Calling all TNs

Rebecca, wow, what a story you have. I've been PM'ing with Hawkvand and have written my MO at MD Anderson to try to get them to look at her pathology (she was all set to get a second opinion there pre-Covid). I specifically inquired about adding Carboplatin at the end of Taxol.

I have always known that it was possible to get breast cancer post-mastectomy because they can't remove all our breast tissue. But they remove the ducts, and it blows my mind to think of ductal cancer growing without ducts.

Hawkvand, there are some around here who might call me an "over-treater," but in your case I'd fight to do radiation. I had no choice because the tumor was growing into the nipple, but for me it was the easiest part of treatment, by far.

Rebecca, I am sure you miss your sister every day, but she would be so proud of you for how you fought this. It thrills me to know you ended up with an MO who is your hero.

thanks for the positive thoughts. I feel very lucky and humbled that everyone has been so amazingly helpful. I never thought strangers would care so much. I’m waiting on Stanford to call me back to set up a telehealth consult for a second opinion/chart review and hoping beesy can work some magic with MD. I tried again today and got nowhere again. I’m glad you mentioned having ns vs full mastectomy. I’m on the fence about it still.

I hope I can be as helpful and supportive to others in the future as you have all been to me.

When I was first diagnosed, I was not in the frame of mind to read much (I knew quite a bit about breast cancer because my mother had it in the late 90's and read voraciously then). Once I was about to start chemo, I found this site searching for methods to reduce neuropathy with Taxotere because I had a friend years ago who had terrible problems with Taxol. I learned about the practice of icing and a whole lot more! I never did participate during chemo, but boy did I read! I read the Triple Positive thread from beginning to end one night when I could not sleep because of steroids. Rebecca, I always think it's worth mentioning things like the nipple sparing mastectomy stats for those who might be reading this in the future--you just don't know who it might help. One day, a woman who can't sleep might bump into this and think to question her PS who is insisting on sparing nipples.

I haven't heard back from my MO yet, but I'm hopeful and will let you know as soon as I do!

Hi there ... hello from Debra! Sending you all love, Hi Adagio, Sylvia, Peggy Sull, LuvtheDobies, Forward66, and ALHusband, BanR, and many others, and the new members.

Much love and healthy vibes ... tons of prayers and warm hugs, even when not posting often. Always in my heart.

XOXO,

Debra

Hello Debra,

You are someone I shall never forget.You were such a regular poster.It was so good to hear from you.

I was glad to know all is well with you.

I am nearing 15 years since diagnosis and have been fine.

I have also been eating 100 percent dark chocolate for many years.

Keep well

Love

Sylvia xxx

Haha, I did a zoom exercise class today and had a small struggle finding a place to put my camera that looked really neat in the background!

santa, - I understand COMPLETELY!

adagio, - thanks, - i'll try it!

VL22 I am so happy for you!! Cheers!!

Happy Birthday and 3 year mark, VL22!

HolaGirl, I had my physical chest and arm pit exam today along with blood work, everything was good, and it was such a relief to me also. I'm TN also and I too didnt realize how emotional I would be. All this mental crap wears me down...lol here is to better days

It's so nice to have this site with people who totally get it. I was wondering of anyone that's survived had lymphovascular invasion. My initial biopsy showed none but after my mastectomy, which was march 24th, it showed it. I had clear margins, negative lymph nodes and tumor went from 2.5 cm to 0.6 mm. I have been trying not to focus on a reaccurance or metastasis but it's hard. My PET scan prior was clean but I know that doesn't predict the future. I have a friend who passed a year ago at age 45 from TNBC that metastasized to her lungs and brain so I'm very nervous. Thank you all, you are all amazing survivors..and to you just starting best of luck.

Thank you Santabarbarin for your reply. I did not have complete PCR but my tumor went from 3cm to 0.6 mm so it was almost gone. They said it was a good response. I have been exercising and focusing on eating better.

Question, do you get yearly PET scans? I would like to just to be safe but my Dr says they will only do it of I have symptoms. If I have symptoms I feel it's too late. Just wonder what others do.

I truly appreciate your understanding. It's nice to talk to others who have been through it and understand. Best of luck to you for continued health.

Hi ladies - I'm a 10+ year survivor of TNBC. My oncologist always told me that it's front loaded so if it's coming back, I'll do so in the first few years. Also, keep in mind chemo is very effective for TN because the cells are fast growing. All the best!

Hi TN's, I just got back from my Onco apt for my 6 month checkup and he said that everything is fine except for my while blood count. He said it's low a 3.7 and wants me to get back to him if something changes. I asked like what do I watch for and didn't get a good answer. I wanted to know specifics. He said that with strong chemo I was given, leukemia could happen.off guard I looked up WBC and it talks about Luekopenia. now I can't remember if it was Leukopenia or Leukemia bc I was off guard. We get chemo to rid cancer and have the chance of getting another kind of cancer. My question to you all is, is there anyone that has gone through something like this? If so, what did your Dr. have you do? What would you know for peace of mind ? Now that I am thinking, I may want to have my blood work retested. I could swear that this has happened in the past or at one of my apts and my WBC came back fine. I think it's the way he said it or I'm just concerned for nothing. He also said that bc I am an anxious person he doesn't want me to worry, which is a total contradiction bc I am supposed to be very concern, right!??

Meow, sorry for this blood count worry. I got to 6 months past chemo, things had been fine, and then my blood counts were all messed up, too. I'd had a very bad cold, and then another cold a couple weeks later, fell and hit my head. That's when they did the blood tests and found things were amiss. But then I had my regular, annual exam with PCP a month later, regular blood tests with that, and everything was okay again.

SO, I'd say don't worry too much about it for now. Ask your doc if you can have follow-up blood tests in, say, 3 months. Until then, just focus on doing your basic healthy things -- good quality, balanced diet, regular exercise, good sleep.