Side Effects of Mammosite Radiation Therapy
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My balloon was put in on December 28 2009...Because of the Christmas holidays they didn't remove the "fake" balloon for 2 weeks and then it was another week before radition...I didn't take a shower for something like 4 weeks...OMG! That shower was the most amazing, wonderful shower of my LIFE...Baths just don't cut it...Good luck today and yes, enjoy that shower!!!
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Yep - it sure was great! I had to get my hair washed at a salon during that time too - it was a real treat.
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I had Mammosite radiation over 4 years ago. My radiation site continued to change for 2-3 years. At first it got hard and was painful for about a year. It then gradually changed to the point where it is soft and feels like regular breast tissue. There is not exactly a scar but there are some changes to the skin over the site -- not exactly discolored, but the skin just looks different. There is only one small spot of tenderness, but it's only noticable if I press on it. My site is in the lower inner quadrant, so I really can't see it unless I'm specifically examining it. I am pretty sure that the damage we experience from Mammosite is much less than the damage caused by regular external radiation. --Tricia
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Tricia... I can only speak for myself. Three years ago, I had conventual external whole breast radiation and breezed through it. No tenderness or pain during treatment. My skin did NOT break down. My tumor was also located in the middle of the lower part of my breast. My breast is fine. Impossible to distinguish my treated left breast from my right breast.
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I also had external whole breast radiation with no skin breaks. The skin turned pink/tan which faded until the discolor disappeared by a few months after RT was finished. During the same time period the breast did not feel "normal" but was not painful and did not present any problems. By a few months after RT finished the breast felt completely normal. It does look a little smaller than the other breast but that is because they took a chunk of tissue out in the surgery and the results would have been the same regardless of what additional treatment I had.
On this board you will find stories of bad effects from any treatment but these are all particular individuals. Each of us can try to keep an unbiased mind and judge for ourselves which treatments seem to have more bad stories.
Getting objective data on side-effects comparing different treatments is very difficult (if not impossible), but a statement like, "I am pretty sure that the damage we experience from Mammosite is much less than the damage caused by regular external radiation" is not supported by credible evidence.
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I had MRT in 2007 on my right breast and I still feel mild tenderness in the seroma that developed. In 2012 I was treated with chemo for left breast cancer and started external radiation and I can say that half way through I have been very fortunate with no skin breakage or pain. Had it not been for one bad lymph node I would have been a candidate for MRT and I definitely would have gone that route. We can only state what happens on our journey and not judge others for their choices. Good luck ladies.
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I think my last post was in February when doctors were concerned about my liver enzymes AST, ALT, and ASMA being elevated. I was told that this was not a normal side effect from a mammosite procedure and that I probably had autoimmune hepatitis.
The good news is that all the blood counts returned to normal when I was retested in March, and they remained good when tested again in May. I had a liver ultrasound and MRI that were normal. Since my blood work was OK in October 2012 before I had my surgery & radiation, my gastroenterologist & liver expert says, "it seems most likely that her transient transaminase elevation was related to her breast cancer intervention".
Soooo bottom line is I had a LOT of testing and anxious moments, but now feel great relief that all is well.
Probably few people have blood work done following mammosites, but if you do, I hope my experience helps you keep from being alarmed by elevated results.
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I haven't been on this site in ages and decided to see what is happening. It will be 4 years in Dec from my surgery and mammosite treatment, I had a mammogram and vist with the surgeopns PA yesterdy.
All is good. I had had some concerns. Guess I had unrealistic expectations. WIth only a 6mm DCIS, I figured after a yr, besides cosmetic issues, would be good as new. NOT. But as compaired to many of you, should not complain. I have followed somewhat of MURPHY"S LAW. After a 2nd degree burn showing up 4 wks out of treatment, I then proceeded to get a superficial abdominal thrombosis ( cordlike thing running from breat to waist) which after about 5 drs including all cancer related one finally went to a vascular surgeon - who said it was result of trauma to breast and soemtimes appears before someone is diagnosed and it indicates a possiblity of breast cancer) Then about a year ago or so, starting getting rib fractures in area of treated breast. 3 separate occassions. However at first would never have thought that was what was giving me stange sensation in the area. Even mammosite dr did not suggest rib fractures. Only after X-ray did she comment that there have been cases of asymptomatic rib fractures. In all cases cancer docs have said things were unrelated only to find out by myself, that they are ALL related. The wonderful PA i saw yesterday told me that breast will likely never feel normal. That the radiation causes scare tissue and hard tissue, rib and chest soreness. What upsets me the most is doctors not giving warnings of some things or after the fact recognizing what is going on and just telling me so I do not spend months investigating and worrying. Have any of you had rib fractures?
None of this is horrible, mostly worrisome. Most of this has taken second place concern to Cronic lyme. Just celebrated my sons wedding and glad to be alive!!
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Sonnie - Just reading your much earlier post. But it rang a bell. I had mammosite in Dec of '09. I was supposed to have an appointment with RO in 4 weeks But there was a holiday and office closed. SO went in 3 1/2 weeks and everything was fine. In 4 weeks, started to get a radiation 2nd degree burn that spread and ebbed thru about 4 weeks. It never was raw, just quite red, warm, turned brown an the skin flacked off. I got so scared. Got in touch with RO and she explained that often if there was a burn side effect, it showed up at about 4 weeks ( too bad all the infor I got before and signed didn't give that time table) Though I was only 2 of all of her patients to have this, she said compared to what I would have had with tradtional , it wasn't that bad. It truly wasn't, it was the surprise and not expecting it that really got to me.
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Hi smerrill,
Sorry to hear about your burn and rib fractures. I agree that the surprises are disconcerting!!!! It is especially hard when the experts disagree with the cause of the problems. My abnormal liver enzymes blood tests scared me for a few months until I was finally told by a liver specialist that the breast cancer surgery and treatment had caused it - not some new ailment.
I found a 2012 Medicare study report that says within the first year of diagnosis, 16% of patients who received brachytherapy developed infectious complications, bleeding, or seroma related to surgery. During the first five years, 14.9% had breast pain, 9.1% had fat necrosis, and 4.2% had rib fracture.
My radiologist argued with these findings that many variables could cause these findings to be worse than they really are; especially when women have Mammosites but do not meet the guidelines for safety with the procedure.
The best news is that the Medicare study said that there was no difference in the rates of overall survival between the brachytherapy group and the whole breast radiation group.
Glad you are staying positive and celebrating your son's wedding!! Congratulations.
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Hi Everybody:
I just wanted to wish each of you a Happy Breast Cancer Survivor's month. This is our month to spread the word about breast cancer and to stand proud that we are survivors and can celebrate! Lots of wonderul things are happening in the breast cancer areas of healing and prevention. Please try to wear something pink every day and let people know you are a breast cancer survivor and how thankful we are for the opportunity to have been on the cutting edge of mammosite surgery. Rejoice and be glad!
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I got bad news from my surgeon about Mammosite radiation. She is no longer allowing her patients to have it because of the large number of them who begin having pain 3-4 years latter. The good news is that the patients are not getting cancer recurrence at any greater rate than with regular radiation.0 -
Hmmmm......I could not find any info regarding pain 3 -4 years later........got any links?0 -
Shayne...What Sonnie's physician was probably referring to was the presentation of the following news at the 2011 San Antonio Breast Cancer Symposium, which SPECIFICALLY reports"
"....The investigators also noted an increased incidence of infectious and noninfectious complications (rib fracture, fat necrosis, breast pain) associated with the brachytherapy management strategy compared with whole-breast radiation....."0 -
I also would like other readers of this thread to know that I was offered brachytherapy and declined it and instead chose whole breast radiation and did well.0 -
That San Antoinio study was a very very very limited study of women over 65 I think, and women who were on medi-cal. So doesnt hold a lot of weight in my eyes. Just my opinion. I did A LOT of research on this, and went with the Savi device, no side effects or lasting effects a year out. I couldnt find any info regarding pain 3-4 years later with mammosite device.......if you can find a current substantial study, id be happy to read it.0 -
Shayne... You asked where that info regarding breast pain came from. The answer is coming from the 2011 Symposium. Clearly, her physician felt differently than you did with respect to the research and is now advising her patients NOT to have brachytherapy. Everyone is entitled to their own interpretation of how relevant the studies are. In this case, the doctor was concerned enough about breast pain to NOT recommend it.
Sisters come to this thread because they are in the process of trying to determine what active treatment is right for them. You did your research and chose accordingly. Sisters need to appreciate that brachytherapy, while covered by most insurance companies, is still experimental AND there still remains controversy over it's use.0 -
Yes. But just throwing a statement out there from ONE doctor that advises his patients not to do it, is not a service to the women out there who are considering this. Neither is that San Antoinio survey, which is poorly based, and that is not just my opinion. Otherwise NO doctors would recommend it, and clearly THAT is not the case.
They have been using brachy therapy for over 30years for prostate cancer, and longer for breast cancer in Europe. If it were "experiemental", no insurance would cover it.0 -
It IS still considered experimental. That was the first thing that my physician told me. Patients need to know that.0 -
MY insurance does NOT consider Brachytherapy experiemental.
Women should check with their insurance companies first, and of course do their own research.
Here is what is on the Aetna website:
Policy
Aetna considers brachytherapy (also known as interstitial radiation, intracavitary radiation, internal radiation therapy) medically necessary for the following conditions:
Brain tumors; and
Breast cancer (such as the MammoSite Radiation Therapy System (Proxima Therapeutics, Alpharetta, GA)); and
Eye tumors (e.g., choroidal melanoma); and
Genitourinary cancers (including bladder cancer, cervical cancer, endometrial cancer, penile cancer, prostate cancer, urethral cancer, vaginal cancer); and
Head and neck cancers (including buccal mucosa cancer, esophageal cancer, lip cancer, mouth cancer, nasopharyngeal cancer, salivary gland cancer, soft palate cancer, tonsillar fossa/pillar cancer); and
Respiratory and digestive tract cancers (including lung cancer, pelvic recurrence of colorectal cancer, pleural mesotheliomas, rectal (anal) cancer); and
Soft tissue sarcomas; and
Stenotic obstruction post lung transplantation refractory to other treatments such as balloon dilation, laser debridement, or stent placement.
Aetna considers brachytherapy experimental and investigational for all other indications (e.g., thyroid cancer, subfoveal choroidal neovascularization secondary to age-related macular degeneration) because its effectiveness for indications other than the ones listed above has not been established.
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shayne... I am not disputing that brachytherapy is approved by MANY insurance companies. However, according to the NIH it is still under investigation for breast cancer. AND, patients need to know there is still controversy over its use. You seem content with your decision to have had it based on the research that you did. I am equally pleased with my CHOICE not to have had it. This thread asks about side effects and sisters should know that there still is controversy associated with the procedure. This discussion board is all about choice. Let's agree that based on the evidence both of us believe we chose wisely and leave it at that.0 -
Fine. But i think its equally a disservice making a blanket statement about side effects that may or may not be substantiated. That is all i am saying. I myself was in touch with many women, some who had the brachy 10 years ago, and are all doing fine, reporting no lasting side effects. Just like anything, whether it be chemo, rads, AIs, LX and MX.......some people are just not good candidates for certain treatments, or for unseen reasons, have side effects. AND - it IS approved by the AMA and FDA, among others.0 -
no one has made a blanket statement. You asked where the poster got her info regarding breast pain. It was mentioned at the 2011 Symposium. Patients should be aware. And you and slice it and dice it any way you like, but it is still considered an experimental treatment with the collection of ongoing data. That was made clear to me by my treating physician and patients should know that.0 -
AMA FDA approved.........doesnt sound experimental to me. My doctor didnt say that to me, none of my doctors did. And mentioning a symposium that relies on a faulty study of women over 65, on medi-cal, who have limited options of healthcare, isnt a study id be putting a lot of faith on, neither does the FDA or AMA. People should know that.0 -
It's been quite a while since I have posted anything, but I didn't feel like I could sit back and just read the current thread. I was diagnosed in November 2009. My mammosite was performed in January 2010. In January 2011 my first aspiration was done for the fluid that had accumulated in the 'sack' left from the cavity of the device. I had another aspiration in July 2011. I was prescribed Vicodin to combat the pain from the mammosite site. At the time of the second aspiration my surgeon stated she was hesitant to recommend mammosite anymore due to the numerous side effects people were reporting. My husband can tell when my site is bothering me because I walk around with my right hand over my heart, pledging allegiance, to rub the site and help alleviate the pain. Mammosite was right for me at the time, because I was working and was considering the time involved. My husband and I have talked quite a bit about what action would be taken if my breast cancer should arise in the future. I would not do mammosite, I would opt for 'traditional' treatment of full-breast radiation.0 -
jingram... I am so very sorry to hear about how you are feeling. Nonetheless, thank you for taking a moment to share with us your experience. I wish you well.0 -
Phase IV Trial to Evaluate Breast Brachytherapy Using the Mammosite-Ml® (Mammosite ML)
http://clinicaltrials.gov/show/NCT01448447
Original Contribution |May 2, 2012Association Between Treatment With Brachytherapy vs Whole-Breast Irradiation and Subsequent Mastectomy, Complications, and Survival Among Older Women With Invasive Breast Cancer
http://jama.jamanetwork.com/article.aspx?articleid=1150095
________________________________________________________
BrUOG 291: Five Fraction Partial Breast Irradiation Using Non-invasive Image-guided Breast Brachytherapy (NIBB)
http://clinicaltrials.gov/ct2/show/NCT01961531
Finally, this week the American Brachytherapy Organization is hosting it's annual meeting in Las Vegas to discuss the following:
Recognize and understand
the principles and practice
of accelerated partial breast
irradiation (APBI): physics,
radiobiological and
clinical applications.
2. Compare the scientific
rationale for APBI and
receive detailed presentations
of completed and ongoing
Phase III trials.
http://www.americanbrachytherapy.org/meetings/2013_breast_brachytherapy_school_brochure.pdf0 -
I see this site has been busy since I posted two days ago. My breast surgeon has recently stopped allowing her patients to have mammosites because she is seeing too many of her own patients have severe pain a few years after having it done.
I chose to have it a year ago because the total amount of radiation 'grays' was less than for whole breast radiation. I hated the thought of any radiation at all - I am a bit paranoid about radiation and even stopped letting the dentist do xrays for a few years. I had firmly decided to have a mx, but got talked out of it by the radiologist at the last minute.
So far, I am not having pain, but I do have a small seroma and scarring. My breast surgeon said to use cocoa butter and message in big circles everyday. Hopefully, that will keep the pain away.0 -
Shayne...the study you refer to is based on MEDICARE patients...NOT Medi-Cal patients. Most physicians in the United States welcome MEDICARE patients and most MEDICARE patients can easily find a provider of their choice. In fact, according to AARP, a majority of Medicare patients are happy with Medicare.
Furthermore, you are entitled to either accept or reject a study's findings. However, you cannot change facts. And the one fact that you cannot change, despite not being told by your providers, is that brachytherapy is still under investigation. It is a fact, and NOT an opinion that it is STILL in clinical trial, regardless of which insurance companies cover it and whether or not the FDA approves it's use.0 -
This link goes to an article that gives what is still the best summary recommendations for accelerated partial breast irradiation (mammosite is one method of this). It was written by a committee of experts who range the spectrum of opinion on breast brachytherapy from pro to con and represents a survey of the available literature. In the time since then no new findings have produced a need to revise the guidelines.
http://download.journals.elsevierhealth.com/pdfs/journals/0360-3016/PIIS0360301609003137.pdf0
