Has anyone done MammoSite Radiation Therapy?

kdeit

Angel,

According to the MammoSite web site, there is a disagreement between the American Society of Breast Surgeons and the American Brachytherapy Society.

http://www.mammosite.com/breast-mastectomy/mammosite-right-me.cfm

The Breast Surgeons say 45 or older, and the Radiologists say 50 or older.  So - I would definitely ask the surgeon to talk to the radiologist.  If the radiologist really won't do it, then you might ask him about a 3-week protocol, instead of the 5 to 7 weeks.  Another member here who was not eligible for MammoSite, mentioned it and I read about it recently.  It's a fairly new protocol, so he may not agree, but it's worth a try.  Here's a link to the NY Times article:

http://www.nytimes.com/2008/09/23/health/research/23canc.html?_r=1&ref=health&oref=slogin

Please let us know what you find out tomorrow.

Hugs,

Karen 

jea1013

Angel,

Thanks for the update.  I'll bet you are correct in saying that your rad onc just doesn't have enough experience with this and that is the problem.  I've heard also what you have heard, that you have to be 45 or older, not 50.  Your rad onc sound ULTRA conservative and it seems to be to your detriment. 

 Your idea of getting a second opinions from another rad onc is an excellent one.  If in fact he doesn't have much experience with mammosite, that's a good reason for finding someone who does.  Can your surgeon help you with this? 

Have they put you on antiobiotics this whole time to prevent an infection?  My surgeon always puts people on preventative antibiotics because otherwise there can be a significant infection rate, like I've read 9 or 10 percent.  Good luck and keep us posted.  They should NOT Be making you wait yet another ten days.That is ridiculous!

angel0921

Kdeit, thanks so much for pointing out the disagreement between Surgeons and Radiologists on the MammoSite web site. That makes it VERY clear as it why there is a disagreement here between my two doctors and why my rad oncologist has expressed reluctance. It puts everything in a clearer perpective. I wish the rad onc had just came out and said that instead of (what i feel) what beating around the bush and making me feel confused and anxious. 

And Jea, I have been on antibiotics 4x a day since surgery on 9/4 so that has probably saved from infection. I do want to point out to my surgeon that ANOTHER 10 day delay in starting rads, this time with balloon and mammosite catheter in place, does I would think increase my risk of infection. It does seem absurd to wait that long when there is there should be no reason why I cashouldn't get CT scan done this week and start the five day rads on Monday.

emath

I am 49 and my med onc and rad onc both agreed that I should try and do the mammosite first. I would I would speak up. Sometimes we have to do our own homework and then ask the questions. I found that I had to, and to my med onc's surprise, he was impressed! So, please do all the research and ask questions, even if it sounds a little dumb! I did! LOL  Please keep us informed. (((((((((((((((Hugs)))))))))

OG56

At (News Health.com) they published a study on short term (Mamosite) radiation compared to full breast x6-7 weeks. The age stated is 45, maybe you can print it and take it with you to your next appt. Good luck and I hope you get to start sooner rather than later.

angel0921

I think maybe I didn't explain myself correctly in previous post. The radiation onc WILL go ahead with mammosite rads. He never said he wouldn't. He just expressed to me that I had other options to consider because of my age. He pretty much left the decision in my hands.  

My concern is his wish to delay till 10 days from now because he doesn't want to do CT scan so soon after balloon is in place. He seems to think the balloon has to adjust itself in the cavity for the CT scan to take proper measurments, thus delaying my starting rads by another ten days ....because they can only start  them on Mondays to get the five days in a row (not done sat or sun).

kdeit

Angel,

At my radiation center, they told me that they could and sometimes did start rads in the middle of the week.  No rads were done on the weekend, so the patient would simply finish the remaining days the next week.  As far as the balloon adjusting itself in the cavity - as I posted before, my catheter was inserted and the balloon was filled on a Friday morning.  I went to the radiologist that same afternoon for my CT scan.  Is it possible that he's booked up, and can't start you until later on, and just isn't telling you that?

I really hope you can get everything cleared up tomorrow.  Good luck!!

Hugs,

Karen

emath

I started my rads on a Wed morning, got a break for the weekend and finished on Tuesday the following week. Had no problems with that!

angel0921

Very interesting!!! You know I am so naive, it never ocurred to me that he could be too booked up or something along that line.. And that is news to me the five days don't have to be consecutive..Why can't these doctors just be straight up about these things!!!

jea1013

They also told me the five day radiation didn't have to be done consecutively, that I could start in the middle of the week and finish up the next week.

OG56

When my ballon ruptured they had to replace it and my rad/onc let me out with 9 treatments vs 10 otherwise I would have had the weekend off and 1 more on Monday. My facility has been doing Mamosite since the beginning and were part of the initial research group. However, he told me they don't do very many mamosite, due to women not fitting the profile and because of insurance not paying. Maybe they have to make preparations?? I don't know why they can not give you better answers though!

angel0921

After a long tiring day yesterday, I finally feel better today and have an appointment with a new radiation oncologist (YAHHH!)

Yesterday I had the balloon and catheter for rads put in. The exchange of the dummy catheter for the rads one was not painful at all. The draining was not as much as I thought it would be and so far today (it's lunctime) I have not had to change the gauze.

I found out that they are using not the Mammosite brand, but Contura which "contains five separate lumens or tubes inside the ballon will help to shape or contour the radiation dose away from the skin or chest wall to obtain a more optimal result" (as per the brochure). Later in the day I did feel uncomfortable, achy and had a headache, but I think it was stressed related.

After a lot of asking questions and making phone calls I figured out I had more choices regarding which rad onc to go to. My surgical onc thought I had Humana Gold which limits which facilities you can go to, but I have Humana Open Access which gives me more choices.

The original rad onc,who is so conservative and didn't agree with the brachytherapy. works at a free standing facility (not part of a hospital) and I noticed he had ALL elderly patients. Now it makes sense, he is the rad oncologist used with Humana Gold for seniors and I don't think he has a lot of experience with women under 50 with breast cancer. Thus, he did not feel comfortable doing brachtherapy on me!

To make a long story short, I now have an appointment with a FEMALE rad oncologist (on Monday) who is part of same hospital as my surgical onc and I think I will feel much more comfortable. I don't think it will put my treament behind since the other onc didn't want to do CT scan till Monday at the earliest because he kept insisting the tissue has to "settle" first from the balloon insertion before he could do it. He also has all these "ifs and buts" about whether the brachtherapy radiation will work. I am afraid by the end of CT scan he would declare I was not an appropriate candidate for bractherapy. He kept saying that even after the CT scan, he would have to carefully "study" the measurements of the cavity and balloon and this could take several days!!!

So I am VERY happy I am going to someone else. I feel very empowered by taking charge of my treatment and making my choices that I will comfortable with.

emath

Way to go angel! The Contura is still pretty new. After I had mine just last month, I learned of it. Glad that the transfer of the mammosites went easy for you. Having the rads really is painless. Are they going to do CT scans every morning to make sure that it still is in place with no leakage? They did a CT scan every morning before my rads to make sure. Good luck to you and keep us informed. ((((((((((((((hugs))))))))))))))))))))))

jea1013

Angel,

HOORAY!!!! You did great!!!!! I'm so glad things are working out for you thanks to your persistence.  We're all rooting for you that this will good utterly smoothly and you will be done very soon!!!! It is a GREAT feeling to finally be done and now you can see the light at the end of the tunnel.  You go girl!!!  

KAK

Angel, just wanted to put my two cents worth in here, too.  First of all, good for you that you're seeing someone else!

I'm the other member here that Karen was referring to above who couldn't do MammoSite, but could do the 3-week option.  So, in the first place, your first onc is wrong to say there's only the three options you mentioned above.  There's also a 4th & a 5th option.

The 4th option is external radiation for 3 weeks or 16 visits, which Karen mentions above & which I am doing.  Read today's homepage article here on bc.org.  It works just as well as the 6 or 7 week protocol & I've just finished two weeks of it & no skin problems at all so far.

The 5th option is a twice a day for 5 days protocol of external radiation.  There are some women here on the forum who have done that & done well by it, although it can be more toxic because you are getting fewer but larger doses each time.  Here's a link on this:  http://www.cancer.stanfordhospital.com/forPatients/services/radiationTherapy/partialBreastIrradiation/fiveDay

I have to say that my rad onc never brought up any options except 7 week external rad when I had my first visit with him.  It was only because of this forum that I gathered info on other options, so I brought them up, including MammoSite, on my second visit.  I'll give my rad onc credit, though, for saying "Oh, okay.  Let's evaluate you to see which ones would be appropriate."  So, he checked me out for MammoSite, which unfortunately I couldn't do because my cavity was not well-shaped for the balloon to fill it properly.  He wasn't comfortable with the toxicity of the 5-day/twice a day one, but he felt comfortable offering the 3-week course.  So, that's what I chose.

Having said all this, I also realize that every radiation facility & oncologist is not going to have experience with every protocol.  The five-day/twice a day protocol of external therapy does not yet seem to be widely available.  So, I don't know what your rad onc will be able to offer, but I know that if MammoSite doesn't work out, the 3-week protocol is on the brink of wide use here in the States.

Good luck!  And let us know how you make out.

Kathi

jea1013

I did the partial breat accelerated five day external beam radiation and did very very well with it.  No burning, minimal fatigue.  My surgeon, my rad onc, and the two med onc I saw all are very comfortable with my doing it. They were not concerned about increased toxicity, and in fact all four told me that the side effects appear to be less with the five day version than the 6 1/2 week version.  

 I think it takes a doctor who has experience doing it and seeing the results to be comfortable with it.  My rad onc has been doing it as part of the clinical trial for quite a while and is very pleased with the results.  

The three week version is also very very promising.  I am SO GLAD we are starting to have some choices in this radiation decision.  

ICanDoThis

I also did the five day external beam radiation. No burning, but extreme fatigue. But I finished on Friday, was back to work on Monday.

My rad onc also had done it as part of a clinical trial.

Good option - I started with Mammosite, and got an infection (be sure you get on an antibiotic, if you go for an open catheter option!), and was lucky to finish up with the external beam.

I'm also thrilled with the options that we are starting to have!

ginger2345

Angel,

HOpe all is going well for you today. And it does feel good to "take charge" of our health care. Good for you!! Let us know how you're doing.

angel0921

Hello Ginger, Jea, Kak, Emac, Kdeit, OmahaGirl and all the supportive women who have been reading about my journey to the land of radiation...

Well I LOVE my new rad oncologist! She is great. Just the kind of doctor I needed to help me through this and make it less intimidating and scary. She is also on the fence like the previous rad onc as to whether five day mammosite or regular external rads would be better in my case. The issue is my age and family history.But, with her I felt a definite comfort level and that we were making decision TOGETHER.

She mentioned a medical conference held last week in Boston where the topic was which was best rad option for women with my profile. She said she would take a good look at the most  recent research to help in my decison. I have an appoinment for simulation on Wednesday and at that time we will look at everything and decide which is best option for me. I feel SOOO much better seeing an onc out of the hospital's cancer center versus the other rad onc renting space in a business center.

 For me personally , it just feels like a better level of service. Maybe it's because I had such a bad experience with a freestanding location radiologist who never identified my DCIS despite a year's worth of 3 month follow-ups. Finally, I went, at primary's urging, to the hospital's Women's Center for consultation since this other place couldn't figure it out. The hospital found the DCIS.

I also liked that the new rad onc began discussing with me the need for the BRAC testing which up until now no one had mentioned. I knew I wanted to do this from my own research, but not because any medical professional had suggested it. She gave me two names of medical oncs (also females) that she highly recommends.

I also told her about my experience with surgical onc pushing me to stay with other rad onc allegedly because he thought my insurance wouldn't cover anyone else (in retrospect, that statement in itself was strange). She said these types of referrals are very "political" which leads me to believe my surg onc has a deal with rad onc to send patients to him. That really bothers me, but I believe this is way the medical community works. I understand they "help each other out", but it shouldn't be at the expense of taking a patient's right of choice away from her. We are so vulnerable at a time like this and it sucks to feel like a doctor would try and persuade me to go with another doctor for their monetary gain instead of looking at MY level of comfort as the first priority.

So hopefully on Wednesday, I will know one way or another which rads I will doing and starting them soon!!! This mammosite catheter is less cumbersome than the original dummy one, but it's still a bother. I hate wearing sports bras 24/7 and now I have to be extra careful when showering with using plastic sheet around site and catheter to avoid getting it wet. I refuse to stick to sponge baths. I have been in this catheter predicament too long!!!

jea1013

Angel,

Thanks so much for the update.  We've been thinking about you and hoping for the best!  I'm SO GLAD you have found someone you trust to help you through this.  That makes so much difference!  It will be intersesting to see what information she brings back to you next time you see her.  Please keep us posted!

ginger2345

So glad you've found people you trust. You've done your "homework" and hopefully your appt. on Wednesday will go smoothly and you can get started on this next phase.

boobytrapped

Thx KAK for explaining all the available options on our radiation treatments.  I'm currently planning on the MammoSite and BS already confirmed during my lumpectomy that the ballon is a good fit.  My post-op appt is next Tues.  Does anyone have experience to share on whether health insurance is covering these shorter, newer treatments ?  I'm pretty sure my insurance will not cover clinical trials but I haven't got a straight answer from them yet on the MammoSite.

jea1013

My insurance covered the one week external beam radiation and it wasn't even done in the clinical trial.  My rad onc said he had had no trouble with insurance companies covering this procedure in or out of the clinical trial.  After all, it is cheaper for them to have you done in one week.  Your rad onc should be able to let you know about your particular insurance. 

kdeit

Angel,

I'm glad that you have a doctor whom you can trust and feel confident in.  It makes all the difference in the world, doesn't it?  Be sure to let us know what the two of you decide tomorrow.  She sounds as if she is going to take a much more personal interest in you than the other rad. doc.

bobbytrapped,

My insurance (Cigna) covered my MammoSite, but be sure to find out if yours will before starting the procedure.  The charge was almost $60,000.00!!

Hugs,

Karen

emath

Wow Karen! My insurance only covered up to $1200.00 a day for rads. My total bill came in the other day and I almost fell over. The total bill was $74,000.00 for the 5 days. Leaving a very big sum for me to pay! If the bc don't take you out, the medical bills will.  

kdeit

Ellen,

I am very fortunate to have good insurance, and I'm so sorry that your insurance didn't cover it all.  If you had done the "normal" 5 to 7 week external radiation, at $1200 a day, it could have totaled at least $30,000 to $42,000.  Can you appeal their decision, based on the fact that you received the same amount of radiation, but in fewer days?  You should not be penalized because of newer methods of treatment!!

Hugs,

Karen

jea1013

Ellen,

I agree with Karen, you need to FIGHT this!  Did you check it out with your rad onc?  They should be able to plead your case.  It is outrageous that you should be charged this.  People do have success battling their insurance companies--some companies will try NOT to pay whenever possible, and they sometimes do give in under pressure from Docs.

 I wonder why the place you had the rads done did not check with your insurance company FIRST to see if they would pay.  Seems like they might have wanted to be sure of that.   

OG56

I have a lot of bills to pay also, because I went to a non-participator and I remember the onc. nurse telling me not to get to excited about the Mamosite " because many ins. companies won't pay for investigational tx's." luckily mine did.

I would certainly even write to the Mamosite group and ask for their assistance. Also, ask your rad/onc to accept what insurance pays or to give you a huge discount, which the department and the hospital can do if they wish!

angel0921

Well here's the verdict: after the simulation and CT scan, the radiologist and other medical professionals (there were like 4 in the room!) including onc rad determined mammosite will not work for me. I have implants (have had them for 5 years now) and the mammosite balloon once it was filled all the way with saline pushed up against my implant which I am not quite sure why it meant internal rads couldn't be done. Maybe the radiation wouldn't have emanated properly? I was so stunned when they told me and how quickly they took out the balloon and catheter that I never got to really process it all while I was there. At my next appointment I will get the details.

I would be lying if I said I wasn't disappointed. After a month of having a catheter in my braest preparing for mammosite and now not being able to is a definite let down. I wonder if this is a common problem for women with implants? If any of you have had this experience or know of it, please share your feedback. Also I wonder how much my surgical onc considered my implants as a possible barrier to mammosite rads and whether or not he should have been less gun-ho about inserting a dummy catheter right away at time of surgery if there was a good possibilty this would not work. 

Now I see why the original rad onc was so less than enthusiastic about my doing mammosite rads. He saw the writing on the wall. I still don't regret for a minute switching rad oncs. I feel much more comfortable with my present one. When I arrived to my appointment (before simulation)she was wonderful about sharing with me the off the press research that showed the most recent clinical trials of five year study on mammosite in early stage breast cancer which indicates results comparable to those acheived with conventional whole breast rads (as far as local recurrence results). She then told me that everything would depend on simulation results. 

So now here I am like starting what feels like another long chapter as I know so many here have also done and will be doing.  They told me I will have three preplanning appointments before I start the actual treatments. I called my insurance to verify that I am 100% covered and was happy to learn that I don't have to pay a copay each time.

And for now, the best part of all of this is:  I DON'T HAVE A CATHETER IN MY BOOB for the first time in a month!!!! Yahhhh. :-) 

ginger2345

Ellen,

That huge sum doesn't sound like anything's been written off the radiology from the hosp or the radonc bills. You could find out what those charges would be and ask for a discount and I think it would be substantial.

I have BCBS and they didnt' pay--I believe about 80% of the BCBS's across the country pay for mammosite, but mine considered it "investigative". My radonc told me it would be covered  because a couple of ladies with BCBS before me got theirs paid, but BCBS later took their payments back and they were stuck.

Here's what I was stuck with after a failed appeal to the insurer. I had done my homework and sent in lots of evidence and used a detrimental reliance theory as well as how beneficial mammosite was in my case, but when I walked in the room for the appeal I could see that my material including info from my breast surgeon had just come off the copy machine!! (The appeal panel is paid by the insurer and of course sided with the insurer) I then complained to our state dept of Insurance and had some exchanges going, but in the end told me I'd have to sue. I actually think I had a good case at least in detrimental reliance but by that point, I was ready to put bc aside.

So the hosp charged me what my insurer would have paid.($15,000.) And the radonc office screwed around with me --I asked for a discount Their charge was more that $7000. for very little work and (I am office mgr for an internist and have access to codes and what insurers pay on each code) my insurer would have paid about $1200. !!! The radonc billing office didn't respond to my request for a discount and instead turned my account over to collections. My husband had some clout with the radoncs, wrote a letter, and the next day the bill was forgiven entirely. In fairness, the radonc's never received my letter, only the business office. I should have sent my letter directly to the managing partner for review.

I hope you can appeal and maybe at least get the appropriate discounts even if you can't get the insurer to pay. You can see my charges were much less than yours. There's got to be some discounts available if you ask. Good luck.