Calling all TNs

VerukaNY

hey Carolina- please post and share what info you can from your consult with dr. Carey. Am interested to know what she thinks.

Adarkad- you were not given a choice and had to do neoadjuvant with a <1cm tumor? Where were you treated? I was told neoadjuvant was reserved for 2cm + last year when diagnosed.

So interesting how protocols differ depending on where you are treated and from what I can tell, geographic region of the us!

6feetover

VerukaNY: Hi there! I haven't yet had surgery, only a myriad of horrid biopsies. The biopsied area in my left breast that turned out to be malignant was itself <1cm, but the surrounding area, containing high-risk, "suspicious" tissue is/was actually around 3 cm. Because that area's not been surgically removed, my onco doc based her decision on the mass in its entirety. There's also lymph node involvement. I've got high-risk masses in my other breast, as well, and a strong family history of recurrent, pre-menopausal triple-negative breast cancer. I'm being treated at Yale-New Haven's Smilow Cancer Hospital; the team told me that they're throwing the "gold standard" at me because of the TN and the family history. I'm also in the midst of more comprehensive genetic testing (beyond BRCA1 and BRCA2)...

lovelifeBR

Good Luck to you. I know exactly how you feel. Hang in there!

lovelifeBR

@adarkadaptedi: Good Luck to you. I'm glad they are throwing the gold standard at you. Stay strong!!

6feetover

lovelifeBR: Thank you! I'm working on it! This all just suuuuuuuuuuuucks...

Round 4 (last round, woo-hoo!) of the "big guns" next Tuesday, then a two-week break, then the next chemo installment, i.e., weekly Taxol (plus probably carboplatin) for 12 weeks. Yaaaaaaaaaay.

lovelifeBR

@adarkadapte: We are meeting with the oncologist next week and I am ready to get on with the POA. It will be a long journey, but totally worth it in the end. My anxiety level is a little high right now to say the least!

bluedog

Hi, all. I don't think I've delurked on this thread yet. Thank you all for the very helpful info!

I'm TN and have been doing neoadjuvant chemo. 4 dose dense AC then 12 weekly Taxol. Had my 11th taxol yesterday. One more left!!!

My tumor responded hugely to the AC. Shrank significantly after the first treatment and continued to shrink over the next treatments. May have continued to shrink with the Taxol, but I don't know as now it just feels like a "thickening," rather than a well-defined lump. Had ultrasound after 2nd AC, surgeon confirmed shrinkage, and we confirmed plan for lumpectomy in mid-September. BUT, my MO had casually mentioned genetic testing after BC treatment to see if I should have ovaries removed. It occurred to me a few weeks ago that maybe I shouldn't wait on that testing, as if I'm positive maybe I should have a prophylactic BMX??? So, I talked to the MO, and he ordered it. But my insurance co. says I have to have genetic counseling before they will run the test. I'm sure this will all unfold and I will eventually get the test and more eventually the results. But, times a wasting . . . . Why didn't the MO or BS order the test earlier?????

Yes, this suuuuuuuuuuks!

ALHusband

Bluedog my wife's MO (AND the second opinion MO at a top cancer center) both recommended immediate genetic testing. I'm not sure I've ever heard of one wanting to wait on that. I'd be interested in hearing his/her reasoning since some treatment decisions may take the results into account. Agreed it's not something you need to jump in an ambulance and rush someplace to do...but I can't imagine an MO wanting to wait any considerable length of time.

relocatedtarheel

Carolina-i was given the choice and felt like I didn't choose wisely. I chose surgery first and ended up with complications that postponed my Chemo by 3 months. Since I had no issues of any kind before it never dawned on me that I would have complications.

StefLove

adark, ahhhh the good old gold standard! when I was first prescribed my chemo I was only going to get dose dense AC and dose dense taxol. Then my MO presented my case to a cancer board and it was unanimous. I'm too young for this crud (I'm 34) so gold standard it is! 4 AC, 12 taxols with 4 carboplatins thrown in for good measure.

So far so good with treatment. I just finished taxol #6 and have already had 2 carbos. My blood counts hate me but I'm glad I'm going this route knowing that we're doing everything we can.

Good luck with the next round

bluedog

ALHusband, thanks for responding. I'll share what the MO says.

6feetover

StefLove: Thank you! Good luck in your journey, as well!

eileenpg

Luvmydobies= I have been away for a while. Super busy selling my house and moving my son. Anyway, I travel every 6 months to see my MD's in another state which I use to live in. So,you don;t need to give them up.

Welcome to all new comers on the board. Sorry you are here but,it is a wealth of great information and support.

Alhusband=Again I say "I LOVE YOU" Hope you are enjoying your red couch.

In 2 weeks my one year mammo. Had one at 6 months now another six months have passed. Keeping my fingers crossed all looks good. I feel great!!!

FYI= I lost 22 pounds that I gained during chemo. Took 3 months.

Teka

Wish I could lose poundage!

wendeeB

I'll be with you through your mammo, as everyone was with me. Thank goodness mine was all clear. I have another follow up in 6 more months. I really relied on the prayers and wishes from here as I was waiting on the results. I literally felt as though I would puke I was so nervous.

told the radiologist that the anxiety prior to this was enough to have me considering bmx!

happy Sunday to all. I'm busy prepping my meals, and bags of veggies for juicing for the week. xoxo

Meadow

Today is my 2 year cancerversary....2 years since diagnosis with triple neg IBC. Thank you to the wonderful ladies..and men of course, who give support on this board. You all help me stay positive. which is so very important. Feeling blessed.

Teka

Meadow,

Meadow

Teka, thanks for the card!

JAN69

Doing happy dance, Meadow.

slv58

Meadow, Yipeeeee! I'm so happy to hear this, hope your celebrating!

,

Bunnybumps

Yay Meadow! You are an inspiration!

Meadow

Thank you so much ladies, Jan, slv, Bunny

relocatedtarheel

yay Meadow!!!#

eileenpg

Meadow= Yeah you!!! I love you!!

SA8PG

Meadow hip hip hooray!!!! Congratulations & thank you for continuing to share your journey with us.

Have a wonderful week. 😊

Xoxo

G

ALHusband

Gosh I'd love to know for sure which date is the most "significant" of the "versaries". Is it date of diagnosis? Date of removal/surgery? Date of chemo completion? When they say 5 year survival...which of those dates to they go by? I know in the big scheme of things it probably doesn't matter and we should celebrate them all...I get that. But I'm not sure that even multiple doctors would give you the same answer if you asked them all. Anybody have any insight?

StefLove

AL, I've heard different thoughts about this so I'm not even sure! I've heard it's date of diagnosis, date of removal, or date of chemo completion. but then again theres radiation too. So I'm not really helping this discussion but I'm just as confused as you are!

Msmath

AL I have been wondering the same thing. I am just 3 weeks post chemo and thankfully I do not need radiation. I am heading to my MO on Friday and this will be one of questions. They had said at one of my appointments I was technically cancer free after my BMX back on January 30th. It would be nice to go by that date instead of my chemo completion of July 27th. I will be sure to ask.

Meadow

Thank you so much relocated and SA8! Thank you eileen, love you too!

Al, I never know which is the significant date to recognize in our recovery...I think both the diagnosis date and the end of treatment when I first got the all clear NED news, are dates that hold significance, at least to me. I had been diagnosed 2 years ago in August, then that following January after chemo, then surgery, my path report came back clean. So I was NED before I completed rads which ended in April. So I am seeing this August as a milestone, 2 years since diagnosis, and I will party equally hard (lol, sure!) in Jan as I will then declare, "2 years NED!". Is this how everyone else thinks?

anotherNYCGirl

Just as long as it's NED, it's a happy date!

Keep posting those wonderful updates Meadow! and everyone else, too!