TRIPLE POSITIVE GROUP

P.S.

Does anyone else feel funny addressing people by their online names when we are talking about breast cancer? LOL. I'm Carolyn and it's nice to meet you...:)

SpecialK. THANK YOU! Your note is extremely helpful to me and for others currently undergoing neoadjuvant therapy for HER2 positive DX. I understand much better the whys of the decisions for testing prior to surgery, pathology,and what to insist upon. Significant reduction in anxiety level! Your clipboard is super charged with stress reducing pixie dust. Most sincerely appreciated.

Hello all. This is my first post ever on any site. Although I have read numerous posts like this before I never imagined joining in. However I find myself more desperate than ever for answers but unable to get them from medical professionals. I myself am a nurse and am used to being able to have answers. I was diagnosed with triple positivebreast cancer at 29. I had just celebrated my 1 year wedding anniversary and was looking forward to starting a family. Fast forward almost 3 years later after 6 TCHP treatments, surgery, radiation, and almost 2 years of tamoxifen I find myself frustrated, scared, and anxious to conceive. I stopped my tamoxifen 5 months ago and have been trying to conceive the last 2 months with no success. I know it takes time to get pregnant but time is not in my favor. I have only been given a short window to conceivebefore needing to start more aggressive options to get pregnant. Here's the kicker chemo killed a lot of my eggs and no one knows exactly what to expect because of the lack of research. So I find myself here looking for answers from people who may have been through my current situation. I am looking for hope because I am struggling to find it on my own. Desperately wanting to be a mommy..........

Robin - Her2 FISH testing has four possible results, 1) amplified, 2) not amplified, 3) equivocal, or 4) indeterminate. To reach an amplified result your ratio must be greater than 2. Since your ratio is 2.65 your result would be considered amplified, thus positive. The OncotypeDx would not be ordered with an amplified FISH result because Oncotype is not set up to test known Her2+ patients, it is a test designed for ER+, Her2- patients. Reflex testing is testing that is ordered due to the result of a previous test. In your case this comment is meant that Oncotype would not be ordered as a "reflex" test due to the positive result of your FISH and the size of your tumor. Your tumor is of standardized treatable size for a Her2+ tumor, meaning that all 1cm tumors that are Her2+ are suggested to have chemo and targeted therapy (Herceptin). Oncotype Dx would not be done since its purpose is to determine whether chemo is necessary or recommended so the test is unnecessary because the standard of care is to treat.

robin - sorry - going off your sig line for the tumor size. OncotypeDx would still not be ordered since the test is not designed for Her2+ tumors, of any size. What is the treatment recommendation for you from your MO?

SpecialK, thank you so much for all the helpful info! I didn't completely understand all the testing numbers etc so your explanation helps. I'm in neoadjuvant therapy with Suburbs; so much information and surgery decisions to make! My BS follows the same protocol as yours i.e. pathology would be done on both breasts in addition to SNB. My MO also said pathology is the only way to accurately confirm cancer cells as imaging cannot pick up every cell. I have an MRI on both breasts every 3 months and tumors/enhancements are not visible. I never had any abnormalities in the right but they still do MRI to monitor and confirm no changes. My MO has been very clear that while the MRIs indicate the HP treatments have shrunk the tumors in the left, surgery is still the only way to confirm pCR. My husband is still asking why I need surgery if MRI isn't showing tumors, so my MO explained the concept several times.

Suburbs, I'm surprised at some of the responses you're getting to your questions. I'm finding each medical team/cancer center has their own philosophy on treatment. The first hospital I went to was very standard of care and when pressed for other treatment options and/or stats, their reply was "there are no other options". I went for a second opinion and found a cancer center that offers individualized treatment with the utmost concern for maintaining quality of life. Keep pressing for answers until you feel confident in what is being offered.

I had a Mammaprint done before I started treatment, which is a test to determine risk of recurrence and whether early stage BC patients would benefit from chemo. My results were low risk, 93% cure with HP and hormone therapy and no chemo. My test was paid for by cancer center. I was not offered this test at the first hospital I went to so I'm not sure if it is standard or if you have to request it onyour own.

bbwbc55, deni1661, and poseygirl, thank you for your feedback and advice.I'll double check on the pathology of the good side and make sure that gets done. I could have misheard that point.

Specials, I reread your note and will add asking about SnB on good side. Doesn't hurt to ask.

HI all,

Thought I would post my wonderful news today. There is no cancer in my body at the moment. After this past year I am in a state of disbelieve but beyond relieved for the time being. This board has been such tremendous help threw some of my worst moments.

I have decided to color the little hair I have (all gray) with organic products tomorrow and try to start life again...:)

kattis - yay!

Katiis congrats! jb 134 congrats too!

love my MO. I have just been feeling off since December. I talked to her about it, she wants me to take a 2 to 3 week break from tamoxifen to see if I feel better. If I don't, we may add effexor...anyone taken effexor? If I do feel better, we may switch to an AI. Staying on lupron, she said it's a bad idea to take a break from lupron?

She is also doing a thyroid panel and checking for vitamin deficiency and estradial. Let's see...

I just want to feel better. I've been "punky" since December...I'm also the heaviest I've ever been... :-)

Kattis -yay yay yay!!!

Wonderful news Kattis, I am so happy for you! Your news is inspiring for us all thanks for sharing.

jb134 congrats, great news for you too!

Maybe off topic....I have two implants, nearly two years post-surgery and I feel like I can find stretch bras to place over them, like I used to use a bra, and really tight sports bras that I can't wear for very long because it feels like the implants are pushing into my rib cage. Braletts don't have enough "cup". I'd love to have the implants pushed more to the center, rather than the sides. What bothers me most is at night when I sleep on my back I feel like they slide to the sides. Now I know that they don't really slide but one foob looks like the saline does move to the outside when I lay down.

Any recommendations?

Oh dear. I haven't seen much discussion of this question. So, if one does TCHP and then has surgery and the must continue with Herceptin and possibly radiation, how does this impact tissue expanders and exchange surgery? Do the fills happen while Herceptin or radiation happens? Is everything on hold until the two therapies are complete? Does exchange have to wait until Herceptin is done? Yikes. My head is spinning.

I wonder if we need to do a TCHP surgery group thread? The monthly chemo and surgery threads just don't exactly address all the triple positive twists.

Hmm, some women have the expanders put in with BMX; some start reconstruction after radiation. I had my lumpectomy (early January), then waited a bit to resume Herceptin and start Aromasin/Zoladex (late February). I began radiation in March.

I think the big problem with doing expanders with the BMX is that radiation can cause problems. Some plastic surgeons won't start reconstruction until after radiation is completed. Herceptin isn't really the issue. But, hopefully, some reconstructed ladies can chime in!