Has anyone done MammoSite Radiation Therapy?

hopefullady

Okay, I am back from the oncologist and my score was a 20.  He says that the chance of recurrence is 13% and could be lowered to 6% if I do the chemo.  

I'll think about it while I'm gone and am scheduled for some more tests when I get back home.  I guess it never does end.  Any advice is welcome.

Chris 

MAA123

Chris, Score was 20. Chance of recurrence is 13% WHERE? Recurrence in the same breast or recurrence anywhere in your body?  I guess I would consider family health history, including your own. I'm glad you'll have time to think it over and do some research. I guess we've just got to educate ourselves and then go with our gut feeling. The answer will come.  Take care and have a great trip. Don't work too hard....but play hard!! 

emath

I finished my mammosite rads 2 weeks ago. I have been told that only 20% of women can do mammosite. During your lumpectomy they will insert a "dummy" or temp mammosite. A few days after surgery they (your surgeon) will take out the temp and insert the real mammosite. This is done only with a shot to numb the skin around the opening. Once the real mammosite is in then your surgeon will call your radiation doctor and make your appointment to come in. You go in for a CT scan and then if everything looks like it is in the right place and there is enough tissue between the skin and balloon, then they will insert a colored dye. The next five day you will go twice a day. Every morning you will have to have a CT scan first to make sure all is still ok. Then you will have the rads. It takes about 15 minutes for the rads, then you leave. It was not really painful at all. On the fifth day after your last rad treatment, then the doctor will take out the mammosite. Now, putting it in and taking it out is painful, but only last for about 2-3 minutes. I did get a little sick feeling at times, was tired some and now that it is over my skin feels tight and is dry. I just keep lotion on this area all the time, it does help. I go tomorrow for my 2 week check up.

kdeit

Ellen,

Congratulations on finishing!!   I hope you have a good check up tomorrow.

I think each surgeon may do the procedure just a little bit differently.  Mine did not insert a dummy catheter during surgery.  It was inserted in her office a few days later, and she did make another incision after numbing me.  I definitely would have preferred the way that your surgeon did it. 

Hugs,

Karen 

emath

OUCH!!!  I am sure that was not fun. Mine was not easy, I had scar tissue already forming both times on mine which made it a little more painful, but to have them cut and insert afterwards.  Hats off to you Karen!!!! Congrats on getting this done.

KAK

Way back in April, Jackieinbam posted a suggestion to use Oragel on a sensitive nipple.  Haven't had rads yet, but am 2+ weeks post-lumpectomy & having the same trouble with breast & especially nipple sensitivity.  And, yes, Jackie, the Oragel really helped!  Ice has been very helpful, but that darn nipple "had a mind of its own," to quote you, so it needed a little extra something.  So, thank you for that excellent tip.

I was due to get mapped & tattooed for standard rads at the end of this week, & found this thread plus guidelines/criteria for Mammosite radiation.  I definitely fit the criteria & am a bit peaved my docs have not mentioned it.  So I called the rad onc today & told him I want to talk about it when I go in.  Fortunately, I was able to look up the med center where I'm being treated on Mammosite.com to find out that they are set up to do this protocol.  Who wouldn't want to do 5 days instead of 7 weeks if they could?  I want to get my life back!!

kdeit

KAK,

I'm so glad that you found this thread BEFORE you started external radiation!!   As long as the distances from your cavity to your skin and from your cavity to your ribs is within their criteria, you should be OK.  Please let us know what you find out after your appointment.

Hugs,

Karen

KAK

Thanks, Karen, I will.  There's even a Phase II clinical trial, that's being done just to keep repeating & measuring the success of MammoSite radiation, that's do-able in terms of driving distance.  I'm so grateful for this site, especially the forums!!  I've learned so much from everyone. 'Course it's like we all have to go through a crash course in breast oncology when we get this diagnosis, don't we??  I'll get back to everyone.   Kathi

searching4

Good luck with that and keep posting.  I have to decide this weeked which type to go for--  or possibly even the Contura which is a newer version (and different brand) of the MammoSite techique.  I love all my doctors EXCEPT that I don't think anyone would have mentioned the MammoSite option if I hadn't done my research and known about it. 

Lucky you found out about it, too, right?

Hey!  My second surgery for clear margins was the same day as yours!  Deb

emath

I finished the mammosite rads the first week of August. I still have very dry skin around my shoulder, under arm, and underneath my arm to the elbow. It feels really tight, so I keep a lot of lotion on it to help. Still have some pain and even a burning pain from where the SNB was. My onc says that is normal. Probally nerves that were cut. I did get an infection from the port site which was under the arm area to the nipple. Took 2 weeks to clear up. My question is has anyone out there had any other problems with this? I have also notice over the weekend that my nipple is peeling and no longer a pinkish brown, it is white color in spots now and under the nipple itself, the crease around it is a very dark color and more sensitive than it was. Is this normal or should I get in to see my onc again? Not sure what really is normal since this is still fairly new and the research on it is still being done.

searching4

Well, didn't work for me.  I wanted to try it but not enough distance from cavity to skin-- almost none in fact.  So I'm starting the long course next week.  Good luck to you all!

emath

Good luck midsum1107 with your rads. Mine just barely made it! The rad onc was a little concerned, but I did ok! Keep us informed on your trip! ((((((((HUGS)))))))))))

mimi98

Hi All,

I haven't been able to find much information on Mammosite Radiation and have found this discussion board helpful.

 I had a lumpectomy on May 20 and 5 day Mammosite radiation in June.  I don't have to take any drugs and I was released from the medical oncologist. 

I had bleeding on my breast after radiation from burns or chaffing and hard egg like mass in breast.

 It has been 3 months since radiation and my breast feels like a have a fried egg inside, it is hard and numb.  My nipple is inverted, tender and sore to the touch.  I have a deep crevas in my breast that feels like it is being drawn up by a drawstring. 

A couple of weeks ago my breast started retaining fluid, I went to my surgeon and had the breast drained.  She put me on an antibiotic and in a couple of days the fluid returned, so she drained it again.  She told me that I had a couple of options, I could continue to have my breast drained or learn to live with it. During the coarse of the day my breast has an achey feeling and my arm rubs the side of my breast.  I asked her about surgery and she really didn't say that was an option.

 With all the cosmetic surgery out there I thought they could do something to make it feel better.  I'm not asking for a gorgeous boob, I don't care about how it looks, I want it to FEEL BETTER.

Has anyone had similar experiences?  It would be nice to share.

Also thank you Jackie and Karen for responding to my past post.

Janice

emath

Janice I know what you are talking about. I finished my rads with mammosite the first of August. Was doing better until a few days ago. I did get an infection right after they took the site out and was anitbodies for 2 weeks. Now my left boob feels hot again, has a hard knot and really is starting to hurt again. I am even having pains from the breast to the SNB scar and under the arm pit. My nipple is scaley and peeling and very tender to touch, and the under side of nipple is inverting some. It also looks a little dark like black colored skin around the under side. I go in Monday (weather permitting) to have more blood work an a Nuclear Medicine Liver/Spleen scan. Then I go back to the doctor. This mammosite is still in it's early years and not much studies have been done. All my doctors ask 100 and 1 questions everytime I see them. They do this to document SE's. I too want to feel better. I am getting tired of pain! I had my lumpectomy on July 23, and I still can not wear a bra. I wear a sports bra even to bed, because it hurts at night if it falls over to the side. Does that make since? haha  Riding out Ike, hope all keep safe that are in his path. (((((((((((((((((hugs)))))))))))))))) to all!

kdeit

(((((Janice)))))  I'm sorry that you had bleeding after radiation and are still having so much discomfort.  I don't know if what I have is the same, but I have a hard area in my breast that I have been told is a seroma (A fluid-filled pocket where the lump was removed) and that it can take up to a year to be reabsorbed by my body.  My surgeon didn't mention draining it, though.  My incision sites are still red, and the lumpectomy incision does look like a crevice, but it's not painful.  Have you thought about getting another opinion on what can be done to make your breast quit hurting?  I hope you find some relief soon.

(((((Ellen)))))  It sounds as if you may have another infection, or a seroma.  Have you called the doctor, or do you think it's OK to wait until you see him/her on Monday?  I, too, wore my sports bra for a long time after radiation, for just the reason that you mentioned.  I am finally able to wear a normal bra, but it took a long time.

We live in Florida, so were sweating Ike, too, but I sure wish he had decided to head towards an unpopulated area instead of the Houston area.  I have a close friend there, so have been thinking of everyone in Ike's path today.  Please keep safe.

 Hugs,

Karen

mimi98

Ellen thank you so  much for telling me your experience.  It sounds very similar to mine.  It's nice to know I'm not alone with what I'm experiencing.  I'm going to the radiation oncologist next week to see if there's anything I can do.

 I have found cotton bras the most comfortable for me.  But I also take my bra off as soon as I get home from work. 

Since I have developed the fluid retention I have been having trouble sleeping.  My breast is so hard that it isn't comfortable laying on my side.  I have woke up in the middle of the night with my breast really hurting.  I have started using my breast pillow again and that helps. 

 Did you get the breast pillow in the hospital?  I love that thing.  I carried it around for the first couple of weeks.  My grandkids were so funny, they were always running and getting my breast pillow for me when they didn't see me with it.  One day my grandson asked me where my pocketbook was?  Because the pillow had a shoulder strap he thought it was a pocketbook. 

Karen I'm going to ask my doctor about the seroma.  I'm not in a lot of pain, it's more like constant discomfort.  My incisions doesn't bother me at all, because the other areas are so uncomfortable.  The crevass I mentioned is right around my nipple not anywhere near the incisions.

 Thank you again for the input.

 Janice

emath

I did not get the breast pillow, but the hospital did give me a small heart shape pillow which works great and I just love it. Since Ike is coming in, I will have to wait until next week to talk to doctor about mine. Just hoping we don't lose power here. My hot flashes and I will not get along at all in this heat down here without AC!    Will try and stay in touch!!  (((((((((((((hugs to all)))))))))))))))

KAK

Hi, all.  Busy week.  To Karen (kdeit) & everyone, it turned out I couldn't get an internal or MammoSite protocol because my breast cavity was not a good shape - too long and flat.  The balloon has to expand to fill the cavity with as little gapping & as few air pockets as possible, so mine wouldn't work.  However, they were able to offer me an external protocol that has been tested extensively in Canada that is once a day for 16 days -- which is still better than 7 weeks!!  So, one more protocol we can ask about.  The outcomes are good for this 3-week deal, as good as the other protocols.

tbird57

Hi everyone,

I'm supposed to get the Mammosite inserted by my surgeon early Monday and begin the 5 days of radiation on Tuesday.  I'm a little concerned because I'm still having some pain in my boob since my second lumpectomy on September 4 and hoping this won't cause more pain - it's really sore along the side of my right breast from top to bottom and I can't let it flop around at all without having it hurt - I have to hold it up in the shower too!    After the first lumpectomy on August 19, I felt MUCH better than I do now.  I have a huge cavity and huge boobs to match, although the right one is getting smaller and smaller as we go on!  But it appears that I have good distance from the cavity to skin and chest according to the ultrasound.

I also plan to drive to work in between the morning and afternoon treatments and put in at least 6 hours each day.  I have a desk job.  The doctors say I will be able to do this without discomfort or pain.  What are your experiences?   Is this expectation realistic? 

Thank you for your feedback.  Onward with courage, my bosom brigade! 

Teena

kdeit

KAK - I'm sorry that none of the internal protocols were possible for you, but glad that you are able to do the 3 weeks worth.  I felt so bad for the ladies at my radiation center who were going through the 6 to 7 week process - some of them were so badly burned that they had to take breaks from it, and so, of course, that just prolonged it even longer. 

By the way, I sent you an email from your website today - I love it!!

Teena - I hope that you won't have any more pain or discomfort than you are already having, but it may depend on how your catheter is inserted.  In my case, the surgeon made a new incision to insert the catheter, which did cause some additional discomfort.  No matter where or how your catheter is inserted, I would suggest that you buy some sports bras that close in the front.  I bought mine a couple of sizes larger than my regular bra size and was able to tuck the part of the catheter that stuck out of me into the bra to help support both my breast and the catheter. You won't be allowed to shower until the catheter is removed, and will be told to wear a bra even at night.  I wore my sports bras for quite awhile - it was mid to late June before I was comfortable in a "real" bra, and I finished MammoSite on May 23rd.

I had just retired before my diagnosis, and so didn't have to go to work in between treatments, but by the end of the week, I was feeling very fatigued.  The center was over an hour from my home, so I did not come home between sessions.  Instead, I spent time with a close friend who lived near the center.  We did lunch, shopped, hung out at her house, etc.but I don't believe I was tired from that - I believe it was the radiation.

If you are tired, try not to overdo.  The fatigue hit me toward the end of the week and then got worse for the next week or so.  You might want to let your company know in advance that you might have to cut back on your hours while you're going through the treatments.  I wish you the very best of luck.

Hugs,

Karen

ginger2345

I had mammosite radiation in 2004 and didn't find too much pain with the insertion of the balloon. However, after the first day of radiation, my breast was quite engorged and painful. I was still able to work between the two treatments as you plan to do. The pain let up, and the other days weren't too bad. But with whatever type radiation a person has I think it takes some time, maybe months, for all of the pain created thru this whole process to disappear.

Good luck with your mammosite treatment. 

tbird57

Thank you, Karen.  That information is helpful.  The rad onc nurse tells me that I will be tired in weeks 2 and 3; that it catches up with you after the 5 days of treatment are over.  But at least then you have the thing out of you and that part is over...then I start chemo on 10/3...the fun never ends.

Did your breast feel "inflated" with internal pressure and larger than normal?  They're telling me that the breast won't be bigger than it is now but I'm a skeptic and that information sounds suspect to me, if they're trying to drive out air pockets between the device and the tissue...also, do they stitch the catheter in, tape it, bandage it, or does it just stick out?  Any other helpful advice for getting through these treatments?

Love to all,

Teena   

tbird57

Thank you, Ginger.  That is what I suspect - how could they blow this thing up inside you after a surgery and not experience discomfort?  But at least it's over in 5 days...

Love,

Teena 

ginger2345

They stitched my cathetar in place and my husband, an internal medicine doctor, took the stitches out after my last treatment. They deflated the balloon and were able to remove the balloon without removing the stitches, so most women had to make an appt with the surgeon to have the stitches removed.

I didn't feel much in the way of tiredness; most any of the tiredness I chalked up to the whole stressful, decisionmaking time and not just to the rads treatment.

The engorgement made my breast feel like it was larger, but I'm sure it wasn't.

I'd try to keep from moving my arm around a whole lot to keep any potential pain down. The sports bra to keep your breast from moving around is a great idea, but I used a regular bra that fit well.

kdeit

Teena,

I also felt some discomfort when the Mammosite balloon was filled.  More like pressure, than anything else, in my case.  My catheter was held in place with gauze dressings.  The nurse put an antibiotic ointment on the wound and then a split gauze pad, followed by regular gauze pads on top and taped them down.  The catheter is very flexible, so it was no problem for me to bend it down and tuck it into my bra.  The dressing was changed each day.  My skin did become irritated by the tape, and so she was careful not to tape the same place, if possible.  I bought several types of ointment to try to stop the soreness and found that just plain Aloe gel worked best for me.

I hope that you won't have any problems at all, and that you'll keep up the good attitude - you're right - it is over in 5 days!!

Hugs,

Karen

tbird57

Thanks everyone!

T

mimi98

Hi Teena,

 I had the maximum amount of fluid in my mammosite (125 cc).  They had to put more saline solution in to push out the air pockets I had left in the cavity. So this delayed my radiation by a week. I did feel like I had a lot of mass in my breast.  They also made an additional incision for the catheter and it was stitched.  The catheter didn't bother me at all and when they took the catheter out they snipped the stich first and took it out, that was no problem..

I couldn't work when I had the radiation because I'm a hair dresser and they were afraid I might get hair into the open incision.  They were right, I do get hair all over myself when I work.

I was only slightly tired from the radiation and if I layed down for a half hour or so I woke up completely refreshed. 

The tape on bandages bothered me the most with the catheter.  But I did have the catheter in for 17 days so that is probably a factor.  By the end of the treatment I had very minimal tape on the dressing.

My doctor wasn't going to procede with the mammosite because of the air pockets, but I talked her into waiting for the air to leave and that is when she decided to put more saline in to push air out. 

 I was going on vacation to the shore for 2 weeks and I didn't want to drive 1 1/2 hrs each way to get the external beam radiation while on vacation.

Good luck with everything,

 Janice

tbird57

Hi Janice,

Thanks for sharing the information.  It sounds like it wasn't too tiring.  How does your breast feel now?  Any residual effects? With the amount of tissue removed from my breast, I don't think even 125 cc could fill up that cavity!  Was your mammosite the largest size (I think they said there are 3 sizes)?

Also, has anyone had this who had an EIC component to their IDC?  (Extensive DCIS accompanying the IDC)  That's why they had to take so much tissue...

Love to all,

Teena 

mimi98

Hi Teena,

I thought they said there were 2 size mammosites and I had the largest, but I could be wrong.

I do have some side effects.  It has been 3 months since radiation and I have started to retain fluid in my breast and my nipple is inverted and very tender.  It is uncomfortable but not painful.

I'm going to see the radiation oncologist to see what she thinks about it and if there is anything I can do.

Good luck tomorrow,

Janice

hopefullady

Teena,

Good luck tomorrow.  My experience was much like Karen's.  The surgeon made a small incision where my lumpectomy incision was, and I had the split gauze covered by regular gauze taped on.  The nurse changed it once a day.

I also got some cotton front close sports bras and wore them 24/7.  I need the support, even at night, and it held the catheter in place.

I will say that I had no pain with the mammosite, just discomfort at having something there all the time.  I'm sure you'll do fine, and it's only 5 days!

Chris