all around me. God loves me and all of you too. Life is full of bumps along the road and I think God made women to be extra strong to be able to handle what comes our way. God Bless
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Hello Gilbert,
Thank you for replying. I went back to talk to my surgeon. I started thinking maybe a mastectomy may be the way to go instead of the radiation. He said I had three choices at this point. Have the mastectomy with or without reconstruction, radiation or nothing. Each has pros and cons. He does not think doing nothing is a wise choice but said some women just decided they don't need to do what the doctor advocates and some women do all right while others do not. He said radiation would greatly reduce my risk of recurrence since I had a lumpectomy and without radiation my risk of recurrence are about 30%+ Lastly he said I need to understand that a mastectomy changes the body forever and to be sure I knew that you don't just go to sleep and wake up with this beautiful new breast. Its not that easy. So, he advocates for the radiation or mastectomy and that he feels that if I don't do one of them, I am passing up my chance to basically "cure" my early stage breast cancer in terms of long term survival with limiting the chances of recurrence. I have read research until I am sick! I have asked questions and made more than one appointment with doctors for answers and sadly, the questions I have, have no answers. They just can't promise me anything no matter which way I go. So, Gilbert it sounds like you are fresh out from radiation and not sure if that was the right thing. I don't know either and I am scared. I am also scared of not doing anything and what could happen there. The research does state that radiation greatly reduces recurrence. However, there are also some very real, very scary things that happen down the road and that is what concerns me. I guess I could look at it as not to worry about down the road because who knows if I will be here or not but I would like to think I would be here a very long time. Did you feel any sense of relief in finishing the treatments?
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Boy you guys are really worrying me about all these horrific effects from RADS. I had a lumpectomy and 33 RADS treatments and currently taking Tamoxifen. I am 3 years out this past January. Until I had the Oncotype test done my Oncologist was ambivalent about my treatment plan being chemo or radiation. I am Stage 2(micromet in the SN) and Grade 1. I read about what can happen, and apparently has happened to some of you, with having radiation. My decision was based on rolling the dice to do something now that might prevent a recurrence or risk the hereafter and fallout from the effects of radiation down the road. I am a worrier by nature so I already knew there was no way I could deal with not having radiation now and beating myself up about it now or later but everyone is different and every case is different. We have to go with our gut feeling with the information we have at the time. I don't doubt for a second the cost of chemo is off the chart. I have BCBS and we had already met our deductible so we never got a bill for the treatments thankfully. I do know though they can cost between $1000-2500 a treatment and I had 33 of them..do the math. Staggering cost.
One thing that I have learned from reading posts from all you ladies on this forum is we are all our own advocates and we are not afraid nor intimidated by our doctors and will and should challenge them in their decisions about our care. After all it is our body and our life. Diane
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I had two ROs say yes to rads, two said no. I went with the no docs. My decision came down to the info I was given that I could only have rads to my chest wall once, and I felt like they got it all, cancer that is, and wanted to save that shot at rads if I knew I needed it later. I chose not to have reconstruction and docs said it's very easy and obvious to see if it's coming back in chest wall. I didn't want to get the rads if there was nothing there. I did have lymph node involvement in one node, and BS proceeded to remove 11 more after that, all which came back totally clean. I was an oncotype 14, so no chemo either. Just taking tamoxifen with no side effects. Yay!
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Hello Edwards750,
How are you doing since your rads? I don't know if I have something to be afraid of because I haven't started mine yet. I have my simulation next week but they are also waiting on Oncotype results. I am a worrier too but I have just read so much that I am scared of long terms effects of radiation. I am also scared of doing nothing? I guess its a roll of the dice either way ???
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Hi ladies: I can totally relate to your struggle as to whether or not to have radiation. It was the most difficult decision of my life. I had DCIS, so should have had a fairly easy time, but due to small breasts and a large area of DCIS and then a focally positive margin following the mx, I was suddenly faced with the possibility of radiation. The odds of a recurrence remained quite small, but suddenly quite a bit larger than the usual 1 - 2% following a mx. But radiation also presents risks. My BS did not feel that I needed radiation, but after all my research and in consultation with the top RO (who in Canada does not care whether or not I chose rads), I felt that my mind was placed somewhat more at ease knowing I had done everything I could do at the outset to ensure that this was treated effectively. I doubted myself right up to the moment the techs left the room to start the radiation. It was an extremely difficult decision, because there is no right answer. Some areas are very grey and it is up to each individual as to what sits best with them. I hated that there was not a formula to tell me what to do. Half the studies supported my decision and half the studies suggested radiation probably was not necessary. Everyone left the final decision up to me. My DH leaned towards no radiation, but knew better than to influence my decision as I am so self-reliant. I have to live with my decisions, so have to decide what is best for me. I asked the advise of women on these boards also and although I would never leave my decision up to anyone, hearing others' thoughts and feelings really helped. It is a struggle that will only end once you have decided and in my situation, once I could no longer change my mind
I have no advice, just thought it may help if I shared my experience. Good luck with your decision.
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Hello to all, and Edwards750, Sunny1012 and TB90.
Edwards750 thank you. I have been cancer free for 18 years. You brought me down to reality and remember what the important issues were in deciding my treatment. As we all know it is our decision, for they can only recommend. It's all so mind boggling having 2 RO's say no and 2 yes.
From the beginning I had the mindset that I would fight, as if I had only one chance at defeating this monster. I did all this so that I could say I did everything I could have done, helping ensure that I would stay cancer free. I chose the most aggressive treatments as I believed in giving it my all, one time.
Looking back on it, I think I have lost why I made the decisions that I made. Especially now experiencing the side affects of the radiation etc. It's easy to concentrate on what's happening now with the side affects, 2nd guessing & questioning the treatment decisions I made 18 years ago.
The most important issue was what am I willing to do to fight this monster? That was the question I asked myself. Yes I was not aware of a lot of the side affects, but I also have been cancer free for 18 years. That was my main goal then and one I need to remind myself today. I am very grateful. As for the side affects now, and the treatment options available 18 years ago, I would probably make the same decisions. I do know that it's a difficult personal decision, for the reasons and issues that are important to you. Go with your heart. Barb
DCIS Stage 1 1cm. Surgery Lumpectomy
Chemo: 3 cycles cytoxin, adriamycin, 5FU
Radiation: 9 weeks
Chemo: 3 cycles
5 years tamoxifen.
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Hi Stenokim, We have a similar diagnosis, except I had 30 nodes out. I have been taking Femara (aromatase inhibitor) for 6 years, but am currently having a 2 month break. I will then recommence it again, for how long, I am not sure yet. I guess until I can no longer stand the pain in all my body.
I reacted very badly to the radiation. Had 21 rounds, but skin became read and very inflamed by the 2nd round. By the end of the 21 rounds, my skin was dark purple, and all the skin melted off and was bleeding and weeping, and it took about 6 weeks to heal. 4 Years later I ended up in hospital with a serious bout of cellulitis over left breast shoulder and down arm. At the time I found 3 very tiny red marks about the size of pin heads under my armpit. Turned out to be the start of lmyphangoma circumscriptum, which is a disease caused by the combination of radiation and the number of nodes taken out. I am now left with a terrible condition, for which there is no cure. The area has now grown to be approximately the size of the diameter of a tea cup, and is very uncomfortable, painful and the lumps weep lymph fluid. I have also found out that this condition can turn to angiosarcoma which is a very aggressive cancer.
I have had the area burnt off, but the lumps started growing back again with a week.
So as you can imagine, I am not impressed with my current condition, and never thought for one minute when I signed the waiver put under my nose by the radiation oncologist, that I would be one of the people to end up with another disease caused from the result of my treatment.
Ched
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I did rads and am fair skinned and had a very hard time with it. It did alot of damage. at my one year follow up found a lump on my other breast. It ended up being benign but had to have a lumpectomy to remove it. Rads caused permanent nerve damage which was horrible. Stabbing pains every day. Was on nerve meds and pain meds for over a year. I was very small breasted and had already had a lump on the cancer side 14 years previously for a B9 issue that put me at high risk. So my cancer breast was smaller and with rads it became hard and even smaller right away. My muscles contracted and I spent 4 months in PT trying to stretch everything out. After my B9 issue in my non cancer breast which put me at high risk in that breast I decided to do a double MX. I had so much damage from rads that I had to wait another 6 months before the PS would do it. Once I had the MX the nerve pain was gone, woohoo. I have had some issues with the rads reconstruction which I new would happen. My PS was very very honest with me but I was not a candidate for diep. So we decided to go with implants and take it one step at a time. I look great even though we have had to have some revisions done. I do not regret it one bit. What I do regret is not getting 2nd opinion in the beginning and letting my BS push me into lumpectomy and rads. Knowing what I know now I would have rather had the BMX and reconstruction and no rads. I was sent to a quacky MO who did not think I needed chemo. When I was finished with rads I finally switched MO's and the 2nd one was like you need to do something ( was mid range with my oncotype dx and 48 at time of diag) either chemo or he felt very comfortable with a new protocol using Zometa. He had been following the study and felt I was a very good candidate. He gave me all the pro's and con's for both and had me think about it. I choose the Zometa and feel good about that decision. I like the way he always presents things to me gives me his opinion and wants me to decide. My RO never even told me how much of my heart and lung were included in the rads which was on the left side. I know that with the newer machines they are able to include less and less of the heart and lungs but it would have been nice to know.
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Sunny 1012, I read your post today and was struck by the similarity in my own fears and search of the literature for objective, reliable info to balance not only my ignorance and fear but the limited and sometimes conflicting info I got from different docs.
I think you have a much better surgeon than me however... seems he laid out the options, clearly and respectfully. My surgeon of nice enough but when pressed for details and risk she gets fuzzy and in the end I found she minimized the risks and possible problems I may ( and did) have post op.
I do not regret electing lumpectomy over mastectomy. I was prepared to go in the mastectomy direction if my MRI indicated either other areas of cancer in same breast or add'l early cancer in opposite breast. But my MRI was interpreted as negative for any clearly suspicious lesions.
In terms of RT, I just finished last week the 36 sessions.I really struggled with accepting the necessity of doing RT post lumpectomy . I suspect from my review of the studies-most of which are retrospective and data quality is not detailed enough to differentiate stage of cancer, types, etc - that not all women are 30% risk of recurrence without RT..... but who is? There is a lot not known and it does seem to me that RT post lumpectomy is "generally" better than no RT; boost added to whole breast better than no boost at all; hormonal blocking meds ( if ER positive) better than not..... However the potential and significant risk of SE from Rads both short term and years later is something that was minimized by my RO to the point of interfering with transparent information in my experience... and when I hunted for my own info, it was scarry what can and does occur as SE of the RT treatment itself.... so it's a risk and information is limited in the studies how large is the risk, how to minimize, and who is more likely to have risk... and many RO go with a one size fits most approach. My RO offered... 50 Whole breast to all then 10 or 16 boost.... no other combos. Yet in other RT centers there are different practices and DOSE and the combo of WB to boost and total dose does impact not only recurrence risk but also known SE such as fibrosis, neuropathy, arm muscle stiffness issues, lymphedema and how much Rads the unintended normal tissues get also. There are also different options for how RT is delivered. IMRT, 3D, partial breast.... but if the RO you consult doesn't have experience with it they won't offer it as an option. Go to a place which can offer you the most options and talk to 2 RO from 2 different institutions , read, then make your best decision you can . Happy to help in any way with what I learned along my difficult journey.
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ched, I am so sorry for all you have gone through. I will say a prayer for you to get some comfort and that your lumps quit coming back. I thought I needlessly had a lot of nodes removed but you almost tripled me. I haven't had any lymph edema issues yet, hopefully I don't, but I'm only two months out. I started lifting weights again and I think it's helping. Contrary to what some PTs have told me, I've read several studies that say weight lifting is good at helping prevent LE if you slowly increase the weight. I started a month ago with 2.5 lbs for biceps and shoulders and am now up to 15. My MO and RO agree with the positive weight lifting studies. BS told me I couldn't lift a gallon of milk anymore with that arm. Phooey!
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Sunny1012,
I am at the same place you are. Struggling with either doing radiation or not. I was Dx with DCIS high grade, IDC 7mm. Lymph node negative, er/pr+, her 2 neg. in January. Because my pr% is low, my onco ordered a onco dx test and I'm waiting for results. Praying I don't need chemo. I've been researching everyday about side effects of radiation and am leaning towards a bilateral mx w reconstruction. My RO felt it may be a little overboard, but I know I'm a worry wart and can't just skip the rads and do just the tamoxifen and chemo if necessary. My RO said there was a 1% chance in 10 yrs to get a cancer from the radiation and 2% in 15 yrs in your body, not just the breast. Clearly there are other short term side effects but he really downplayed any short term side effects. I should have asked if this risk continues to rise as the years pass. I know a bilateral mx is major surgery, but I met wonderful woman on this forum while searching for a reputable plastic surgeon who have gone through it and are very happy with their choice. I figure if I can get through the surgery with no complications, I won't have to always wonder what the radiation will bring years down the line. Don't get me wrong, I'm still struggling and contemplating if this is the right choice, but this is where I am currently. I met with ps today and thought it would help, but I've decided to get some second opinions. I know there's not much data out there on LT effects of radiation and ultimately, it's going to be what feels right to me. I pray everyday for strength and guidance to make the right choice for me and my kids. There's days where I'm so mentally exhausted and scared, but I know I need to be strong for my kids and that we will get through this!
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Hi all
I agree its a tough decision and you can research and read but I don't think we will find something that says "do this"- you have to weigh the pros/cons of your choice and make one that has an acceptable level of risk versus benefit for you personally.
One thing I will say being a nurse who has worked in surgery 30years- we speak a lot about the SE of radiation both long and short term- I have not seen anyone mention the risks and complications associated with mastectomy and reconstruction. Its not a one and done approach and many women need multiple surgeries, deal with post-op infections, pain and discomfort dealing with tissue expanders & implants. Quality of life is affected for months/years.
I have a theory why it sometimes feels the side-effects are "downplayed" Its because your diagnosis at that time is Cancer- you have it and the treatment has side-effects but a cancer treatment option is seen as the benefits outweigh the risks.
I had surgery in late september,finished radiation in november- started tamoxifen 1 week later- I am doing yoga, walking 5 miles/day and have lost weight to get the BMI in line and am eating a much more "thoughtful" diet. I believe in being a full and active participant in my care and am doing my part to reduce risks associated with lifestyle and maintain habits that support health.
at the end of the day you just have to be able to say I made the right choice for me at the time, knowing what I knew and weighing the options.
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Gracenfaith, your remarks remind me so much of where I was only a couple months or so ago. It's hard to make a choice when you don't know a lot of facts because there are just a lot of unknowns for possible problems with rads and also for Mastectomy/recon. And I learned that many RO's either don't explain or don't understand themselves the less common but seriously quality-- of life altering issues that rads can introduce to the existing BC diagnosis. Yes I want survival but I want to get best survival WITH quality of life and they are really poor about figuring that into their advice or allowing patient enough info to make a truly informed decision...Ultimately I decided lumpectomy and rads because as the nurse from Main in post before said, there are multiple steps, possible complications there also, and takes many , many months to complete. Where I really struggled was whether to permit the higher DOSE rads my RO wanted vs what a RO consulted out of town advised as sufficient. I went for higher DOSE and pray I have no disabling SE in future years. I also know many women decided to do double mastectomy however and there are happy with their decision. God bless and guide you. You and all here are in my prayers.
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Hello TB90--I am wondering how you are doing since you are finished with radiation and if at this point you regret anything??? I am still in flux as the MO decided to do an Oncotype test and I have trouble with the pathology dept where I had my surgery and the pathology dept where my slides were sent because they do their own test for their patients and anyway there is an issue between the two organizations getting my sample to the testing company. I guess they don't get that puts the patient in the middle and treatment on hold. I am most likely going to have to do the radiation or go back in for a mastectomy. Since my simulation has been moved out waiting on the Oncotype results, I have time to visit a plastic surgeon and make a final decision on radiation which would follow the lumpectomy I had or going in and having a mastectomy which I think I would go ahead and do both sides at this point if I chose that. I am sure I am rambling as my thoughts on all this have driven me crazy and the indecision is terrible. So, I hope all is well and I hope the radiation went well. I am curious how you finally made yourself do it when in your case you could probably have bypassed it. I am so afraid of radiation because I know that it can cause long term side effects and one day I am ok with the thought of it and the next day I am terrified of the thought of it. Any advice???
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Sunny, it was by far the most difficult decision of my life, hands down. I had the wrong date on my treatment as I am actually right in the middle of receiving radiation now. So far, so good. Only a bit tanned.
I had to have a mx due to having small breasts and a large area of DCIS. That should have done it for me but then had a small area of positive margin even following the mx. BS thought I would still be fine and RO stated that radiation would reduce my chance of a recurrence, but introduce SE of radiation. Chance of recurrence was still quite low, but not nearly as low as it would have been with negative margins. I was so stuck for so long. Also, having rads now meant that I would not be a candidate should a recurrence happen. In the end, I decided to do all I could at the outset to rid myself of this disease. SE of radiation are rare and I am hoping that I will benefit much more from the rads rather than worry about the long-term SE's. There was no right answer, but that also meant there was no wrong answer, just what I was most comfortable with.
So far, do not regret my decision at all. Good luck with your decision and I so get how difficult this is. Wish we had a crystal ball!
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TB90: Thanks so much for your reply. I will know for sure come Monday which way I am going. I see two Plastic Surgeons this week and then have the weekend to consider and I am also set up for Radiation Simulation on Wednesday if I go that route. I hate it all. I hate that there is no Crystal Ball nor are there any definitive answers to my questions that I have asked all the doctors. SO, I will keep you informed about what I decide but I am not looking forward to any of it. I want to be well and not worry anymore but no matter the choices we make there's no guarantee. I guess that's true about life in general so I will move forward one way or the other. Thanks Again!!! I so wish you well in your journey as I do everyone here. Love to all!
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Sunny: Please let us know what you decide. Once you have made a decision and start on your treatment plan, you will feel so muh better and stop doubting yourself (mostly).
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Radiation side effects I have had multiple radiation treatments ( 3 bouts of 6-7 weeks) to both sides of my neck due to spread of breast cancer from left breast. I now have severe radiation fibrosis. I can barely turn my head and stay in perpetual pain. I finally found a physical medicine doctor who tried to help me. I have had: lidocaine shots, muscle relaxers, gabepentin, cymbalta, Botox shots, physical therapy, massage, cream compound and nothing has relieved the pain. It is a nightmare way to live and has negatively affected my life and mental health. I would not do as much radiation had I known this was going to be the results.
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Hello Ladies,
I have not written on this site for many months. In starting this topic I did not know where it would lead me. I hope some of you with radiation complications & concerns have gotten help and the education needed to live somewhat normal lives, if that is at all possible. ptex I wish you the best. This disease and the treatments we embrace & suffer through afterwards make me so angry.
As I said I did not know where this site and the many other topics would lead me. I have found a breast reconstruction/plastic surgeon Dr. Michel Saint-Cyr at the Mayo clinic, from others who have had wonderful outcomes & experiences in having him as their surgeon. My appointment is September 25, and I can not wait. I am looking for a reduction on the normal breast and recommendation on my breast with radiation complications. Hopefully I will be the same size and balanced when all is said & done. 20 years like this has been too long. I hope this brings me some sense of closure in my daily obsession in hiding what my body has become. In the future I hope to be proud of my body and not hide behind my clothes. I wish you all the best in your journeys. Thanks Barb
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I was diagnosed with breast cancer in 1991 had lump taken out had 34 radiation treatments! After I was on last radiation treatment my surgeon called and said oh we made a mistake the pathologist called me and said you didn't have cancer after all! What I went threw and during the time I was getting radiation treatments my Dad passes away..my son was in Gulf war..I was going threw all this..Now after 24 years later I'm having problems with my liver in enlarging and my ribs are very sore and enlarging also can tell when I lay down the side is higher than the other..now I'm having problems with my ribs hurting in the back now..all because a dam doctor diagnosed me wrong and I'm glad I didn't have breast cancer because my mom did a cousin and aunt did..but now I'm suffering from the radiation treatments they gave me years ago that I didn't need in the first place..They over radiated me also because where I had the lymph nodes removed I was having puss coming out of incision
that I had under my arm! All they can say is oh the radiation wont hurt you! right!
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Dear Raebrewster1971,
Welcome to the community. We are so sorry to hear your story. While none of our members could say with any probability that your symptoms are due to effects of Radiation Therapy you certainly might receive some support and direction. Here is a link on our site to Late effects of Radiation Therapy. We are not sure that such would be helpful. This particular topic has not seen activity in quite awhile. Perhaps you can repose your question as a new topic under the Radiation Forum. Keep us posted and let us know what you learn.The Mods
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Posting about this -- because I missed it, and am going thru some of the same issues.
My arm on the BC side tingles, like I slept on it. But I didn't
And when I exercise, my chest and axilla ache, and it feels like a bee is buzzing where my seroma was.
I asked my oncologist's office for a referral to a therapist specializing in breasts post-treatment. They insisted I come in to see them -- I did. They told me it wasn't BC, I said I knew that. They said it wasn't lymphadema. I said I knew that too. And asked what it was. They looked at me, and gave me a referral to a lymphadema specialist.
Who was useless -- however, from what I've since heard, she is also useless for lymphadema.
I saw a physiatrist on the suggestion of a friend, and he said it's myositis (inflammation of the muscle), and has referred me to a specialist PT
I am 7 years out -- I hope this helps someone else0 -
I am also 7 years out. Lumpectomy, chemo and rads. Now 4 weeks ago, the scar changed so had to have a biopsy. 3 weeks tomorrow it will be that I had the stitches out, and it still has a slow drainage. I know radiated tissue and skin doesn't heal like normal but it is getting maddening. Anyone else have trouble healing on the radiated areas? I went back and the surgeon said I had a Seroma but did nothing, just said it looked good.....right. Sigh.....
Thanks Artsee
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artsee.. my scar still leaks every once in a while ,,and the surgery was almost 3 yrs ago.. it started leaking a few weeks after surgery before rads but leaked all through chemo and rads and now it still leaks occasionally - so now they say radiated skin doesn't heal so good..
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Hi Nancy...isn't your Dr. Concerned that an infection may develope if the skin is open in a spot? Did they ever suggest stitching or going back in?
Artsee
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Artsee
my doctor said as long as the leakage is clear it is ok... the opening is just a tiny hole like an ear piercing hole..
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Nancy, it will be interesting what my surgeon says next week. I hope he can garden tee that it will all heal after taking out the scar tissue. I highly doubt it. Like you said radiated skin doesn't heal good anymore. Blahhhhhhh!
Hugs, Artsee
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Don't forget to let me know how it all goes..
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