After Radiation- Long term effects and remedies
I have many issues with radiation, which i had post lumpectomy in 2010. I think i did not know much, nor did Docs offer much info on the long term side effects of rads, i know it just sounded better than masectomy at the time. It is crazy how much money is made on each rad setup and treatment! My breast finally shrunk at about the 2 1/2 yer mark, and the chest muscle is always tight and in need on constant stretching so i can do my normal activities. I got the ugly suprise Jan 3 2013 that the dcis had returned, followed by double masectomy and reconstruction.(still in the recon process) I find myself second guessing my choice and fairly angry that we are not told more about the possible complications, other than burn/red skin issues. So i am looking for other ladies that have had similar experiences to vent with, as well as searching for possible help to undo some of the trauma done to our bodies.
Nancy
Comments
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Hi GreenCowgirl
I am sorry to hear of your probs post radiation. I too wish I had been better informed, had I known then what I know now, I would have had a bilateral mastectomy with implants. I would not have had radiation but felt at the time I had to and was not offered any other treatments. I am now considering a bilateral mastectomy and reconstruction, how is yours going and what how did yours go? The stress and complications I have had to go through since my lumpectomy, breast conservation surgery have been very difficult. Gentle hugs to you xx
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Katz Thank you so much for contacting me. I also felt like I was offered no other real options. I recall having arm swelling and skin numness on the lumpectomy area years later. the radiation doc acted like that was odd. After researching, i have found my symptoms were not odd at all, it was some degree of lymphadema and can rear its head farther down the road too. I was fortunate during the maectomy surgery this year to be able to keep my nipples, they use a tool to look and see if the blood vessle are viable to support the tissue and mine was good. The bad part was they had to take alot of tissue from the left breast because they had to remove the prior scar/surgery site from lumectomy. This reduced the skin very tight on one side and the implant is extra had and wrinkled on the right side. Ps thinks it is fat necrosis but i know better, the wrinkles all run horitontal top to bottom and are the ridges of the TE. This is always going to be the problem side I am told. So right now i have the TE's in and have to wait 6 weeks to go back for another fill. I thought i was done, but the radiated skin is too tight so now i have to wait all summer- so bummed. so enough about my crap, how are you doing through all of this? It s a rough road with no map to navigate, so I am glad to have the women here to turn to for help.
Nancy
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I, too, am having radiation issues. Its been just over a year since I had my lumpectomy and in August, it will be a year since stopping radiation treatments. Since finishing radiation, I feel I have gone through he*l and back - with rashes - burns, lymphadema of my breast and now radiation fibrosis...my breast that I had surgery tightened up & is now smaller than my right breast. I am still healing on the inside, from the numbness, shooting pains, etc., I feel, so I've been told....It itches too, especially if I try & wear a bra...speaking of bra, I have been trying to find one for sensitive skin, or one that doesn't make me look lopsided - maybe a sports bra....all of the doctors on my "team" have tried all sorts of things on my breast - lotions, massage, etc etc & it is what it is....my breast surgeon said I can either have a complete masectomy or have surgery on my other breast to make it match my left breast, which I don't want to do. I am at a loss and I do wish they would of told me before surgery of more of the complicatons that might arrise in having radiation....I feel I should of just had a mastecomy...hugs to any and all who are experiencing any of this...Becky
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Beachnut RAdiation really stinks and i feel the docs/nurses are so evasive and quiet about the problems during and after. Im with you, i feel if i have to have surgery on onw, i might as well do them both and be done with this crap. I still have not found anygood remedires other than fat grafting is a possiblity to heal the cells internally damaged from rads. i am not waiting an additional 6 weeks after last fill because my skin is not cooperating on the rad size, too tight. The options are few but I am still looking.
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So the wait continues. I get a fill and am sent home to wait 6 weeks in between, trying to get the radiated side to get with the program. Seems like forever since surgery on feb 28 and wish it could all be behind me. Living with TE's is not fun at all, plus i can't really get on witht he healing process until after the final surgery. I am in limbo. Wish others with prior rads/implants would chime in and share their experiences. Hanging on.
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Greencowgirl - I am getting my permanent implants in two weeks. Just finished up with rads in March. Rads side is a bit tighter, but surgeon says skin looks good. He will do fat grafting at same time as exchange to help with the radiated tissue. Another surgeon I consulted wanted to do fat grafting first, then another surgery a few months later with additional fat grafting and exchange. I have also been told that alloderm also helps with the radiation. Do you have alloderm from your BMX?
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My story is a bit different than your's. I had a bmx with immediate TE placement. Originally it was thought that was all the treatment I'd need, but the margins were not clear next to the chest wall, so I ended up doing rads. My TE was filled prior to starting tx. My rads side held up well, had problems under the armpit and high on the breast at the end, but it healed quickly. I did get capsular contracture though. When I had my exchange 10 days ago, the PS added strattice, as my skin was very thin, and he removed a lot of scar tissue. PS said that I can also have fat grafting to help increase blood flow to the area, but right now, I don't even want to think about another procedure. I have to admit, I'm nervous about complications, due to rads, and hope this works out, since I'm not interested in flap reconstruction.
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You have been through alot and more surgery sounds like dread. I am also not interestd in any flap surgery so hope this works out. My PS plans to use alloderm to cover the right implant and will also do fat transfer at that time. So the exchange surgery will be a big deal, but hopefuly the last. He also is considering a reverse trunk lift, which pushes the skin up underneath the breast to make a better skin fold(lower pole) I am not hot on that idea at all, so looks like aill be waiting it out. HOw are you doing 10 days out?
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The alloderm will help support it and hopefully help prevent contracture. I had alloderm placed with I had the TEs inserted. I haven't heard of a reverse trunk lift! I'm not sure I'd be real hip on it either, but I hate the thought of surgery, so perhaps that has something to do with it.
Today I am grumpy, lol. Left side feels good; righty, which had a lot more work done is sore. Lefty is larger and wider than the right, and I think a smidge higher. It really does look like a supersized hamburger bun! I'll be glad when they "drop and fluff".
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I hope the alloderm will help prevent future problems, ive heard the fat grafting works in a similar fashion. The trunk sounded weir, ps acted like no biggie, but you know how they are, its not their body/pain. I asked what the heck the non trunk lift side would look like, a tight side and a flabby side?? He said oh ill just lipo it if i need to to make it match! I am gonna have lots of lipo holes in me, and the horrid crochless spanx to look forward to. Ive heard it take some time to drop/fluff, plus you are still swollen as heck. What size and implant type did you go with?
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Hi everyone his is my first time posting... I finished radiation om july 15, 2013... Im having a hard time with breathing and feeling very tired and fatigued.. Is there any one on this panel thats is having a problem too...? I told my radiologist how i felt about not breathing right and the feeling in my throat and she said it was not related to my radiation treatment..i feel frustrated ... I didnt have any of these problems before... Thanks
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Hi Mootie I have also had some breathing problems and know of more people who also had so you are right about your feeling and the doctor either misunderstood or doesn't know! i was even told of possible lung side effects before I began...
Radiation pneumonitis occurs in I think 10 % and is related to how much the lung has been exposed. Also it is more common in people who have had problems with their lungs before. During chemo I began having breathing problems after neulasta shots. Mild cases of pneumonits just resolves itself after a while others need medication to reduce the inflammation. In very rare cases the lung can be permanently damaged. Do you have coughing as well? Is it constant?
How much do you know about your radiation treatment? do you know how many Gy was received by the lung.Mine went away after 2 months - started about 1 month after treatment ended. When I woke up in the morning i often coughed... Both for your own peace of mind and safety I think you should try to address this again, especially if it does not pass or if it gets worse.
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GreenCowgirl- I am also from Iowa and am wondering where you had your rads? I am sorry you are having such problems. I hope the new surgery is just the fix you have been looking for.
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Mootie- I had my RO consult 2 days ago. Lump in the throat was on the list of SE they gave me. She did say that since I had NO node involvement that they wouldn't be doing my supraclav area so that it shouldn't be a problem for me.
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Mootie, Hello, I did not have the lung problems you are having but i do know docs do not want to be real open about the rads side effects. I have long term arem swelling and numbness for a year afterward and they acted like that was just odd. What! I do my own reearch and find it is a quite common side effect from lempedema. I think mine was not nearly as bad as what others have suffered, but still I think I should Not be treated like a mushroom! Now after a BMX, the rad side is acting up again, uggg. so I am glad we have each other to compare notes with and get some peace and comfort. Best to you and never stop questioning Docs, they are just normal people, not all knowing gods.
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HI Mootie, Welcome and huggs my IOwa girl. I live close to Indianola, how about you? Well I did not get the lump in the throat til years after, it was around this year leading up to and after the BMX, so thinking it is stres related. I went to Mercy Cancer center in Wet Des Moines, my oncology Doc was the well known Dr Deming. Sweet guy and great place, I really felt cared for, HOwever the rads did not work out for me. My cancer returned 2 1/2 yers later. Fast forward to today, I am still in post bmx reconstruction since feb 28. its been a long and bumpy road. My nodes were not involved but i recall they still nuked clear up to armpit/clavical area. Fyi- I would neer refer anyone to Stoddard cancer center as they treated me like crap. Horrible experience for me. I transfered to Mercy and was treated like gold-It relly makes a difference in your mental well being!
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Hi again ladies, well it's been a while and I hope you are all going ok. I now have another cyst, this time it has a solid component so a bit worried... Have to wait until Friday now for a core biopsy. This is the third time I've had to have this checked out, sooo frustrating because the path last time said inconclusive from a cyst nearby. Anyone had a recurrence after a so called 'cyst'? Would value your views, thanks for being there girls.
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just finished rads last week...
i have to go back to work.... not looking forward to any SE
and i agree... the rad techs are not as instructive as the chemo nurses were..
going to rad tx feels... cold... quick in and out...
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Hi there..
I too had really bad chest restrictions and it was due too all the inflamation that goes along with radiation
. But its been a few weeks since I finished radiation and that pain in my chest has gone away. It does get easier and the cream helps too.all the best
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Hi, I finish 4 weeks of rads tomorrow. Have had great therapists even though it feels like an assembly line.
Have worked the whole way but have been advised that next 2 weeks will be the worst of immediate effects.
Was told that there would be permanent lung and skin damage. Nowdays with technology it seems there is an expectation we will inform ourselves. I figure expect the worst.
Fully stressed of course but I feel better when I read the submissions from everyone on this site. I am in Nz and things are done differently to the U.S.A but essentially the same treatment.
Cry alot but par for the course.
Best wishes
Sam
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Rads created alot of tightness and pain for me and just had fat transfer but adhesios to my ribs were so fixed they had to cut them first, time will tell, had 300ml fat put in, VERY uncomfortable first two days, now just sore but not a lot more than before although area is tighter of course as skin had to stretch....
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Hi all,
I finished rads on June 13th of this year. I had 33 treatments, on top of my lumpectomy. I am still debating tamoxifen, as it seems to interact with many of my fibro meds.
Anyway, I'm glad I found this thread because I felt find right after rads. I had very little skin involvement, and I felt chipper. Now, two months later, I'm having all of these weird pains around my radiated breast, and my rib pain is back that I had during radiation. I feel like I'm going backwards, instead of forwards. Heck, I don't even know what doctor to call to ask questions because it seems like there are so many and they all like to shove the issues off on to the other guy.
I feel "better" seeing that some people experience the pain and swelling much after the fact. I am supposed to start back to school later this month, but I feel worse than I did when school ended and I was just ending rads.
Grrrrrrrrrrrrrrrr
Thanks for listening.
Lynn
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Hi LibraryLynn, feel like we are in the same boat. Had lumpectomy March and finished radiation in June. Been doing good other than experiencing some discomfort in my breast. I'm to see my medical oncologist in a few weeks for a checkup. Hope he can ease my mind.
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Hi I am 7 months out from rad. I had TE put in at L masect. I am lucky to have gotten into Brava trial for fat grafting. Had 1 fat graft procedure which went well and then had TE removed and got a big infection and had outpt surgery to flush out the infection. Now my pectoral muscle is extremely tight all the time from radiation fibrosis. it feels like I am wearing a crazy tight bra even with nothing on. I have read that the stem cells in fat grafting will help reverse the fibrosis to a good degree as well as improve vascularity. There is an experimental treatment for rad. fibrosis using pentoxifylline and vitamin E which looks very good, several studies done with good results for most people. What they do not know is if a six or eight month course of these meds three times per day is enough or does these meds need to be continued long term. I am hoping the fat grafting with Brava protocol of breast recon will be enough. I also use this cream called Sodermix which is a vegetal form of superoxide dismutase which has faded the radiation hyperpigmentation considerably. I recently read a study about using Quercetin for rad. fibrosis. Was only an animal study but what tbe heck it is so benign I figured I would give it a try, as it will help my allergies as well. -
macb This is all such refreshing new news on treatment for rads-thank you so much for sharing! Most Doc cant use traditional stem cells, so my PS says, but they do use some kind of cell enriching formula to help more fat live. I think the concern with traditional stem cells is they could trigger any remaining breast fat/cancer to grow. I get so mad every time im think about those 7weeks of rads and that my only problem would be sunburned skin for 3 months. Seems sooo unfair to be misinformed, as the effects of rads are forever. Curious about the new rad experiment and thrilled to know some Docs are taking notice of the problem. SOD is an incredible antioxidant and will check into the quercetin. Good luck to you on your journey and I am proud of you for researching your best medical care/outcome, as Docs don't tell us everything we need to know.
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Hi i want to thank you all for so much information in this tread. I was mxd last year and then by the time the Onco saw me they asked me to start chemo right away, then had a bmx with TE at the same time in march 2013, then my p report showed my margin no clear so I had not choice i had to get rad in June 5 weeks. I am also having a very tight right side now but the PS said she could repair the tissue scar in Dec at my surgery when she will replace the TE with implants. I like you feel the rad onco does not tell us much about what we will be facing the rest of our life after having rad. I had not choice but still would have appreciated if they told me more. I now read from your experience and realize i am not alone, i will ask the PS this Friday many?. i hate that when i saw her last she brushed me out very fast and did not even explain much of my next surgery, i worry now about all the complications regarding my right side been damaged by rad. Anyway thank you ladies my fingers will be cross for all of you to get well soon. I am sure we will become stronger and will be able to move on eventually, these days i have been feeling down and not very happy, i just wish someone could wake us up from this nightmare. -
Enerva I feel very much like you about the rads ,giving us ALL the information and the darn Docs giving you the rush service! I could just scream. I have to triple check all the answers, ask tons of questions(as none are very forthcoming)and be in constant worry im getting the best medical care I can. I was on the phone the last 3 days trying to get a local office to do a breast ultra sound on some large lumps. My medical team is a 7 hour round trip, so want to do one at home and send them the results, sounds easy right?? nope. Still working on that. Im ready for this nightmare to be over too! During rads, which I hated the whole time(felt so toxic) I brought a fresh aloe vera leaf with me and opened it up and spread it all over my radiated breast(i did this for 7 weeks) I found a cream called exclaire I think that was made outside the states just for radiation, it worked well for the burning/itching afterward. I was burned up, it was actually black underneath the breast, but around 1 month after finishing I looked like normal. My rads Doc could not believe it, he had never seen such fast healing and health looking tissue. I told him what I had done and he seemed interested, but not sure if he ever shared that info with anyone else enduring rads. They give you some crappy chemical laden lotion from walmart-eucercin(are you freaking kidding me) No thanks, I made my own healing regimine, including vits,herbs juicing and healthy eating.
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Green Cowgirl you gave me a smile lol i did the same as you i bought an Aloe plant and i cut a small piece every day and pill the green skin and it was good my breast also is as clear now as the other one and skin looks ok my problem seams to be more the damage inside like it is much tighter than the left but last night at the BRA event i was able to addressed it with my PS who was one of the panel speakers so she says she will repair it during my next surgery. fingers crossed lol
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well my ladies glad skin is healed great I been out off rad since August 22 and my skin still had that square tan and I have no TE in the radiated side... What should I be expecting no reconstruction😔 so sad!!! -
Mastectomy w/TE, Chemo CAT and Radiation 36 days/4 angles - that ended over a year ago (Aug 28, 2012) Atrophy began in April, by August TE leak and eventually collapsed; atrophy continuing and now, outline of TE is pronounced.
Some history to my story:
Have had GERD for several years & on medication. In April (6 months after radiation) noticed trouble swallowing - but not consistent (had Dentist examine my neck and mouth; had a script changed to 2 pills instead of 1 large pill. . . so am aware - just didn't think it needed to be addresses/or critical!)
Last Sat. out to dinner w/several friends and noticed increased difficulty swallowing (almost choking) - and whispered the person next to me. Just a few minutes later felt really bad - pressure in my head - like the feeling of being up-side-down and blood flowing to head. Went home but promised friends I'd go to the ER if it continued.(Laid down and fell asleep – feeling went away, everything fine - but thought I'd better look into it. . . maybe thyroid or blood pressure?)
Monday left a message for Oncologist giving symptoms, he said to see my GP - who worked me into her schedule on Thursday. She does not think it's blood pressure (normal) or thyroid (physical exam normal.) She recommended a gastroenterologist - perhaps damage from acid reflux - or DAMAGE IN ESOPHAGUS FROM RADIATION. One of the cancer growth sites in my breast was laying on my breast bone - so radiation was focused at that spot. Told Doc. radiation effects (atrophy) is increasing now - this many months later, breast tissue is awful looking, atrophy of skin and muscle tissue shrivelling-up and drawing-in - so it only makes sense that my esophagus received mild amounts of radiation and maybe causing these effects now too.
GP Doc mentioned, of course, there is the possibility of Barrett's Syndrome, pre-cancerous disorder from acid burning the esophagus - but said the likelihood is less than 10%- - and not to worry.- - - - - ugh. . . annoyed and disgusted with this mess. So now I have an appointment with a gastroenterology this Friday Dec 13th, and assume more tests.
Like everyone else here wonders. . WHY doesn't radiology/oncology give us as much info as chem/oncology. . . so spoiled by the team experience with chemotherapy.
Question: Is anyone having long-term effects from radiation - a year or more? Atrophy? Anything else? Will this continue for years?
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