TripleNeg, 50 yrs old, white...anyone else?

Hi, Julieb, I am same as you. Diagnosed a year ago 11/9 at age 53. I'm also white and at the time was premenopausal. Chemo took care of that, which is fine with me . I had dose dense 4 x A/C and dose dense 4 x Taxol. Then 33 radiation treatments including 5 boost to the tumor site. I had a partial mastectomy, left side, before all my treatments. I had 10 nodes removed, and 1 was positive. I think if I was a candidate for genetic testing and it was positive, I would have a bi-lat mast, but my family history does not suggest mine is genetic, and none of my doctors seem to feel it's worth testing. I have a daughter, so I may still do it eventually. My path report also shows my type of tnbc was negative for basal-cell. I think the basal-cell type is more prevalent with the genetic type of tnbc.

Good luck to you. It's not fun, but what choice is there? It is doable, as evidenced by the fact that I managed to get myself to my fulltime job every single day except for my treatment Fridays and two Mondays during the six months of treatment. The meds they give you now for nausea really help tremendously, and if they give them to you, by all means don't wait until you're heaving. Take them BEFORE you feel ill.  You'll feel different all of a sudden, and that's when you have to take the pills! AND, most importantly, DRINK MORE WATER THAN YOU USUALLY DO. IF YOU DRINK 8 A DAY, MY ONC NURSE TOLD ME TO DRINK 12.

Everyone has a different story, but there are plenty of us to give advice to help you get through this. You should also check out www.tnbcfoundation.org it is the website specifically for triple negative breast cancer patients and has discussion boards similar to this.

Triple negative bc is on the raise across the board. Older ladies and more caucasian.  I have met ladies in the late 60's and 70's who are triple neg.  I just wonder if the testing is getting better for this....

flalady

Julie,

I was 47 the first time I was diagnosed with TN IDC. I had a unilateral mastectomy followed by 4 dose dense (2 weeks apart) AC, then 4 dose dense Taxol. I had to learn to give myself Neupogin shots to keep my white counts up. I was on the pill at the time of my diagnosis, due to irregular periods, so that part was still working. I am also white so statistics, once again, are just statistics. I seem to have broken more statistics having triple negative bc, having breast cancer a second time 369 days after the first one, being that 1% failure rate with a TRAM and being BRCA 2+. Triple negatives tend to be BRCA 1 so my geneticist was more than surprised when I was a 2. I had another mastectomy after my second diagnosis, followed by a hysterectomy/oophorectomy when I found out I was BRACA 2.

Linda

I am 44 Dx 4/10/08 Left IBC and Right DCIS Stage 3b 3/16 nods Triple Neg, & caucasian. I was perimenopausal. The treatments I have had are 4 rounds of Taxotere/Cisplatin. Every 3 weeks. Then 4 rounds of AC/Cytoxan every 2 weeks, Had a radical mastectomy. They removed a 12.5 tumor on my left breast. IBC is a rare and aggressive form of cancer. It is rarely misdiagnosis Mine was. It rarely shows up on a mammogram or ultrasound. Mine did not on the left, it showed on the right for DCIS. I had a biopsy for my diagnosis. They found 3 positive nodes. I had clear margins, and have cancer on my chest wall. Having to do more chemo now along with radiation. I am doing Taxol/Carboplatin every week for 3 weeks with one week off. Then radiation 33 tx. The combination is making me so exhausted right now. I have been hospitalized twice that is not including my surgery. This is because of infection and shortness of breath. I have heard that reoccurrence in Triple Neg is higher and that we are better at responding to chemo. I take each day one at a time and enjoy life as much as I can. I do something for myself each day. Even if it is 5 mins. I have a wonderful husband and mother who have helped me a great deal. I wish you the best in your decisions.

In God's Grace; Elizabeth

Hi Julie,

I was 50 at time of diagnosis- perimenopausal.

Stage 2B IDC TN and BRCA2+ 

I had bilateral mastectomy with expanders, dose dense chemo- 4x AC and 4x Taxol.

then had ooph and exchange surgery.

Now 3 years later and dancing with NED! Onc does happy dance at each visit!

Good Luck to you

Susan

Welcome Julie and sorry you had to join us....I was diagnosed at age 51, Anglo and perimenopausal.  IDC, Stage II, Grade III, no nodes.  I had a lumpectomy, 4 dose dense A/C and 4 dose dense Taxol.  This was followed by 31 rads with 5 boosts. 

The course of tx was pretty challenging, but one year out I am doing well and feeling great!  Keep checking in here...the support is amazing.

I was 50 when diagnosed...

Am not BRACA..

Some have said that if you are diagnosed at age 50 or older, that the triple neg has a better chance of not being basal. This may mean that it will not be as aggressive. They often equate triple neg with basal. But apparently this is not always true...

I had lumpectomy, snb with one node removed..neg. I did 3 dd AC and 12 weekly taxol.

Thirty three radiation treatments.

Hi from another Anglo who is triple neg. I was diagnosed at age 60 which surprised the doctors, because triple neg is usually found in younger women. Chemo works well for us, and I had three months of AC, and twelve weekly taxols after my lumpectomy. Then I did seven weeks of rads, and here I am almost three years later. You can and will get through this, and many wonderful women here will help you every step of the way.

Hugs, Pat

Jacquio,

Had to say Amen to your statement that once we start looking healthy again, people forget what we are still fighting.  I am a 4 year survivor, diagnosed at 42 as a IDC triple neg., stage 1, 2 cm tumor with a 2nd one hiding behind that one, aggressive form of cancer. Lymph nodes were clean, took 4 chemo treatments of AC/Cytoxin, 3 weeks apart and 33 radiation with 6 boosters.  Had CT's, PET Scans, Mammo, MRI and there's another test out there called Oncotype DX where they break down and analyze your tumor and put you into a risk / treatment category.     At the time of my cancer, there was only one place doing this test and it is Genomic Health, somewhere on the west coast.  Most insurance won't pay for it but they actually wrote off the cost after appealing the insurance decision.  They were still considered experimental, don't know if they still are or not....you should ask your doctor about it.  My Onc told me it was my decision but to go through genetics testing to know if I carried the gene was basically useless.  He said we already know you are at high risk because my mom had it but we needed the Genomic Health Facility test because this test helped him make the decision of whether I needed 4 chemos or 8 and believe me, when it comes down to that decision, the test is worth it's weight in gold.  Anyone that has gone through chemo will tell you that. I was put at the high end of the low risk category, which meant that I only needed 4 treatments.  They do say that we respond better to the chemo but there are no follow up drugs to help us. 

Worked through the whole ordeal except for a few days that I was just too weak and tired to move.  Some people tolerate it better than others and by all means, take the drugs they give you, they really do help.  You are at risk for infections when your counts go down so listen to the doctors even though you might feel well.  You always have to worry about those people that drag themselves into work coughing and sneezing everywhere because they won't use a sick day.  

I think I had more problems with the mouth sores and the skin on my feet cracking and other areas but it heals and you move on.  Best part......didn't have to shave for 6 months.  You have to keep your sense of humor and make people feel comfortable with what you are fighting.  No one understands like a 'sister' going through the same thing...we are all sisters for life.  This is the time for you to be selfish, it is all about you and your needs.  If someone wants to do something for you, let them.  They can't take the pain for you and they don't know how else to help except for offering to cook, clean, massage lotion into your feet, etc.  

Good luck and stay strong.

Hi Deborah,

Chemo brain is a reality - my kids call me 'teflon brain' - no stick!!  I notice that I have a hard time remeberingthings, but am not sure if this is becasue I am on 'overload' much of the time - demanding work, friendships, church, kids, etc, etc.....

When I first went back to work a few close friends at work I could trust would 'cover' for me or prompt me in a big meetings when I lost track of details.  I don't think anyone else really noticed.  Then again - maybe they DO, but have never said anything!!

Keep checking in here - it is a wonderful support.  I sent you a PM as well.

-Holly 

i am very satisfied with my decision to have a bilateral mastectomy- as i celebrate almost 6 years cancer free despite triple neg and being a gene carrier!

I am going to start toxol treatment weekly combined with Carboplantin. Should I take Vit. B6 during chemo to reduce the neuropathy? How much should I take? Pls help. Thanks.

 i too have neuropathy in my feet and tried using nortryptiline for it but haad bad side effects...now i just live withit - it's the worst at night...

I got peripheral neuropathy after my 6th treatment of Taxotere which was in July.  I took Lyrica 25 mg three times a day and Vit B 6 500 mg daily and it helped some.  Thank God I'm off those meds and my neuropathy is almost gone!  You just need to wait until the side effects leave your body.

Caucasion, triple negative 7 years cancer free.  I had the cmf chemo.  Did anyone else have cmf chemo?  I also had radiation treatment.  Tumor was 1.9 centimeters (stage I, just shy of stage II) and grade 3.  No lymph node involvement out of 8 lymph nodes removed.