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Side Effects of Mammosite Radiation Therapy

lazforty
lazforty Member Posts: 1

It's been almot two years since I was diagnosed with DCIS.  I had Mammosite Radiation Therapy.  However, the area in which I had the radiation is still painful and "hard" to the touch.  I've been told by my doctors that this is normal and one of the side effects of Mammosite Radiation Therapy, plus I have scar tissue in the area as well.  I have a MRI once a year and Mammogram once a year as well.  So far everything is good, but I still get concerned about the effective area in which I have the pain.  Does anyone else have these types of issue after receivng radiation, whether it is Mammosite or regular radiation therapy?

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Comments

  • Maryiz
    Maryiz Member Posts: 24
    edited October 2008

    lazforty, could it be necrotic tissue?  Maryiz

  • KAK
    KAK Member Posts: 297
    edited October 2008

    lazforty, here's a thread that might help:

    http://community.breastcancer.org/forum/44/topic/721985?page=1#idx_15

    I've had a lot of scar tissue & adhesions from the lumpectomy itself, never mind the rads.  The above thread mentioned some experiences women had with getting PT/massage to help the area & how much better they feel.  I've been working on my own adhesions & they are finally starting to soften up.  I work on them in the shower, where I can warm up my breast really easily.

    Unfortunately, adhesions are very common after any kind of trauma to soft tissue & they are very painful.  So is scar tissue.  Good luck.

    Kathi

  • BosomBuddyJudyinFortMyersFL
    BosomBuddyJudyinFortMyersFL Member Posts: 90
    edited December 2008

    I have been having a lot of pain lately from my mammosite which I had two years and five months ago after a lumpectomy.  My breast is tender to the touch and I get shooting pains on a regular basis.  I also found something lumpy above my lumpectomy incision and mammosite and I have an appointment with my radiation oncologist Wednesday to check it out.  Will let you know what I find out.  I also would like to know if other people are experiencing this much pain with the mammosite.  Thank you.

    Judy

    lumpectomy 7/11/2006 - mammosite radiation - no further meds

  • LisaAlissa
    LisaAlissa Member Posts: 34
    edited December 2008

    No pain/tenderness/hardness here...hope your radiation oncologist can help and you have it sorted out soon!

    LisaAlissa 

    ETC: spelling

  • jsd1
    jsd1 Member Posts: 1
    edited December 2008

    I had my lumpectomy and mammosite a little less than a year ago. Initially, I did not have any pain. Over the past 2 months, I developed pain in my armpit and in the area where the lumpectomy/mammosite was. Additionally, a mass rapidly formed (where the mammosite had been). I went to my surgeon and the mass was a cyst and was drained. The fluid was analyzed and found to be benign. However, I still have the pain in both the surgical site and my armpit and this concerns me very much. I am going for another ultrasound soon to see if anything more is there.  Already had a mammogram a couple of months ago...was ok. MRI scheduled in 3 months. Has anyone else been pain free and then had a development of pain in a site distant from the surgical site? What about the surgical site months later?

  • BosomBuddyJudyinFortMyersFL
    BosomBuddyJudyinFortMyersFL Member Posts: 90
    edited December 2008

    After having a lumpectomy and mammosite two years and five months ago, I experienced the pain you are referring to.  Yesterday, I had a mammogram and an ultrasound and it was found that I, too, had a cyst filled with fluid right above my incision.   The doctor drained the cyst and most of the pain disappeared immediately.  I will see my radiologist Christmas Eve, but the doctor seems to think he got everything.  I started to experience constant pain about two months after my last mammogram.  It got so bad, my breast started to throb a few days ago and I was becoming nautious.  Today, I feel like a new woman.  My suggestion to all of you who are having pain is to get an ultrasound to find out exactly what is causing all your pain.  Doctor told me I could get more cysts again.  I am still a bit whoosy, but very thankful. 

  • ADS
    ADS Member Posts: 2
    edited December 2008

    Lazforty,

    I've just joined this website as I was looking for some info on side effects of Mammosite.  I had surgery and Mammosite radiation in April '08 and in the past two months have developed quite a bit of pain behind my breast and radiating around to my back.  I had been so comfortable and pain free after the incisions healed and was disturbed to now be having so much pain--no doctor had warned me about the possibility.  My oncologist referred me to physical therapy and the therapist found quite a bit of scar tissue that has become involved with several ribs.  I've had 6 sessions with the therapist and feel better for a few days, then the pain returns even though I'm doing all the exercises I'm supposed to do at home.  Kind of discouraging.  I have DCIS and had a choice as to whether to have radiation.  Now I wonder if I made the right decision!

  • BosomBuddyJudyinFortMyersFL
    BosomBuddyJudyinFortMyersFL Member Posts: 90
    edited December 2008

    Hello Everybody:

    On Christmas Eve, I was told the fluid the doctor removed from the cyst just above my lumpectomy incision was benign.  He told me I could get a recurrence of the cyst again.  I told him even though fluid was removed, I still am in pain and especially right underneath my breast.  My radioloist told me I would have pain for a long time because even though it was only fluid, the needle aspiration caused the breast to be very sore.  My suggestion to all of you who are experiencing any pain from the mammosite is to have an ultrasound or MRI to see why we are all experiencing so much pain periodically after two years or more.  I can't sleep with a nightie that has sleeves because it puts pressure on my breast when I turn around or try to sleep on my side. I am not a large breasted lady either.  Lazforty, I believe you made the right decision.  Nobody really tells us too much about what could happen, because mammosite is so new.  We just have to believe being on the cutting edge, we did the right thing.

  • BarbaraBFeb18
    BarbaraBFeb18 Member Posts: 7
    edited January 2009

    I'm new to the site and this forum but am so relieved that I have found some information on side effects of Mammosite radiation.

    I had breast cancer surgery in December, 2007 and Mammosite treatment in January, 2009. Unfortunately I had DCIS, stage 0, in both breasts at the same time. The right breast seems to be okay. The left breast is the problem. I have a hard knot about the size of a half dollar below the incision. I have had it drained twice and it is smaller than before but still there. I had terrible problems with my left arm in October, which I suspect was at least partially caused by the knot in my breast.

    The thoughts of having a mammogram for that breast is painful. I have hesitated to have a MRI because my surgeon warned me that they show so much detail that I would probably have to have another needle biopsy, which was very, very painful both times I have had it.

    Insertion of the Mammosite balloon on the left side was difficult. The radiation oncologist said that the left balloon was not in the "right" place my first day of treatment so I massaged it and she said it was okay. Then she had a difficult time in removing it. I think I have been burned internally by the Mammosite balloon therapy because it was too close to my skin. That's my theory. 

    So I need some help to know where to go from here. Can anything be done to help the damaged tissue short of surgery?

    Look forward to your ideas. 

  • BarbaraBFeb18
    BarbaraBFeb18 Member Posts: 7
    edited January 2009

    Oops. Goofed on the date of radiation. It was January, 2008.

  • BosomBuddyJudyinFortMyersFL
    BosomBuddyJudyinFortMyersFL Member Posts: 90
    edited January 2009

    BarbaraBFeb18 - Feb. 18 is my birthday.  Read your notes.  If you read BosomBuddyJudy, you will note  the problems I have encountered since my mammosite.  As stated, I had a cyst filled with fluid aspirated in mid-December.  I still am experiencing pain in my left breast and was told the cyst will always be there and could cause continual pain from time to time.  My cyst was directly above my lumpectomy incision and just next to my mammosite incision.  Everything you say is correct.  My suggestion to you is to see another doctor.  From what I read, your doctor did not do the mammosite properly.  They are very tricky and have to be done just so as to not cause what happened to you.  I am very involved in breast cancer information as I am a Reach to Recovery volunteer for the American Cancer Society and I have been counseling breast cancer patients for over a year.  From information I've gottten from other survivors, there are a lot of doctors out there who do not know how to do the mammosite properly or don't allow enough breast tissue space for the proper insertion of the ports. 

  • BarbaraBFeb18
    BarbaraBFeb18 Member Posts: 7
    edited January 2009

    Hello BosomBuddyJudyinFortMyersFl:

     Feb. 18 is also my birthday. Not a coincidence. When you say go to another doctor - do you mean the surgeon or radiologist? I suspect the surgeon. Do you know if anything can be done once you are burned internally? 

     Thanks for your reply and your work with breast cancer patients. I think there is still a lot to learn about mammosite radiation. I really went into it "in the dark."

  • BosomBuddyJudyinFortMyersFL
    BosomBuddyJudyinFortMyersFL Member Posts: 90
    edited January 2009

    Hi BarbaraB

    In reading your post, my suggestion is to see another surgeon, preferably one who does mammosites and has done them regularly.  Your radiologist knows that your mammosite was done incorrectly, but doesn't want to upset you. If you trust your radiolist, you may want to inquire who he or she would recommend as a better doctor.  In my case, I had a team of doctors -- my surgeon, my radiolist and my oncologist and they all communicated  about my situation.  My surgeon has left the area and I now listen to all the suggestions my radiolist makes for me.  I have confidence in him.  You need to be able to feel comfortable with your doctor.  If not, find another one.  I'll be interested in knowing what you do.  Happy Birthday, Feb. 18!

  • Coco1
    Coco1 Member Posts: 2
    edited February 2009

    Hello ladies,  went searching for something about pain after having the mamosite and found you. Same m.o. with me as some others. Lumpectomy in Nov 07 and no real pain  until last month and a half . Pain comes and goes right in the area where the balloon was only. At times pretty intense but other times practically none existant.When pain is present it worsens when I bend over and my breast is pointing towards the floor. I thought it felt like an infection or something in there but never had anything like this to compare. Just had a mamogram 2 months ago .Wouldn't a cyst have shown up there? I am calling my oncologist to see if I should see my surgeon or him.

  • ElaineT
    ElaineT Member Posts: 1
    edited February 2009

    It's been almost 3 years for me since my lumpectomy & mammosite. I guess I started having noticable pain at the two year mark as well.  The pain hasn't been as serious for me as has been for some of the others here, but any pain causes worry. Nothing has shown up on my mammograms, though I'm due for a new one soon.  One thing I have concluded about my pain though is that it corresponded to menopausal weight gain and the inevitable sagging that accompanies it.  If you're at that age it could be a factor.  I also found that certain bras caused discomfort as well, especially when I tried a new style. Hope this helps a bit. Good luck. 

  • BarbaraBFeb18
    BarbaraBFeb18 Member Posts: 7
    edited February 2009

    Hello Coco1:

    I think a cyst would have shown up in the mammogram.  I don't know if I can help with your concern but wondered if you have a lot of scar tissue from the surgery and radiation. If you have a lot of scar/burn tissue then when you bend over it might be pulling away from your chest wall, which might cause some of the pain. Just an idea.

     I'm 14 months from surgery and 13 months from radiation and have a large mass of scar or burned tissue below the incision site. Experienced some awful pain with my left arm about 3 months ago but Yoga, stretching, epsom salt soaks and praying helped. I just started going for physical therapy and massage therapy to try to reduce the mass and relieve some of the pain. The PT noted that she had seen large masses of scar tissue with just lumpectomies. With folks who had no radiation. So its hard to tell what causes it.

     I have found that the regular docs - surgeons, radiation oncologists, etc. - don't have very good info on how to handle the pain and don't know the resources available to mammosite breast cancer survivors. I found the  Turning Point  resource(where I'm going for PT and massage therapy) through this website.

    Hope this helps.

    Let us know how you are doing. 

  • BosomBuddyJudyinFortMyersFL
    BosomBuddyJudyinFortMyersFL Member Posts: 90
    edited February 2009

    Hi BarbaraBFeb18.  Glad to hear you are finally getting some relief and have found a good therapist.  Ladies, I hear all of you!!!  December 17 was when I had the fluid removed from my breast cyst and that was what was causing me all my pain.  Since that time, I have to tell you all that I still have a lump in my breast just above my mammosite incision.  It's driving me crazy.  Don't know if it's the sac from the drained cyst or something else. I try to ignore it, but I can't go through all the anxiety I had a few months ago.  Just to assure all of you, we are all in the same boat with the same feelings in our breasts.  I switched bras again to a t-shirt type material with no underwire and it is sold at the Soma stores by Chico's.  Wonderful bra.  So glad to see this chat page moving again.  My Best to all my Bosom Buddies!!

  • Coco1
    Coco1 Member Posts: 2
    edited February 2009

    Ladies, your feedback has been soooo helpful. I think the scar tissue is what is causing my pain. I do have the menopausal weight gain, the sagging and numerous "bad bras". It also occurs to me now that this pain probably started up just as I began doing a beginners pilates program daily about a month and a half ago.  thank you! (I am going bra shopping)

  • BarbaraBFeb18
    BarbaraBFeb18 Member Posts: 7
    edited February 2009

    Hello BosomBuddyJudy and Coco1 and all:

    THanks for the updates. To Bosom Buddy, my scar tissue seems like a cyst also but what I have come to realize is that I was probably burned internally by the radiation, which caused the skin not to absorb body fluids. A well or cavity was created, which traps the fluids. The same site has been drained three times and was just drained about 3 weeks ago and has fluid in it again. So, I'm working on reducing that scar/burned tissue so that maybe someday there will be enough "normal" tissue to allow the fluid to be absorbed by the body.

     Regarding bras, I'm with you. I have purchased camisoles with built in bras and "shapewear", which is like a mini girdle for your upper body. I like the camis but would like to find one with a more supportive bra. These bras are a lot like what you find in bathing suits. Not very supportive. The shapewear tends to flatten me but I also like that better than bras. Just about anything is better than a bra.

    THanks for everyone's input. Together we can learn more about how to take care of ourselves after breast cancer.

     Blessings!

    Barbara 

  • tmas
    tmas Member Posts: 3
    edited February 2009

    Hello to All:

    And I thought I was crazy..now I see I'm not alone. I felt absolutely wonderful for the 1st 4 months after surgery and mammosite. Then I began to feel I was hit in the chest with a mack truck. My rib cage and sternum were hurting so bad, that I thought  broke a rib. Not that I was doing any activities to break a rib, but it was painful to even inhale. After 4 months, a mammogram, a cat scan, chest x-ray, pet scan and an MRI scheduled later this week my doctors ( I've seen 3 ) still have no answer. Although the good news is no CANCER. But "something" is causing severe inflamation. The pain is slooowly going away, but is always there to remind me

    I too sleep with a sports bra each night, and still rolling onto my right side wakes me with pain.

    I also am a colon cancer surviver (2004). The surgery and recovery were a 1000 times easier than breast cancer (2008).

    I am very happy to find this site and fellow survivors. All posts have been very helpful

    Thank you All,

    tmas

  • CalT
    CalT Member Posts: 1
    edited February 2009

    I finished the MammoSite radiation on Jan 30th 2009. The start was delayed by a week as a spherical balloon would not fit well enough to do the radiation and I had to wait and have it replaced with an elliptical balloon.  This meant having the radiation material applied in 5 different positions during each treatment.

    It was fine, apart from a lot of discomfort from the pressure of the balloon and the catheter wobbling about (one size fits all meant, with my smallish breasts, I had about 6 inches of it flapping about.)

    I am having the usual armpit pain and weirdness, but am more concerned about my dark purple, lumpy and extremely sensitive and painful nipple.  Has anyone else had this problem?  The surgeon oncologist said it may fade and the pain may diminish.  No one on this site has mentioned such a problem and I'm interested to know if there is anyone and if there's anything I should be doing about it.

    Maybe I'm just being impatient...

  • BosomBuddyJudyinFortMyersFL
    BosomBuddyJudyinFortMyersFL Member Posts: 90
    edited February 2009

    Hello Ladies:

    Glad to see this site expanding, but sorry to see so many of us suffering from the mammosite. As far as your dark purple, lumpy and extemely sensitivity is concerned, CalT, I think that is all natural. The painful nipple would seem tobe from all the insertions during the mammosite.  Everything, I have learned, takes time to heal,lots of time.  Ladies, another suggestion: watch the shoulder strap in your car.  Make sure you have padding over the top of the belt.  They are called sleeves and you can buy them at Advanced Auto Parts stores.  Also, regarding the bras, I purchase mine from Soma which is a division of Chicos.  They are called Body Bliss Sofia and they feel like padded t-shirts.  You can purchase them online at soma.com.  They protect the breast, are wireless and mold to your breast.  I have been wearing them since they came out.  They are 90% rayon and 10% Elastane and oh so soft!  Let me know what you think if you purchase any of them.  I have been feeling somewhat better because I refuse to accept anything less currently.

  • BosomBuddyJudyinFortMyersFL
    BosomBuddyJudyinFortMyersFL Member Posts: 90
    edited March 2009

    Hello Everybody:

    Just saw my doctor because I was having pain again in my left breast where I had my mammosite after my lumpectomy.  Doctor informed me that the cyst where I had the fluid drained at Christmas had refilled again and was causing the pain and lumpy feeling.  Frustrated, I asked why it happened again so soon.  Doctor said: "women who have mammosites sometimes have a "gap" where the hole was from the balloon insertion that doesn't close up and heal properly causing cysts to occur.  He did not want to drain it again, did not want any needles used.  Told me if I was patient, cyst should shrink and dry up naturally.  Asked how long it takes, dubious answers of a couple of months.  So, I will accept the pain for now.  Doctor did inform me they are no longer doing the balloon mammosites.  So, think about that, ladies.  I guess they had more problems than they are telling us.  They are using more advanced procedures now.  You may want to check it out.

  • ChgResident
    ChgResident Member Posts: 9
    edited June 2009

    Hi there, I had mammosite about 1 1/2 years ago and also experience a fair amount of pain.  Just had another lumpectomy in other side but didn't do radiation.  I had DCIS, <1cm, Stage 0, don't remember grade but think it was the lowest/best you could hope for....

    However, I frankly wish I never had the radiation.  Getting ready for my next 6 mos (really more like 7 mos.) check-up and dread the thought of another mammogram.  Really have my doubts if DCIS really will turn into full blown cancer.  Feel like I have been over treated.  Glad they have this site as it helps to compare notes with others in exactly the same boat.  Hope you are feeling better....very interested in comment that your Dr. won't be doing any more baloon type procedures.  Drop me a line when you have time.  Thanks!

  • BosomBuddyJudyinFortMyersFL
    BosomBuddyJudyinFortMyersFL Member Posts: 90
    edited June 2009

    Hi Chg Resident:  Welcome to our Blog.  I'm happy to see it is finally moving again.  Well, it's been almost three months and I still have the cyst in my left breast and it has not gotten any smaller.  In fact,sometimes I think it is growing.  It has moved down my armpit a bit and sometimes causes a lot of pain.  I am scheduled for the big mammogram July 15 and have no idea what they will find.  One new procedure they are doing is called the SAVI for radiation.  You might want to check this out rather than have me tell you about it if you don't need it. There is too much of this breast cancer, ladies.  We have got to be on the forefront to help alleviate this terrible curse.  As I counsel more breast cancer patients and survivors for American Cancer, I am hearing about more doctors that just don't know what they are doing and about do overs for the same thing.  How is everybody else doing?  What have any of you heard or seen lately?  Let's keep this blog going.   

  • ChgResident
    ChgResident Member Posts: 9
    edited June 2009

    Hey there, I was very happy to see this blog as it makes me feel like I'm not alone.  I'm not sure if I have a cyst or not...just have weird pain.  To be honest, I haven't been to see a doctor since I have had the 2nd surgery.  Going this month and will get the order for the dreaded mammogram.   My confidence in doctors is very low, it appears to be all about them and very little about the patient.  Personally I have been trying to change my diet by staying away from processed foods, plastics, taking more vitamin D, etc.  Since no one has this in my family, I believe that this is being triggered by something else.  We'll see if my efforts are paying off when I have the next mammogram.  If they find DCIS again, I'm leaning toward a "wait and see" attitude vs. going under the knife again.  What do you think about alternative medicine? 

     Best of luck with your mammogram in July, I know that it is a very stressful process.  I will definitely check out SAVI as I have never heard of that type of radiation.  Thank you for passing on the information.  Keeping my fingers crossed for you and will also keep you in my prayers.  Take care,

    ChgResident

  • BosomBuddyJudyinFortMyersFL
    BosomBuddyJudyinFortMyersFL Member Posts: 90
    edited June 2009

    Hi Chg. Resident and anyone else.  Good to hear that you are watching your diet.  I gave up alcohol and have cut way back on caffeine.  I have also faithfully been working out - yoga, zumba dancing and weight lifting.  I am 67 years young! I also do water aerobics.  I'm not in perfect condition because we eat out a lot, but working out helps stabilize my bad habits.  As far as alternative treatments, that is between you and God.  My faith is what has gotten me this far.  I would read everything I can about your condition.  You might want to start with Susan G. Komen on the web and also check out a support group.  You also might want to find a women's breast center to have your mammogram at.  I had an emergency mammogram last Christmas and that was the only place available to me at the time and they were wonderful.  In fact, my hospital has taken over our women's breast center and that is where I plan to go for my mammogram in July. You need to be able to put your trust in someone medically.  Mine is my oncologist.  He does not want me to take any meds for any conditions that I can avoid. He does not want me to incur any side effects which may harm my breasts!!!!!!  Hope I am offering some good info.

  • katiekatherinekat
    katiekatherinekat Member Posts: 3
    edited June 2009

     I, KatieKatherine,  am joining the discussion. I called the radiation oncologist on Friday, and I said, "I just want you to know I have a painful breast."  Didn't for eight months after the surgery and the mammosite.  But now. . . . like everyone else who has joined this thread, I thought I was the only one who was having pain. After I called the doctor, I did a search "mammosite after effects scarring" and I came straight to this site.  So the first thing I did was print eveyone's experiences and underline all my "me, too" experiences.  The radiation oncologist  is supposed to call me tomorrow.  Belonging to this site will make the conversation more interesting I think. 

    I have worked with a physical therapist trained to help undo the knots of scar tissue in soft tissue.  She also works with Lymphedema rehabilitation.  She has really helped me develop techniques to reduce the scar tissue. As long as I was seeing her, the pain seemed at bay, but in the past few weeks pain has become an issue.  I don't like the idea of cysts and drainage, but I know that my mammogram came back with a big white spot (scar tissue) and a smaller dark spot. It has a name that sounds like sarcoma, but isn't'; it's a pool of fluid or blood.  No one referred to it as a cyst. I had Stage One, not DCIS; I don't think that would make any difference.

    Anyway, we need to tell our doctors about this! 

  • katiekatherinekat
    katiekatherinekat Member Posts: 3
    edited June 2009

     I, KatieKatherine,  am joining the discussion. I called the radiation oncologist on Friday, and I said, "I just want you to know I have a painful breast."  Didn't for eight months after the surgery and the mammosite.  But now. . . . like everyone else who has joined this thread, I thought I was the only one who was having pain. After I called the doctor, I did a search "mammosite after effects scarring" and I came straight to this site.  So the first thing I did was print eveyone's experiences and underline all my "me, too" experiences.  The radiation oncologist  is supposed to call me tomorrow.  Belonging to this site will make the conversation more interesting I think. 

    I have worked with a physical therapist trained to help undo the knots of scar tissue in soft tissue.  She also works with Lymphedema rehabilitation.  She has really helped me develop techniques to reduce the scar tissue. As long as I was seeing her, the pain seemed at bay, but in the past few weeks pain has become an issue.  I don't like the idea of cysts and drainage, but I know that my mammogram came back with a big white spot (scar tissue) and a smaller dark spot. It has a name that sounds like sarcoma, but isn't'; it's a pool of fluid or blood.  No one referred to it as a cyst. I had Stage One, not DCIS; I don't think that would make any difference.

    Anyway, we need to tell our doctors about this! 

  • BosomBuddyJudyinFortMyersFL
    BosomBuddyJudyinFortMyersFL Member Posts: 90
    edited June 2009

    Hi katiekatherinekat:

    Welcome to our website.  What you are referring to is definitely a cyst and it is probably filled with yucky fluid like I had removed at Christmas time.  My breast was so painful for so long, you couldn't get near me.  I had an ultrasound and it showed up right away.  The doctor immediately put a needle into it and drew out this yellow fluid that was benign at the time.  The pain left me instantly.   The cyst has refilled again after one and a half months and I'm so frustrated, I don't even want to go there to see if anything else has developed.  Please read my previous e-mails.  I suggest an ultrasound.  They can pinpoint what's there immediately.  When I saw my oncologist after it was drained and it had come back, he didn't want to put another needle in at the time.  My mammogram is set for July 15 and I dread the thought of it.