Topic: Calling all TNS

May 2, 2010 12:50 AM, edited May 2, 2010 12:50 AM by jenn3

I am 43, dx'd right before my 43rd birthday.  Bi-lat mx - 14 nodes, 4 were positive, 4 DD AC, 12 Taxol, 33 rads (all w/bolus - 5 boost).  I was in the Avastin trial, but rec'd placebo.  I have not done recon yet, but am planning on it sometime in the next year. 

May 2, 2010 08:56 AM Morgan513 wrote:

I am 48 1/2, dx'd at 46 1/2.  Lumpectomy, SNB 0 nodes, 4 TC, and then 35 rads.  Participating in bisphosphonates study ibandronate arm.  I see Onc every three months (we are trying to extend the time between visits but there are trial requirements to be met), BS supposed to be every six months but I have decided to stop seeing her (I've had enough).  Rads Onc had my follow-up last fall but she wanted to see me again in July because I had concerns about my stress level and maybe pursuing a prophylactic DMX.  I get an MRI 1x a year and mammogram 1x a year.  Bloodwork at each doctor visit but usually it is to check my creatinine levels for the trial.   I also see a therapist to help me get my head around the whole past, present and future.

Lorrie 

May 2, 2010 10:26 AM, edited May 2, 2010 10:32 AM by LRM216

Received my diagnose as my 62nd birthday gift last February, 2009.  Had a 1.2 cm IDC nodule 5 cms below nipple at 11:00 in my right breast.  Had large batwing type lumpectomy and needed re-excision 2 wks. later for two dirty margins.  Went on to 4 DD A/C every two weeks and one DD taxol (instant neuropathy so was switched to) 3 DD Taxotere every 3 weeks.  33 sessions of rads (with 5 boosters included).  See Onc every 3 months and BS every 6 mos (for mammo and US).  I still live in dread fear of this rotten disease coming back or even still sitting in me somewhere just ready to pounce. I am a widow, must work, and raise my 14 year old grand-daughter.  It's been a hectic ride - but so far doing well.  I pray it continues.  My very best wishes to us all.  I hate this freaking disease and the total disruption of all of our lives.

Edited to add:  No BRCA test done due to my age and no history of any cancer on either side of my family.  Had mammos since age 40 - missed only one in 2007 - figured I was fine - never even had a call back and lo and behold - guess what on my 2008 mammo!  Go figure. 

Linda

May 2, 2010 11:11 AM, edited Feb 6, 2011 10:34 PM by retrievermom

May 2, 2010 03:22 PM workmother wrote:

Hello. Here is my current dilema. I don't know if I'm triple negative! Has anyone ever had their ER status be positive on their original biopsy and then negative on their pathology report after surgery?

I am 47 - diagnosed 4/1/10 (some April Fools joke huh?). Lumpectomy 4/20. no node involvement. all clear margins.

Original biopsy pathology report said ER was 50% (favorable), PR was 3% (borderline) and HER2-. I am BRCA negative. My pathogoloy report after surgery says ER negative. Surgeon is baffled. She will talk to oncologist and pathologist and I have to call her Wed. to see what they think.

If I am indeed a triple negative, I could use some words of encouragement right about now. Triple negative seems like such a doomed diagnosis and I'm really scared. The recurrence rate in three years seems very high. And I'm trying to wrap my head around the idea of chemo. Don't know how I'll make it through that. Besides the physical toll it takes on the body, I think it will take a huge emotional toll on me too - just the entire social aspect of losing all my hair. And it seems like it doesn't come back for months and months after it's over.

I had been feeling very positive and now I almost feel like I've been told I have cancer all over again. -Donna

May 2, 2010 05:54 PM Titan wrote:

Well..eleven of us so far....so this means that YOU are not alone!...I'm sure there will be more..sorry to say...however..now that we have our group...let's start talking about what we do know...

Fact..triple negative tends to occur in younger women...except there are a couple of older than 50 here but the majority are under 50. obviously mammos should be done much early than 40. Also tn seems to come out of no where and moves quickly. I had a clean mammo and found the lump myself 6 months later..at surgery time it was 1.8 centimeters...my doctors waited no time at all to take it out and wisk me into chemo...for that I was grateful..because one year ago I certainly didn't have a clue..I thought once it was out that it was GONE..wrong!

I tend to look up studies on the internet when I have a freaking out moment and I found one that had some good news on it for TN's. The study said that although tn's reoccur earlier...the actual reoccurence rate is the same as our er-pr positive sisters....the median for reoccurence was 16 months...tumor size did not make much difference...nodes did make some differnence..but not that much...

A couple of us are two years out...that is such GOOD NEWS...for us not so far along..

I have a 6 month mammo on Tuesday..I have to admit that I'm freaking out about it..it is almost the same fear as when I had to have chemo. I have been feeling myself up so much I almost feel like a freak or something....

Karen..have they tried adriamyicin on you? That is supposed to be on the best or is what you had basically the same thing? I am certainly am not a scientist and wouldn't have clue.

Alot of us here seem to have the taxol/taxotere but the other chemos are different...interesting...

May 2, 2010 09:41 PM Titan wrote:

So...who will be #13? Maybe we should just skip #13 and go to #14...I'm superstitious that way!

May 2, 2010 09:59 PM thriceblessed wrote:

Great idea for a roll-call!  A Baker's dozen of us now.  DX June 09 at age 50.  Found lump myself while blow drying my hair and resting my arm against the wall. Neoadjavent chemo (A/CT) Jul-Oct, Nov left MX and AND and immediate reconstruction with all fills in Jan, Jan more chemo (Gemzar, Carbplatin), rads Feb-Mar 2010.  Will replace the implant with the first DIEP surgery this coming July and the 2nd in August.  Sharing today's success story:  Last treatment March 25, May 1 (yesterday) walked 26.2 miles to raise $ for Avon Walk for Breast Cancer proving I got cancer...but cancer didn't get 'Me'! (Walked the other 13.1 miles today)

May 2, 2010 10:08 PM Titan wrote:

You go thrice! Awesome news! I like your scripture from Isaiah too! I bet you are a little tired but feel darn good don't YOU?

May 2, 2010 10:36 PM, edited May 2, 2010 10:37 PM by riley702

I found my tumor around my 49th birthday and waited two weeks to get up the nerve to call the doctor, because, seriously, I knew. It came out of nowhere. It went from marble-sized to about 4.5 cm within a month. I had FNA on an enlarged lymph node that was negative. No BRCA testing due to zero family history. I have a port I've had no trouble with (knock on wood).

I'm in a clinical trial right at the halfway point. My first 4 cycles were Avastin every three weeks, Taxotere on weeks 1 and 2, and Xeloda pills (3000 mg day) for days 1-14. I would normally start a new cycle this Monday, but am having the week off for midway retesting (for the trial). Because my tumor has shrunk significantly, my onc. gave me the OK to take another week off for a preplanned vacation that I was going on anyway, but it's nice to have him on board!

My last 4 cycles will be Avastin, Adriamycin & Cytoxan. Then I meet with the surgeon to see about lumpectomy vs mastectomy, poss. rads, etc.

May 2, 2010 10:58 PM, edited May 2, 2010 10:59 PM by njbhwgirl

Read everyone's posts with so much interest..okay here is my speel

I am 55 and diagnosed same age. Left breast showed calcifications and right breast radiologist claimed fatty tissue. First breast surgeon guaranteed me that the left side was DCIS and just lumpectomy with no rads and right side was just fatty tissue...she was so WRONG!!!!!

went for 2nd opinion day before my surgery and this breast surgeon said with my heavy heavy family history of breast cancer (mom, 2 aunts, both sisters) we needed to do MRI of the right side.

okay fast forward left side ended up being TN with one node involved, right side two seperate spots of lobular cancer.

I had bilateral and still hurting from it. Treatment for left side is AC 4 rounds then 4 rounds of Taxol. After all is over I will be on Femara for right side...go figure two different types at one time.

I get a mammo every year, tested for BRCA gene was negative..god bless the surgeon who made me get core biopsies on the right... I have sent a letter to first surgeon who misdiagnosed me suggesting that in the future she look more closely at women who have heavy bc in their family and try to be a little more aggressive in their procedures..

Will be starting treatment May 12th and looking forward to it being all over and moving on.

Anyone else starting chemo this month?

May 3, 2010 05:42 AM Karen3 wrote:

Hi again - just to answer Titan's question.....I didn't have Adriamycin (known as doxorubicin in the UK). Although the first lot of chemo I had Cylophosphamide and Epirubicin is fairly similar to Adriamycin and is generally the first option for breast cancer patients in the UK. In the states, these chemos are known as Cytoxan and Ellence. When this didn't work, they switched me on to the taxanes (Taxol and Taxotere) - which 'normally' work well for triple negs - but not for me! Anyhow, I am recovering from my treatment and feeling fine so far. I have been stressed about the chemo not working but decided to just get on and enjoy life! Easier said than done sometimes though.

Thanks for starting this thread Titan .

May 3, 2010 09:36 AM Shel wrote:

Thanks for starting this thread, Titan.  I had posted in my November Chemo group, but not on any TN threads.

I was 59 when I was diagnosed.  The nurse picked up something suspicious at my yearly mammogram.  That was August 2009.  From there it was all a whirlwind of additional mammos, bioposy, BS doctor's appointment.  Then I switched hospitals and basically started the process all over.  I am glad I switched, however, to a larger university-based cancer center. 

As someone else mentioned earlier, I didn't have the BRAC test done because I have no family history of cancer and because of my "advanced age".  I have two daughters, though, so I still wonder about that.

I had a lumpectomy in October, followed by DD AC and DD Taxol, ending in mid-February 2010.  Then I had 23 regular radiation treatments followed by 7 boosts.  I finished all that up about 10 days ago. 

For ongoing care, I rotate between seeing my medical onc and rad onc every three months for 2 years.  I see the BS once more but I think then she falls out of the picture.  They follow the standard of care where no scans or tests are done unless there are symptoms.

I am beginning to feel more like my old self.  I can tell just walking the dogs and other minor chores are getting easier again.  I worked throughout, so some nights this winter I would just make sure everyone had dinner and then fall on the couch for the rest of the night. 

Just waiting to get some more hair back.  I have a big family wedding in July and I hope to have halfway decent looking hair by then.

Take care, everyone.

May 3, 2010 11:11 AM mhm123151 wrote:

Found lump at age 55.  Mastectomy, DD AC and DD Taxol.

Was going to onc for blood work every 3 months and check-up, finally graduated to every 6 months. Does scans if I have a problem or if the bloodwork is out of whack. Never saw BS again as we moved from Florida to Nebraska.  Mammo annually.  Reconstruction completed!  See PS annually.

Does your onc do the tumor marker test?

May 3, 2010 01:27 PM gillyone wrote:

Hi - diagnosed at age 55 in June 2009. Found lump myself after all clear check up 6 months earlier. Lumpectomy followed by 4 DD AC then 4 DD Taxol, then 32 rads, including 6 boosts. Now I see the med onc every three months but noone else. No routine scans, will only do them if symptoms present. See family doctor for physical, CBE and pap once a year and yearly mammos.