Calling all TNs

Hi, Warrior2016, I'm sorry that you're here and that you've had such a tough time of it. It can be challenging to always have to present a brave face so it will be good to have a place to come when you're feeling strong, but also when you're down or fearful. Love the bra burning!

Regarding the tight chest, did you get tissue expanders or is the sensation from the mastectomy surgery alone?

Lyn

I had that test done too, Cathy. Mine was 20%, I think.

My Ki67 was 95% at diagnosis in my triple negative side, but chemo brought it down to 37% at the time of my BMX. My breast surgeon told me that if you don't get PCR from your chemo, (which I didn't) then reducing your Ki67 by a good amount is the next best thing. I would have rather had both!

Trish

Hi everyone. I was diagnosed with triple negative March 15^th and started chemo March 28^th. I am half way through chemo. I get treatment every 3 weeks; Taxotere-Adriamycin-Cytoxan.

I am trying to decide on lumpectomy (sounds horrible because of radiation – every day for 6 weeks?), mastectomy on left breast (only place with cancer) or double mastectomy. I keep thinking I want the double because I don't want to go through this again but of course am terrified about cancer coming back anyway since there is no friggin reason explaining why I have it in the first place.

I am afraid to know too much (don't want to freak out) and don't understand all the acronyms people use on this site.

Can anyone help with questions I should ask to help with my decision? Oncologist thinks lumpectomy, plastic surgeon thinks mastectomy with lift on the right and reconstruction on the left, other surgeon (I see him in July right before my chemo ends). They are all men so having a hard time.

I just wish I could have new boobs and be past all the pain :-)

BEX1966....PM me and I can give you some supportive help and answers.

Bex- I struggled with the decision of lumpectomy vs. mastectomy, too, but you may need to just put that decision off for awhile. I was just about deciding on the lumpectomy when my second tumor appeared and then the doctor recommended a mastectomy. My right breast was healthy but I chose a double mastectomy mostly because I have a friend who has a prosthetic on one side and she said her life has been miserable - exercise classes and swimming are uncomfortable for her because she feels so lopsided. I think the question you should be pondering is how you feel about your breasts. Do you think you can emotionally live without them? Explore your feelings and then let time and the results of your chemo finalize your decision.

Lyn, (VLH), I did not have reconstruction. I decided to go flat - I am 65 years old and did not want to spend anymore time with surgeries or procedures. I want to be free to enjoy life. NYCG, my boobs did things like dancing merrily at the May Day protests in Washington, D.C. - most of the time I was topless. Eventually I grew up and became a responsible professional, had children, and nursed them. So, my boobs had a great life and it was their time to go. I don't miss them because to me they represented cancer.

Cathytoo, I am so with you with the errant cell. I visualize one little cell riding through my bloodstream (like on a water slide) yelling "WooHoo, where should I land?" I've got to keep laughing.

Hi, I am new here. Wishing everyone the best and my heart goes out to all of you!

Cathytoo. My ki67 is 90%. My tumor was fast growing. Went to bed one day without it and it was large enough the next morning that I felt it when I pulled my knees up, hitting my breast.

My surgeon never commented on the ki67, my oncologist said it doesn't mean much and my genetic counselor said those tumors are usually always killed off fast by chemo. Let's hope so since I had surgery first! I had a rush biopsy after finding the lump and never got the hormone status until after excision. I only knew it was a high Grade 3 tumor. Surgeon asked me If I wanted chemo first and I said no. I just wanted the tumor out. It was at the tail end of my breast, close to the underarm.

Hi everyone.

I was 42 and 1/2 when I was diagnosed in oct 2016. I'm not really new at this site since I've been reading your posts throughout my treatments. Went for routine mammography (dense breasts and some cysts - had done one before in 2013) and ultrasound but to tell you the truth I had noticed something different in my left breast but was so vague I didn't gave it attention. It was in the ultrasound the doctor found what seemed a 18 mm mass. I was so lucky she had time to proceed with the biopsy at that moment and some days later I had the diagnosis: - TN, grade 3,Ki67 53,8%. MRI showed it actually was bigger (25 mm). Genetic testing was negative.

I was horrified specially when doctors told me I had to start with chemotherapy. But most of all I trusted my doctors. They said: it is true that this is an aggressive tumor, with worst prognosis in the past, more (and more precocious) distant metastasis... but on the other hand it responded much better to chemotherapy and in the last years since they had become more aggressive in the treatment the responses became much better. They also told me this was a disease that can be cured.

So I held on to that, placed a port and started chemotherapy 28/10/2016 (AC 4 cycles - every 3 weeks, followed by Paclitaxel 12 weeks), wanting to stay positive but thinking the worst. I bought a wig and hats but ended up not using them. I used a cold cap during treatments and kept most (ok - 50% perhaps) of my hair. I had some nausea, constipation (with ondasetron) and gained weight. With taxol I got some new pains, abdominal cramps during perfusions and also painful nails, muscles and joints (still have but are getting better). At the end of chemo I repeated MRI and the tumor had shrunk so much that it looked like a complete radiological remission...

Had a lumpectomy this monday and had my results today - complete pathological response. So today is one of the happiest days of my life. I am healing well. Still have radiotherapy ahead, but today I don't care. I know there is still a long way in front of me and lots of things can go wrong. But they also can go wright!

When I was diagnosed I read and read posts trying to find messages that would give me hope and that's why I wrote this.

scm12, I'm sooo very happy for you! I bet a great weight has been lifted from your shoulders

SCM!

we only know that it is a complete pathological response after the surgeon has taken the lump ("quadrant"). In my case the doctor that did the biopsies in october left a metal clip in the place she had biopsied. I did the chemo and repetead MRI. Because the mass had shinkred the surgeon was afraid of not identifying correctly the tumor and i had an "harpoon" placed next to the clip bedore going to the OR. And after taking what she thought was adequate they had a first look at it while I was still in the OR to make sure the margins were clear of disease

To you who have had a path report, did you all get a Ki67 score? I did not receive one in my path report and all my care has been with a large teaching hospital!

I was told (and I read about it later) it is related to the speed of malignant cells division (and growth). My Ki67 was 53,8% and II was scared at first but then i saw that the range is enormous. Some of us have 5% and others 100%... The higher the number the more aggressive might be the tumor but on the other hand the better it responds to chemotherapy. It is just additional information. The value doesn't change the treatment (at least in triple negative) and has no prognostic value so far.

Warrior,

What is your clinical trial? Would love to hear more about it!

Janet

Janet and Tridh,

It's a trial based in Indiana for triple negative breast cancer. They do genomic profiling on your tumor and then they have, I believe, 15 drugs that you can be matched to that are believed to be targeted to why your tumor grows. The drugs are not new; it is the methodology that is being tried. If I match to a drug I could still be put in the control group which gets the standard of care - Xeloda. If they find no match for me I would also get Xeloda. Right now I am getting some tests done - just blood and heart tests and then I wait for the news of what they found.