TRIPLE POSITIVE GROUP

lago

rleepac Just an FYI. Ashkenazi Jews have a slightly higher risk of having the BRCA gene but given your history you are even higher risk for the gene.You may test negative but there still might be some other gene that they haven't discovered yet that puts you at higher risk. So glad you have a good team now.

windgirl

I was told by an MO that her2+ was not genetic so she said my tumor could not have been caused by that (a at least with the genes they know now) but she still wanted me to get the full panel gene test to see if I have high risk to develop another tumor due to genes. Mine came negative but I have family history so will always wonder if I have a gene they have not yet identified that causes her2 positive cancers

lago

windgirl seems more BRCA is triple positive but not sure if that's true in all cases.

Mamadewbs

Hello everyone! I am a new triple positive gal. I was so happy to find this board. I have so many questions! I started TCHP on December 31, 2014. I have completed 2 treatments now but I am having extremely heavy periods that have been going on for almost 3 weeks now. My onc is talking about starting Zoladex at my next appointment. I read somewhere that it can interfere with the effectiveness of chemo though. Does anyone know about this

rleepac

I only know that the genetic counselor seemed to think I was high risk (thanks Dad!). She ordered the BRCA1 and BRCA2 with a reflex to an additional 20 genes if the BRCA's were negative just to see if it is some obscure gene or if there is any overlap of other types of cancer. Mostly, they are a research hospital so they eat this stuff up. LoL.

I don't recall her saying anything about the triple positive being a factor though. Hard to remember when I talked to so many people about a variety of things. My take-away was: 1) You're high risk for a genetic link to breast and ovarian cancer and 2) You'll probably have to have your ovaries out too regardless of the genetic results. Why do the genetic testing if that's the end results? Primarily for my siblings and daughter and secondarily to see if they need to tweak the treatment at all based on the genetic testing. Made sense to me.

We talked for an hour and that was the gist of it. All I know is that I feel like I'm in good hands and I slept better last night than I have in the past 3 weeks! This feels manageable now

chrissie29

Windgirl-I had that same full panel and had a variation of unknown signficance with MRE11A.  Did anyone have the big genetic screen and have any variations?

goutlaw

Looks like alot of new ppl came aboard !!! I just did weight loss surgery Jan 26-2015!!!! Next is reconstruction....Then I hope Im done with surgeries lool

lago

Mamadewbs welcome. Hang in there. It can be a bumpy road. No I haven't heard that about Zoladex. I suggest you do a google search. If you find an article bring it in to your MO and discuss it.

SpecialK

mamadewbs - here is a blurb about Zoladex and chemo:

"If being used as adjuvant treatment for early breast cancer, the Zoladex is usually started after all chemotherapy and radiotherapy has been completed. This is because hormonal manipulation may interfere with the effectiveness of chemotherapy and radiotherapy, and clinical trials have shown that this is the best sequence."

Zoladex is actually also used to preserve ovarian function during chemo for young women who want to preserve fertility.

Has your MO discussed any hesitation regarding sequence, or do you think this is the lesser of two evils?

Mamadewbs

Thank you so much for responding! That is pretty much the same information I found. I'm not really sure where her head is about it. I live about 3 hours away from where I receive treatment and I just haven't a chance to really talk with her about it. The last thing she said was that I couldn't go on menstruating like I am and expect my labs to be ok for treatment. I am definitely not trying to preserve ovary function! I have 3 children and knew we were finished before this whole mess began. I am just so nervous about making bad decisions now that could effect my health later. Doctors know a lot but I know they don't know everything. This process has really proven that over and over again

Mamadewbs

Thank u lago! I feel like I know all of you! I have been reading on this board for a while but never had the courage to post. I just feel so lost in all this sometimes

formydaughter

mamdewbs - hang in there. Treatment is tough. But it puts many people into chemopause. This is what they tend to expect. Not sure why menstruating would interfere with their ability to give chemo - if you find out, please share. I hope that you have a good support network to drive you to your treatment center - 3 hrs is a long way!! Thinking of you.

SpecialK

formydaughter - heavy menses might be problematic during chemo because of the possibility of anemia from the heavy bleeding combined with the blood cell damage from chemo. Delay or cancellation of treatments is a greater possibility.

formydaughter

Special K - thank you for the answer.

windgirl

I will ask the MO again but I am pretty sure that's what she said about HER2 positive not being linked to BRCA or any of the other genes on the full panel (which is what I was tested for). She works at a comprehensive cancer center and is actually working on the gene research so I would trust what she says on this. My actual MO or BS did not mention this as maybe they are not as involved or knowledgeable on this topic as her

rleepac

I did a little research on the HER2 positive and BRCA and it looks like BRCA1 is only linked to HER2 negative but BRCA2 has been shown to be linked to HER2 positive. I'm not a geneticist of course and I'm sure there are many other papers that might say something different. This was just the one study I had time to read today.

Marlene18

chrissie29, I had the BROCA genetic testing which looks at over 40 genes and had no variations. My twin sister and I were both diagnosed under age 40 (she is not HER2 positive though), with no prior family history. Sounds environmental to me...

chrissie29

Marlene-the genetics info is interesting.  I think in a few short years now that insurance is paying for this genetic testing, more things will be identified to correlate to specific breast cancer risk. 

Chrissie

chrissie29

Anyone have a recommendation for a good bra for use with expanders and implants that doesn't compress the lymph channels?

Chrissie

 

knmtwins

chrissie - every PS is different, mine just wants me in a cami while doing TEs. I'm purchasing the cheapest comfortable ones I can find, and they are from Walmart. 95% cotton 5% spandex. Not that they hold anything, but having that slight tightness from that little amount of spandex makes me feel better. I haven't asked about my options once I get implants. http://www.walmart.com/ip/Faded-Glory-Women-s-Knit-Cami-2-Pack/37906321 BTW if you go to the store, make sure it is the 95% cotton one. They also have ones that have a higher polyester or spandex content, which is what the sales person showed me. For me, a chemopause hot flasher, I don't think that would be comfortable. So I politely ditched the sales person and hunted for these.

knmtwins

mommadew - What does your gyn say about these heavy periods. I'd think your MO would be consulting with them and maybe want a pelvic and an internal ultrasound to check everything. But, just what 'I'd think'; I know nothing as my periods stopped on TCHP, although I might have had the 1st. BTW - 3 kids and chemo... yep, my twins just turned 10 and I have a 7 year old. I accepted that this next year, year and a half, were for healing mommy so I could be around the next 30+ years, it is helping with the guilt of missing every practice and game last fall. Remember what they say on airplanes, put the oxygen mask over your face, THEN over your child's. I keep repeating that when guilt comes, as well as 'breast cancer is a marathon, not a sprint'. It helps me, as I am a control freak, and having to turn this over to doctors has been hard on me. Thank God for these message boards.

Mamadewbs

Formydaughter- special k is right on with what my doctor said about the heavy periods. Sorry I didn't make that more clear!

Knmtwins- my kiddos are 16, 12 & 2. I have only been on this journey since November and I have missed more than I ever have in their whole lives! I expected my periods to stop as well but so far I do everything a little differently than their typical patients. I have had 2 treatments and I still have quite a bit of hair and a very heavy period. My doctor said both would be long gone by a few days after my 2nd treatment. It kind of worries me really! Does that mean it's not working?

CassieCat

Mamadews, I spotted through my first two treatments, so while not heavy, something was still going on in there. It eventually stopped. I had a lot of hair left at my second treatment. If you didn't know what I was going through, you couldn't have told by my hair. But it had started shedding by then and felt uncomfortable. I buzzed it short a few days later. Never did lose every last bit of hair, but it got very sparse. Has yours started shedding at all?

My hemoglobin dropped after the first treatment and never really rebounded to normal levels through it all, so it makes sense to watch for heavy menstrual bleeding.

Mamadewbs

CassieCat- yes my hair is much thinner but I still have quite a bit left! I buzzed mine very short as well when the shedding began. Everyone keeps telling me it's cute but I'm not comfortable going out without a scarf or hat. I feel anything but cute right now! I am still reluctant to start the zoladex until I finish chemo. I just don't want anything to interfere with the effectiveness

lago

I just wore a cami with expanders. I would wear bras with wide straps with Lymphedema. Ended up my bras don't cause an issue with my LE. But for a while I would wear bras with wide seamless sides that prevent back fat like this: linky

SpecialK

I found that Genie bras worked well, but had to buy a size larger than I would have thought for them not to feel tight.  You can get them at Bed, Bath & Beyond and use their 20% off coupons, even expired ones.

formydaughter

I bought sports bras at Walmart , of all places, that hooked up the front. I bought them big and wore them post BMX and through TE and exchange. I tried a few others, but found these to be the most comfortable. They laundered easily and held up as well

Moonflwr912

i wore my camis from Amoena. I got 2 from the P'S after sx. I wore them for a year during chemo and some reconstruction. They have pockets for a poof that you can add or remove fluff to adjust size up or down. They were a blessing in the beginning as you can step into them! They are not cheap around $50 but work and hold up well. I actually bought 2 more, one in nude and another in black. I am still wearing them daily and they are still working for me after 2 years. I dont need the puffs anymore but they are so comfortable.

Moonflwr912

I can't seem to link. Go Google Amoena Michelle camisol. You should find Amoena US. It's product 2105.

They no longer sell it on the Amoena site with the inserts. But it's on sale on Metro Medical for 39$. That includes the 2 puff and drain pouches.

chrissie29

Thanks ladies for all of the bra recommendations.  It is nice to have a starting place when I go shopping.

Chrissie