Side Effects of Mammosite Radiation Therapy
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In April 08, I had stage 1 IDC Breast cancer, stage 1, wide margins, clean lymph nodes. I too had a Mammosite and share the pain and a cyst at the radiation site. I share many of the painful symptoms mentioned here. Did anyone else have a CAT Scan before each radiation treatment? I had 10 radiation treatments in 5 days and 2 CAT Scans a day (10 total). Is this standard procedure? I believe this is part of the ongoing overall body pain I am in since mt treatment. I also had 4 rounds of chemo. God Bless all of you. Stay healthy.
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Hi Annette and Everybody:
To answer your question about CAT scans before your mammosite radiation treatments, I never had to have any CAT scans or anything else when I had my radiation treatments twice a day for five days only. Another question I want to address is why we aren't on Facebook. First of all, I am not interested in putting any of my business on facebook for the whole world to see. I have been asked to join numerous times and have refused. I am satisfied with this blog that we have because all the people responding have experienced similar results from having mammosite treatment. I read every one of your blogs recently and I am interested to know how some of you who had so many concerns are feeling today. I, myself, still have the cyst in my left breast just above the incision and the only time it causes me pain is if I am stressed, I overdo my exercises or I don't feel good overall.
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Dear Ladies,
I had a second lumpectomy last August. One of the reasons I went ahead with it was because my sister-in-law died of breast cancer. Her cancerous lump was not discovered, because it was covered by scar tissue. My oncologist and surgeon thought my lump might be scar tissue, but it looked peculiar. I didn't want to take a chance. I also took time to select what I thought were the best doctors. I thought I could trust them.
After the surgery, I had one aspiration, but things have returned to normal now. I haven't had any more problems, other than a little bit of itching.
When I look back at my mammosite procedure, I would have it again. I think it was good to have such localized radiation. Only time will tell. In the meantime, I am trying to think positively. Wishing you all good health and peace of mind.
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Hello everyone,
I stumbled over this website at the end of October and I read everyone's comments. I has really been helpful. I had a lumpectomy in April '09 and mammosite radition. I was really great until July and then became very very sore. I did exercises and that seem to help alot until I went to my 6 months mammographm on Oct. 1. I haven't been the same since. As many of you have described, I am in a lot of pain. Right now it worse than ever. Lots of shooting pain. Right before Thanksgiving I went to see my surgeon. She aspirated the fluid sac and I did get some relief, but that didn't last long. After I did that, I read that some of you said not to do that. One of you suggested more exercise and I've done that too. I can't sleep well at all. I have to sit up in bed I'm so uncomfortable. My surgeon will only tells me to take ibrouphen 4 to 6 hours. It's really not cutting the pain enough. I have already called her office back again ast week and her PA talked to me a long time and I asked her lots of questions which helped, but I'm now I'm at a loss of what to. Do I go back to my surgeon or my radialogy oncologist? I do have my next appointment with him in January, but I need some relief now. The last two days despite exercise and massaging in the shower, I'm in a lot of pain. Any suggestions? Thank you.
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Dear Beccagc4,
I am sorry to hear that you are in so much pain. Unfortunately, I don't think your radiation oncologist or surgeon are going to offer much help. The only thing they seem to know about alleviating the pain is to aspriate the fluid.sac.... which will then come back. I experienced the pain you are experiencing for about 8 months. It didn't happen immedialy (like you have said) but I was told that it was due to the body healing, etc. What did work for me was acupuncture and massage. Have you tried either? Only go to a place that is experienced with this process. It can be a little painful but it will pay off. And, keep working out as that will only help. Please know you are not alone. Goodluck!
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Hi- Just found this site 2 days after finishing mammosite therapy. Had only heard glowing reports. This might have made me rethink my decision. I was looking for side effects because I have been feeling nauseous. Has anyone had that and did it go away? Is there anyone out there who hasn't had side effects 2 years out? This is not very reassuring. Since most of you mention scar tissue etc, is there some sort of massaging we are supposed to be doing and if so when and is there a particular way. I am wondering with your experiences if there are things we can knowingly do now to help prevent these things, My procedure is in a trial to I gather limits these effects and make it available to more people. It is a multisite or location radiation within the balloon. GIving lower doses closer to the skin and heavier in other areas. My treatments were 10 minutes each preceeded by a sonogram before each to assure the balloon was fully inflated and well positioned. Hopefully it will cause less severe reactions than experience by many of you. WOuld appreciate hearing from anyone about the nausea. Thanks
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Hello Everybody:
I'm going to reply to beccagc4 and Smerrill if I can in some way and then I am going to tell you what works and doesn't work for me. Becca, I think you should see your radiation oncologist because this is the doctor you worked with on your mammosite. This doctor needs to assure you that the cyst is not cancerous and you have to live with it for now. Smerrill, I never experienced nausea from the mammosite. I'm thinking you are doing a special trial and that may be part of it. You need to ask your radiation people a lot of questions regarding this trial and side effects. Ladies, if you are drinking alcohol, you need to stop. Alcohol in breast cancer patients exacerbates the return of breast cancer. It also causes pain and throbbing in the breast. I was a social drinker before my surgery and gave it up after. Whenever I have a drink, pain and throbbing come back. Also, depends in what part of the country you are living. If you live in cooler weather and you recently had sugery and a mammosite, the weather and stress will affect your breasts. Lastly, check your bras. Make sure there is no pressure around the mammosite. I have a workout bra that kills me, but it protects the rest of my breast. My cyst from time to time really annoys me and I keep thinking there is more going on, but I really don't know.
Merry Christmas, ladies and a New Year filled with good health, no pain and prosperity.
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WOW! I THINK I'M GLAD I FOUND YOU!
I couldn't find anyone on this site, that had the procedure, except one, a nurse! I had the MammoSite device implanted Dec. 4th during the Lumpectomy....then "switched" to the "prototype" 3 days later! smerrill ....I think it is the same one as you are referring to! I did not have a sick stomach at any time with this.I have had no problems..... so far...... Just tired! Did any of you take antibiotics while the device was implanted? The surgeon started one, during surgery, & this is the first day that I am not taking any! So this is CHRISTMAS, and I have been taking them since the 4th....The site did get a little infected, because from what I was told, "your body tries to fight anything "foreign" in your body." But I think it really went well....in my case!
AND BosomBuddyJudyinFortMyersFL....That is so right, about living in a colder climate! I live in Denver, where it is a whopping warm 10 degrees right now...And everytime I get chilled, or goose-bumps, my "recovering" breast just TINGLES & hurts! Ha! I thought it was just me!
I go see the Radiologist on the 29th, but my surgeon told me last week, that everything looks good! And then I have an appointment with an Oncologist to talk about Tamoxifen!! Are any of you on that treatment, & how is it going? I am 72, & seem to be allergic to EVERYthing, & I'm hoping that I can "try it out" for about a week, before getting a prescription for it!
I am only hoping that I do not get the pain you gals are describing! Do you have any suggestions that I can do to prevent this from happening?
Thank you gals, & MERRY CHRISTMAS! xoxoxoxo Jeannette
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So glad to see activity even at this busy time. Bussonbuddy- thanks so much for your response. AM feeling better as days go by. Less nausea . Jeannette- I was given oral antibiotics the day of the lumpectomy and stopped them 2 days after the completion of radiation and the catheter site had closed up. I have had no infections. DO think the nausea was caused by that upsetting my stomach. Though I live in CT have not noticed the cold causing anything,
I believe my surgeon will talk about Tamoxifen when I go back. I really would prefer not to if I don't have to. At one point , the surgeon mentioned following up surgery with radiation and/or tamoxifen and that the radiation was more effective if only having one. I wonder if it is necessary considering the tumor was only 6 mm, totally encapsulated. anyone else taking tamoxifen. DOn't recall seeing in the posts, but then I wasn't looking for that at the time. Happy Holidays. Glad you too are doing well jeannette. Susan
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Susan! Thanks! Yes, I will post, since I finally found you, Ha! I was reading other threads, but nothing about the Device & side effects!
Yes, I'm really interested in you gals & if you are taking Tamoxifen! I've been looking in the past posts, but found nothing yet...Hope you had a fun Christmas! Jeannette
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Jeanette and Susan,
I am not sure whether you have discovered it yet, I didn't for months and months, perhaps you can benefit from my stumbling around this site: You can use the search function at the top right of the page when you are on the discussion boards page. you have to click on it, and then you are brought to a page where you can type in your term(s), I just typed in mammosite and came up with like 59 pages - ranging across the many forums - you may be thrilled to see your own entries on this thread found via your search, but there are alot of postings, mainly on the radiation forum. Also, pre-lumpectomy, when I was researching what my radiation alternatives might be, I googled both mammosite and breast brachytherapy and came up with loads of information.
There is also a forum here on Hormone Therapy, in which Tamoxifen has its own threads. It gets a little confusing since women with invasive cancer who are post menopausal or who have had their ovaries chemically or surgically blocked are given the option of drugs other than tamoxifen. I believe that for now, tamoxifen is the only FDA approved hormone therapy option for DCIS.
There is a genetic test for tamoxifen metabolizing which is gaining acceptance, If you use the search function on this site for cyp2d6, you will find loads of discussion about it. briefly, tamoxifen works to block estrogen reception by breast tissue only after it is broken down in the liver - to endoxifen. some people due to their genetic makeup either can't break it down (metabolize it) , don't break it down very well (intermediary metabolizer) or do so very fast (extreme?). And then there are those (the majority) who metabolize it very well. This genetic metabolizing thing impacts our reaction to alot of drugs besides tamoxifen, so if you have a history of over/under-responding to some drugs, you might want to share that info with your oncologist when you discuss tamoxifen.
JulieE
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Hi JulieE!........ I tried to find the site you were talking about, by typing in mammosite in the search box, but nothing came up like you mentioned! Am I doing it wrong? Is there anyway to send me the link? Maybe I'm having a brain fade, but I couldn't do it!
I wonder if my age, 72, will have anything to do with taking Tamoxifen or not? I'll ask on the 4th. And I will tell the Oncologist about all the problems with hives & rashes when I see him. I google EVERYthing, but I couldn't get to the site you talked about! Thanks again, Jeannette
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Bosombuddy- Have to thank you for your suggestion regarding bras. I ordered the one you mentioned and another sports bra that hooks in the back, so you don't have to go through contortions to get it on . They came in 4 days and the one I tried today is great.
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hahaha Jeanette, above is the url for the page that comes up when I search for mammosite. see if you can paste it into your browser OR scroll up to the top of the page you are now looking at and click on the word search, it is under log in or if you are already logged in, log out!!! The search function on the bco home page doesn't get you to the discussion board archives.
this reminds me of once when I was at work, I received a phone call about a new brochure we had printed and distributed. The caller had copies in English and wanted to know if we had copies in Spanish, I said yes we did, so he asked how could I get one. I asked if he had the English brochure in front of him, he said he did, I said, pinch the left top corner with the thumb and index finger of your right hand and quickly flip the brochure over, voila! printed in Spanish on the back!!! we both had a good laugh about that.
I think the internet and all these webpages and such are probably just as simple, but I know sometimes my brain doesn't seem to work the same way as that of the "webmaster"
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I GOT IT, HAH! In fact, I found it both ways! I was doing it wrong...OBviously!
And thank you for the information! I think all the information I can get on a subject, just makes it easier to understand, and know what to expect!
Also, I want to at least try Tamoxifen! Like I have been reading, I will "throw" everything at this "set-back" in my life, that I can! One of my friends took this for 5 years, after her Mastectomy, & she says it does have beneficial side effects for your bones! So I'll find out on the 4th!
I'm also going to ask the Radiologist this Tuesday about lightly massaging my whole breast...the incision, node, & the MammoSite area...It just hurts sometimes, and is tender...but not bad! I know....I am very lucky!
I would STILL do the MammoSite device over again, instead of the longer type of Radiation!
It is sooooooooo COOOOOOLD here~ in Denver! I can hardly wait until Spring, Ha! I gotta get those tomatoes going in February...Something to look forward to!
Thanks Julie!0 -
Hi Everyone. I had been very concerned after reading about all the site effects you have been experiencing. My procedures were finished on Dec 18- the 5 day , 2x per day mammosite raditaion. I decided to get in touch with my radiation oncologist to inquire what she has experienced in her 9 years or more of researching, developing protocol and treating patients. I wanted to post her response, so some of you thinking of using the procedure but reconsidering after reading all of this can see her response to me.
Quote".Yes the internet is a dangerous place, however, I do think that a lot of inexperienced people have tried the mammosite, and lessons have been learned. The protocol that we began with was that accepted for a national phase III trial, and none of these types of problems have been reported on that trial with over 5000 people enrolled. We improved upon it however, by doing the multidwell approach. We have had only one grade 2 skin toxicity, which means a mild sunburn like redness, self limited, in one of our 20 patients. Normally Grade 2 and higher skin toxicity is expected in 50% of patients using the national protocol. So, ours is significantly better. I think you are going to do well, keep positive!"
SO while I am saddened for those having all of those problems, we can only hope that others going forward may have better experiences. I will certainly keep you updated on my progress. I think it really important that newly diagnosed patients, opting for this procedure, really investigate who the doctors are, what their experience. I have gone to a prominent teaching hospital. My doctor has been heavily involved in the protocols and improvement in the technology. My surgeon said they are very selective in who is offered this kind of radiation. She also mentioned that previously, the catheter exited the body right near the lumpectomy site. Further improvements have changed that. My site was below my breast just about at my bra line. Not sure where yours have come from. need to get to work, ugh. Being away was really nice. Hope this brings some added info to the conversation.
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Hi smerrill...That was a good informative post! And yes, by all means, you should check with your surgeon to ask how much experience they have had with the MammoSite device! I was very fortunate to have a "team" that I trusted, & would answer all questions I threw at them!
And I WOULD recommend the Mammo-Site Device to any that asked me...but you must again, be "qualified" for the procedure & the Radiation. My catheter exited my body towards my back, under my arm, which made it hard for me to see without a mirror, but my Husband helped clean the site on the week-end! I finished the treatment on the 15th, & my surgery was on the 4th. The additional days were because of "planning" and 2 week-ends.
So it's been a little over 3 weeks, & everything looks great! I just saw the Radiologist yesterday, & she was happy everything worked out well. My next appointment is the 4th, with the Oncologist to talk about Tamoxifen...I wish I was just done!
But you all know how THAT is. Jeannette0 -
This is my first time on website. Thank you for all the info you have posted. I was diagnosed in 2/2009 had surgery on 3/09, had mammosite radiation 7 days later. Felt wonderful for 4 months. Then I had a hematoma form in the cavity , Dr. drained it with a needle, came back 4 weeks later, Dr. put in a drain for 7 days, it has not returned, BUT...I started having soreness under my left breast, it continued to increase, it got so bad that I couldn't take a deep breath, roll over at night, cough, sneeze, cry, eat, nothing without extreme pain. Had CAT, nuclear medicine body scan, x rays, seems my ribs have been effected by the radiation and I keep fracturing them, so far I have fractured 3 ribs. I am not doing anything that would cause this to happen. Dr. says it can happen with a sneeze(which I try not to do, due to pain) or a cough(again, try not to) My one Dr. suggested going in to a hyperbaric chamber to increase the oxygen to help heal my ribs, my primary pretty much said insurance will not pay for it. Have you heard of this happening with mammosite procedure? There is not a day that has gone by since this started happening that I do not experience pain. I do not take pain pills which Dr.'s seem to think is the answer to deal with the pain. It is somewhat disheartening to learn that so many women are having problems years after this procedure. I also wanted you to know that I have ordered a Bra from Soma. I hope it helps me. I am getting a bit tired of wear sports bras! Although they due help somewhat with the soreness and pain. Again I am so thankful to have come across this site. Bless each and every one of you
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Diana- Just curious as to what state you live in. Might be interesting to see if there are certain areas, hospitals etc, where there is a higher prevalence of problems than other places. My doctors have said they have had no instances of these types of problems. It is curious..I am much too early into this to comment and only pray my experience turns out better. Certainly hope you find some relief.
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Good Morning Smerrill, I had my surgery and radiation in Slidell, Louisiana. We have since moved to Port St. Lucie, FL. I have been back to my Dr.s in Slidell 3 times but can not continue that. I have found a primary here(not really all that impressed with him) and an oncologist(very happy with him) We have insurance that requires your primary to get a referral to specialist or for that matter anything(retired military). The Dr. who did the mammosite radiation in Slidell was one of the first Dr. to use this procedure. He told me that they have very good numbers for keeping the balloon away from the skin but not so when it comes to the position by the ribs! Of course, I was not told of any of this before I made my decision. I wish all Dr.'s would give you ALL the facts before you make a decision that is so important. I guess they don't want to scare you out of making the decision they feel is best. Thank you for responding it is comforting to hear from other women who have been through breast cancer surgery and radiation.
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Diana 58 - Read your blog and became very upset with what you wrote. I had my mammosite over three and a half years ago. If you read my early blogs from last year, you will read that I, too, had a fluid-filled cyst that at first caused me so much pain, you couldn't get near me. I had it drained and a lot of ugly fluid came out and I received instant relief. However, not three months passed and the cyst filled up again. My radiation oncologist did not want to drain the cyst because he said too much aspirating could cause infection and that could lead to more cancer. So, since last year at this time, I still have soreness in my left breast and have had soreness for a long time. I also am now feeling a small marble-like cyst right at the top of my incision. I don't know if it is the original cyst or something else. Doctor told me they can't remove the sac because it will return. I'm wondering if your doctor did all that he could in the way he inserted your mammosite. Lots of these doctors don't know how to do a mammosite or don't want to do them. Earlier mammosites did leave gaps causing cysts to form and that's what many of us have been experiencing. There have been many improvements. That's why I'm wondering about your doctor. Lastly, I would suggest doing exercises for your breast. I've found lifting weights to be a godsend. I lift heavy weights and it seems to help me a lot. Diana, I live in Fort Myers, FL and I would suggest you keep looking for a doctor that can answer your questions. Enjoy your Soma bra. They are all I wear!! The best to you.
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BosomBuddy Judy, Hello, thank you for responding. The Dr. that did my surgery and put in my balloon for mammosite had done a lot of them so I felt confident in him. I had talked to other women that he performed this procedure on and they did not have any problems. I would really like to exercise my left side but at this time I can barely hold my arm up long enough to use a curling iron without pain. My primary still feels that it is my ribs that are causing the problem. I'm not sure if they will improve or stay this way. It seems it's a wait and see. That isn't what I wanted to hear! When you hear you have cancer, that's a little scary, then you make your decisions based on the info given to you, when you are through with everything you expected to be okay and live your life to the fullest. When you can't, there is anger, frustration and sorrow involved in your daily life. Sometimes it's just the pits. But I am cancer free and that is a blessing. Thank you again. I'll let you know how the bra works!!
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BosomBuddy, I just wanted to ask you if you are taking any supplements to help regenerate nerves that may have been damaged by radiation? I'm trying to find out if my rib is fx again or if it's just the nerves that are causing pain. I do feel like I might be getting fluid again in an area that I did not have it before. Although Dr feels that body will reabsorb fluid, but it may take a while. Have a good day and Thank you for helping
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Diana: I am taking 5000 mg of Vitamin D, 3000 mg of Calcium and a lot of magnesium over 750 mg daily. I am not on any cancer meds. I work out strenuously three times a week. That's it. I did get a very favorable bone density result last month after getting bad ones with Fosamax for 12 years. Took myself off that first part of last year. I do feel everything working together is strengthening me in all areas. I will be 68 years young next month. Don't believe what your doctor says until your body actually responds to the cyst leaving you. It may or may not shrink. Mine hasn't and the fluid has not dissipated, and neither has my friend who had the same surgery as me two years ago. Don't think I am the picture of health, because I am not. I am overweight and have scoliosis, etc., etc.. I accept what God gives me. I just want to know how to handle it like we all do. Once you have cancer, your life changes and will continue to do so. There isn't a day that passes that I am not completly involved in my thoughts and will campaign forever to get rid of this horrible disease. We have come so far in the last five years and ladies, we have much to be thankful for. WE ARE SURVIVORS!!!!!!
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BosomBuddy Thank you for replying so quickly! I am taking Os Cal ultra with 600 D twice a day. I think I will try to increase. It only has 20 mg of Magnesium. May need to check into more of that also. Has your Dr said anything to you about your Magnesium? Do you have extreme pain from your cyst(fluid build up)? I have not had any type of therapy, but I feel like my reach is not the same prior to surgery. Your right about your life changing, at first I did not feel that way, I do now. I hope I am a better person because of this.
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Diana: My doctor has not commented about the magnesium. Actually, I take all that magnesium so that I can go to the bathroom effectively. It works extremely well for that purpose. I don't want to take over the counter products. Check out the virtues of magnesium. I do have almost daily pain of some kind where the fluid build-up is. If you touch the area, it is very sensitive. I cannot wear nighties that have sleeves in them because I move around a lot and I can't put pressure in that area. I have had no therapy. I am a strong believer in exercise and lifting weights. Start out slowly with the weights and you will notice a strengthening in your arm and breast area. My doctor who is extremely honest and one of the best radiation oncologists in my area has asked me to live with it as best I can until something major should occur. He has full knowledge of my procedure and has been with me since the beginning. You are a better person if you have accepted who you are now.
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Good Morning BosomBuddy, I just wanted to let you know about the bra, I have been wearing them now for 3 days and I find a definite improvement in how my pain level is during the day!!!! Thank you so much for lettting us know about them. I will be ordering more! Have a wonderful day.
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My mammogram turned out okay after they decided that I needed a new, special test, that the tech who did it just happened to be there. Still took over 3 hours and and worried my daughter to death. We were going to get the test and go to lunch, like you do. Almost starved. Seroma is larger and there are now "four round chunky calcifications" in it. So it is like a snow globe in my breast, but the flakes have congealed. The pain went away over the next few weeks and now just comes and goes a little. BUT, now that I think I am going to live a few more years, I have a right boob that is perky and and a left one that does not have a huge seroma holding it up. If the economy improves I might have to go get a nip and tuck guy to put a gumball in my left side to make them match up. I am the one who told my surgeon that I wanted the mammosite. Let's face it, we are busy, and were at the time as well informed as could be expected. As a doctor, I would say that it is important that we let our surgeons know about how we feel about our outcome as time goes by. Surgeons only get paid to operate, so I would suggest a short written note.
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Someone on this site asked if anyone had Mamosite without complications, and I have to chime in and say that I did not experience anything post radiation and I am so sorry that some of you are having such terrible SE. I hope they resolve themselves very soon.
Hugs,
Linda
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No complications or side effects here either (at least nothing from the Mammosite Radiation). I've been sorry to see the posts here about side effects.
LisaAlissa
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