Soooo, I'm new around here...

minky1225

Hey ladies and some gents! I've been lurking for a few days and finally have the gumption to type it out....I have breast cancer. I have been in awe and inspired by all of you and glad that I have a large sorority of sisters in this with me! Wish we could meet over a few cocktails instead of this forum!!!!

Although I feel like I have learned so much about breast cancer in the past few weeks(while waiting for my results), I still have so much I need to know.

Here's a little about me... I am 30 years old and have always been cystic. My mother has stage IV ovarian cancer which the docs are now going to make me a great candidate to take the BRCA 1&2 tests. I have a 2cm tumor in the left breast. I am ER-/PR-/HER2+. I don't know the grade or the stage yet. I have my first consultation at Sloan Kettering this Friday... I've had my moments, but overall....I am in great spirits! I tell my husband that I am ready to kick some butt!(but that's not my exact words:) ) 

I also am HER2/PEC ratio positive at 5.9-can anyone tell me what this means????? Google has not been helpful with this one!

I would love to hear from you! Please send me your thoughts, advice, stories, and some hugs:) I will do the same! Oh, and thank you all for giving me support over this week and not even knowing it!

lovetosail

Hi Minky,

Sorry to hear of your dx.  What's your treatment plan - or do you have one in place yet - Given your age and HER2 status, I assume chemo+Herceptin, what type of surgery are you considering?  You'll get great care at SK!

I was dx 2 years ago - did uni-mastectomy + recon, TCHx6, and a year of Herceptin.  I was 8 months after the last herceptin, and on tamoxifen, when I had a localized recurrence to the mastecomy breast.  Now I'm facing 35 radiation treatments and another year of Herceptin - but at least it looks like no distant recurrence!

good luck with treatments and hope you get lots of support here!

minky1225

Thank you for the response Lovetosail! I do not know my treatment plan yet. I am highly considering a double mastectomy since I have 8 benign tumors in the right and the malignancy on the left. I do not have children and am hoping that I will be able to when this is all said and done!

SpecialK

minky - hello and welcome, sorry you find yourself here.  About your question regarding the pec ratio -basically, everything I found indicated that the ratio does not matter - as my BS says "positive is positive" - if you had an unclear result with your initial Her2 testing, they would do an IHC, which gives the number of +'s.  If you are Her2+ you will likely be advised to receive Herceptin, along with chemo, so the degree of positivity is not material.  I would consent to the BRCA testing.  I am adopted, so I had blood drawn on the day I was diagnosed to determine my status.  At that time I was considering a lumpectomy, a positive BRCA result would have changed that to BMX.  Even though I was negative I ended up doing a BMX anyway - I too have always been cystic and could not live with waiting for the other shoe to drop.  Once I made that decision I was actually more relaxed.  It was the right choice as post-op pathology showed IDC and DCIS on the right and ADH and ALH on the left.  I had already had a complete hysterectomy 10 years earlier, so didn't need to worry about that part even if I was BRCA positive. Glad you are ready to kick some $%* - that is the right attitude! Once you find out what regimen is recommended join a thread here that matches up - it is nice to have those ladies to consult with on specific questions. I also joined a group that began chemo in the same month - we were each other's best cheerleaders.  Several recommendations when you go to SK for your consult -  ask about any programs they have for young patients like yourself that want to have children after treatment, they may advise you regarding egg storage or fertility treatment, not sure.  Also, have arm measurements taken prior to surgery.  This is for later comparison should you develop any swelling/lymphedema problems down the road.  Anyone having surgery involving lymph nodes, either a sentinel node biopsy or complete axillary node dissection, is at risk for this.  Many surgeons don't do the "before" measurements so if you were to have swelling later, it can be problematic to document.  Treatment for that requires referrals, and sometimes prescriptions, so it is good to be prepared.  If you have questions, ask away.  Best to you! 

minky1225

Thank you for all of the info, Special K! I am now starting a list of the questions that I have to start asking the doc and I put the arm measurement on there too. You ladies are my saving grace!

SpecialK

minky - you are welcome.  Again, if you think of anything post it here or PM me.

lkc

Hi Minky, Just wanted to let you know I am " out" over 6yrs from a nasty Stage III BC, er/pr neg, HER2 positive Dx.  and  am NED .

You will get there!