Has anyone done MammoSite Radiation Therapy?
Comments
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Angel,
I'm glad you've finally got your plan and gotten rid of the balloon!! I think the radonc's are the ones who know when the mammosite will work more than the surgeons. Many surgeons aren't up on mammosite yet because of training and payment issues. Anyway, you found someone you like and that's the important thing. Good luck with your sim and treatment. Let us know how it goes.
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Angel,
I'm awfully sorry that you lived with the catheter in you for so long before finding out that you aren't a candidate for MammoSIte. Maybe you are a good candidate for the external 3-week protocol that KAK has done. Be sure to ask about that at your next appointment.
Ellen,
I misstated the amount that my radiation onc billed for the MammoSite procedure - it was $51,343 (all done in the rad oncs clinic) and after Cigna reduced it (per their agreement with the provider) he received $11,908 from them and I was billed a $40 co-pay. I think you've got a good appeals case. Please ask them to review it and also ask your rad onc to reduce his bill.
Ginger,
I'm appalled that your insurance company would deny your coverage, but glad that the hospital did finally reduce your bill and that the rad oncs office eventually forgave all of their bill. Many years ago when our daughter was just 20, she was diagnosed with cervical cancer. At that time, she was newly married with no insurance. I helped her get her bills reduced to what the providers would have been paid had there been insurance coverage, but the patient should NOT have to beg and plead in order to be treated fairly.
Hugs,
Karen
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Hi, everyone.
Angel, I'm glad things have worked out better with this new rad onc. It's really important to feel like you have some kind of rapport with your docs. I've had #13 today of my 3-week rad protocol; no skin issues to speak of except very light redness that's gone by the next day & some occasional serious fatigue. But that's it & I have only 3 treatments left! Yay! I was very disappointed, too, when I was told MammoSite would not work for me, but this 3-weeker has been very easy to take.
I'm really appalled to hear about those of you having trouble getting your treatment covered! Here are a few links to info on financial help with cancer:
http://www.caring4cancer.com/go/cancer/financial/help-with-costs ; http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources ; http://www.cancercare.org/get_help/assistance/cc_financial.php ; http://www.ontopofcancer.org/breast_cancer_financial_insurance_legal_drug.php
This is just the tip of the iceberg. There are also local organizations in virtually every state that help pay for cancer treatment, so some searching by state on the Web will turn up more info.
Best of luck to everyone,
Kathi
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Karen & Ellen - OMG !!!!! I had no idea this procedure was soooo expensive. I've tried contacting my insurer (United HC) but couldn't find an answer without the right code. Guess I need to talk to my surgeon again. No way can I afford to pay that kinda money. Post-op (lumpectomy done on 9/22) appt on Tuesday, maybe I can find out more then.
Another question for y'all - Do any of you see a medical onc before seeing the surgeon ?
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Hi boobytrapped (I love that name
)Since I knew which radiologist I was going to use, I called their office and asked them to please check with my insurance company for me so be sure that Mammosite would be covered. I tried to do it on my own, first, but also was told I had to know the code.
I didn't see a medical onc until after surgery and radiation. I think that's because he needs the surgical and path reports to determine what treatment would be best for you. In my case, he told me that since my cancer was so small and low grade, that I wouldn't need chemo. Since my tumor is estrogen/progesterone positive, I am on an aromatase inhibitor (Femara)and will take it for the next 5 years.
Let us know what you find out at your next appointment.
Hugs,
Karen
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Good evening ladies! Boobytrapped: I did see a med onc before I seen the surgeon. But everyone is different. KAK: Thanks for those sites. I will check them out. I did a total of all the rad bills and it all came to $87,789.00. The insurance did give a PPO discount of $20,000.00 but only paid out $7,400.00 on this bill. I have called the hospital and requested a Charity Form be sent to me, since I am not working. If approved this will help the coverage. Also Monday I go to the rad onc and will be talking to him about this bill and hopefully he will reduce it. Will let you all know.
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WOO HOO Kathi,
You're almost done!! I'm sorry you've ben hit by serious fatigue. Try to get as much rest as you can, and hopefully it will be gone in a week or so.
Hugs,
Karen
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Hi, everyone. Just a quickie to say I finished rads today!! Yay! My skin started to burn a bit during my last 4 treatments, & they say I will get worse for a week or so, but I had a sinus infection disguised as a bad headcold, so my primary doc put me on an antibiotic so I'm finally feeling less tired!!!
My burning is not much so far, so I'll keep my fingers crossed.
Anyone needing a code to speak to insurance, you can get it from any of your doctor's offices. It's the ICD-9 code they're referring to, which is this big book of these darn codes they use in the insurance system. If I can hunt it up for you, I'll post it. But, boobytrapped (great screen name!!), do encourage your surgeon to help fight this battle for you. Your doctor's office should be in a much better position to contact the right people at United HC & know what to say.
I didn't see the med onc till after surgery as well, ditto what Karen said, because the med onc needs all the path results to make decisions about what you need after surgery.
Good luck to everyone at the start of this awful journey.
Kathi
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Thx KAK. I have my post-op appt today so we'll see what I find out. Congrats on finishing your rads ! Yeah....wish I were there too.
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Mammogram on Sept. 9; lumpectomy on Oct. 2 as well as sentinel lump node biopsy. Lump nodes were negative and my wonderful surgeon got clear margins. I do not wish those shots (preparation for lump node biopsy) in the boobs on anyone! I am a candidate for mammosite! I am concern about my sports bra and the caterer--I am a 38DD! We have a trip scheduled for the week of radiation but my doctor said that I could go (Universal Studios/Islands of Adventure). However, my husband thinks we need to cancel! What's a week! My insurance company is paying 100% the Ocontype DX test and my doctor is also going to have me take the BRAC test. My twin sister died of breast cancer in 1994 and my mother who is still living had it 6 years ago. The bright side, if there is one, is that I retired from teaching in May, 2008. I am so relieved that I don't have to worry about sub plans and my students! I have really gain some imperative information from all your posts!!!!!!!
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Kak,
You have United Healthcare! I have this and my secondary is Blue Cross Blue Shield of South Carolina. Did you have problems with UHC? I got back to the doctor Thursday and going to make sure that he has contacted the insurance, etc.
Thanks
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Hello all, just wanted to provide an update. Saw my BS yesterday she says I'm cancer free! Clear margins and the actual tumor removed was down to microscopic size (got most with the biopsy I guess). She wants to insert the ballon catheter on Thursday ! Yikes - I mentioned I hadn't even met my rad onc yet and she was suprised! Duh. Anway, she got on the phone immediately and made 8am appt this morning with my new rad onc. Met him today for looong appt and he seems very nice and knowledgable about Mammosite. The rad onc's office assures me my insurance covers the Mammosite, tho I think I'll call them to verify. If I get the balloon inserted tomorrow (Thurs) I have an appt to go on Fri for the similation and CT scan and then, if everything is good, I'll start rads on Monday 10/13. I'm starting to get a bit anxious about another incision and whether having a catheter sticking out of me for 10 days is really going to freak me out. Guess I'll just bite the bullet and stop whining and go for it. I definitely like 5 days as opposed to 5-6 weeks. I'll let you know how it goes. I'm definitely taking a pill before that appt tomorrow. LOL
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Gang,
Should I take a low-grade pain pill before my post-op tomorrow (in case he plans on taking out the staples (breast and underneath the arm)?
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Linda - I can't see that a pain pill would hurt any thing, but I always think that - LOL. I didn't have any staples with my lumpectomy but I remember several years ago when I had my hysterectomy I did have staples and getting them out wasn't a big deal. However, I don't think a tummy is anywhere near as sensitive as a boob and underarm. Good luck.
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I'm crosseyed from reading this whole thread, but I'm so glad it is here and you all are here! I was told that because I'm 43 (going to be 44 this month) that it was not a "responsible medical decision" for me to have Mammosite. BUT, I filled out all the paperwork for the NCI clinical trial, and............. I "randomized" into the Mammosite group! I'm sure that my age, which puts me on the fringe, gave me the edge to have the Mammosite... after all, that's a big reason for the trial -- to understand where they should draw the line in terms of age.
So I don't have the dummy from my lumpectomy, and I have not been able to connect with my surgeon who will be doing the insertion.... and I wanted to find out if the insertion is done under local or general -- and it seems there's some of both on this thread. The mammosite website doesn't reveal this... I guess because it varies.
My Oncotype came back at 18, so I'm just on the fringe of everything... no clear decisions... but I made the choice not to have chemo, and I'm making the choice to be in this study... and for the first time since my dx, I have a plan!
Tomorrow I will find out more.... but I wanted to say thanks to all who have come before me and taken the time to share their experiences with Mammosite.
All the best to all of you!
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LindaBusEd,
How did it go with the staple removal?
I don't actually have UHC, I have BCBS, but I work in healthcare so I deal with this crappola indirectly in my job. With your secondary insurance, hopefully, EVERYthing will get covered one way or another.
I do have a few codes, though, if this helps anyone. There are actually two sets of codes used for billings, etc. Like one set isn't enough!!!!! The ICD-9 codes are the ones that refer to diagnoses, treatments & surgeries, & everyone refers to them. There are also CPT codes, which I don't have access to -- CPT's are those five-digit codes on your bills & receipts. The ICD-9's have a decimal point in them, like xx.xx or xxx.x. Here are some relevant ICD-9 codes:
DCIS 233.0, Breast Cancer 174.9, Breast Mass/Lump 611.72, Breast Lumpectomy Procedure 85.21
If anybody needs other codes, I can scrounge some up.
We in the Rhode Island healthcare community pretty much hate United Healthcare. They are infamous for giving patients and clinicians a hard time. Their reimbursement rates are often pitiful & don't even cover the actual costs of care sometimes. A lot of doctors in various specialties won't even accept UHC in Rhode Island because it's so bad. They're a bit better in other states, but I'm never surprised to hear stories about them.
Shari, believe me, all this makes me crosseyed, too.
Good luck!
Kathi
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I was told today by rad oncology dept that they have contact UHC and they've approved my treatment. I asked this question 3 different ways and was assured my Mammosite is covered by UHC. Billing person I talked to said there were actually 13 different codes but I didn't get em from her. Here's hoping insurance does the right thing. - Karen
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Hey all, just back from having the balloon inserted. Wasn't near as bad I as worried it would be. I was a mess all morning freaking about it. But, all in all, it was defintely easier than the stereo biopsy.. I took anti-anxetiy meds b4 hand and that helped me alot. I'm home 2 hrs later and feeling fine....just wrapped up like a mummy. (New halloween costume?). CT scan and simulation tomorrow....rads start Monday. Soooo glad that's a holiday for me. Good luck to all going thru this. Let us all know how its going. - Karen
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Staples removed was a piece of cake compared to the shots for the SNB; He is letting me go to Orlando the 18-25; I go back to doctor on the 16th and will begin the Mammosite stuff when I return from Orlando (Fright Night here I come!!!!!!!!!!!!!!!)
My insurance is paying 100% for the ocontype dx test and doctor took blood for the BRAC test; I will get a call from the lab in regard to coverage and will be able to decline if the insurances((UHC & BCBS SC) do not pay sufficiently. I also have a cancer policy with ALFAC which I took out 10 years ago!
Good luck boobytrapped on the radiation!
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Linda & Karen, I'm really glad to hear your news. Hope things continue to go well! Kathi
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Hi Boobytrapped,
I finshed my 5 Day Treatment on the Mammosite last Wed. Did well but a bit tired. The next day I spiked a fever of 103 but it was my lymph glands and had to be drained but better now. The only problem I'm having now is some tenderness on my nipple. I see my Surgeon Next week which I LOVE him and also I will see my Radation Onologist Which I loved him as well. I will now have to see the Medical Ono. and been told I will have have Chemo just because of the size of the tumor then take Medicine for 5 Years! Anyway let me know if have any questions. I am a Nurse but Learning Lots!!
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PinkLaddy,
I will start Mammosite in 2 weeks. Haven't met my Radiation Oncologist yet. How long of chemo? I don't know yet if I have to have chemo.
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LindaBusEd,
I really don't know yet until I meet the Medical Oncolog. But my Surgeon and the Radiation Oncolog. both said because of the size of the tumor I will probably have to have Chemo. The Radiation Onc. did say it could be 3 to 7 months. I hope you know this was Early Detection. My last Mammogram was Nov. last year. Not even a year ago. It's amzing how fas something can grow. No Cancer in my Family at all. LindaBusEd, when was your surgery and what type if you don't mind??
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PinkLaddy,
I was diagnosed on 9/19 after my biopsy on 9/17. It was found on a mammogram on the 9/9. It had been 17 months since my last mammogram. Had my lumpectomy on 10/2. I am heading for Orlando with hubby, daughter, fiancee from 10/19-25. When I get back I will start treatment.My twin sister had bc in 1992 (passed 1994); mother had bc in 2002--she is now 74. My tumor was a little over 1 cm.
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LindaBusEd,
I'm so sorry to hear about your Sister. I had a tear myself. It's hard at times. I'm watching TV where here in Phoenix they are having the BIG Race for the Cure. I told my Husband I want to Particpate in it next year.
So I take it you will do the Mammosite? Do you have a Temporary Balloon in now? Have they said anything to you about Chemo?? My Radiation Onco. stated he was the Founder of this Treatment of the Mammosite and also using a New Balloon for the last 8 months. I guess the Ballon is a bit larger than it was so it was a tad more Painful but tickled to get it out.
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Pinkladdy,
Do not have the balloon yet? I assume he will do that after the 25th when I return from my trip. Don't know about chemo yet? My insurance is paying 100% of the ocontype test and I hope to get those results when I go back to the doctor on the 16th. Doctor took blood for the BRAC test; guess I will hear from the lab this week to let me know what the insurance is going to pay so I can go Linda
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Hi,
I've been catching up on everyone - haven't had much free time these last few days.
Kathi (KAK) - congratulations on finishing your rads. How are you doing? I hope the fatigue has lessened.
Karen (Boobytrapped) - I'll be thinking of you as you start your Mammosite radiation tomorrow. Mine wasn't bad at all - just tiring toward the end and into the following week. There was one other woman having her Mammosite the same week as I, and our appointments were always back-to-back. It was nice to have someone to talk to as we were waiting. I hope that will be true for you, too.
Linda (LindaBusEd) - I'm so sorry about your sister. That must make things even harder to deal with, at times. Would I be right to assume that you taught business ed? I retired the end of January and was diagnosed 6 weeks later, and I agree with you - I don't know how the ladies who have to work manage to get through it all. I've sent you a PM - we live close to Universal. I'm glad that your doctor OK'd your vacation!!
Shari1273 - have you found out more about your next steps? I think it's exciting that you are participating in a trial to see if Mammosite could be offered to women younger than 45. I have wondered what makes that the magical number?
Linda (Pinkladdy) - I wanted to participate in a walk, and have formed a team (Friends in Pink Helping Friends) to do the American Cancer Society's Making Strides Against Breast Cancer walk, which is next weekend in Orlando. The reason I chose that over the Susan G. Komen Race for the Cure, is that anyone can participate in Making Strides, but the Komen event charges a $25 registration fee, and I felt that might prevent some from participating. I'm really excited, and hope to be able to do this for many more years. I hope you are feeling better - next year you'll be able to walk, too.
I also want to tell you all about a seminar I attended yesterday in Tampa - it was sponsored by the H. Lee Moffitt Cancer Center's breast cancer team, and was awesome. There were various speakers in the morning and during lunch, and breakout workshops in the afternoon. It was so empowering to meet ladies who are long-term survivors, as well as to meet others like us who are fairly new to this. There were more than 650 attendees from Florida and Puerto Rico, even!!
Hoda Kutb of the Today Show was our keynote speaker - she is a bc survivor and gave an inspiring talk.
Hope everyone had a great weekend and will have a good week.
Hugs,
Karen
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I am sooooo bummed ! Had my 2nd CT scan this morning and was told everthing looked good and was supposed to start my 1st rad treatment this afternoon. Instead I just got a call from my rad onc who says I'm not a good candidate after all....too much fluid around the balloon and evidently the cavity is too big for a good fit. He didn't see it this am and only just now noticed on a different view. Crap. I've had this stoopid balloon for 4 days now I gotta go tomorrow to have it removed. Double crap. So much for planning. Oh well, guess I'll be doing the traditional 5-6 weeks after all. Thanks all for your support. Good luck to those starting /continuing their Mammosite treatments. - Karen
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(((((Karen)))))
I'm so sorry - that really stinks
But, please ask him whether you are a good candidate for the 3-week protocol that KAK (Kathi) just finished. She, too, couldn't do Mammosite. Please let us know how you are doing.Hugs,
Karen
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boobytrapped, I am so sorry!!!!!!!! I will go through the Mammosite stuff upon my return from Orlando. Keep us posted!!!!!!!!!!!!!!!!!!!!!!!!
Linda
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