Side Effects of Mammosite Radiation Therapy
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Thanks for the info. Called doc today and got an appt tomorrow. I don't plan on having surgery again. Will update you after the appt.
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Busom Budy Judy, waited a day before I posted again because I'm really discouraged and upset with both my surgeon and my PCP. My surgeon saw me again on Monday, told me I had two choices, surgery or "forget about it". I called my PCP and her nurse told me that the surgeon was correct, there was nothing else to do. Both these women have always been kind and considerate to me, but now they make me feel like a hypochondriac. I just want to crawl in a hole and cry. Thanks for lending your shoulder to cry on though. anna
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abearheart:
Today I saw my radiation oncologist who examined me after my mammogram. He referred to the two marbles I have in my scar tissue. He said they will hurt, throb, and really aggravate me from time to time, but there is nothing to be done. He showed me my film and there is no more cancer. So, abearheart, my suggestion to you now that you have seen your doctors and found them not to be so caring, is to try to live with the pain, massage your breasts gently in the shower to release the scar tissue and let it move around if possible and start lifting weights and working out at a gym regularly if possible. I am feeling so much better, but the minute my doctor touched my breast where the scar tissue is, I jumped. A lot of us are living with the pain from the tissue formed from the improper healing of a mammosite. But I still believe the mammosite was much better than going through all the radiation and possible chemotherapy. Once we have cancer, our lives change drastically. I hope I have helped you and anybody else who is thinking about having an unnecessary surgery that probably won't solve the problem.
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Hey Judy, I think you are probably right. I will try to massage my breast in the shower and lift the weights. No one ever told me to do that before. Still don't know how to feel about my doctors though, seems like their attitudes have changed. Well, at least I won't have to see them for a while. THANK YOU SO MUCH for your support. Hugs and kisses to all of you out there struggling with this stuff. Its good to have sisters who know what I'm talking about. anna
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Hi!
I am a neighbor of yours in Cape Coral, Fl. Diagnosed a week and a half ago and am leaning toward mamosite radiation therapy thru 21st Century Oncol0gy. I am 70 years old, small cancer spot about 2cm. I would be interested in hearing more about the side effects of mammosite. My surgery should be scheduled in two weeks. Their literature made it sound so simple.......
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Dixie0907:
Hello neighbor. I would very much be interested in speaking with you personally on the telephone or you can contact me by e-mail first. I counsel breast cancer patients and survivors for American Cancer locally and have been for over three years. Dixie, before you do anything, I would like to know who your breast surgeon is and what was explained to you. The literature is general. I know quite a bit about what you will have to go through. My radiation oncologist is Dr. Mantz from 21st Century Oncology and he is one of the best doctors. Please contact me as soon as you can. I would be delighted to chat with you and walk you through any questions I can help you with. We are closer than you think.
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Dear Judy,
Delighted for such a fast reply from you. Yes, I would like to talk with you. My email address is Dixie0907@aol.com. My name is Gail. When I hear from you on email, will give you my phone number. I have an appointment with Dr. Black tomorrow at 8:30 P.M. to set the surgery date which I assume will be in the next two weeks. Hope from another speedy reply and thanks!!
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August 9, 2010
Hi Everyone,
I have been following this site for a few months and finally decided to write. I had a lumpectomy and mammosite last July,09.on left breast. Immediately after the balloon was removed I noticed a hard lump and on my next subsequent visit a month later, was told by the radiologist that it was fluid/scar tissue. He said to massage it and the fluid will eventually be absorbed. Well it is a year now and it is still there - the same size (about a silver dollar). I will be going in for the annual mammogram next Monday for both breasts. Thanks to great info received from all of you, I know what my answer will be if the doctor makes any suggestions about aspirating it - no thank you.
By the way,due to my aprehension, I also started taking belatedly (almost nine months after surgery) Arimidex. After two weeks I started to get boils on my abdomen - six of them, so the following week I stopped. Called my oncologist who said that it was first time he ever heard of that kind of side effect but agreed that I should stop. Within days the boils began to heal. He mentioned that I should go to a dematologist and to call him when all was well and he would start me on Femora. I have decided for now not take anymore medication because the additional 3 - 5% chance of the cancer not returning is not worth it to me. I now have cellulitis (what the doctor thinks is the problem) on my left leg and after 1 1/2 week of Keflex, it is not any better. I probably should be grateful that it isn't cancer or at least I hope it isn't. Anyone with the same problem?
I think this website is just wonderful - just to hear that other cancer survivors are going through the same anxieties is comforting. I think only if you live with cancer can you really relate with others in the same situation. As this is my second bout with cancer - I had cancer of the tonsil that metastized to the lymph gland thirty years ago and was told I had a 50% chance of beating it -and I'm still here. Special thanks to BosomBuddy for your insight.
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Hello Everyone:
Here I am again. Today, I have to respond to kokokoko first. I am sorry you are suffering from the cyst from mammosite, but hopefully it is worth it. Afer four years, I still have two lumps the size and consistency of marbles and maybe more, but I don't like to feel around. The pain is always there when I touch my breast or bump it. You are doing the correct thing by massaging and hoping it will disappear. After reading this blog, I feel in my heart ladies that these cysts will never disappear on their own unless God wants them to. I am delighted to hear you took yourself off Arimidex and Femara. For 5% more "guarantee", it's not worth ruining your health in other areas. Can anyone who is taking this stuff or has taken this stuff tell me that they know it has actually improved their health and that they feel better? On another note, I heard from Dixie0907 personally, and I hope I gave her some good information on her search for a doctor, etc. in our area. We will wait and see.
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Had my lumpectomy and mammosite in November 2009. They put me on Femara, but by May 2010, had the health, stomach and digestion issues. Felt horrible. My surgeon took me off for 3 months to regain my strength and health. Next week, I have an August 17th appointment to have my first mammogram ever, and rego back on the Femara. I have posted several times on this site, as to my concerns, but have never had a reply. I find it interesting that now someone wants to know about Femara. Would have loved someone to have responded to me?
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Hi Lindaperson2
Good to hear from you. When you go for your mammogram, please be sure to ask them for a pad to put on the plate where you will lay your breast. It is so much easier and less painful. If you don't ask, they won't offer. Also, why do you have to go on Femara again? How do you feel overall? Be sure to ask what the "guarantee" is if you go back on Femara> That means what percentage does the doctor guarantee you will live longer and cancer free. Are you willing to suffer for 5% more? I'm not. Sounds like you suffered already by being on the med. Don't know your age, but I think you are pretty young as far as breast cancer is concerned. If I was younger, I would wait and see if better drugs come down the pipe in the near future where you will have to endure a lot less pain, suffering, problems, etc. Talk with the doctor and check out Femara on the internet, etc. See if you can find someone who has been on the drug for awhile and ask how they are doing. I've waited almost two weeks for an answer to my question on this blog, and so far you are the only one responding about these drugs. Please let us know your results and all the best to you for a clear mammogram. It really doesn't hurt. You might want to take something to calm you down before you go. I did and I practically fell asleep, I was so embarassed!
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Thanks for responding Judy. I am 52 years old, and have a wildly, busy career in Las Vegas real estate. Really don't have the time for any down time. My main concern on the mammogram is the fact that I had breast implants done in 1984 (the old silicon ones) and really not wanting to have them burst. As far as the Femara, I am not sure that the doctor is giving me any choices on this. I like him alot, but it does appear it is his way or no way, and I honestly believe these doctors get kick-backs from the pharmaceutical companies. Just not wanting to get cancer back again. Has anyone been on Femara for any amount of time, and what has been the results?
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Hi everyone...
I also was on Arimidex, from Nov. 2009 to February of 2010. I had soooooo many side affects that I took myself off of it. Then my ono put me on Femara, from Feb 2010 to April 2010 and it also had horrible side effect for me. Deep bone pain, just general achiness and I felt like an 80 + woman. I went off of it also. My ono wasn't very happy with me and wanted me to go on Tomoxifen. I flat out refused. I told him that I have small grandkidlets that I want to run and play with and that I'll take my chances. I agree with Bosombuddy the 5 % just wasn't worth the pain for me.
I'm definitely not saying this is what anyone else should do, but for me it was and still is the right thing.
janet
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I had my very first mammogram today! After 9 months since my breast cancer and mammosite...I am clean! I also am embarrassed that I was so fearful of a mammogram. I had feared that my implants would burst. I had the mammogram right at my oncologist/surgeon's office and it was a piece of cake. I am furious with all the females that have put so much fear into me. Ladies, we need to be gentler in what we tell others. I maybe could have avoided a lot of problems and found the tumor sooner. I have many friends that also have breast implants and are all also fearful, and have reached their 40's and 50's and still never gone for a mammogram. That is crazy! As I had mentioned, I had experienced several negative side affects from the Femara. My doctor has asked me to try Evista. Evidently it is much better on the bones and joints. I would love to hear any experiences with this. I figure I will try, but will absolutely quit it if it bothers me. Anyone ever tried this?
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I am 60 years old and I had my lumpectomy and mammosite rt in July 2007. My nurse oncologist told me not to wear underwire bras. A sales associate at Macy's recommended the Playtex 18 hour bra Style 4608 wirefree, v-neckline, breathable, supportive comfort lining, and tapered and cushioned Stop the Slip straps which relieve shoulder pressure and help prevent strap dig in. I found the Body Bliss Sofia bra is sold out. I was on Arimidex for only one month because of bone pain and seven excruciating migraines in that month. I learned alot from this site. I also have the lump and armpit pain; but my mammo and u/s in April 2010 were fine, just the u/s brought me to tears. I am grateful to the women who have shared their stories. I may try the weights. Thank you.
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Hello Everybody:
Welcome, Karen3231950. I just bought Soma's latest wirefree bras that replaced the Sofia. They are even better. You can look at them on soma.com. Mine are Larissa wirefree and Body Bliss Sara wirefree. Can wear them all day. Chico's/Soma are great contributors for breast cancer nationally. Be sure to lift the weights.
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Hi, Karen
I am 60 and had Mammosite the end of July. I have an area of reddened skin around the area where the balloon was placed. Did you have that, too?
Thanks
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Sandy, I hope you are doing well. My surgery was done in July 2007 and yes my skin was tender, red, and dry. My nurse oncologist recommended I use Aquaphor Ointment. I do not know what is recommended at the present time as treatment changes rapidly, but I would suggest you keep in close contact with your doctor when questions arise because each situation is different. Judy is a breast cancer advocate and more than willing to offer her expertise and knowledge. BosomBuddyJudyinFortMyersFL Tonight as Judy suggested I started using weights. I wish you God's guidance in making your decisions and well-informed choices. Stay positive and cancer free. Karen
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I had Mammosite the first week of August and I now have a small area that turned red, then a little tan, and is now peeling slightly. It's not painful, it's just "there". I am using my facial moisturizer (Moisturel) on the spot and it seems to be doing OK. I was a little surprised to have this surface after 6 weeks, but it's not a really big deal
Michelle
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Hi All,
Haven't been on in awhile. Still have the cyst. Did have it emptied again ( 2x's so far ), it filled five large syringes. And then they took a biopsy of the cyst wall. Everything came back negative. The cyst has filled up again, though it is smaller than last time. Going in soon for my annual mammogram. My Doctor says that it feels like there is fluid in it again, and will probably need to be emptied. I'm also going to get a chest xray, because I have a dry cough that just doesn't go away ( we have been having months of remodeling construction going on at our house, so I'm hoping that is the cause of the cough ), and I have a very sore spot on my side ( same side as the radiation ) along a rib (ribs ?). I have to admit that I am a bit scared as to what these other symptoms are, just trying not to let my imagination get away from me. Sorry to see that so many of us keep having problems after using the mammosite procedure. I tried to do my research on it, just don't know what to think at this point.
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Hi Bosumbuddy - It has been 6 months since my last post. To LucRving- I experienced what you did and was quite frightened and told the radiation oncologist that she needed to further explain in her printed material that the radiation burn you might experience may not show up for a month or longer. Mine was not painful. Just lasted about a month, getting worse and spreading. That was last January. It is totally gone and all looks perfectly normal.
It i another very unusual side effect that I want to report before someone else goes through the same anxiety and journey for answers. About 4 month after surgery I had this cord looking thing appear on my abdomen from under my ribs to about my waist ( I.E. under the operated on breast) Open attached picture
file:///Users/susan/Pictures/iPhoto%20Library/Originals/2010/May%206,%202010/Photo%20on%202010-04-17%20at%2013.06.jpg
It took six dr visits to get some answers. Actually the first dr- the surgeon did correctly identify, but said it wasn't anything she did. She called it a " thrombophelibitis of a superficial abdominal vein" - offered no why or treatment. I further inquired of my radiation oncologist, my oncologist, a dermatologist.. They all said to see my PCP. He looked at it and said" what is that?" I then took myself to a vascular surgeon. He confirmed what the surgeon said, but with a lot more info .
Here is some printed info: "Superficial phlebitis affects veins on the skin surface. The condition is rarely serious and, with proper care, usually resolves rapidly. Sometimes people with superficial phlebitis also get deep vein thrombophlebitis, so a medical evaluation is necessary. "
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Phlebitis Causes
Phlebitis may occur spontaneously or as a complication of a medical procedure. Local trauma and injury to a vein also increase the risk of forming a blood clot. Some risk factors for deep venous thrombophlebitis include the following:Prolonged inactivity. Blood returns from the extremities to the heart by the contraction of muscles. Situations in which a person sits or reclines for long periods of time can allow blood to pool and clot. Examples include long trips in a car or airplane or bed rest after an operation or illness.
- Sedentary lifestyle. Inactivity with little or no exercise
- Obesity
- Smoking cigarettes
- Hormone replacement therapy or birth control pills
- Pregnancy
- Certain medical conditions, such as cancer or blood disorders, that increase the clotting potential of the blood
- Injury to the arms or legs"
The doctor said it is very rare and most don't know anything about it. Sees a case about once in five years. It can appear after breast trauma such as reduction or augmentation surgery, which follows after lumpectomy. He said in circumstances where none of those he would send someone for a mammography as it could be associated with breast cancer. He took blood and did all kinds of test to make sure it was not a clotting disorder or other possibilities. All came back negative.I have had my follow up mammogram after this appearance and all is fine. It did go away and come back again. I was told to take Advil and heat and used a bean bag that you heat in microwave to place on it at bedtime. It really helped if nothing else with relaxing me to sleep.Since it returned, I went back to the vascular surgeon who said he wanted to confer with a hematology oncologist ( by definition the same as my oncologist - they are trained in both) He was going to call mine. I said it was a waste as she had nothing to say about it. He was supposed to call back, but I spend the next week in NYC with my son who broke his collar bone and had surgery.Lastly- this was rather uncomfortable. It actually runs right up and into my breast tho very hard to see or even notice. You could feel a stretching when lifting your arm and have at times been bad soreness over my ribs just below my breast and the cord was quite hard to touch. It is there now, but I basically feel nothing, and is seems to be fading again.Very sorry for this extended saga, but am sure if this happens to anyone and they get as frightened and concerned as I , that this may help. I will call the surgeon again just to see what he has to say , whether he contacted the oncologist. He really wasn't terribly concerned, just thought it a bit odd and thought maybe it had not truly gone away, just subsided last time.Must run,Susan0 -
Dont know that that picture worked. I will try and repost when I get home later.
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Still trying to attach pictures- don't know if you will be able to see.file:///Users/susan/Pictures/iPhoto%20Library/Originals/2010/Apr%2018,%202010_2/P1000356.JPGDoes anyone know how to insert a picture here. DOn't understand why I just can't drag or copy and paste. ///Users/susan/Desktop/cord.jpg Half the time i copy and paste I see something. Other times I do not. There are two different pictures here,Susan0 -
SOrry to be such nudge - just rereading and see an important omission. In the article about causes of this symptom - this line was left out
- Certain medical conditions, such as cancer or blood disorders, that increase the clotting potential of the blood.
- I am done- Susan
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Good Morning. I'm new to this site and new to breast cancer. I'm two months since diagnosis and almost 4 weeks since MammoSite was finished. My pain just started and after reading many of the posts know that massage will be my first course of action. I am so grateful that MammoSite was available to me and no matter what...I'm glad I went with it. I am a minimalist and am finished with everything....No chemo (my choice) and No hormone therapy (my choice). I read with interest the post that said her oncologist "PUT" her on Fermara. You have choices no matter what the doctors say.. Also, thank you for the bra info. That has been my biggest problem since my surgery on 8/12. Luckily I'm not huge, but finding something that is comfortable and I can tolerate all day has been a challenge. My insurance will pay for 6 custom fit bras a year for me, but I have to be all healed and I still have a scab where the MammoSite was. Check into your insurance...it may help off set the cost of a comfortable bra or 6!! Please, please keep up the information. I have learned more from all of you than I have from all the medical sites written by MDs. Breast cancer was not on my list of things to do before I turned 60, but here it is and I have had the best of care by the best people. I consider myself fortunate..area found on annual mammogram, Dx in one day, surgery 3 wks later, and at two months am now healing and getting healthy again. Praise the Lord!! Keep posting.
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Dear IrishInNC; Please continue to do well. Someone shared this with me and I thought you might find it comforting.
What Cancer Cannot Do
Cancer is so limited--
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot destroy peace,
It cannot kill friendship,
It cannot suppress memories,
It cannot silent courage,
It cannot invade the soul,
It cannot steal eternal life,
It cannot conquer the Spirit.
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Karen3231950,
Thank you so very much for sharing something so powerful. I am doing very well and with the support of my family, friends and God, I will live my life with no regrets. I don't feel I'm a victim. I'm just a healthy woman who got breast cancer and am now a survivor!!
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Judy, I wanted to check on you as you haven't been on the site in awhile. Hope things are going well for you.
Karen
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Hi IrishinNC, Your case sounds similar to mine. I finished my mammosite 6/11/10. Decided against tamoxifen. I have been back to my regular routine since the end of June (running, lifting, swimming) and feel pretty well for the most part. I have had some bumps in the road (radiation burn, rib pain, shooting pains that come out of nowhere), and I am still wearing sports bras. I am small (36A) and I used to wear under wire, would love to know what brand of bra you found that is comfortable. WIll be seeing my BS in a couple of weeks for a check up. If I learn anything new about the SEs some of us experience I will let you know. Be well. dcchef
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Hi Karen3231950 and everyone:
Here I am! Usually watch this blog daily, but it seemed to stall for a bit. Thank you for your interest, Karen. I am feeling well. I've been dealing with a husband that recently had quintuple bypass surgery and really haven't had much time to think about me and that's good. The cysts are still there, but I don't care. I've lost some weight and so has my husband and that's also good. As previously mentioned, the bras I swear by are from SOMA, a division of CHICO's and you can buy them online if you can't find them in your area. They are wirefree and don't dig into your boobs. I would check them out according to your comfort level. I have been wearing only them for almost five years now and I am happy. Dcchef, everything you are experiencing is normal for what you are going through. It gets better over time. I recently passed my four-year survivor mark and I plan to walk with my husband the end of this month in the American Cancer Making Strides Against Breast Cancer Walk. Keep smiling, girls.
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