Triple Negs - Fall 2008 Update
Comments
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Hi all,
Diagnosed mid-January--gyno told me DCIS and was very casual.
Went to surgeon at Northwestern, told it was invasive.
Bi-lateral mastectomy March 5. Two tumors, triple negative, both under 2cm. and 10 positive nodes.
4AC 4 Taxol, ending July 17.
33 rads ending October 2.
Will be having exchange surgery probably in April.
Now, just freaking out with every ache and pain and lightheaded and dizziness.
Lisa
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Lisa your disease and my disease truly shows how triple negative bc could be more than on kind of disease. Doctor's admit that triple negative is the catch all for all other bc, that they can not yet be broke into subtypes at this time. Your disease to move so rapid to brain and my disease to love "soft tissue" just shows this TN has be more than one kind of breast cancer.
And you are so right we must keep the HOPE! I hope you find the next treatment that will help you with your fight.
Flalady
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So far I've had it easier than most of you, but then I wasn't dx till last November. Had a lumpectomy - 9 mm tumor, with 0/3 nodes. Then followed 4xTC, and radiation. I probably wouldn't have had chemo if I hadn't been in contact with Lisa - she gave me the dope on triple neg & made me realize you only have one time to do it for the first time.
Next week I have my first post-treatment mammo & appointment with the radiation onc. I'm very scared. I guess we all get scared every time we go for even a routine exam. Or once you are triple neg. no exam is ever routine.
susan
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I was diagnosed with triple negative IDC on March 28, 2007. I had a bilateral mastectomy followed by 4 DD AC and 4 DD Taxol. In January of this year I attempted TRAM recon, that failed. The muscle died, had to be amputated and the flap removed. On March 31 of this year I was diagnosed with a new primary, DCIS, in the other breast. I chose to have another mastectomy. In May I had genetic testing and found out I am BRCA 2+ and with the recommendation of my geneticist I had a hysterectomy/oophorectomy in June. I am done with surgery and won't be having reconstruction. I don't want to spend what's left of my life trying to get back what cancer took away. I have to believe that my life is worth more than two breast mounds.
Two weeks ago I had my 4 month check up with my oncologist and when she was done checking my chest she told me, "Your chest wall is fine." Chest wall...that's what I'm down to. What if I had implants and something started to grow behind them? I would never feel it and by the time it was found it might be too late. These are the thoughts that keep me from having recon. I am a jumble of thoughts and fears.
On December 23 I will be leaving my job of 11 years and moving up to the coast to join my husband. We have had a "commuter marriage" for the past year. It's time for me to move before something else happens to me. It's our time to begin the second half of our lives...
Linda
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smithlme
When you are BRC2+, do you have family history? I have no family history and wonder if I should also do a genetic testing? any advice?
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My paternal grandmother died of BC and my sister was diagnosed at 36. She is a 19 year survivor! Our dad is a colon and kidney cancer survivor, but those two cancers aren't on the BRCA 2 "list" of possible cancers. Cancer strikes without a reason to so many people and genetics isn't always the cause. Speak with your doctor if you have concerns...
Linda
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was your sister' also TN? What kind of treatment did your sister get?
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I was given the brca tests even though there is no history of BC in my family at all. Being trip. neg. and being Ashkenazi.
If you fit into that profile, you might be able to convince the insurance people to do the test.
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My sister wasn't TN. 19 years ago she lived in Arizona and was given 30 weekly infusions of various drugs. Some are still used today and some aren't. She was young so they chose to use her as a "guinea pig" and tried various treatments. Back then she chose to have a unilateral mastectomy and the following year she had a prophylactic mastectomy on the other side and TRAM reconstruction. She has recently tested positive for BRCA 2 and will have her hysterectomy/oophorectomy in December. My oldest daughter (22) has spoken to my geneticist and will have testing in the future. She's not ready to deal with this information right now in her life. My sisters 36 year old daughter is gathering her information to get her testing. She is now the same age as my sister was when she was first diagnosed.
It's a scary legacy to possibly pass down to our children, but they need to know what could be in their future...
Linda
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My Mom was recently diagnosed as TN (calcifications). She's mid-70s so I guess that makes it even more uncommon. While I went through my own journey earlier this year (can't believe both of us in the same year!), I was ER+/PR+ so know much more about that than what she now is facing. Having her surgery next Tuesday - lumpectomy with SNB to be followed by radiation. Any suggestions?
Joan
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Hi - I was first diagnosed in 2000, with IDC in left breast, TN, I was 36 then. Went through lumpectomy, chemo, rads. Tried to move on with my life. Six years later, 2006, I was diagnosed with IDC in the right breast, TN. Went through lumpectomy, one node involved this time, chemo and rads. Decided to have BRCA testing, yup...BRCA1+. Had full hysterectomy in 2007, due to my high risk of ovarian cancer. They couldn't do that operation fast enough. I was a wreck. Then when I recovered I decided to get a bilateral mast. I also had immediate tram flap reconstruction. So here I am now, recovering from all this. My mind is not the same, I guess its chemobrain. I am depressed and scared. Just had a CT scan yesterday, drank the barium, drank the apple juice w/xray dye (yummy) and then to top it off, two tablespoons of paste. I really didn't like that test, not one bit. Bone scan is next week. So, yes, I am nervous about what they might find. I worry about what will be next. I try and be positive but its really hard some days.
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Florida Lady, I don't know what to say. You obviously have more than I would wish on anyone. I am truly happy you are seeing results with lxempra treatments. I wish you continued success with lxempra.
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Nancy - You seem to be doing everything you can to help yourself. It's so hard going through tests and waiting for results. Sending you lots of hugs.
Joan
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Wondering how Flalady (Debbie) is doing this week?
Wish to let you know I think of you a lot, and hope for much more concrete triple negative news coming soon from the San Antonio Breast Conference in a few weeks.Best wishes to all of you,Tender -
flalady i am also on ixempra had my first dose ast week my onc told me thee was no weekly doe for this chemo i wonder why she told me this when thee is one deb rom ky
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slonedeb - My doctor said they know think everyone should be on weekly doses due to side effects. This is pretty new data because my chemo dept had to call the vender to get info on how to mix this. I do find the side effects pretty manageable at this dose. I would ask your doctor to talk with the vendor about this info ASAP because this drug can be toxic.
Tender,
I doing ok right now. I had to up my pain meds to a low dose morphine drug. (2mg) I'm still having issues with headaches and feel a little nauseas. The new pain meds has helped a lot but it does make me a little sleepy. I think my headache are because of my lymphedema is in my shoulder and neck and when I lay down this presses into the base of my head/neck. My open wounds do look a little better. Not a hugh improvement but a least they are holding there own. I can't believe I gain back the 10+ lbs I lost early in the year already with Ixempra. I had to up the size of my shirts so they will fit over my LE arm and shoulder also.
Best wishes to you all,
Flalady
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Hey Lisa - I haven't posted in a long, long time but you sharing your story again made me want to reach out. Even though we've never met...we are just a short distance away from one another down the freeway in SoCal so I feel like I know you...
We were dx within days of one another...same dx, different tx plan. I had lumpectomy, DD AC and then T with 31 rads (4 boosts). Out tumors were same size, same stage, same grade, same node status, same hormone non-receptor status...and my heart is breaking for you...
Gentle Hugs and STRONG hope, faith and love....
Holly
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Wishing you a good week, Flalady; one without headaches and nausea. I keep you close in my thoughts, and wish you and all ladies a respite from physical discomfort, as well as lots of family comfort in thanksgiving and nourishment.tender
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Hi Tender --
Wish us really rummy eggnog and lots of stuffing (some of which we might imagine ending up in a designated anatomical area of certain health care professionals we know)! I like that even better than mere nourishment and thanksgiving.
I had no history of BC in my family, but since I'm triple neg and had an Ashkenazi grandfather, my insurance covered the test.
Love and turkey to all.
Annie Camel Sage
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You got it Annie. Wishing you yummie eggnog, fixed as you like it. We're doing oyster stuffing here ourselves.Cheers,Tender
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bump
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Annie, what is Ashkenazi ?
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Just wanted to tell you wonderful women that my mother was dx as a triple negative in 1999 and she is doing fine here in 2008 at the age of 78.
Love,
Terry
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hi Terry
It is good to know your Mom 10 yrs out. Was there any node involvment and what was her treatment 10 yrs ago?
Roya, Ashkeazi refers to European Jewish ancestry. Many have immigranted to the United States. What I don't know is why insurance would pay for the gene test if has Ashkenazi background vs. other background? This maybe Annie knows more.
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As for the insurance companies ... There is a known increased incident of the BRCA mutations in Ashkenazi Jewish descent folks also a very high correlation between some specific markers that are present in Ashkenazi descendants that have the BRCA mutations so the test can be shortened to look for those rather than doing the full panel - a huge difference in cost of the test.
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Newalex,
My mother was treated in 1999 and I believe it was the coctail listed below. She also didn't loose her hair....but did have some thinning.
Acronym: CMF
Cyclophosphamide
Fluorouracil
Methotrexate
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That is very interesting about the Ashkenazi Jews. Does that mean they have a higher incidence of BRCA?
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Hi dear sisters, I am a 10 year survivor with TriNeg diagnosis. Things are good and I am on a cruise, so keep up your hopes and stary strong.
Gentle hugs, Shirlann
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Shirlann - Great to hear your news. Can you share your original diagnosis and course of treatment? I'm tracking info for my Mom who was diagnosed in November.
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Wishing you peace, love and joy.
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