Triple Negative Oncology Specialist ? Experience

I agree to find someone at a major cancer center - any oncologist that specializes in breast cancer should be up to date about triple negative cases (we hope!)

My oncologist told me that triple neg cases are more likely to have mets in places such as the lungs, liver, bones. Not so likely to return to the breast tissue apparently... my radiation oncologist said if it comes back to the chest wall (after mastectomy) "it's a mess" and so I opted for the lumpectomy. I have had lymphedema in the breast ever since (fluid build up) and so I sometimes wish I had the mast. after all.

It's a complicated decision, so I thought I'd let you know what my doctors have said. I think CalGal gave great advice, too. Good luck, I hope you have peace of mind whatever you decide.

Hi Northsea,
Sorry to hear about your diagnosis.
I am also Triple Negative and BRCA 1+. Because of that, I had a bi-mast, chemo and will have a hysterectomy as soon as possible. Hopefully, in October.
I wish you the best of luck.
Traci
ps CalGal, how are you doing??

Hello Northsea - and welcome!
Like CalGal, I do not want to alarm you unduly, but even a tiny triple negative tumor, node negative, deserves your respect. My sister had a 3mm. IDC tumor, clear nodes. She did what was advised by two oncologists and surgeons - lumpectomy (clear margins) and rads. In nine months it had metasticized to her brain, bone and liver.
Now, she was much younger (29 at diagnosis) and younger women are known to have more aggressive tumours, and we are a BRCA-1+ family. Nontheless, when she finished her radiation, she was told to go home and live her life and expect to be 85. She never saw 35.
When my triple neg. cancer (node neg.) was diagnosed at 49, I asked for the most aggressive chemotherapy I could get. My bilat. mastectomy and reconstruction should be occuring in a matter of weeks. I'll also be having an oophorectomy due to my BRCA-1 status (probably not an issue for you). I have certainly done what I could to find oncologists who specialized in triple neg. or BRCA-1 cancers and have had no success whatsoever.

My personal opinion is that chemo is the only weapon we have against triple negative breast cancer. You do not say what grade yours is, but many are Gr 3, even at Stage 1. My belief is to hit it hard when it first rears its ugly head, Why wait util it is a stage IV and terminal?
However, if yours is Gr. I and non-aggressive and given your age, your docs may very well strongly advise radiation only.
It's such a crapshoot. You mostly have to go with your gut.
Good luck with your decisions and do keep us updated with your progress.

Lisa

Northsea,

Is there any chance your cancer is hereditary? If you have been tested positive for hereditary OR negative but you have close relatives with similar disease, I would get bilateral mastectomy. (Bear in mind that if you're interested in reconstruction, you may not want to do radiation).

I have the brca1 hereditary mutation. First bc was right breast (small) in 1996. Had a lumpectomy, clear margin, chemo & radiation. Developed 2nd primary on left breast (small) in 1999. Had a lumpectomy, clear margin, chemo & radiation. Developed another BC back on the right breast in 2003, this time multi tumors but both small. At this time I wasn't playing anymore games.. bilateral mastectomy! I had chemo following mastectomy. Than I was dx with mets to lungs in 2006.

Had I done bilateral mastectomy in 1996, I would have spared the toxic surgery & chemo in 1999 & 2003, and I believe mets would have developed at much later date IF it develops at all. Somehow I believed that I could have been cured after getting 1 breast cancer. But getting 3 breast cancers is like tempting the fate.

But this scenario is more likely to happen if you have the mutation. Your case does not sound like a hereditary mutation.

Unfortunately, I can't give you recommendation for oncologist either. Like many of the ladies here said, none of us have found a "triple-negative" oncologist yet. However, there are breast oncologists. If you are in the New York area MKSCC (Memorial Sloan Kettering Cancer Center) is probably a good bet.

Good luck!

I had a 2cm triple negative tumor in the upper outer quadrant of my right breast. I was 62 years old, which is a little unusual for triple neg. It usually happens to premenopausal women, but not always. I too was in otherwise great health, and did lots of research. My hubby is a doc, and he also did some research as my tumor was in the apocrine gland, and that is fairly rare. There is no tx protocol for it, so standard care is given. You didn't say where the 1mm margin is, but mine was at the chest wall. I had a "lumpectomy" because even with mastectomy I would still need rads because of that margin. It wasn't possible to do more surgery without going into the chest wall, and that creates more problems.

Negative nodes do not mean there is no micromet somewhere, and you are correct, it can spread by vascular invasion. Do you have a copy of your path report? It should tell you if there was any vascular spread seen. I had neg snb with no visible vascular invasion. I had 6 months of chemo, and seven weeks of rads to address the possibility of micro mets anywhere in the body. This month is the one year anniversary of the end of my tx, and so far I'm NED. Sloan is good, of course, but there are many good hospitals in NY and Long Island. I'd get the medical and radiation oncs opinions before I made the surgery decision, just so I'd have a whole tx plan.

Good luck to you, and it's all doable though it feels daunting at first.  

Indi,

I am so sorry you are still feeling bad..........

So sorry.......

Hugs to you....

Traci

There are no stupid questions, you are right to ask anything that's on your mind. The pathologist looks at all the tissue removed at the time of surgery, and runs tests on it to determine specifics about the tumor. That's how you find out if you have hormone receptors or not, and about Her 2 status. Path report should also state whether or not vascular invasion could be seen. Our oncs use the path report to plan tx, and you could still ask for copy and have it explained to you. In spite of clear nodes and no sign of lymph or blood invasion, it is not possible to know if some tiny cell has escaped so they give us chemo to address possibility of distant mets, and rads to address local recurrence in the breast. Sometimes chemo is given before surgery to shrink a large tumor, but my 2cm didn't warrant that. There are some other things on the path report that tell oncs more about the tumor, and they put it all together into a tx plan. Sometimes I still come up with a question for my onc, even though I finished tx a year ago! 

My mom was diagnosed triple negative in March.  The cancer was very small and could barely be seen on an ultrasound; however, it had spread to 10 of 11 lymph nodes.  She had a lumpectamy and has had 4 rounds of AC.  Her cancer count actually went up after the AC. Next Tuesday she is scheduled to have her last round of taxotere.  We are hoping that this will make a difference.  Any one else have this kind of experience?  She is 71 now and will not be willing to do more chemo.  Due to this, has anyone tried any type of natural remedies? 

Hi sisters,



I am a Triple Neg who is 9 years post treatment and on another thread, they were saying that in recent tests, Triple Negs are more likely to recur/met than regular breast cancers, but if you get to 2 or 3 years after treatment, triple negs ALMOST NEVER come back. I had my radiation onc tell me this, and I thought he was nuts. But back then, triple neg was not the hot button issue it is today.



Gentle hugs, Shirlann