Triple negative breast cancer with metastasis: Want to talk to others

I was diagnosed 4-22-16 with triple negative, 1 lymph node postive. Single Mastectomy 5-31 and I am now going thru round 5 of chemo on 8-31-16 and start 12 weeks in a row after 4 rounds of Doxirubicon.

Welcome to Connect @californiagirl. Glad you found this group with @cosette @kimlofdahl @fundytide and others. We look forward to getting to know more about you. How are you doing on chemo? What side effects are you having to manage?

I was dxed w/ triple neg breast ca, grade III in Nov. 2004. I had the lumpectomy the same month, followed by chemo, then RT. I was tired for at least a year and ended up shortening my work week from 40 hours to 30 hours permanently. I remember the brain fog. Chemo recovery takes a while. Keep in mind that chemo knocks out healthy cells as well as malignant ones. The healthy cells recover, but it takes time. Your fatigue is unpleasant (to but it no strong get than that) but normal.

Don't remember having GI problems, at least not any worse than I already had them. The good news: it's 2016 and I'm cancer free in that breast. The bad news: once you have had cancer in one breast you have a higher risk of developing cancer in the other breast which is what happened to me. In 2013 I was dxed with a stage I, estrogen+ breast cancer, grade II, in my other breast. I had a lumpectomy and RT for that and so far, so good, no recurrence.

I'm taking oral chemo which is much better that the two other kinds I took which made me feel like I had been run over by a truck. The side effects for all these drugs suck but bear in mind that your oncology team has rolled out the VERY heavy artillery to ensure your survival. With time, the side effects, while extremely difficult to tolerate now, will eventually disappear or at least lessen. Also bear in mind that if you feel lousy, imagine how the cancer cells are feeling!

Triple negative is survivable. Don't let anyone tell you differently. I'm 12 years out from my triple neg, grade III dx.

Welcome to Connect, @berit. Thank you so much for sharing your story here. It's so helpful to hear from others who have been there!

Hello to all,

I am new to this site, and am trying to figure out the chronological order of posts. I see that there are posts from 2012, with responses from 2016. So, please bear with me while I get acquainted.

In October 2011, I was diagnosed with Stage 1cN0M0 grade 3 triple negative breast cancer of the left breast. My sentinel node biopsy was negative, and my treatment regimen consisted of a lumpectomy, followed by brachytherapy radiation, and then 4 rounds of Taxotere/Cytoxan. I remained disease free until this year. After receiving injections of Prolia, for osteoporosis, I began having pain in my hips and thighs (bone) in fall 2015. When I saw my Oncologist for my 6-month routine exam in June 2016, he ordered a PET/CT scan to rule out bone mets. The PET/CT scan was negative for bone mets, which we've decided was a side effect from the Prolia, but it did show 5 FDG highlighted lymph nodes - 1 small axillary node, 3 subpectoral nodes, and 1 subcarinal node (right hilar area). The largest subpectoral node biopsy confirmed grade 3 TNBC in July 2016. There was much discussion regarding the one subcarinal/hilar node ~ whether to attempt biopsy to confirm malignancy vs a false positive (inflammation) of the node per PET/CT scan, but it was determined that it would be too aggressive to get to the node to biopsy. But, because they are assuming this subcarinal/hilar node is malignant, they have staged me at 4, because it is on the opposite side of the other nodes, and the breast where my original breast cancer was. So, my official diagnosis is Stage IV Regionally Metastatic Recurrent Triple Negative Breast Cancer.

A clinical trial was discussed, but my Oncologist wanted me to be available for radiation immediately following chemotherapy, so we decided on 4 rounds of Adriamycin/Cytoxan, which began in August. I had my last (hopefully) of 4 rounds on November 2nd. On November 18th, I will have a PET/CT scan to see if the AC has worked, and implement a plan from there. I trust and like my Medical Oncologist, but have decided that I would like to get a 2nd opinion from a respected Breast Oncology program, and have scheduled an appointment at the Jacksonville Mayo Clinic in December. I feel like I have nothing to lose, and everything to gain at this point in time.

As a retired nurse (Pediatrics), I am great at researching and understanding much of the jargon, study outcomes, and journal articles that I have read. In the past 5 years, I feel like I've become a reluctant expert when it comes to TNBC. Stage 4 is extremely frightening, and since it is TNBC, even more so. It seems that much less research time and funding goes towards metastatic breast cancer, but when it's a recurrent metastatic breast cancer, even less. I'm looking forward to reading more stories on this web site. And, I hope to learn from each and every person.

Best wishes to all.

Janice

Welcome Janice.
Indeed this discussion group of women with triple negative breast cancer was started in 2012 and reactivated in 2016. I'd like to introduce you to fellow triple negative members @kimlofdahl @cosette @terrianne @fundytide @berit and @californiagirl.

No doubt leap frogging from stage 1 to stage 4 TNBC is shocking and frightening. You might appreciate watching this video with Dr. Victor Pizzitola and the breast imaging team as they lead a tour of Mayo Clinic's breast cancer imaging center in Jacksonville, FL http://mayocl.in/2fQLfAS The staff there are so welcoming, knowledgeable and work with state of the art equipment.

Janice, does the current protocol of chemo followed by radiation lower your eligibility for clinical trials? Were you looking at a specific clinical trial?

Wow! What a nightmare, Janice. Your story was sounding like mine until it jumped from triple negative, stage I to stage IV. You are doing EXACTLY what I would have recommended, getting a 2nd opinion. You can't do better then Mayo, and you can DEFINITELY do worse. I was dxed with stage I, triple negative, grade III in my L breast in 2004 and was cancer free (after lumpectomy, chemo and RT) until 2013 when I got a 2nd cancer (stage I, ER+, grade II) in my R breast. Don't you love how this damned disease won't let you alone?

I must say, a jump from stage I with no positive nodes to stage IV sounds like a BIG jump to me. I'm not a doc, but I was an oncology social worker for many years so you do get a sense of the usual way things go. I think you are very smart to get a 2nd opinion. It's you LIFE! You owe it to yourself to leave no stone unturned. No good doc will be offended by your getting a second opinion. if s/he does, you don't have a good doc - drop s/he IMMEDIATELY for someone better!

My thoughts are with you. And I'm sure everyone else's are too. Keep us updated, please.
Berit

<p>I’m looking for someone to discuss stage 4 metastasis to the lungs.</p>

Hi @cwm1, I'd like to tag fellow Connect members @marinak and @emmae have mentioned triple negative breast cancer in the past and may be able to offer you support.

Have you discussed treatment options at this time?

@ethanmcconkey, I have had TNBC IN 2016/17. Now it appears to be back in lung Mets.. I should talk to the oncologist tomorrow, if not, I’ll send her a massage thru the portal. Then we can get started on a treatment plan.