Staging Questions (3c) & Wassup w/Zometa?

Twiceasnice · July 2010

Hello!

Glad to be back to the boards after a brief break. My question pertains to staging. I just don't have a good handle on what I am, and what the survival rates are after 5 years.

I was diagnosed with IDC in October, 09; tumor removed during lumpectomy, size about 2 cm, 4 of 18 sentinel nodes affected, ER/PR +, HER/2 neu positive.

I completed 6 rounds of TC(Herceptin) on April 15. Then had a mastectomy, and started radiation last week. I continue with Herceptin and also receive Zolodex. I'm 42 and in otherwise very good health.

My understanding is that I am stage 3C. In fact, just before starting radiation, I saw a resident, who said my Tumor was "T4." I queried why given its relatively small size. He said probably b/c there was lymphovascular involvement and a bit of skin involved.

Does the skin make it 3c? And, what exactly are the statistics on survival after 5 years? I've heard everything from 80% to 70% to recently 56% on some drug manufacturer's Web site.

I have friends who have taken Zometa and am wondering if I should ask my Dr. about taking it. He hasn't mentioned it. What are the advantages?

pupfoster1 · July 2010

Hi Gemini,

You bring up some good questions that some of the other women will be able to answer as I'm not sure about the skin. I am IIIc because of the size of the tumor and amount of nodes involved. I'm curious what the others say as my onc hadn't mentioned Zometa either.

Best to you!

Sharon

pupfoster1 · July 2010

Hi Gemini,

You bring up some good questions that some of the other women will be able to answer as I'm not sure about the skin. I am IIIc because of the size of the tumor and amount of nodes involved. I'm curious what the others say as my onc hadn't mentioned Zometa either.

Best to you!

Sharon

YATCOMW · July 2010

Gemini....

I am stage IIIC but I had all kinds of things pointing there.....17 nodes.....8 cm tumor.....in the skin....yada yada....

I am over six years out and doing fine. Took tons of chemo.....on femara.....and yes zometa. I would definitely not be shy in asking for it......lots of promising data...

Fists Up.

Jacqueline

clariceak · July 2010

When I originally was dxed last fall I asked my onc about Zometa. She said there wasn't enough info, but has since changed her mind and I began in June. I also have crappy bones so I was able to easily obtain a prescription.

Apparently it is optimal to have it with chemo so the newly dxed ladies should be inquiring now.

paml · July 2010

I am considered 3B because of a small bit of skin involvement. I had 2 nodes positive and tumor was 5.5 centimeters. At first they said I was 3A. Not so sure about this staging thing. Everyone seems different

chrishat · July 2010

hi,

i think that oncs don't necessarily bring up zometa because it isn't standard of care yet...i had to bring it up with mine, but once i did he agreed that it was a good idea and prescribed it...there is LOTS of promising data, enough that my insurance (blue cross anthem) covered it 100% even though i don't have osteoporosis or ostopenia. i am getting it IV every 6 months. it seems to lessen the likelihood that breast cancer will spread to the bones, although they aren't sure through what mechanism yet. i talk to people all the time whose doctors haven't brought it up, but when the patient brings it up, the doctors prescribe it. good luck!

Flamin_nora · July 2010

Lot's of good info here on the board...suggest you follow the thread "Zometa, anyone". Take the info you find there (studies, etc) and make your case with your oncologist. That's what I did, and am VERY happy I did. My second treatment is next week

Here is a recent posting I made there:

Flamin_nora wrote:

so I have my regular 3 month oncology appointment yesterday....I reminded my oncologist that soon I would be having my second Zometa treatment, and slipped in that I was very thankful for him to agree to prescribe it....to my big surprise, my oncologist responded: I'm VERY happy too that you are having this treatment!!!! (my oncologist is a man of few words----I couldn't believe how happy he was about this)

just 6 months ago I felt that I really had to put the pressure on him to prescribe this treatment---did I miss something? Is there even more evidence as to the effectiveness of this treatment????

Twiceasnice · July 2010

Thanks everyone for the informative and insightful replies re: Zometa and my staging questions. I will definitely bring up the Zometa question in August when I see my oncologist again. I completed chemo April 15, and am currently taking Herceptin until the end of the year. From what I've read, it's best to take Zometa with chemo? but there is also an oral/pill form. Will check out the Zometa thread to make sure I have all my facts before going in. Thanks again--and best of luck to everyone here.

lago · July 2010

I've read that skin involvement might have something to do with staging but I wouldn't focus too much on the statistics. Much of what is online is old information… statistics taken from cases prior to 1998 (American Cancer Society stats are from that time and I see the same stats repeated on other sites). So much has been done since then. New drugs, better ways to treat, etc. Even in the last 5 years there have been new developments. Even staging isn't an exact science.

There are cancers that go into remission for years even decades. Don't assume you are going to be the worst case. Many people survive. Why not think it's going to be you? There are plenty of folks that are stage III and really respond well to chemo.

BTW I don't know what stage yet. I am still waiting for a surgery date. I'm assuming I'll at least be a stage IIB if there is no node involvement but even if not I could still be a IIIA due to size of tumor etc.

Twiceasnice · September 2010

Just thought I'd post a quick update after I saw my oncologist. I asked about Zometa and he agreed it was a good issue to raise.

Apparently the FDA is on the verge of approving the use of Zometa; he suggests I wait since insurance my not cover it otherwise. I'm going to bring it up in my next meeting. I'm a little bummed. I learned today I've graduated to the "follow up" clinic; I think that means I'll only see my doc a few times a year, and the remainder of the time will see the nurse practitioner who is highly competent but still :-(

Thanks!

clariceak · September 2010

geminihalf - have you had a bone scan? It's possible that insurance would cover it to prevent further bone loss.

lkc · September 2010

Hi Gemini. Zometa is FDA approved for Osteopenia so Insurnace will pay for this.

get a bone density test to determine your status.

Zometa is a bisphosphonate that not only pretects the bones form dev. mets, but has an overall inhibitory event on visceral ( organ ) mets.

I am another 3c er and swear by it.

Twiceasnice · September 2010

That is really helpful thanks! I wonder why my doctor said that I should wait until FDA approval comes through (wonder if he meant FDA approval for breast cancer?)Apparently that's supposed to happen in the near future otherwise my understanding was insurance would have a hard time paying for it.

So I get the bone density test, that says if I have osteopenia and then I can get the Zometa?

I asked for a bone density test and they told me to put it off until after radiation is over (it just ended this week). I see them in October so I have to wait 'til then to re-address. Thanks for shedding some light on this for me.

chrishat · September 2010

hi geminihalf,

my onc didn't think zometa would be covered by my insurance, since i don't have ostopenia, but we tried and it WAS covered, 100%, twice now. (am doing it every six months.) i have blue cross. the person in the billing dept at the onc office said she just put in the code for breast cancer when getting the pre-authorization, and it worked. so you might give it a try!

chrishat · September 2010

p.s i had a normal bone density test, and the zometa was still covered. might depend on your insurance of course. i think the FDA is on the verge of approving zometa for use in women who don't have stage iv, as a preventative...they just haven't yet. it's already approved for stage iv use. anyway good luck! it's a good feeling to know we're doing every single thing we can.

christine

AnacortesGirl · September 2010

Similiar situation for me. Had a normal bone scan. The pharmacist called my ins. (Regence Blue Shield) and got this run around about not needed pre-approval for Zometa but when asked if they would pay for it they wouldn't say yes or no. Pharmacist's experience is that big ins companies are so segmented in their processing that they don't put two and two together (that this was being prescribed to tx non-stage IV BC) so she recommended that we give it a try. They paid it. I had them do the infusion over 30 min instead of 15 and never had any of the flu-like side effects.

lorieg · September 2010

Just curious if anyone can tell me how they are getting their Zometa covered? Osteopenia/porosis? I am stage IV b/c of one darn lymph node. I have been told no way is my insurance company going to pay for zometa. I am only 33 and lucky me even after no period for over 2 years (breastfeeding and chemo), and being white and very thin (risk factors for thin bones) my dexa scan did not even show a smidge of osteopenia. Errrrrr, the one test I actually passed and it stinks!

oooops, just read through the above threads.

Thanks, Lori

KerryMac · September 2010

Lori - I know some people have used early menopause as a reason. I don't know if you are on an AI or not, but there was a trial (Zo-fast I think) that showed upfront use of Zometa prevented bone loss, rather than waiting for it to happen. That angle might work. Good luck!

Pure · September 2010

I get zometa and insurance covers it. I also got zometa every 3 weeks with taxol. This is not standard but my doc was following the zofast study. Insurance covered it.. I didn't ask her what she wrote on my orders but I had no issue getting it. I also told her if they didn't cover it I would pay for it out of pocket. An additional 37% percent reduction is risk is worth every penny.Also, they are about to abrove another new drug similar to zometa but better and it's given via a shot. They don't know long term affects of it yet though so my oncologist is a bit concerned about that so we are staying on zometa right now....

AnacortesGirl · September 2010

Lori,

A couple of questions. Did you try talking to your insurance company yourself? If the doc office tried and failed then I'd call them personally and find out more details and what the appeal process is. The other thing is have you checked the NCI website for trials with bisphosphonates and stage IV? Could be a trial out there that would get you the drug.

DATO · September 2010

I was in the clinical trial on biphosphonates in 2006. By chance I was put into the Zometa arm of the trial. I had my regular 6 month check-up with my oncologist a couple of weeks ago. She said that they are finding more and more good thnigs about Zometa and while it isn't yet the standard of care that she looks for any excuse to prescribe it. I would definitely ask my oncologist for it.

Twiceasnice · September 2010

Thanks for the informative replies! I see my onc on Oct 7. My impression is they want to wait until Zometa is approved by the FDA for non Stage IV patients, which, based on their feedback, could be imminent. I think I'm going to ask about getting a bone density test as so many of you have suggested, and try and get the ostopenia diagnosis until the FDA weighs in.

Not sure why my doc would want to wait since I (we) know that other docs are looking for any excuse to prescribe it. I am currently taking Herceptin every 3 weeks until Dec 31, 2010, maybe they don't want the 2 to mix? Zometa is only taken like every 6 months though, right?

Thanks again (and check out my blog www.thebigcandme.com)

ktn · September 2010

After chemo/radiation I did receive Zometa every 3 months for 5 times. Then I had a bone scan showing my bones were = to someone in my 30's and I'm 51! Probably as a result of the zometa because I'm not religious about taking my calcium! Soooo...my onc put a halt to the zometa since she was afraid i would have to pay out of pocket which could be up to $2000.00. She plans to have me get a repeat bone scan this fall and if the results are lower, reorder the zometa. What games we play!!

Staging Questions (3c) & Wassup w/Zometa?

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