Side Effects of Mammosite Radiation Therapy
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I had a lumpectomy in December 2009 for a ER+PR+ HER2- IDC followed by mammosite in January 2010...no node involvement...It feels like a large hard mass in that breast - no seromas or pain or dimpling...There is barely any scarring from the surgery or the mammosite insertion...
That was followed by another BC in the other breast that was DCIS ER-, PR-, HER2+ in February 2011 followed by 25 whole breast rads and 5 boosts that ended in May 2011 as that DCIS was too close to the chest wall for mammosite. No real difference in that breast from the whole breast rads...
My last mammo showed a "new area of concern" by the radiologist in the mammosite breast. My surgeon thinks it was something called 'fat neucrosis' that sometimes happen after mammosite and although the radiologist recommended a new biopsy, the surgeon, whom I trust for her opinion, suggested that I wait 6 months for another mammo to see if there are any changes...I was never told that something like that could happen from the mammosite...My next mammo is two weeks today - you can just imagine how I am feeling about this impending mammogram...
Having had both types of rads, I am not unhappy with the mammosite as it was a quick procedure compared with whole breast, but I thought I should let whoever is thinking of this procedure about the fat neucrosis thing...
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Ritaz:
Read your blog and are not familiar with fat neucrosis, so I went on the internet to learn some info. What I found out is that it is an occurrence in mammosites that is caused when too much radiation is delivered after a lumpectomy. It is not unusual for this to occur along with seromas or cysts or whatever we gals have gotten from mammosite. Your radiation oncologist should be familiar with this. I think you should definitely listen to your surgeon and not rush to have a biopsy until you have explored your other options such as an MRI or ultrasound. Your angel did not go out for a smoke. He or she is right there with you and so will I be. Please let us know how you do with your mammogram.
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I can add that fat necrosis can also happen with standard (external beam) radiation. I developed a firm lump with skin dimpling about a year and a half after I completed radiation - 25 whole breast treatments and 8 boosts. A biopsy of the lump showed fat necrosis. This was right above my incision, in the area of the boost treatments. Ritaz - I'm hoping your upcoming mammogram brings a good report!
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Well, let me tell you a story about my best friend and her mammosite nightmare. Yes, I said nightmare. She had a mammosite put in and after 13 days it finally was taken out. All the time she complained of severe stinging pain and her doctor (surgeon) did not pay attention to her. Told her she would have some pain, to have a glass of wine and relax. Well, about a month after her mammosite was removed, she started to have real problems. Still severe pain, kept calling her surgeon to report the pain. I accompanied her to a doctor's appointment and her surgeon was very "smart" with me when I suggested that the skin on her breast looked like it was "dead". She said it was just radiated skin, that was why it looked like it did. Well turns out, she contined to have severe pain, the spot on her breast got much worse and her surgeon did not do anything. She got a second opinion from another breast surgeon and he said that the mammosite had been placed incorrectly and it had cut off the supply of blood that that area of her breast. It was not just "radiated skin". She had several seromas which were drained, 3 infections from the "dead tissue" in her breast. She just had a second surgery on Friday. They had to cut out all the dead tissue which had penetrated through her breast almost to her chest wall. She has a gaping hole in her breast about 1 1/2 inches across and through her entire breast to the overlying fascia underneath her breast. It has to be packed once a day with gauze. You would not want to see the gaping hole in her breast. She is in terrible pain and has been since breast surgery in October. Do your homework and look for a very good surgeon. I would not advise anyone to have a mammosite after all the problems she has had. Now even if she wanted a mastectomy, there would not be enough skin to make a skin flap to cover the area. Her surgeon "butchered" her and she probably will have another 6 months or more for this surgery to heal, if it does.
Get 2nd opinions or 3rd opinions and research before deciding on a mammosite.
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Awhtsnk98:
Read your blog and couldn't believe what you told us. First of all, no one who has mammosite has the insertion in more than 5 days and radiation is applied twice a day for five days only. I never heard of 13 days. No one should be subjected to that! From what happened, it seems that your friend was not a candidate for Mammosite because there were not enough clear margins for the insertion. Her surgeon was at fault and if I were her, I would take this up with the everybody who was involved medically in her procedure. You must have total confidence in your surgeon and their experience with mammosite before you should allow this procedure. Doctors will do anything to make money and prove they know what they are doing. Mammosite for most of us was a wonderful procedure and even though we do have problems, we are dealing with them. I feel so sorry for your friend. None of this should have happened. She has a major lawsuit if she wants it.
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I think the key is getting a doc who knows what he/she is doing - as far as mammosite goes. Im lucky to live in AZ where the doc who pioneered one of the techniques is my doctor. They have been doing internal rad for a long time and teach it to other docs.
I got dx on my first mammo. There were also 2 other benign clear cysts. My Radiologist told me she had a patient who would come in every 6mos to have these v large painful cysts drained. One time she came in for a routine mammo and there were no cysts. The doc asked her what she was doing differently, and she said she was adding ground flax seeds to her food - smoothies etc. My doc said, Im not sure if THAT was the cause of her cysts going away, but they never reappeared again, so she relays the story to her patients to give it a try. Thought Id pass that along.
I am meeting my RO tomorrow to find out if im a candidate for Internal rads. There are 3 types of procedures - i hope I qualify! Good luck ladies and thx for sharing your stories
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Just visited my radiation oncologist because I found a new "lump" on top of my mammosite surgical spot and it was bothering me. He told me it was a fibrous cyst that had formed from scar tissue from my lumpectomy and mammosite after almost six years. He could see the cyst just by looking at my breast and how it had swollen. He told me it was normal and that it was not cancer. He also told me because I live in Florida it would get worse as the humidity increases in the summer here. He also said that it should become smaller or disappear eventually and that he would do nothing about it. He stressed that if it was cancer, it would be solid as a rock and not cause the pain I have been having such as rubbing when I move around at night trying to sleep. My ro is a very experienced doctor and is right up to current everything. He told me if it continues to bother me, he would prescribe some meds, but he does not believe in meds just for anything. He is calling for a diagnostic mammogram in August just to confirm what's going on. I will keep everyone advised if there are any changes. He told me to continue to lift weights and do whatever I have been doing. So, ladies, before you rush into any surgeries for unsuspecting discomforts, be sure to check everything out with the best and most complete doctors. My doctor told me I could call him anytime for anything and I believe him. He is also world famous in cancer research and I feel very blessed to have him.
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That's what happened to me. I had he balloon in but it was too close to the skin so it was removed.
Now I am glad I am going the traditional treatment of 5 weeks of rads. It has the longest track record with good results
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My breast is always tender and i get the shooting pains. i asked the B C nurse and she said, this was normal after rads and could take up to a year to settle, i am due to have my mamogram which is on 18th of may this month and am abit nervous as that machine squashes them like a tin can and it already hurts, the nurse told me to have some pain tablets an hour before hand which should help. so we will see.
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midnight1327:
Good Luck with your mammogram. When you go for your mammogram, ask the tech if they have a breast pad that they can put on the cold slab where you lay your breast. These are made of spongy rubber and they are like a buffer. You may have to pay for a pad depending on where you have your mammogram. I go to a women's health center in a hospital for mine. I also take half of a calming pill when I have mine so I don't really know what's going on for awhile. Also, try Rescue Remedy. Three drops under your tongue and you will be calm. GNC sells it and so does the internet. I've had pain off and on since my mammosite almost six years ago. Depends on many things going on around you.
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To BosomBuddyJudyinFtMyersFlorida:
What I am telling you is true. In fact, my friend had to have a mastectomy a week ago. The breast surgeon and plastic surgeon said they could not save the breast - there was too much dead tissue and they were afraid that an infection would develop that could put her in sepsis (although she has had infections before). They removed her breast and the terrible pain she had is finally gone. Understandably, she has surgery pain but she said that this is quite different than the pain she had before. She is starting to heal and has to have the drains and staples removed on June 5th. The doctor put in staples in case she had an infection and he had to go back in. But so far, so good. And she is contacting a lawyer because none of this should have happened. She is not sorry that she had to have her breast removed, just glad to be rid of the major pain that she has had for the past 8 months. Thank goodness, she found two caring surgeons to take care of her.
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awhtsnk98
Oh I am so sorry to hear what happened to your dear friend. That surgeon should be hung up and lose his license to practice medicine. I believe everything you wrote in your blog. I was just shocked to hear what your friend had to go through. I am sure if she had proper treatment the first time she wouldn't have had to loose her breast. The best part of this mess is that her pain has alleviated. I certainly hope she follows through with a lawsuit, because she has good reason. I am still dealing with my new cyst. As my doctor said, it would get worse before it got better because of our weather, I am really feeling the swelling. I can live with it as long as it is not cancer. It has gone down and then it flares up again. Of course, I am concerned. Six years and now this. We will overcome.
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My lumpectomy was a year ago, followed by a second surgery when the surgeon did not get a "clear margin" from the first. I then had mammosite radiation. After surgery, the incision pain got better and better, but in the last four-five months, the pain has become quite intense, particularly when I am lying down to sleep. My sleep is disrupted several times a night when I shift my body and am awakend by shooting pains from my breast. I have a very hard lump at the incision site, and oddly, the pain seems to wrap around my side to my right shoulder blade. I see my surgeon next week, and I will ask him for help with the pain. But, I have a feeling he isn't going to know much about followup----I hope I'm wrong!
My question is: what works? I've read about physical therapy on this blog, and I'll try that. Has anyone tried accupuncture? Can anyone recommend the type of PT I should look for, such as a person who treats wounds/scar tissue? I don't know what to do, and the pain is making me miserable at night. Thank you for any help, and I will try that Soma bra : )
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Kroche....Thankfully, you have an appointment next week with your doctor. If you've been in so much pain these last few months, why have you delayed calling your physician to have your pain and lump checked out? Some of the possibilities might include a seroma...which is an accumulation of fluid in the breast. You can also have a low grade infection at the mammosite incision location. These are only guesses...but I don't think your doctor is going to be happy with you when s/he finds out that you are having pain for several months and felt a lump and didn't follow up sooner. If you or anyone one else feel or see changes in your breasts or at your mastectomy site, you must be vigilent and see your doctor.
I wish you well. Thoughts and prayers to you.
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You're right---I should have gone to my doctor sooner. I kept thinking I was being a whiner. Then, when I just became sick of not sleeping well, I knew I had this regularly scheduled appointment, so I waited. Your advice is well put. Thankfully, my mammogram which was taken this week (one year mark) was clear, so this is some sort of cyst or infection or adhesion-----but apparently not a cancer. Still, I should have gone in earlier. I will post again after my surgeon sees me. I am on a mission to feel better, and if I find accupuncture/physical therapy/flaxseed/new bra helps, I will definitely let others know!
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I did indeed have a seroma, and it has been drained twice now. I see my surgeon again in one month, and if necessary, he will drain it again. The pain I was having is MUCH better. Thank you for your suggestions and concern. You were right about the seroma!
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Kroche:
Read your various blogs and I am a little concerned. I, too, have several cysts and they bother me from time to time. The first time one of the cysts filled with fluid, I had it aspirated. Approximately one and a half months later, the sac filled with fluid again. I went back to my oncologist and he did not want to drain again. Told me the sac would just keep filling up and every time they would drain it, more chances for cancer would recur. I know once the fluid is drained the pain goes away for a short time. My question to you is are you going to keep having the cyst drained if it fills up again and again? My doctor as well as yours has already told us it/they are not cancerous. My doctor asked me if I could live with mine just by knowing they weren't cancer and I responded yes. In fact, I just got my third one in the past six months from scar tissue buildup from my mammosite almost six years previous. These are things our medical people never tell us about until something actually happens. We've gone through a lot and some of us are going to be left with all kinds of scars. But, we must remember we are survivors and this may be the price we pay to be one. I am thankful.
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Hi Everyone:
This is in response to my last blog here. On Friday, August 3, I had a diagnostic mammogram because there was an additional cyst or mass that collected in my breast earlier this year. The tech was very thorough even comparing my previous film from several years ago. She showed me there was no difference except for the new cyst. The radiologist referred to all my previous film since my lumpectomy in 2006. She said since the mass was at the top of my surgery, it was a non-malignant mass and nothing to worry about. That scar tissue from mammosite can continue to collect even after six years of surgery. I had the mammogram done in a highly reputable hospital where all my records were and where I had had my lumpectomy. I trust them explicitly. I still have pain from time to time and when it really gets unbearably hot here, my breast even starts to swell with the cyst or mass. Once again, I can handle anything knowing it is not breast cancer. I am so thankful. So, ladies, I will keep my two cysts and scar tissue just where they are.
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Hey Judy - just noticed your sig line. I didnt know they tested for HER2 in a DCIS patient.........?
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Hello Shayne:
Your comment caught me off guard. I promptly referred to my original pathology report to review exactly what was determined when I had my lumpectomy in 2006. At that time, I found no mention of HER2 on the report. Today, I checked how my profile was entered on this blog and all the questions I was requested to answer for my diagnosis on this blog. I did not check the HER2 box originally as the blog was set up and today I tried to edit my profile and it came back exactly as you see it now. So, I guess the people on the blog know more than we do as far as diagnosing results. Either way, I am a six-year breast cancer survivor and am blessed and thankful!
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Shayne, some doctors do HER2 testing but it is not standard. They were doing it more often when the MD Anderson clinical trial for Herceptin for DCIS patients was open (it closed a couple of years ago). Until the results from that clinical trial come out there is no real reason to test for HER2, since it does not offer any treatment options for us.
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Thanks for clearing that up for me Blinthedesert........
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Good to see you are doing well. Sorry we didn't run into each other in Flag ;-)
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October is around the corner, bringing with it breast cancer month. I hope everyone is doing well and staying healthy. I was about to celebrate five years of being cancer free when this year's mammo/u/s showed an area of concern. Judy Cook has been helping me cope and I am very grateful. While I was a candidate for mammosite in 2007, this time the cancer was in one lymphnode of my other breast so I have a port and am starting chemo on Tuesday for 12 weeks followed by 7 weeks of radiation. Seromas form even when you do not have mammosite radiation treatment. Let's be kind to each other; we are not doctors, just women who have been there done that. Good luck to everyone.
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Hi Karen
Best wishes on your treatment.
If I may ask, who is "Judy Cook"?
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Hi NSJ2 and everybody who cares:
I am Judy Cook and I have been responding to this blog for several years. I am a six-year breast cancer survivor and thriver. I also have been counseling breast cancer patients as a volunteer for American Cancer for over five years. If you read this blog from some time ago, you will see the things I have gone through and have graciously accepted thanks to God and my radiation oncologist. October is our month to stand up and get noticed and to be there for other bosom buddies that we meet or come into contact with. Share your story with them and give them hope as we have been given. Rejoice that you are a SURVIVOR when so many others didn't make it. GET IN THE PINK!!!
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Hi NSJ2 and everybody who cares:
I am Judy Cook and I have been responding to this blog for several years. I am a six-year breast cancer survivor and thriver. I also have been counseling breast cancer patients as a volunteer for American Cancer for over five years. If you read this blog from some time ago, you will see the things I have gone through and have graciously accepted thanks to God and my radiation oncologist. October is our month to stand up and get noticed and to be there for other bosom buddies that we meet or come into contact with. Share your story with them and give them hope as we have been given. Rejoice that you are a SURVIVOR when so many others didn't make it. GET IN THE PINK!!!
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I am a newbie, and appreciate reading your posts about what to expect. My Mammosite treatment went well. My Doctor was surprised at how little color I had on my skin and how little drainage I had from the insertion site.
However, my surprise came a week ago with redness and itching over the treatment site. This was a month after treatment. I was told to use cortisone cream three times a day in addition to the Ultra Lite cream I use. Is this late redness common? Does it last very long?
Thanks for any info.
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I had some discoloration that turned to peeling . . . not really red. My ND prescribed a liposome oil to use that I mixed with castor oil. It resolved itself in a couple months -yea, it took that long for it to look totally normal again.
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Hi Shayne,
Thanks for your reply. Did your discoloration happen right away or wait a month to begin?
I am glad yours looks normal now!
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