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Triple Negative Breast Cancer

catdogvet
Posts: 3
Joined: Apr 2012

Is there anyone who has been diagnosed and treated for Triple Negative Breast Cancer (TNBC)? I am about to finish up 10 months of treatment and I have not yet one woman in my community with this type of cancer. Just curious to speak with another TNBC survivor.

Thanks!

jessiesmom1's picture
jessiesmom1
Posts: 708
Joined: Jun 2010

Love your screen name. You can see by the photo next to my screen name what is important in my life. Welcome.

I was diagnosed with TNBC in 12/2009; Stage IIa, Grade 3. I had a right mastectomy with a tissue expander inserted in 2/2010. Next came a port and then 16 rounds of chemo - 4 rounds of A/C and 12 rounds of Taxotere. No radiation. I had my implant exchange surgery in 6/2011 and revision-reconstruction surgery in 12/2011. I am in remission and currently doing pretty well if I do say so myself. There are a number of women on this site who have TNBC who I am sure will respond to your post. We have a wealth of knowledge we can share. It is always good to be able to communicate with someone who has been there and done that.

IRENE

catdogvet
Posts: 3
Joined: Apr 2012

Love the picture of your doggie. Have owned two Golden Retrievers myself - they are wonderful dogs.

I was diagnosed with stage Grade 2, stage ?? not sure (no lymph node involvement). I was told TNBC is very aggressive and had chemo right away. I was fortunate to become enrolled in a study where I received the same chemo regimen you did plus Avastin and Carboplatin. It knocked my on my butt, however it did work because the pathologist who examine the tissue removed from my lumpectomy could not find a trace of cancer. So, I feel fortunate. Still had to have 5 weeks of radiation. I'm finishing week 4 and feel great.

I worry about recurrence since it is higher with TNBC, although I have heard once you get past the four year mark the odds of this happening drop dramatically. What is your understanding?

Thanks for your reply.

Ruth

jessiesmom1's picture
jessiesmom1
Posts: 708
Joined: Jun 2010

I had an atypical presentation of breast cancer. No cancer was EVER found in my breast tissue. I did, however, have grossly enlarged right axillary lymph nodes. I had to have a Tissue of Origin test run before the pathologist(s) was able to determine that I had breast cancer as opposed to some other type of cancer. Further testing on the tissue sample showed that it was triple negative. I almost was diagnosed as Cancer with an Unknown Primary (CUP). Since there was no tumor to irradiate, radiation therapy was not on the menu for me - just the axillary dissection, mastectomy and lots of chemo. It is my understanding that TNBC responds well to chemo. Once we hit the magic 5 year mark then I believe that our chances of a recurrence are the same as that of any other person with breast cancer. I am banking on that. My last chemo infusion was in Aug. 2010 so I have quite some time to go. I really do not dwell on the chances of recurrence. My husband and I have 2 children in college who, believe it or not, still need me - or at least my sage advice and checkbook. TODAY I have no evidence of disease. That is what counts.

IRENE

P.S. My mother's name is Ruth.

catdogvet
Posts: 3
Joined: Apr 2012

Irene:

Wow, that is an interesting presentation. It's great to hear you are doing so well - you're almost 2 years out!

My mother's name was Ruth and I am named after her:) Small world.

Ruth

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

I was diagnosed the first of this year with Triple Neg BC with a KI 67 of 73%. I had Adriamycin and Cytoxan every other week for 8 weeks. Now, I am on the 5th week of weekly Taxol. My tumor can no longer be felt or even seen on sonogram. :-) But, I still have 7 more weeks of Taxol, rest, surgery, rest, then 6 weeks of 5 day/wk chem to go.

There are quite a few triple negs on here, and I'm sure you'll be hearing from them.

Good luck to you!

Angie

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

I am not triple negative but wanted to welcome you and to wish you good luck.

Hugs, Angie

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

I was diagnosed a little over a year ago. Stage 2 with 2 lymnph nodes involved. I am glad to hear you had no lymph nodes involved. It must have been caught early.
Do you have high blood pressure? If so you may want to speak to your doctor about a beta blocker called Propranalol. It is one of the old blood pressure medicines and has been shown to inhibit metasisizing of TNBC. My blood pressure was fairly good after my normal med but not down to it's previous level so I had them put me on it.
I am currently feeling well enough to ride my bike several miles per day. I tell you this because you need to see light at the end of the tunnel.

midnight10
Posts: 74
Joined: Sep 2010

I too am TN. Diagnosed the very end of July 2010, biopsied two days after I was forced to put my 14 year old border collie down. I was stage 2b, grade 3 (I guess because they biopsied lymph nodes and three of them were positive at that time. I had 4 A/C chemos and 4 Taxols, 5 wk break then bilateral masectomy with 7 of 15 lymph nodes removed positive and tissue expanders for reconstruction put in. About 2 months later I had 30 radiation treatments and in September final reconstruction surgery. Since then I have had two infections near the implant on the radiated (cancer) side...Knowing what I now know I would not have changed anything in my treatment plan, but I would not have done reconstruction. PS says if I get another infection I'll be on antibotics for life. I've also had some minor swelling in the arm where the lymph nodes were removed, but the surgeon says not to worry about it unless my wrist and hand start to swell. I question that because I'm small boned and even an extra inch of swelling makes my arm sore, but I'm not the doctor.
I go in for a check up with the oncologist next Wed and am a little anxious about that, but I think that's normal.
Oh, I'm now owned by a sweet and sassy one year old border collie who loves everyone! She was my mother's gift to me to celebrate completing chemo, the first surgery and radiation.
I don't post often, but check in to see how others are doing frequently.
Take Care.

Hubby's picture
Hubby
Posts: 325
Joined: Apr 2010

Two year cancerversary today. Stage 1; Grade 3; trip negative. Her oncologist has her on Tamoxifen because he says the guidelines will be changing, and those with only a tiny positive reading (even though not enough to be classified as positive) will be recommended for Tamoxifen.

joannstar
Posts: 346
Joined: Nov 2010

I was diagnosed 7/10 and had my second lumpectomy (to get clear margins) on 8/19/10--stage 1, high grade, no lymph nodes. I had 4 rounds of taxotere/cytoxan and 2 rounds of taxol/cytoxan (due to ankles swelling). Then 33 rads which I finished 4/1/11. I started to feel almost normal around 2/1/12 and am doing well. No further treatment other than quarterly checkups and mamos every 6 months. I did have to have a biopsy 9/11, but thank God it was negative. I'm looking forward to my 2 year mark that I'll be celebrating on 8/19 because that was the day when the cancer was totally removed (I asked my MO and that's what he said).
Unfortunately, there are many of us on this board...I wish it wasn't so. Doesn't seem as rare as they say.
Good luck,
Hugs,
JoAnn

linpsu's picture
linpsu
Posts: 725
Joined: Mar 2010

Welcome to this site - there are a number of us TNBC'ers here.
I was originally diagnosed in 2/08 with DCIS, but TN. I had a mastectomy, but dr's. didn't think that chemo or radiation were warranted. I had reconstruction with an expander put in at time of mastectomy and then implant put in a few months later. On 2/10, I had a recurrence along the site of the mastectomy scar. This time I had chemo immediately (dose-dense; 4 A/C, the 4 Taxol, every 2 weeks). Then I had another mastectomy on same breast to remove the implant and lots more tissue, plus 14 more nodes (4 were taken with original surgery). One node was positive, and I then had 7 weeks of daily radiation. I've been feeling good, but of course I think about the possibility of another recurrence.
Let us know if we can help you with any questions about TNBC.
Hugs,
Linda

linpsu's picture
linpsu
Posts: 725
Joined: Mar 2010

Welcome to this site - there are a number of us TNBC'ers here.
I was originally diagnosed in 2/08 with DCIS, but TN. I had a mastectomy, but dr's. didn't think that chemo or radiation were warranted. I had reconstruction with an expander put in at time of mastectomy and then implant put in a few months later. On 2/10, I had a recurrence along the site of the mastectomy scar. This time I had chemo immediately (dose-dense; 4 A/C, the 4 Taxol, every 2 weeks). Then I had another mastectomy on same breast to remove the implant and lots more tissue, plus 14 more nodes (4 were taken with original surgery). One node was positive, and I then had 7 weeks of daily radiation. I've been feeling good, but of course I think about the possibility of another recurrence.
Let us know if we can help you with any questions about TNBC.
Hugs,
Linda

sweetvickid's picture
sweetvickid
Posts: 436
Joined: Nov 2009

Diagnosed in Nov 2009. Had 8 rounds of chemo, double mastectomy then 10 more rounds of chemo. I was a stage 3 with lymph node involvement.chemo was rough but I finished up 1/31/2011 so I am a little bit over a year out. I am finally starting to feel better. Got lymhedema and neuropathy to deal with now.

Chawana
Posts: 1
Joined: Mar 2012

I was diagnosed on March 5, 2012 stage 1 grade 3. I had a lumpectomy with 3 lymph nodes removed on March 28, 2012 and will start 4 rounds of chemo treatments (Taxotere and Cytoxan) on April 26, 2012 and will be recieving 6 weeks of radiation.

JoAnn4818's picture
JoAnn4818
Posts: 81
Joined: Jan 2011

I was diagnosed with tnbc in September 2010. I was stage II grade 3. Like a lot of us I had 4 a/c and 4 taxol dense dose. It'll be one year since the end of treatments on April 27! My hair is back - brown instead of blond, my fingernails, eyelashes and most other things are back to normal. I just have checkups every 3 months. I had headaches so I had an MRI done. It looks a little suspicious so a brain surgeon wants me to have another one in 2 months for comparison. I hope that all will be well. Other than that I feel pretty good. I hope all goes well with you. I'll be thinking of you and wishing you all the best.

JoAnn

ksf56's picture
ksf56
Posts: 203
Joined: Apr 2012

It really helps to hear of other people with Triple Negative. I am not alone and neither are you. I was diagnosed last June and life has changed dramatically to say the least. I had 16 chemos and 33 radiation treatments. I'm here as a survivor and exercising, eating well and I'm going to be cancer free if I have anything to say about it! We're all fighters and knowing you're among people that have been there, helps keep you strong.

Hang in there! Lots of prayers for you!
Karen

kimbie66
Posts: 2
Joined: Apr 2012

Diagnosed 3/11/12 with ibc, stageIII, triple negative. Double mastectomy on 3/27/12 with immediate reconstruction. Recovering nicely from surgery. Will start chemo TC 6 rounds every 3 weeks on Monday. Will need radiation 33 treatments due to large 7cm mass and unclear margins. Also getting my first fill in the tissue expanders on Monday. Any knowledge on pros/cons of TC( taxotere/cytoxin) versus AC? Due to heart damage from a heart attack 4 years ago, I was told no Adrymicin for me. Really concerned about the margins not being clear after mastectomy....

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