anyone had mammosite radiation
being 60, small tumor but high grade, my radialogist is suggesting mammosite radiation after a lump. anyone go through this. any comments would be welcome
Comments
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Hi...I posted this same question back in January. I ultimately decided not to do it because the only way I could get it was to "jump through hoops" in a study that wouldn't even guarantee I would get it. The reason being is that I was 40 and they have only studies for women over the age of 45 and I had close margins.
I am not sure how to post a link so I will "bump" up the topic so it is more recent to read the responses I received.
Good luck with your decison! Research it and go with your gut instinct!
Wendy
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Hello
I had Mammosite Radiation a little over a year ago.....I did quite a bit of research in advance and talked with a lot of the Medical Professionals I work with. It seemed you have to meet a group of requirements without exception and once you have done that it can be a go. You need to be post menopausal with a small tumor and not an incredibly small breast , the location of the Mammosite vessel is important , and the surgeon who places it has to be skilled and experienced. My entire experience went very well....I am part of the ongoing study and at this point I can say I had nothing but positive experiences throughout. I am now 18months and 2 mammograms post Mammosite and surgery and all is well. If I can be of any more help to you please send me a PM and I can be more specific. Best of luck with whatever treatment is best for you !
jan
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sounds just like me... I am still leaning in this direction. I like the radiologist as well
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Thank you for your info about Mammosite. I have been recently diagnosed with IDC, and will have a Lumpectomy this Wednesday, June 16......and expecting to be able to use the MammoSite Targeted Radiation Therapy.
I have a question, and I think you will be a good one to ask. What kind of "under garments" will I need for after surgery and during the time before and through the Mammosite treatments?
Sounds trite....but tomorrow and maybe Tuesday will be my only shopping time before surgery!
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you must be going through mammosite right now and learned that there are no garmets but a wrap around given by the staff to keep the instruments in place. it is not uncomfortable but doesnt hold the boobs in place very well. like a tube top..
it is painless and quick eventhough it is wearing me out going an hour each way twice a day.. but much better than 3o some days in a row.. except for kjnowing there is a foreign body in my breast. it is relatively easy
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Thank you for your reply, Helenap!!
So, you are going through MammoSite this week?!
As it turned out, I am not able to use it. My nodes were clear (good!), but during the surgery, my surgeon had to take more tissue than he first thought he would need to take. That put the "cavity" too close to the surface of the skin, eliminating me from qualifying for MammoSite. I was really looking forward to having it all done by the end of this week. I was given my diagnosis on May 24 and thought it would be wonderful if my Radiation was to be done by June 25! But...not so.
Right now I am waiting to hear when my appointment with the Oncologist will be. I am most anxious to find out what my treatment will be and when it will start. The Radiation Oncologist talked about a 16-day Radiation plan.....so I am wondering if I might be having that.
When did you get your Grade? I know I am Stage 1.....but the surgeon did not mention the Grade.
Take care....today is Day #3 for you!!
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Yesterday I found out my Grade.............it is 3. That was not a huge surprise since I knew my cancer was "very aggressive". I am wondering now....does that mean more aggressive treatment, as in Radiation and Chemo? I know each individual's diagnosis and treatment are unique....and there is no cookie cutter remedy. Surgery was 8 days ago, and I am wondering when the Med. Oncologist will set up an appointment for me. I have heard that waiting is the hardest part!
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my grade came from the first pathogy from the biopsy. grade 3 with comedo cells.. but small tumor. I made appts with oncologist and radiioloist prior to surgery. the radiagolist suggested mammosite but they wouldnt know for sure until after surgery. two days after surgery, the FINAL pathology came back and yes yoiu have to be 7 cm from the outside of the breast. I was 11.. with small tumor, all went well all week. until they had to take the catherer out. my site healed and pulling that out.. well to say the least it was very painful. i am still glad I did it this way since I am DONE. done for this time. and still struggling with pain tonight..
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Helenap, I am glad you are DONE with the Mammosite now! I wish I could have used it too. We would have been having it done the same week! What will your next step be?
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My surgeon is hoping I can use Mammosite Radiation as well. I have my lumpectomy on the 6th of July. I have a question, is it placed at the time of the lumpectomy or later?
Karen
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Kira,
The plan for me was to have the "balloon" placed at the time of the lumpectomy. It would then have been filled with saline solution until the radiation treatments. But, I was not able to proceed with Mammosite since it would have been too close to the surface. I wish you all the best for your surgery! It is hard to believe how many of US are going through such similar things. I am so grateful for this website in bringing us together. You take care...enjoy your weekend, and I'll look forward to hearing how well you are doing after surgery and as you have your 5 days of Mammosite.
Carol
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at the time of surgery, they place a holder tube and when you find out you can have mammosite, they put the real one in there (the tube cost if $5000).. mine broke in my breast and had to be replaced. doesnt happen open and wasnt painful but putting the real one is.. since they have to position it just so. they give you needles to deaden the area. The mammosite readiation was a breeze and I am done but unfortunately for me, the site was healing with the tube in it. so when i was done rtreatments, taking that tube OUT was painful -- very painful. still not feeling well and with some pain but I AM DONE. where they took out the lymp nodes and there were only 2 is still hurful and sore.. so I assume that too shall pass.
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Helen,
Will you have to have any chemo, or are you all done w/your "treatment"?
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Does anyone know can Mammosite radiation be used if you lobular breast cancer.
karen
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Thanks Carol,
This is the site that got me wondering. It says people with lobular breast cancer are not good candidates. My BS had originally suggested it for me, but now I am wondering if it will work. I know he hasn't told the hospital to prepare to place it at the time of surgery on Wednesday. The nurse seemed suprised he hadn't. Well hopefully I will find out something at the visit Tuesday before surgery on Wednesday.
Karen
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Karen,
I cannot believe your surgeon has left you with such uncertainty about just what will be happening during your surgery!
As I said, I was prepared to have Mammosite, but during surgery those plans changed. I am finding that things will change, and I/we cannot be certain about things happening until they do. I was supposed to have my first radiation treatment this Wednesday. I went for my markings on Friday, and was told the I need to have Post-Op Mammogram first....so the first radiation will not be until next Monday. I meet with the Medical Oncologist on Wednesday, and I am most anxious to hear what he has to say to me......about me.
I wish you well...and my thoughts and prayers are with you.
Carol
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I had the mammosite procedure in May 2009. I felt very fortunate that I could have this procedure done and be back to work within 3 weeks. My insurance covered all expenses. I went in in the morning and came back after lunch. My husband and I went to Hooters so we could see young, perky breasts. They were having a fund raiser for breast cancer and when I told my story they gave a Hooters breast cancer shirt and pin. The brochure and website abut Mammosite however never addressed the problems that one can have.
I am so glad to have found this site. I have had post operative problems that I have not found address until I found them here. I have scarring and recurrent pain. Last Dec I developed so much pain they thought I had fractured a rib. I have also had a seroma drained (60cc) and it has come back but they don't want to keep draining it due to the chance of infection. I thought I was just a whiner but am glad that these complaints are valid.
I was wondering if anyone has had scar revision done I have heard that recovery takes longer than the lumpectomy and sentinel node biopsy. My thought that maybe they could remove the seroma for good since that seems to be the reason for most of my discomfort.
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I am so glad to have discovered this site. I had my lumpectomy and lymph node biopsy done in May, 2008. Two weeks later I started the mammosite radiation. It was a rough week, but I only had some slight fatigue which also could have been traveling 45 minutes in the morning and hanging out around the area for the second course of the day. I also had no problems with my incision no scar tissue, but I did have a seroma drained after three months. I am now (2 years and 2 months out) and have recently had some problems. I noticed my incision was pink, after being my normal skin color for at least two years. I also found a ping pong sized lump 1 1/2 inches above my incision, with some mild pain. I went to my surgeon and she told me that the lump was scar tissue, but found a seroma and drained 1cc off it. I trust my doctor, but am very disappointed in this outcome, especially since I thought I was doing so well. Of course, now its the weekend, my surgeon is out of town and I feel swollen, very sore and the site is slightly warm to the touch. I was told I was a perfect candidate for mammosite, but I'm wondering if I made the right choice. I have read at this forum many responses from so many women and I must say it makes me feel better, but I'm sorry that so many of us are having to go through this. It might be better to really think about this and discuss it with the radiation oncologist and breast surgeon and ask lots of questions about this treatment
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I had my lumpectomy and SNB on Wednesday and my surgeon inserted the placeholder tube for the Mammosite radiation. My pathology report is due back on Monday and if all goes well, she will insert the real tube on Tuesday or Thursday and I will proceed with the rads. It's a bit inconvenient at the moment because I cannot shower with this placeholder. And it is continuing to drain a little. But it will be worth it if there are no surprises in the path report and I am through will all of this in the next two weeks. I live very close to the center where I will receive the rads (10 minutes away) so I am keeping all my fingers and toes crossed that this works out.
Let's continue to update each other on this procedure as I've not seen any other discussion thread specific to Mammosite rads.
Michelle
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Necessity is the mother of invention...
or "how I managed to take a shower and keep the little mammosite tube and open incision area dry"
It had to be done, I couldn't take it any longer. I had not had a shower since Tuesday night and while sponge baths and washing hair in the sink are better than nothing, I couldn't go another minute without the real deal.
So, with DH "out of my hair" (pun intended) and off to the golf course, I grabbed a sandwich ziplock bag and some packaging tape, put the tube in the bag, closed it up, taped it up, taped it to me, and hopped in the shower. I kept my back to the main flow but managed to do what I needed to do and the area stayed dry. I figured if they can come up with a way to keep a leg cast dry, surely I could keep this little thing dry. It worked, I'm happy.
I went to the drugstore and bought some "absolutely waterproof" tape along with a few waterproof bandages and stuff, so I am good to go.It's the little things....
Michelle
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Michelle,
That is a great idea taking a shower. I got theballoon placed Friday. I already feel dirty. Will get to the drug store. i start the treatments on Monday. The placement of the balloon was not bad. The BS also removed some more margins, and that hurt like crazy. I had 2 inturns with him in the office, and was awake. He used at least 10 shots of the numbing stuff to keep me quiet. He burned some skin away which I had no iea he was going to do. After he was done the one intern said DR. I need to get out of the room fast. Boy that made me feel good. He told me 40 minutes top, well it was over an hour. If I ever need margins corrected again he better put me to sleep.
Karen
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My lumpectomy and tube insertion were done under general anesthesia. I'm pretty sure I wouldn't want it done with just a local. But then, my tumor was 3 cm and there were hints that it might be bigger. It turned out that it wasn't, so I'm still good to go for Mammosite unless the pathology report comes back with bad news. It will not, it will not, it will not!!!
Michelle
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michelle,
I had the lumpectomy under general anesthia too. This was to get the margins correct. Do you have your balloon in the lumpectomy cut area? I now have 2 cuts on my breast, the balloon one and the lunpectomy one.I am excited about getting it started.
Karen
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I had my firs set of radiation treatments. I had to have the balloon check before each treatment, which must be done each time. I asked about the amount of radiation I recieved each time, but was assured it was very little, and very important to check the placement of the balloon. The actual treatment only lasted about 5 minutes. They had music from my time to listen to which really made the time go quickly. I felt the seeds go in, and could feel them moving around, but no pain at all.
I have to say the people I have meet are wonderful. I could not ask for better care, nor kinder people. We were hoping I could stay at the hope lodge during my stay here, but unfortunatly hope lodge is full. The National Cancer Society have decided to help out with the motel bill, which is so nice of them. The hospital people have been so good about helping me get in touch with all these people. If not for them would never have known how much help there is out there for cancer patients. I feel so blessed to have met all these people.
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Kira - glad your treatment is going well and you are getting some assistance.
I am extremely lucky that I live ten minutes from a local branch of the Kansas City Cancer Center and I will be getting treatment very close to home. This afternoon, my surgeon took out the placeholder balloon and inserted the real deal, filled it and attached the tube, then packaged me up quite nicely...lol. She gave me a local before starting, so nothing hurt at all. I have an appt at 9:00 in the morning which I assume will be for all the prep stuff. She told me that I would probably start rads tomorrow afternoon. I am ready to get this done!!
Michelle
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Michelle,
If I'm right you had your first treatment yesterday. How did it go? I am beginning to drag a bit. The nurse is telling me to rest before the next treatment. For me today is day 4, so nearing the end. I also have a slight redness, but nothing to worry about. Let me know how things are going with you.
Karen
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Hi Karen,
As it turns out, yesterday was all about the prep work. Measurements, two CT scans because they had a hard time getting everything into exactly the right position. Plus my breast cavity had air in it, so they had to "massage" it out of there so that the tissue was making contact with the balloon. It's a very interesting process, and very labor-intensive. I must have 10 different people involved between the CT scans, the treatment, and then re-dressing the tube insertion area.
I had my first treatment this morning - it was a little before 10 by the time they turned on the machine because, once again, they had to massage away the air from the cavity. You would think I was "pumping me up" with an inflater!!! And I was out of there by 10:15. It will be interesting to see how I'm feeling after a couple of days. But I will have two days off for the weekend, so maybe I won't even notice any unusual fatigue. Honestly, this whole roller-coaster ride has sapped my energy, and after radiation is finished I need to get "moving" so that my blood sugar numbers remain good.
Get lots of rest! I feel we are so lucky to be able to have this short treatment course, and it would be easy to underestimate the side effects. My husband won't let me do much of anything at the moment, so I'm taking advantage of it. It's the part he can fix, and I'm letting him
Take care!
Michelle
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Congrats on your 1st tx! It will fly by (unlike my 16 tx...which was WAY better than 33). Glad you were eligible.
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I really can understand. I didn't have the air problem, but on day 3 I guess I kind of deflated. They had to rework everything, and I thought for sure they were going to tell me the BS was going to need to put it in again. I think it was just the swelling from the fixing the margins was beginning to go down. I agree let you husband help you out, because it really is rather intense. I have my daughter here with me, and she has been great about doing all she can. The only thing she can't do is hold me when I need a shoulder to cry on. Last night was one of those times, my poor husband was ready to close up shop and come to be with me, thank goodness I talked him out of it. We own the company, and if he isn't there no one can keep things going.
Karen
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