Side Effects of Mammosite Radiation Therapy
Comments
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Hi jingram4868.
I am sorry you are having so much trouble with your cysts or seromas as you call them. I am shocked to hear that your doctor would suggest putting you on vicodin to help this problem. What does an anti-anxiety drug have to do with your breasts? Please take the time to read all of my previous blogs which refer to all the cyst problems I've had and many of us still do. I would suggest that you not have any more seromas drained, because as you can see, they may come right back. Doing this continually puts you at great potential for serious infections according to my oncologist. That is why I have just left mine alone over five years now. Drugs are not the answer here. Best of luck.
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I was diagnosed with DCIS in June 2010 and had lumpectomy and mammosite radiation. It has been a little over a year. I do have a large mass on my breast at the site of the balloon. At times, it is quite painful. The dr's have said that it is a fluid filled sac. The surgeon has said that if he removes the fluid, it will just come back and it puts me at risk for infection. He insists that it will eventually go away. The pain is tolerable. My biggest fear is that this mass might hide a lump. I mean I have a super collossal lump in my breast. I don't think I would detect something smaller. However, I am having mammograms every six months, so as long as they continue on that schedule, I feel pretty good that anything would be detected. I know that they will not continue to do every six months indefinitely, so then I will likely have to vocalize my concerns. So far, I have been extremely pleased with the mammosite and would do it again in a heartbeat.
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Judy, a seroma isn't really a cyst. A seroma is generally the result of injury or surgery. It's not a closed, spontaneously-occuring system like a cyst is. Also, the Vicodin is being prescribed for the pain, not for anxiety. Perhaps you're thinking of Valium, which is an anti-anxiety drug.
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Dear cycle-path - thank you so-o much for your post!
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This being October, breast cancer month, I feel we should take a moment to remember and be grateful that we qualified for the mammosite treatment and are here today to complain about our seromas, so minor compared to what other women have had to endure. I have not read where anyone has had a recurrence. I had my lumpectomy and mammosite treatment in July 2007 and my seroma developed three months after. I am 4 yrs cancer free. I attended my first Education and Advocacy Day in Miami last spring and the work being done in Tumor Immunology and Immunotherapy is extremely encouraging. Judy Cook has suggested weight lifting, massage, and watching weight gain as suggestions for relief for the seromas. Try it; it works.
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Hi, everyone---This site is wonderful--thank you to whomever started it!
One year after undergoing a lumpectomy for DCIS and Mamosite radiation, I discovered a lump in the same breast. After freaking out I ran to my surgeon who assured me that it was a seroma caused by the mamosite. He did an ultrasound, drained some fluid and did a biopsy. It came back negative. Went back 2 months later (at my request) and did another ultrasound. He showed me that it was smaller. Going in 2 weeks for my scheduled Mamo and sono. My question is--does anyone else feel that the "lump" is bigger some days and smaller other days? Also does it ever go away? I find this very unnerving especially when I went for my Gyno check up and she said if I didn't tell her what it was she would have sent me for a mammogram. I appreciate all your input--Stay healthy! Ileene
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Hi Ileene:
Welcome to our blog. I'm happy to see someone else has found us. This blog has been pretty quiet for some time and I'm hoping that is a good sign for all of us. To answer your question, I had a lumpectomy five years ago. Shortly after, I developed a cyst and had it aspirated. Two and a half months later, it returned. Sometime later, I developed another cyst. Five years later, I have two cysts that have become quite hard like marbles near my original incision. I have been told constantly they are benign. If you read through all of our blog, you will see how different people have experienced different cysts or seromas. Mine have never shrunk and probably will never go away. At different times and stress levels, I feel different responses to them. I certainly know they are there and when I am in the shower, I try to glose over them. If you can accept the fact that they are benign, you can live a normal life. If you keep trying to get rid of them, they will only return. The most important thing is that you are a breast cancer survivor with a minimum of radiation and some of us who have used mammosite are left with these because they are not surgically closed and air gets into our body and forms these cysts or seromas.
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Thank you , Judy for responding to me. It is so comforting to know I can go to this site with questions and concerns and know I will get answers or opinions from women who understand just what I am going through. You are right--we are survivors and just have to deal with the "benign" annoyances that we will encounter.
Stay well, Ileene
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I was diagnosed 11/14/11 and had a lumpectomy on 12/2/11. Even though I am stage 0, the standard of care is doing some type of radiation. If I choose radiation, even after reading all the posts, I believe I will choose Mammosite (if I'm a candidate for it), but I was wondering if anyone can refer me to specific research that shows the rate of reccurence in premenopausal women with or without radiation (or with or without mammosite radiation). Also without having spoken to my Dr. yet in any detail about hormone therapy and the rate of reccurence with and without, does anyone know where I can find the research stats on this for a woman of my age (48). Thanks for all the information you have shared so far. It helps to go in with eyes wide open whatever I decide.
A later Edit:
I got some great feedback and responses to these questionsin under the Topic of something like "understanding DCIS" (it was under the DCIS forum). In case others are interested in the stats.
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Received Mammosite radiation in April 2008. (This followed a lumpectomy. Radiation was followed by chemotherapy and a year on Herceptin.) Insertion of balloon by surgeon was very painful, found by radiation oncologist to "not be in the cavity." Reinserted. Infection at catheter opening took six vigilant weeks to cure after radiation treatment was completed. Cancer and radiation treatment were to right breast. I have the usual lumps and recurring soreness over three years later. In January of 2011, I was diagnosed with mild heart valve problems which progressed rapidly over the last 10 months. Three weeks ago (November 2011) underwent heart surgery to replace both aortic and mitral valves due to "radiation induced aortitis and radiation induced valvulopathy." (I am 60 years old.) Connection may be rare, but I do suggest that women who have had any radiation treatment to the breast stay in regular contact with a cardiologist.
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Hi Everyone,
I last wrote in 8/9/10 but have been logging on from time to time to read the latest comments which I find interesting. Thought the readers would be interested in what I am facing today.
My breast cancer was treated in July, 09 with lumpectomy and mammosite. To this day I have a hard lump the size of a golfball which the onocologist has said is fluid/scar tissue. It is not painful and never has been - just a little annoying so I guess I'm one of the lucky ones. My new problem started in October of this year and I thought it was just a shoulder ache but when I could no longer lift my arms I went to an orthopedist in November and it was confirmed by an x-ray that I had a fractured clavicle. The doctors are puzzled since I did not have any accident to cause this injury so went to have a bone scan to rule out the possibility that the breast cancer had spread to my bones. (FYI - my original tumor was only 2mm and did not involve any lymph nodes) The test was inconclusive so the doctor opted to wait another month to see if the bones would mend naturally before having any surgery. On December 21 another x-ray indicated that the fracture had not come together so now my orthopedist has decided to be an oncologist and sent me today to get a CAT scan. In my research I have read that radiation can cause cancer sometimes decades after the treatment and in 1980 I had cancer of the tonsil and received an agressive dose of radiation - around 72,000 RAD as I recall. My present doctors seem to be ignoring that fact.
Is there anyone out there who has had anything similar happen to them? Would be interested in any information, In the meantime, I'll be getting the results of the latest test in a week.
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Hi Koko,
So sorry for all you are going thru. It seems we are learning more and more about the side effects of our radiation. Between what you have written and "choices" telling us that the radiation caused her heart problems, I know that I will be asking all my Drs many more questions.Also will discuss going for more preventative check ups. We are so lucky to share and learn about each others experiences on this site. Wishing you good results on your tests--please keep us informed. Happy abd HEALTHY New year to all.---- Ileene
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i will be starting mammosite therap tomorrow
had first surgery on 1/13/12..but dr called few days later said they needed to do more margin area.
had second surgery 1/20/12 plus they inserted the mammosite at that time. that same day i went to rad/oncology at akron general hospital so they could do CAT simulation...turned out i have too much air in the mammosite area they couldnt get good reading so i go tomorrow before my scheduled CAT& RAD to have another simulation done. The physicist said he was 1 millimeter off and did not like that so they will re-simulate tomorrow.
this is all so overwhelming and i have read where some of you have had issues two years from original mammosite...and i am trying to take this all in
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Munnybunni, I read your blog several times and I can't understand what and why you had to go through what you did after you had mammosite surgery. You did not state what stage your cancer was, so I don't know anything about what you needed. I don't understand CAT simulation. I don't understand size being off and air in your mammosite? Please educate me. Otherwise, I would be of the opinion that you went to some doctors that really put you through some stuff. I realize we have come a long way since my mammosite almost six years ago, but no one I have spoken with has told me about anything you had. Educate me please.
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Hi Munnybunni - I can thoroughly relate to what you have posted. I, too, had my first surgery and then was notified I did not have a clear enough margin. I went in for the second surgery not sure if I would be eligible for mammosite. Low and behold I woke up with the temporary implement planted, and the radiation treatment began. I am still dealing with the soma issues after two years - only three more to go on the arimidex (anti-cancer meds).
I did learn on my lastest mammogram in November 2011 that extra care is taken due to my cancer history. I have 'diagnostic' mammograms which just means more pictures, but I don't leave without the results. This appointment was traumatic since there were questions about the images from my right breast - my original cancer was in my left breast. I had to have more images taken and then a sonagram. By the time I was told everything was okay my nerves were shot.
I mentioned to the Dr. on duty that I was on the arimidex. Through him I learned that the arimidex fights whatever cancer cells might be floating around my system from my initial diagnosis but it does not prevent the occurence of any new cancer. Thought I'd pass this on. If anyone knows anymore about this, please post.
I wish you all the best munnybunni - my thoughts and prayers will be with you.
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the dr told my husband i have 1A
to be honest I feel pretty uneducated on all this and maybe that is why i cant be that informative. I have not had an opportunity other than originally hearing from my dr that i had cancer in the right breast and that she would do a lumpectomy. she explained about the margins and sentinel node they would do and that i would go to her office a week after surgery to remove the temporary and put in the mammosite one.
but, she called and said more of a margin needed cleared and i went on the 20th and had it done and the mammosite was put in.
as soon as they discharged me from the surgery area they wheeled me down to rad/oncol to get a CAT scan to position everything for the radiation i would receive on the 23rd. that is when i was told that air pocket develops in the area where they place the mammosite and hopefully by monday the 23rd it will be gone.
i have printed off all the question to ask, that is shown on this website...as I feel so dumb about all this and it seems when they tell you ...you have cancer my mind went blank and it was as if I wasnt even in the room as i was dumbfounded.
you seem so knowledgeable about this as i have read some of your comments ...as well as jimram4868..
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Dear munnybunni - take it easy on yourself. I think what you are experiencing, and I'm still going through to a degree - is shock. I can't tell you where the time went going through all of the cancer treatment, and as far as asking any questions - no, way - I was strictly relying on my doctors, mainly my surgeon, who I have the greatest respect for. Both my surgeon and my radiation oncologist are interested in hearing of my mammosite experiences since it is a relatively new procedure and all of the side effects aren't known, and therefore not able to be presented to all patients. This forum is great for passing on, and relating to, experiences and realizing you are not alone. None of us are -
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Hi munnybunni and everyone else. Thank you for explaining exactly what you had to experience with your doctor. I now understand. Stage 1A means the cancer was not very involved. You are not confused. As the other gals on the blog told you, you were just in shock. Not to scare you, but I think your doctor did some unnecessary things by not thoroughly checking you out beforehand. I am not a doctor, but all of us need to ask questions and if we can't do that, we need someone else who can do that. A lot of these doctors are not specialized in mammosite treatment. Many of the ladies I counsel here have had breast surgery done by a general surgeon who claims to be a specialist. He is a general surgeon and I know there have been problems. Munnibunni, please read all the comments in this blog if you can. Then you will get some answers as to why mammosite affects us as it does. Talk with other breast cancer survivors, especially women who have had mammosite where you live. Join a support group. You can call American Cancer in your area and they will refer you. We are all bosom buddies!
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I went for my first day of mammosite rad...things went well and I go again tomorrow
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Congratulations, munnybunni! It's pretty much down hill from here, with a lot of the anxiety being resolved with the first day. I will continue to keep you in my thoughts and prayers.
As far as your comments, Bosom Buddy, I know I went with a surgeon who was recommended to me by the breast cancer radiation department, and one with whom I was familiar. I do believe that at some point, especially being in shock, we have to rely on information and referrals we are provided. I will again state, I much preferred that my surgeon - the chief of surgery at Renown Regional Medical Center in Reno NV - was conservative during my first surgery, and when it was determined I did not have enough 'clear margins' took a more aggressive approach. This is not to say there aren't doctors out there who misrepresent themselves, but I believe that those are few and far between.
I am thrilled to have a place where I can relate to all of the people who have posted here and share in experiences. It is reassuring to know that we are not alone, and there are others who can relate to what each of is going through or have experienced. Thank you all!
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Hi Munnybunni -
I was wondering how you are doing now that your mammosite treatment is done. Know that you have been in my thoughts and prayers. I hope all is going well and that you are feeling a bit relieved.
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Hi, I am hoping someone can help me out with my question. I had a lumpectomy with 33 rounds of radiation over 7 yrs ago. Now the cancer is back on the other side. If I can have a lumpectomy(still up in the air) they said I could have mammosite. Does mammosite shrink your breast the way the traditional radiation did? My breast looked fine after surgery, but the radiation took care of that. I am now at least a cup size smaller and the indentation is bad since the radiation. It really does't matter much at this point, I just want to know what to expect. I have had enough surprizes lately. Thanks.
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well i finished it on the 27th jan...they even asked if i wanted to keep the mammosite thingie...so i did..
i did have just a smidge of radiation burn..per the dr...very very small
i went to my breast surg and she said I have a 22% chance for recurrence in 5 years if i do not do chemo..soooo they set me up for a visit with to get a colonoscopy, an appt with gyn..an appt for muga scan....and appt march 2 with chemo dr
i have invasive ductal....0/2 lymph nodes are negative....stage 1a....er&prnegative...and that is about all i can remember at this point
she said sometimes at that percentage the recurrence could be in female organs (i still have my plumbing) and brain....so i will do what I need to do at this point.
my sister was stage 4 metastaic (spelling??) and waited way too long after diag for any treatments..i think about six months after her mastect...i have a first couse that died from brain cancer...and i have 4 second cousins with breast cancer...so ....genetics dr here i come. i am 67 but it will help my neices know something and perhaps they can test for themselves.
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Hi munnybuni:
Haven't been on blog in a long time and today I read yours. I had similar results as yours and being adopted, I don't know family background. I am surprised your doctor suggested chemo right away. By now, you have had your chemo appt. and I am interested in knowing what your decision was. I would have sought out another opinion before I raced into chemo unless you are really confident that is your way to go. I never had any additional treatments nor took any meds after my lumpectomy almost six years ago. I'm doing the best I can and staying interested in my body. Regarding the other lady who breast shrunk after radiation, I'm not familiar with that happening to anyone I know. My mammosite scar was minimal and I still have a lovely breast. Again, I think it has a lot to do with how the doctor performs the procedure. Best of luck and blessings to you both.
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This is an update on my lumpectomy and mammosite radiation in July, 2009. Left with a golf ball size seroma since then. Uneventful until March, 2012 when I woke up early in the morning with a fever and earache. Discovered that the affected left breast was swollen and very warm to touch. Went to see onconologist after a couple of days and she said that it was infected and would need aspiration immediately. After she aspirated it once she wanted the radiation dept. to double check that everything was removed with another ultra sound. Two hours later was told that the fluid was still there and needed further aspiration which was done immediately. After another 30 minutes of being poked, the doctor said that he needed a bigger needle to remove the thick liquid so much to my relief he stopped the procedure. The fluid was sent to lab for analysis. Three days later my oconologist called to say that I had a staph infection and needed surgery to remove the problem. Originally she was going to leave an open wound after the surgery which she said would need to be packed with guaze twice daily by a home nurse but that since the site was deep and would be painful to pack, decided to insert a drain which would need only need a dressing change twice a day, for which I was very grateful. I was prescribed a three week supply of Keflex and Vicodin. They seem perplexed as to why or where I got a staph infection. One doctor who was attending the surgery said that lately she is seeing problems like this with patients who had mammosites a year earlier. It's been two weeks since the drain was inserted and so tomorrow I will see the doctor and hopefully it will be removed. Thought this information would be of interest to those who had or contemplating mammosite radiation.
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While I had traditional whole breast radiation, I was offered Mammosite and declined. I am sorry to hear what a difficult time you are having. I had a staph infection following a procedure to tie my tubes. They had to heal it from the inside out... the way you described it and, Yes!!, the recovery was long and painful.
I hope you will be feeling better soon! Thanks for posting.0 -
Kokokoko:
I am so sorry to hear what you had to go through. I've been waiting to see if anyone on this blog really had a flare up from mammosite and unfortunately, you have. Maybe, you bumped your breast or someone or something ran into you and caused the infection, because cysts in our breasts after mammosite are so fragile we have to be very careful how we handle our breasts and also people around us near our breast. From what you are telling us, it seems like they did not remove the sac holding the cyst, just drained the cyst best they could. I had one drained with a very large needle almost five years ago right after mammosite and it came back soon after and then another formed as well. My oncologist has not wanted to touch my cysts unless they are a problem because unless the sac is totally removed, they can keep coming back. I do not let people put their arms around me. I reach out with my left arm in front of my breast and extend my right arm. Please keep us informed as to your healing process. You are in my prayers.
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When first dx, I asked for the mammosite rads because I felt if I was going to get them, it had better be quick and easy. My BS does not like that procedure and discouraged me from doing it. I tried for another external partial beam rad treatment, but was denied that as well, so I did nothing. My BS told me at my last app't that rads are no longer the preferred choice for women my age (over 70) with hormone receptor positive bc, and that hormonal therapy is the best choice, so I guess by default I made the right choice as I'm now on tamoxifen.
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I am 5 years post mammosite radiation and still experience times of breast and armpit pain. I have been checked by my oncologist and everything checks out ok. Was told that this is just a new normal for me now. I very rarerly wear an underwire bra because it is one of the factors that cause the pain to flare up again. At times my breast gets very hard and when it does it is extrememly painful. I am just glad to know that I am not alone in this. I don't bring it up anymore to the oncologist because I feel they do not believe me. I am heavy breasted so I wondered if maybe that might be part of the reason I have continued to have pain. Just wish that it would go away BUT I am thankful to not have the cancer. Sometimes I wish that I had opted for the masectomy.
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I had my lumpectomy and mammosite radiation in July 2007 and I still have seromas that sometimes are hard with some pain. Judy Cook has suggested weight lifting, massage, and watching weight gain as suggestions for relief for the seromas. Try it; it works. I use a 3lb weight when I feel pain or hardness. Sometimes soaking in a hot tub works also. My affected breast did shrink a bit and is dimpled, but it is cancer free and that is more important to me. I heard a reconstruction plastic surgeon speak and I was impressed. His name is Roger Khalil Khouri and he is the founder of Miami Breast Center. Here is a link.
Roger K. Khouri, MD, FACS - Education - Miami Breast Surgeon
www.miamibreastcenter.com/surgeons/roger-khouri-education
Doctor Roger K. Khouri, MD, FACS is a leader in natural breast augmentation and reconstruction in the world. His practice is located in Miami, Florida where he ...
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