Long Term Radiation Side Effects 10+ years After?
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I had 4 weeks of radiation back in 1999 and have suffered no side affects.
Sarah
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sarahlou50.... Did you ever have a biopsy or surgery done on the radiated area? If not, then you wouldn't have any problems. You are lucky. Quite a few lady's here experienced that you don't heal like normal tissue because it causes dead tissue.
Artsee
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Artsee
I had the tumour removed, nodes from under my arm and I had 2 further biopsies carried out as the cancer had spread to my supraclavicular nodes too. I didn't want to have my breast removed which is why I needed radiation.
Why would you assume I did not have any biopsies?
I offer my experience and get a response like yours - why?
Sarah
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Hi ladies,
I have been searching for a topic like this because I too had and have many issues from rads. I feel like I got poisioned. My breast is still movable but the pain makes me not want to. My shoulder hurts when I use that arm too much. If I lift anything heavy I get swelling in my armpit of that arm. My breast is awful sore still and I have to wear a stretch bra. Anything that hoists it up or holds it close is very painful. I still have to use the aquaphor on my surgery scars and if I forget the alovera after my shower I rash up under that breast. I also still have to put klenex under that breast to absorb dampness and that is strange because I do not sweat much at all. Powder and cornstarch make me itch.
When I was doing rads I think I had 31 treatments with the last 3 being a boost. I stopped several times because of pain, nausea, dizziness and anxiety. My skin smelled like it was burning. My breast turned very dark and the skin tore. I am extremely sensitive to all soaps, lotions, scents etc now after rads. I also can not use stuff with adhesives. I did not have chemo and they did not put me on HRT afterwards. There have been many times that I wondered why I let them talk me into rads at all. After both lumpectomies I did well. It was after rads that all this other stuff started. I am only 2.5 years out so there is more to come I suspect.
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BUNKIE10,
That's unfortunate you are still having difficulties. I'd suggest getting an evaluation for lymphedema. Some of the symptoms you have are similar to mine in my breast and underarm area. This is called truncal lymphedema and it is not often diagnosed or noted by your doctors.
With DCIS you would not have been prescribed chemo and with negative ER- / PR- your cancer was not hormone driven, so anti-hormonal meds would not have helped to prevent a recurrence of your type of DCIS.
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Yes, Nancy I will definitely let you know.
Bunkie10, it was one of those, you're damned if you do, and damned if you do at the time of rads. Of course most of us go along with the treatment, but I don't think I was ever told everything that can happen afterwards. I've had several issues years later....and was told " oh that's radiation " recall. Never heard of some of these things till I started googling on my own. I do how ever remember them saying, that rads can cause a different cancer. That's why I've been very diligent about checking the scar area every day.At the time I wondered what I was doing to myself. That's were I am at now. Lots of trouble healing but I must keep the faith.
Doxie, has a good point. We know our bodies, just ask a lot of questions of your Doc and be Adament. 🙏
Artsee
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Hi... Was 56 when diagnosed left side stage 3 5cm tumor estrogen based...behind my nipple...one month of tests...mri...colon...ct scan...bone scan...echo..it was my very 1st mammogram and i was immediately taken to ultrasound that day...a core needle biopsy revealed a lot....my primary care doc told me over phone....i was trying to save my breast...so chemo first...every 2 weeks for 4 months...neupogen shots every other day of the waiting week...it was aggressive so they make u feel like every decision needs to be now!...couple weeks after chemo.had lumpectomy 17 nodes removed and my port removed....the 5cm had split in half...one part in ductal other lobular....dirty margins...5 days later....simple mastectomy....6.5 weeks rads....last 3 days extra shot under arm...4 of my nodes were cancerous...so that is normal....my scar is pretty ugly....took tamoxifen 7yrs....now 9 yrs since diagnosis...no sex life...no libido....on antidepressants...blood pressure meds...rads scarred my throat....ativan for sleep....my life will never be the same....i used to be vibrant....friendly....fun loving....i was rarely sick...been going for physical therapy for a pinched nerve....there is a gym i can use for free rt around corner from my house...see if a lil exercise will improve my mood
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Hi - new to this page - just wanted to ask if anyone questions why they have to see radiologist every year. I had the 30 day radiation last 3 days, booster treatments. Radiation caused pulmonary problems which took over a year to resolve with predisone. I see my oncologist twice a year and am very confident in her but the radiologist just "looks" at my breast/scar ? a duplicate experience when seeing the oncologist. Any comments??0
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Pheasantduster - that is a great question -- I have wondered the same thing... I see my oncologist twice a year also .. and really wonder why I also go to the radiologist?? Until this year (its been 3 yrs) I also saw the breast surgeon but last time she didn't make another appointment... funny thing is my radiologist is the dr that gives me the script for mammograms..I would think the oncologist would do that..
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At the 4-month post-radiation visit, my RO said I did not need to see her again; however, since my surgeon was retiring, she was happy to do annual visits and help coordinate local care since my MO is in another city.
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My oncologist sets up my yearly mammograms as it now seems if you want to wait for readings at time of mammogram you have to have Dr request "diagnosis". Otherwise, you have mammogram and then you go on your way and wait for your diagnosis letter. I would rather wait (bring a good book) and if any questionable area an ultrasound can be performed right then. All my visits and treatments are at the same hospital.0
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hi everyone, i just started rads, you can see my diagnosis below. i keep having second thoughts the whole time whether this was best instead of double mas. they keep saying because it is so small that lump with rads is best. However, after my first treatment my breast is swollen. still wondering if i should go back for double mas just to have it done and overis this normal? what are the long term side effects? i am only 49...older than some, but younger than some....want a long pain free life....
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you have to do what is best for you and what will leave you having peace of mind... I will say that if you get the radiation and after get a mastectomy and plan to get reconstruction, the radiated skin doesn't usually do well for reconstruction - its damaged skin... that said, I am thinking the swollen breast is a side effect of the radiation.
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they told me my treatment was 1.8gy or 180rad to 200 rad per session for 33 times..is that standard?
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Sorry, I don't know rad per session in my case but do know 30-33 days is the usual. I had 3 days of booster at end concentrating on the nipple - I still wonder about that - was not as confident on position of body but supposedly machine cannot function if not set at predetermined position. Your radiologist should be meeting with you at determined schedules i.e. every other week. Best to you0
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I just saw my radiation oncologist for the last time - 5 years out from initial diagnosis. I saw him annually after my 30 treatments ended. At each visit, he did a breast exam, felt my arms for swelling and my neck for swollen lymph nodes, and listened to my lungs and heart. While there were times when I wondered at the need for the visit, I liked the reassurance of having 3 breast exams in a year (every 6 months with surgeon/oncologist). He was also very easy to talk to, took lots of time to answer any questions. His responses, while basically the same as the answers I got from my surgeon/oncologist, were sometimes easier to understand. It was like getting a continuing second opinion throughout my treatment.
During this last visit, I asked him to remind me of long-term side effects that I should be aware of. He said there are no longer heart/lung issues from "today's" breast radiation treatments. There is the possibility of a secondary cancer developing from the radiation, but that usually happens 20 years down the road and there is no way of predicting who will develop it. I think he said the odds were 1 in 3000.
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SissyK, You are so fortunate that your radiologist was "easy to talk to" and "easy to understand". My initial visit with my oncologist felt like I had dropped into a lecture hall. Too much information I did not understand and I hadn't even had my surgery yet!
First impressions are lasting impressions. Continued good health to you.0 -
beachw3 you really have to do what is best for you. For myself I had SE from the first rads treatments. The techs told me no way was I having SE those don't start for 2 weeks. Well I was not the usual case. I had lot's of problems I had 2 nd thoughts about finishing and wished I had listened to myself. Anyway finished with major nerve damage. Ended up having a double mastectomy but I had to wait over a year because of the damage from rads. I had problems with reconstruction from rads but I had one of the best reconstruction PS's in the nation from PRMA in San Antonio Dr. Ledoux. It took multiple surgery's but he was finally able to pull it off and did a great job. I look wonderful. He was very honest from the beginning about my damage but was confidant that he could do it, it would just take a bit longer. If you are having 2nd thoughts get an opinion from a PS before you continue so you can make a good decision.
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I am a 20+ year survivor and stumbled onto this site as I was looking for ways to deal with two different size breasts. I had a lumpectomy, then (in order to get a clean margin) a wide excision where most of the lymph nodes under left arm were taken. It was just before they decided that sentinel node testing was the way to go. So, now I have a "hole" under my arm. I then had a full course of radiation (six weeks as I remember) and 5 years of Tamoxifen. Positives? I don't need to shave there. :-) I know this is probably a "trivial" thought on my part, but 20 years ago no one said anything about being able to get bras that took into effect the two different size breasts. Now that I am older (I am 74, but very active) I see that the radiated breast is firm and perky (hurts like hell when I go for mammograms) and the cancer free one is droopy. I wondered why all my dance clothes kept shifting to the right. I think not having a good bra that differentiates the breast might be the reason. I see very little about bras, but a friend who is just out of radiation is going to get fitted for one to take into account breast size difference. I'm wondering whether I can still get this kind of help. I know it's vanity...but hell with it. I went through all the pain, and yes I am (knock on wood) cancer free, but I still like to look good and have clothes fit well. Any thoughts on this? I will be seeing a new surgeon (mine retired) as I feel privileged to be able to still see a surgeon yearly, and I see someone at the oncology center every year too. I feel that I need to be proactive to see that if there is ever a recurrence it is found early.
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Hi Crochetcritters-
Congratulations on your 20+ years! That's wonderful to hear. And we don't think it's ever too late to seek help for something that's bothering you; you fought hard, and you deserve to feel good about yourself. Have you tried reading through our Reconstruction forum? Lots of great info there, and it you may find answers to some questions you have. Best of luck!
The Mods
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I am 4 years out of rads for DCIS. After 2 lumpectomies I really did not want to do rads because I have an auto immune disease that reacts to anything and everything. They insisted I needed it. I had a bad time with rads and still have some SEs. My breast is still very sore and I can not wear any bras except stretch bras. My skin under my breast is still very sensitive and I have to use aloe vera after every shower and Kleenex so it will not sweat under there. If it does I get a nasty rash. Rads caused my thyroid to flare up and create a nodule but we are just watching it and it made my hair come out and thin around the hairline. It has never grown back like before and I use Nioxin products on it faithfully. I still have very little energy. I still can not sleep thru the night and I still get a rash when I use new skin products, Anything scented gives me a migraine and my most annoying issue is vertigo. I had it mild before rads but during and after it let loose. They have done every test there is to find it from MRIs to scans and nothing helps. This also will cause nausea so I am always taking zofran for that. Rads destroyed my life. Now they are doing studies saying there may not be a need for rads with DCIS patients. just great.
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I had a lumpectomy, chemo and radiation in 2000 for DCIS.
SIX years later I noticed 2 small purple " bruises" on that breast. Size of my smallest fingernail. My surgeon said it was "fluid" but I got a second opinion and a biopsy and it was Angiosarcoma. .. in my case a radiation-induced cancer. Immediate radical mastectomy which found 3 more tumours inside that sorry breast. I am now 10 years out from that cancer, but always looking for bruises, anywhere on my body. Another surgeon said 6 years from radiation was about right for this to rear its ugly head, so to speak.
This is a rare cancer true but I just put my story here hoping it may help another such rare individual to pick up the vague early signs of angiosarcoma.
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Hallo Barbraella,
Its been a long time since you described your breasts.Ive endured the same for many years and am still single (54) and terribly depressed. I had oxygen therapy which softened my left breast....but also softened the rest of my body too! My breast felt beter but still one small perky mutilated breast and one grandma breast which is very difficult to live with to get them at the same level oh you know the problem no doubt. I have one huge breast and a small body ridiculous. I was wondering if you ever did undergo any reconstruction and how that worked out for you. Im crying a bit now but was so glad to find someone with the same problem! Would love to hear from you or anybody that can relate to my experience 12 years after radiation.
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Hi Wendy5, and welcome to Breastcancer.org!
We're sorry you're experiencing this issue but really happy you found someone you can relate to. Unfortunately, this thread has been pretty quiet for a while, so we'd suggest that if you'd like to perhaps meet some others who may be experiencing this, you start a new thread. Or, feel free to send a private message to Barbraella, so you can directly ask her your questions.
We hope this helps, and you find the answers you're seeking. We look forward to hearing more from you, and supporting you!
--The Mods
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wendy5-- haveyou seen a reconstructive surgeon? I would suggest meetign with a reconstructive surgeon who focuses entirely on breast reconstruction --oncoplastic surgery and delayed reconstructive surgery are all possibilities. You dont have to cry --i hope you find answers and peace of mind
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My two breasts are quite different: both very large, but the radiated R one is round & perky and the “healthy" L one droops like a basset hound's ear and is over a cup size larger. (During and for six months post-rads, the cancer breast's seroma had swollen to the point where it looked like the breast had a “chaw" in its cheek, and was the larger of the two; before cancer, it was slightly smaller than the L). I have found that cups with some “give" and support (I wear underwires, but not everyone can—there are wire-free bras with non-woven fabric “slings” inside the cups) are essential. Make sure the band is not too large (it shouldn't ride up) and the cups are large enough to fit the bigger breast perfectly. You'll know they're big enough when the center of the bra sits flat against your chest, separating the two breasts, and not too big for the larger breast if there's no wrinkling.
You will have some wrinkling on the top of the cup for your smaller breast. Three ways to go here: 1. Stretch-fabric (knitted or lace) cups, and shortening the strap on the larger side; 2. Pad the smaller breast—I use removable pads from an old cheap Genie bra that was way too small, and I insert them on the lateral side so that the breast gets “nudged" towards the center and the cleavage looks normal; 3. Get a lightly “molded" T-shirt bra—cups are smooth, seamless and the padding is just thick enough to hide the irregularity.
If you have small or normal-sized breasts (<DD) you can buy your bras anywhere, and not spend a lot of money. When you’re like me, however (38 H/I before, 40 I/J in the year post-rads, and 40 F/G now), best to go to a dedicated lingerie shop (like Rigby & Peller) or to Nordstrom’s and get professionally fitted. Buy one or two bras there, and then go online to HerRoom.com, FigLeaves.com (or .uk if you’re on that side of the pond) or BareNecessities.com to find that same bra and size in another color or two.
I had 16 hypofractionated external treatments aimed at the tumor cavity, and the seroma enlargement was the most severe SE (and as SE's go, not severe at all). Got some pinkness at first but not even any irritation, nor itching, pain or skin breaks; then a tan over my lumpectomy scar. All that's gone now, except that areola is darker & thicker and the nipple isn't as pliable. (Seroma is smaller than before starting rads, and deep inside so it doesn't hurt or drain—mammos feel just like they always did). I finished rads the Monday before Thanksgiving 2015, and haven't seen my RO since. (I see my BS or her NP and my MO every 6 months).
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I am a breast cancer survivor 11yrs. I have just been diagnosed by a hematologist/oncologists who did a bone marrow biopsy to confirm the diagnosis MDS. MYLODISPLASTIC SYNDROME. The symptoms are shortness of breath, bruising, extreme fatigue, and low platelets frequent infections or no symptoms at all at first. What the doctors don't tell us is that you can get MDS from combined chemo and radiation treatments. Just check it out. Read up on MDS a form of blood cancer very rare.
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Hi Winndixie-
We're so sorry to hear about your new diagnosis. We're keeping you in our thoughts!
The Mods
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winndixie! I am so sorry to hear that! Actually that was my biggest fear from rads. I just finished today 27 rads...and during the rads my white blood cells were very low...I was a bit sick during rads so my doctor said this could be the reason ..but I am so worried that I could get another cancer from the treatment.
I didn't get chemo..that is why the low white blood cells doesn't make sense right?
did you get any symptoms right after rads?
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Thank you all for your info regarding rads. Starting mine March 19. Had lumpectomy Jan 22. Tubular Carcinoma 4mm tumor 3 nodes all clear. Was hoping to not do rads but docs say it’s a 20-25 percent drop in chance of reoccurrenc. Not taking tamoxifen. I’m 49 so they recommend I get the boost. I’m gettibg the abbreviated treatment ( 4 weeks rather than 6). So 21 treatments. Nervous but want to get it over wit
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