Side Effects of Mammosite Radiation Therapy
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To ChgResident: Like you I have DCIS <1.cm Stage 0, grade 2 and will know if nodes are involved in about a week. I have my lump. with SNB on tuesday, 6/30 Like you, I have spent many hours researching radiation. There seems to be no option I consider good. For a long time I had decided on mammosite for all the obious reasons and then more research sent me off in a different direction. Guess, being diabetic the exposue to infection stands out as the biggest reason to avoid this radiation. Also I feel that my right boob has been poked and needled enough and when I read of the after effects some women have on going never ending drains and pokes, it leaves me with a negative decision on Mammosite. Leaving full breast rad or no radiation at all I began to look at the remaining options. On my search I found data on the full breast rad on the shortened 3 week course and I have decided that I will either have no radiation at all or this 3 wk course..I have found that my rad onc does this shortened course and if I turn out to be a candidate, I plan on talking to him further. I read with interest your statement that you regret having radiation at all and could you elaborate on your feelings. Thanks Cathey
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I had an ultrasound at the same time I had my follow-up mammogram (six months). We just looked at this large dark rather fluid spot. My surgeon may have seen the pictures; my radiation oncologist did not. She did call me, but only to offer me some kind of pain relief.
Actually, I made myself better this week. I have massaged the scar tissue close to the chest wall, used kinesio tape on the surgery scar and on the dimple that the scar tissue close to the chest wall is causing. That seems to relax the pain and tightness in those areas. Anyway I am in less pain.
What they told me at the ultrasound was there was blood clot or fluid in the breast above the mammosite area. They (surgeon and ultrasound doctor) said that hopefully it will disipate. You say it could be a cyst, but I think it is very fluid right now.
Also, I do deep water aerobics two or three times a week. I checked with one of the teachers who also does PT. I asked her what was the effect of water aerobics on the lymph system. It simulates lymph drainage massage, which I figured out by myself and just needed confirmation. The water flowing over the skin when you are actively moving your arms is very similar to techniques I learned from a PT. Furthermore, I jump around in the water a lot, and I think jumping helps lymph. I am just trying to say that there might be some pretty safe things that we can do to help with this situation.
I certainly want to stay hopeful that this stage will pass. For a good many years I felt very much that I had control over most things in my body. Breast cancer sort of ended that, but I getting myself ramped up to escape further victimization. I had breast cancer, and I had radiation. Some of my cells are pretty dispondent. I apologized to them, and said, we had to get the bad guys, now we all can go on! Pep talk for cells!
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Hi ladies,
I haven't been on bco lately, but checking in today I saw this thread and decided to share my experience and also news from my surgeon...
I had mammosite radiation in 2004 in the lower part of my right breast. I too developed a seroma (fluid filled pocket) that caused more pain as time wore on. The surgeon hoped it would dissolve on it's own, but it never did. Two years later she drained it in her office. I developed a staph infection that led to more than a year of wound care, hyperbaric treatment, and eventually a mastectomy without reconstruction because radiated tissue doesn't heal.
I've moved on, but yesterday was my annual mammogram on my left breast and I saw my surgeon for a check up. She said she has STOPPED doing mammosite treatment because of me and a few other patients who have had painful seromas. After my experience, she will only drain a seroma if the patient goes through hyperbaric treatment FIRST, because the risk of infection is so great.
She explained that there is a new kind of internal, targeted radiation therapy that allows them to distibute the radiation more directly than the mammosite balloon. Sorry I don't recall the name of it, but it is supposed to be a significant improvement over mammosite.
Not wanting to scare anyone, but maybe my experience can save someone else from the nightmare I went through in 2006-07.
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Hi Cathey, I apologize for not responding sooner. By now you should have had your surgery and I hope that all went well and you are recovering. Your concerns are accurate about getting cut 3 times in a very short window. My right side has a lot of scar tissue with the combination of biopsy, lumpectomy and then the insertion of the mammosite catheter. I personally did not want to have any radiation as it kills the good with the bad and there are a lot of side effects. However, this is a personal choice. The first time I did it because they did not get wide margins on one side of my incision. It was either radiation or another surgery to get a wider margin. I opted for mammosite even though my oncologist thought that standard radiation would be better. I did not want standard radiation as I have read and talked to many people that have said it can impact future reconstructive work (God forbid that happens). He felt that mammosite was the equivalent of wide, clean margins but tha standard radiation would be a better option ---but did not guarantee the cancer wouldn't be back. So, I weighed my options and went with mammosite. The second time I had the lumpectomy (November 2008) on my left side and they got wide clear margins and I haven't done anything else. I have my next mammogram in a few weeks and we will see what happens...nerve wrecking but I feel like I am prepared for anything. Please let me know how you are doing as I would like to stay in touch with you. If you don't have breast cancer in your family, I would suggest that you read a book called "What your doctor doesn't want you to know about breast cancer". It will give you another perspective vs. the typical "standard of care" story that you will hear from every physician. New treatments are coming out every day but I'm of the belief that it could be caused by our environment. It sure can't hurt to make changes in your life while also treating what you have right now. Doctors don't always buy into this approach but my feeling is it can't hurt you and could help. Drop me a line when you have time and please take care of yourself.
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My surgery was a month ago and I completed the mammosite radiation therapy two weeks ago. I am very grateful for the information on the bras from Soma. I was experiencing so much pain from my other bras because of the wiring. I was so happy to finally have a comfortable bra that I wore it out of the store! Aside from that, I have been reading the comments by all of the members and I have been concerned about the effects so many have experienced. So far, my pain comes mainly from pressure. I love hugs, but now, they hurt!
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To ChgResident:Thanks for your reply. I had my Lump. with SNB on tuesday June 30 All in all the whole experience wasnt as bad as thought it would be. The needle location was without pain and then the Node shots were as bad as expected. Surgery went well and path. showed negative in lymph nodes (0/2), clear margins but Dx chgd from DCIS to IDCA due to a miinute amount of invasion at lip of duct. I have an appt with surgeon Monday the 13th July for post-surgery consult. I am sure we will discuss radiation. I received a notice from the onc. rad. that he is planning , based on my approval, on the shortened rad of 16 treatments over a 3 week time. His notification indicates that although my Dx changed to IDCA that my stage remains at 0, with grade 2. The size of removal is 0.3cm. When I note the big picture, I question the value of radiation in my case, considering the possible side effects of rad. Hard decision! I am sure my surgeon will suggest rad. Do you have any suggestions of questions I might ask the surgeon. Thanks for your interest. By the way surgery stitches are healing nicely..
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Hi Cathey, I'm glad that you are through with the surgery and now on your way to recovery. Glad your nodes were negative and that you had clear margins. Did they happen to say if you had clear WIDE margins?
You will go back and forth on the decision to have radiation...I know I did. No doubt your surgeon and definitely your oncologist will tell you to have the radiation. That's the only plan they know and they would rather be safe than sorry. Not knocking that approach but it's your body and you are the one that will have to live with this for the rest of your life. For what it's worth, here are the things I considered/asked before I made my decision:
1) Is this modified radiation plan going to kill all tissue and make it difficult for reconstruction surgery if this ever comes back? Get their opinion but also get a plastic surgeon's input. Your oncologist will say that the goal is to do the radiation to prevent it from coming back. But he/she won't make any guarantees that it won't. If it was 100% guaranteed I would be the first one getting full blown radiation.
2) I was told that Mammosite was the equivalent of getting wide/clear margins. I would ask how this 3 week treatment compares to Mammosite as well as standard radiation. If it is only the equivalent of getting wide/clear margins...that will impact your decision.
3) Is this shortened radiation externally treated or is this internal? How long has this treatment been around and what have the results been?
Uugh...I just don't get this whole "O" stage cancer and I can't help but think it is being overtreated. There aren't studies that support the "wait and watch" approach because everyone is afraid of the risk of what could happen. Not saying I'm not afraid too...I just want to be as informed as possible and make my own decisions. Bottomline, it's all about what you feel comfortable doing and you are the best judge of what will work for you. Years ago they used to do hysterectomies as a "standard of care" and obviously they have now determined that wasn't the best approach. Neither one of us has a crystal ball but you are doing the right thing by doing your homework :-). I have another mammogram on August 3rd. I'll keep you posted. Since I had DCIS in both sides...we will see if it is back in either side. Just another data point in this overall process. Please stay in touch and I will do the same. In the meantime, take care!
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Hello Everyone:
On July 15, I had my mammogram, my ultrasound and also an MRI because they found a fluid- filled cyst in my left breast again after having had mammosite surgery over three years ago. My oncologist said it was not cancer and that I should just accept it as it is as he did not want to aspirate it again or even try to remove the sac. He said if I removed the sac, another one would grow back and if I attempted to drain the cyst, it would fill up again. Told me when I have pain, to put a cold compress on my boob. This is all from the mammosite not healing correctly. So, if any of you are experiencing any of this, this could be your problem as well. Let's talk!
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I am going through the exact symptoms that you are having...it's been almost 2 years and I have a huge hard lump under the incision and constant terrible pain inside the breast...my surgeon said it is radiation burn and he's afraid to operate because I probably won't heal...what am I supposed to do??? live with this pain forever???. I am on painkillers (thank God) and I do get relief but I can't spend the rest of my life doing drugs...I have an appointment on tuesday with my surgeon and I want to know the worst case scenerio...will it ever heal???...I am also going for a second opinion about the surgery...the lump and the radiation burn are two separate things...why can't he just take the lump out??? I feel like I'm getting the runaround...What's your surgeon say about relief from the radiation burn?? thanks Joyb222@bellsouth.net0
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Hi Joyb222:
You did not say if you had mammosite radiation or the full-fledged radiation. If you had mammosite, the radiation should only have been distributed to the cancer site and in a minimal dosage and I would think not cause any radiation burn if distributed properly. From what you said in your e-mail, I think you have a fluid-filled cyst and the best way to locate if is with an ultrasound. I had two ultrasounds both times I had fluid-filled cysts. The doctor aspirated the first one because the pain was so bad from the incision to the top of my breast. This time, he refused to aspirate due to possible infection in the site. I just live with it as best I can. My oncologist said it will shrink and disappear in time. How much time is anybody's guess. It hasn't shrunk any so far. I would push for an ultrasound to see what's going on there. Most importantly, ladies, you must have confidence in your doctor. If you don't, shop around.
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I had a lumpectomy in late May 2007, followed by the Mammosite almost six weeks later in July 2007. My semi-annual follow ups were fine until 8/4/09, when my N.P. and the oncologist detected a "palpable area of concern" just above the lumpectomy scar while doing my breast exam. I had a mammogram and ultrasound on 8/5/09, which showed nothing. I met with my surgeon on 8/7/09. He felt the area and recommended a second lumpectomy later today, Monday, 8/10/09. He said he hoped the mass was just tissue that had been stiffened due to the effects of the Mammosite radiation. He also said he wouldn't feel comfortable with the results of a needle biopsy, as the mass was about the width of a silver dollar, although not very deep, maybe a quarter of an inch. After reading all of the above postings, I'm starting to wonder if I'm doing the right thing. I have only had a little discomfort and itching recently in the area of the scar, nothing like you guys have described. I wish I could find more information regarding radiation and tissue stiffening. Is stiffened tissue the same thing as scar tissue?
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Hello DebinCL and my other bosom buddies:
I can't believe what I read from you! Do not have any more surgery until you check with another doctor!!! I never heard of stiffened tissue. These doctors can come up with anything these days. They are hurting for money and need the business!!! I would never agree to another lumpectomy until I was sure there was cancer there. I suggest to any of you who are not sure about your breasts, to consult with or join a support group of women who have gone through similar to what you have. That is why this website is so important. We have all had mammosites that somehow have gone wrong for some reason. My oncologist still claims it is because the hole was left to heal on its own and a gap formed there and subsequently we are experiencing fluid-filled cysts or pain in that area. I am not a doctor, but I do counsel breast cancer patients and survivors for the American Cancer Society. I attended special training for this and have been doing it for over two years now. If anyone wants to contact me personally, I will be glad to share my phone number. I promise you if I can't help you personally, I will get the information directly from the people at American Cancer, if at all possible. We must keep talking because when we share our experiences, we can help each other. By the way, since my doctor told me to forget about my cyst, I have not been feeling the pain so much.
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Judy, thank you for your response. For better or for worse, I had the lumpectomy performed this morning, before I had the chance to log back on to this site. The doctor is guardedly optimistic that it was just scar tissue, but he won't know for sure until he gets the lab results.
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Hi DebinCL
I prayed for you all of yesterday after I read your e-mail. If you feel that you made the right decision, then it is for the best. Please let us know how everything turned out and how you are feeling when you have more information. I am definitely interested in learning what the doctor found by doing the lumpectomy. Best wishes.
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I went to the doctor yesterday, got the pathology results, and found out my lump was just scar tissue. I asked the doctor if the formation of scar tissue was common in women who had had Mammosites. He said the procedure was still so new that he couldn't say. When he did the initial examination before the surgery, he wasn't able to tell if the lump was cancer or just scar tissue, but didn't feel comfortable just leaving it in. My oncologist also thought it was an area of concern. At my appointment yesterday, he said that fluid had collected in the place where he removed the lump, so he had to aspirate it. He said it may refill with fluid over the next few weeks, in which case he would need to aspirate it again. I am very relieved it is not cancer, but I feel I need more answers. My next step is to make an appointment with my radiation oncologist to ask him if he is seeing this scar tissue form in other women who have had Mammosites.
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Hi DebinCL,
I have been following your posts and am glad that the lumpectomy went well. Your story worries me on many levels as I have a ton of scar tissue and I my doctors are not concerned. Not sure what to think about all the issues associated with Mammosite. Seems odd that these doctors are saying the treatment is too new to know a lot about it. It has been around for at least 6 years so is it just that they aren't well read on the subject? Now after having the lumpectomy you are getting the fluid that others have talked about. Seems like you traded one problem for another. Jeez! My thoughts and prayers are with you. Are you in a lot of pain?
Sincerely,
ChgResident0 -
I am not having much pain. I am confused that my oncologist and the surgeon thought it was necessary to take action. Tomorrow I will make an appointment with my radiologist. I will let you know what I learn. Thank you for your responses.
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Hi DebinCL
Been waiting to hear about your results. Oh boy, I think you have some doctors there that are giving you some wrong information. As Chkg Resident told you, Mammosite has been around for some time and it has. All you have to do is read some previous blogs on this site. Don't aspirate again, it will only come back again. Don't remove the sac, it will grow another one. You can get a serious infection or worse if you keep aspirating a fluid-filled cyst. Leave it alone like a lot of us are doing. Please also read the previous blog from DJD on 7/2009 and read what happened to her. If you are not sure what to do, ask questions and if you don't like the answers you are getting, please see a different doctor. A lot of doctors don't know how to do mammosites correctly and some don't even want to do them. You should only seek out a breast surgeon who does them on a regular basis. My oncologist told me to do nothing as long as there is no cancer in my cyst and that is what I am doing. Good Luck!
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cLinical studies of mammosite therapy have shown it to be well tolerated with mild side effects that generally last for a short period of time. Side effects that occurred most frequently include redness, bruising and mild breast pain. These did not occur in all patients. These are all common side effects of breast surgery and or radiation therapy and usually go away after a short period of time.
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Ceeja, what is the point of your posting?
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My surgeon told me I might have to have the area aspirated again in two weeks. I will be out of town. If some of you are not removing the fluid by aspirating, what happens to the fluid? Is it just absorbed into the body? Does it become painful?
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DebinCL:
Aren't you asking your doctors these questions? First of all, the fluid in the cyst sits in a sac. The cyst can move around from time to time in your breast depending on where it is. When you have stress in your life, it can cause pain due to what's going on with your emotions. Sometimes, I get a throbbing in my breast. Weather has a lot to do with how you are feeling as well. My cyst is at the top of my incision which is on the left side of my breast almost under my arm. Sometimes my bra bothers me depending on my movements. As my oncologist told me and I have told everybody on the blog, he said in time it should shrivel and dry up. How long and when I don't know. The cyst stays in the breast and the fluid stays in the sac in the breast. Therefore, it should not be absorbed into your body. I have had my cyst since last year and it hasn't moved. It seems to have attached itself next to my incision for my lumpectomy. If someone else is experiencing anything other than what's been stated previously on our blog, please inform us. Again, Deb, DON' T ASPIRATE!!!
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Hi All...haven't been here for a while...I too would like to know the purpose of Ceejay's post..she obviously is not a breast cancer survivor. In July, 14 months after a lumpectomy and mammosite, a mammo and ultra sound revealed 2 small cysts forming. One above and one below my incision. I was told it was nothing to worry about ...it is very "common". They will check it again at my next mammo and ultra sound scheduled in Jan. I guess its wait and see...
I also have scar tissue which has attached to my chest wall. I find that stretch exercise and yoga help with the pain. After reading all your posts, I have decided that I will not have these cysts aspirated
Shortly after my surgery my radiation doc told me that in five years I won't be dealing with BC or even feel any discomfort....I have since told him he is full of &%$@. I truly believe that if I had it all over to do again...I would have opted for a bilateral masectomy and reconstuction...
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Hi Everyone:
I've been waiting for this blog to start moving again and I'm glad to see tmas has joined in. I am so excited. I have some GOOD NEWS FOR EVERYONE WHO IS SUFFERING!!!!! The fluid-filled cyst that recurred since Christmas and the doctor did not want to aspirate again is shrinking. Yes, it definitely is and the pain is going away! Not too long ago, I started lifting heavy weights both with machines and free-weights at the fitness center. In free weights, I lift 25 lbs. In machines, I push 35 lbs. and I have noticed a difference in my upper body. My left arm where I had my lumpectomy was half a size larger than my right and flabbier. Now, both arms are about even in size. I have more strength in my left arm and less pain under my arm. There was an article recently in my newspaper that stated that breast cancer patients should lift heavier weights for a better healing and I had already started. So, ladies. It works. Try it and let me know you're feeling better. Don't be afraid. We're not fragile.
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I had Mammosite in March 09 after having had lumpectomies in January and February. My rad onc ususally prescribes Keflex as an antibiotic while the balloon is in place. Because I'm allergic to Keflex she gave me a zpack which you only take for 5 days but is supposed to continue working. I don't think it gave me enough protection against infection. The day they took the balloon out they noticed some signs of infection and gave me another zpack. It didn't help. I was back to the dr. a week later with a nasty infection. She sent me back to the surgeon and he aspirated it. What a relief it was after he aspirated it. I didn't realize just how sick I was with that infection. He gave me 2 strong antibiotics and said he may have to aspirate it again. He didn't because it busted open on its own 2 days later. Oh my gosh it was gross.
Since then it's been ok. It's still a little pink right around the area where it busted open.
I wish they had used a different antibiotic - one that I would have taken the whole time the balloon was in.
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djd,
The targeted radiation you referred to is Intraoperative Radiation Therapy (IORT). It is performed during surgery, so it is a one step proceedure, if all goes perfectly. It is being offered in clinical trials to women who fit the selection criteria around the US, but is more commonly performed in Europe.
Advantages: convenience, less radiation exposure, targets tumor bed directly
Drawbacks: delayed wound healing, especially if you need a reexcision because of close or positive margins. Lack of long term data. Possible higher risk of recurrence.
I eventually opted for the conventional rads and was lucky and had no problems. Just thought I would post this for women who are exploring options for shortened couse of rads.
Sorry to hear so many are suffering with mammosite after effects.
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My 2 year mammogram is tomorrow. I had lumpectomy and mammosite for DCIS under 1cm. I am actually 2 years and 2 months out, and a month ago the minimal but nagging ongoing pains in the site got a lot worse. I have aching and shooting pains and pain into my chest wall. Complicating this is that I had broken my right arm the year before and 5 upper right ribs 6 years ago (a mare, of course) and they all seem to ache.a lot, I am in Portland, OR and it is getting colder and damper right now. It is bothering me enough that I will let my surgeon know, if of course, this is not a recurrence, which is not statistically likely. Once I get a clear exam, I will look into massage, etc. Had I been told I would have this much pain this far out I might still have opted for the mammosite, but right now I am a bit scared, hence the web search and this post. I am an internal med doc, and have referred quite a few patients for surgery and mammosite, so I do need to keep informed about the experiences of others. I am surprised at the number of my patients who opt for mastectomy and no radiation, in spite of no survival advantage. They just want to "be done with it and not have to worry." At this very minute I am a little envious.
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I actually wanted to go with mammosite rads after my lump. My doctor had first suggested it and the rad. dr. agreed. Then at the next check-up prior to rad., my doctor took a closer look at the location and decided that he could not get the balloon in properly and that it wouldn't work. I was really unhappy about that! I went with traditional rads. (33 long days). I had my first mamo yesterday and all was clear. Now, I'm really glad I went with traditional radiation. Thank you all for your posts and information.
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I gals it is nice to see all of you.
I have a question , as you know there is a Voices of Mammostie on face book. No one is posting there. Is there a reason for that?
Reading the post here, I see there is a lot of good information . Each one of us have a different story and can share with others.
If you did not know about the face book site you can contact The web-master through Voice of Mammosite.
"We need to take care of each other"
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I agree...so we should suck it up?
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