Triple negative beyond 2 years- What was your treatment?

I was diagnosed on 3/17/03 and I chose lumpectomy.  I had chemo first every other week for eight treatments - four AC and four taxol, then lumpectomy with 22 nodes removed - one microscopically positive.  I don't know how many positive nodes I may have had prior to chemo.  I then had 31 radiation treatments. 

I was grade III, IDC triple negative.  I believe I may have been staged at 2b. 

We must remember that statistics change all the time and advances in treatment are always becoming available.  

Well, it has been awhile since I have stopped by to say hi! I am just a month shy of my 5th year since diagnosis. I had a 3.5 cm tumor, 2 positive lymph nodes triple negative grade 3. My treatment was a large lumpectomy 4 ac followed by taxol, not dose dense plus radiation. I am 2 weeks from my 41rst birthday-I used to hate birthdays, kept getting older, now I embrace every single birthday, appreciating that I am still here. Has it been easy? No. Have I worried about recurrence? Yep! Do I keep living my life and plan for my future? You betchya! What other choice is there? No one knows what the future holds-all I can do is hope that I will stay healthy and enjoy each day that I am.

Maria,

Triple negative refers to the three important markers your tumor is tested for to determine what kind of treatment you will receive and what the prognosis is based on the available statistics.

So a kind of cancer that is termed triple negative is not sensitive to ER (estrogen), PR (Progesterone), and HER2 (oncogene).  That means that you cannot receive some of the treatments that cancer types that are sensitive to any three of the above can.

I hope that helps. 

Hi, This is my first time posting but I've been around for awhile. I just passed the four year anniversary of my diagnosis. I had a 4 cm tumor, no nodes positive. I had a mastectomy. Despite the "no node" issue, I did 4 x AC and 4 X Taxol on a dose dense schedule. So far so good. I would not have changed anything about my treatment. I'm not sure if the medical community is still as hot for the dose dense schedule as they were four years ago, but it was okay for me. Just really tired and felt yucky for four solid months. I do have neurapthy from the Taxol, but it's relatively minor. Today I'm a busy, happy wife, mom, and lawyer. Oh did I mention busy? Best of luck to you and everyone just starting this journey. My wonderful oncologist told me four years ago that this would just be a bump in the road of life.



Take Care.

I was diagnosed triple negative-August 2005.  Had lumpectomy and found 1 positive sentinel node.  Then found out I was BRCA2+.

For me-it was the easiest decision I ever made- Double Mastectomy with expanders.  Then had dose dense chemo-AC then Taxol.  I had an oopherectomy after done with chemo

I am done now- Breasts all done including nipple, see onc every 3 months for 2 years and now every 6 months.

I have absolutely NO regrets.  Life is good!

Good luck to you all

susan

I am 4+ years out from diagnosis. I opted for a mast, basically because when it was described to me the odds of a local recurrance being higher with a lumpectomy, I wanted to lessen the odds as much as possible. I had 6 rounds of TAC plus radiation.

And as far as shaving, I also shave less frequently now than I did before diagnosis. I griped at my rads onc. I have no hair growing in my armpit where I received radiation. But there is an area at the very top, less than 1/2" where I do have hair. I griped at her that she could have done radiation covering the whole area so I wouldn't have to shave that pit at all.

I am one of those who frequented these boards several times a day during treatment and then my visits have gotten more infrequent as the time has gone by. Sometimes it has been several weeks, a few times it has been months since my last visit.

I was diagnaosed triple negative in 1998 and had lumpectomy, AC and Taxotere and 30 radiation treatments (1.3 cm tumor with no lymph node involvement).  I got about 8.5 years out before developing a new primary in the identical spot in my other breast  earlier this year (my surgeron says she has a couple of cases like mine and would be the topic for a different conversation).  Treatment this time was lumpectomy, C and T and 30 radiations (could not get A again without risking heart damage).  No family history, but Dr. thinks I would test positive for the gene given the triple negative characteristic and having had the two cancers before age 40.  Insurance doesn't cover cost for genetic testing and my appeal has been denied.  While I've been asked to consider getting my breasts and ovaries removed, I haven't made up my mind just yet. My husband had testical removed last year due to cancer scare.  He says once a body part is gone its gone for good, so think carefully about your decision!

Happy Thanksgiving.  I am 2 years exactly as Turkey Breast Eve, and Turkey Day, I finally found the painful lump which popped out like a plastic Turkey Thermometer indicating "done", "ready", "time to slice, dice, at gobble, gobble, gobble. 

It's my "Lumpaversary!", in a way.  The brave new world of cancer, confusion, and unexpected shocks, seaching, and the quick course on "learning all you can about triple what?", in 2 weeks.  Immediately called PCP, no appointments available until 2006.  Called Radiology Woman's clinic where I'd had mammo and ultrasound for a suspicious nodule in another region of the left breast.  There was a blue vein in the area where I had been having pain for over 10 yrs.   I was good about having mammos since my mother passed from Invlammatory BC., Aunt, Grandmother, Greatgranny, all had breast cancers; what kind?  I don't know, there were no tests for hormone receptors, and women rarely discussed "breasts".  It's still a touchy subject for many women.

The Cancer Nurse told me the tumor I had likely was wrapped up in a bundle of nerves, unusual; and with DENSE BREAST TISSUE, it is extremely difficult to find a lesion, especially when it's less than 1 cm.  Mine was 2 mm from the chest wall; undifferentiated, at the 12 oclock position of the breast.  It did not have smooth edges, it was jagged, dark looking, like a splat of ink, as it showed up clearly on the utrasound.  The Radiologist was 99 percent certain it was malignant; did a mammotome core biopsy, and told me it was 1.2 cm. She sent the report to my family doc, who called and recommended a surgeon who advised taking the breast and all of the lymph nodes. 

I found 4 more surgeons at different hopitals.  It was winter, snowing, blizzards, long drives.  Found a lovely surgeon who within the week explained sentinal node biopsy, triple negative (sort of) cancers, and Invasive Ductal Cancer.  I had an MRI in the middle of the night; by then, the tumor had grown to 1.7 cm in diameter, and was long, 2.3 cm, with oddball starlike shape.  I talked to the other surgeons, and they all spoke highly of the surgeon who had me set up and into surgery within the following week. 

I wanted to have a bilateral; he assured me it was not necessary, and that he didn't think radical mastectomies would give me a better prognosis.  I just wanted the thing out.  He said it might have been there for ten or fifteen years.  I asked another obgyn to take them off twenty years ealier, because my mother and the family history was so strong.  They laughed at me; said the insurance company would never pay.  No genetic tests were available 20 years ago.

I was young; silly...

I had a large "segmental", partial mastectomy, which is sort of lumpectomy, but not  really.  The margins were clean, and the 4 lymph nodes were negative.  I had surgical problems with a hematoma in the breast, and a seroma in the armpit; infected; cured with antibiotics, started chemotherapy late because it had to reduce the infection.  Went to 4 Oncologists in the meantime, for second opinions.  Didn't follow my little red flag, and went with the surgeon's recommendation. 

Basically, they all offered the same treatment.  Some were easier to talk to, and I wanted to get it done and overwith.  Had Adriamycin/Cytoxin x 4, 12  weekly Taxol, and 32 Radiation treatments which oddly, radiated the lymph nodes. 

Always wondered, why mess with the lymph nodes at all, since triple negative cancer is almost always given the same chemo and radiation?  I will never know if I made the right choices.  I will always wonder if I should have gone to the hopital that does clinical trials.  The tumor was growing so aggressively, I was frightened, panic set to the max, and my intelligent dh suddenly turned into a sack of stupid potatoes.  Talk about Turkey! 

He still doesn't believe I have cancer, and believes I am cured.

If this is "cured", why all the pain?  Had PET and CAT of body and brain;  no sign of metastasis; but there are some very odd things around the heart, colon, lungs and bones; I will see Blue Eyes next week...figured I'd celebrate this Turkey of a "Lumpeversary".

***** 

Sadies, both of my grandmother's names were Sadie; one's real name was Sarah Marie, but she went by the same Sadie.  I always loved the name, it's so adorable and sweet.  And so are you...

Didn't want this post to go on, but it is not possible for me to figure out a short version.  There's even more to the boring story, which isn't worth going into.  I wanted to respond to the question, as it's been exactly 2 year Turkey Day since I found the lump; I don't remember the next year; and I am slowly returning to my former self, though I am not convinced I will ever see that woman again.

She disaapeared, and I took her place.

Do I regret my decision?  I wish I'd gotten the prophetlactic bilateral mastectomy.  I didn't know anything 2 years ago, and triple negative cancers are a completely different breed;the stealth bomber form of breast cancer...very sneaky, unpredictable, and as yet, little is known.  The treatments are supposed to be gold standard; but there are what?  3 to chose from?

When it's over, we wait...I don't know about everyone else, but waiting annoys the heck out of me.

Have a Happy Thanksgiving, enjoy each day, and remember, there are many 20 plus survivors of triple negative cancers.  Every cancer is in a world/universe/galaxy of it's own.

(hugs) to all

love

Indi

Well, ladies, I'm new to all of this (stage TBD, type III, ~ 2.5cm, triple neg and node negative) just 2 wks out of the lumpectomy surgery and am waiting for the plan/option revelation tomorrow.  I am just reading to assess what I should expect in the near future.  I was searching for stats to hopefully get out of the whole chemo reg, but now after reading your comments, I need to just kick this in the butt and then enjoy my life!  There is so much I don't know...a whole new language.  What a way to remind us that every day is precious gift!

Triple negative here - 6.5 years out.  4 positive nodes.  Had chemo (AC/Taxotere/Xeloda) and radiation and bilateral mast.  Still NED and still living large!