Newly diagnosed triple neg

boatergirl

I am 55 (56 next week-happy freakin birthday to me). I found out Monday I had IDC. Stage 1and was feeling pretty brave about the whole thing . My Dr. called this evening and told  me I am triple negative. Not feeling so brave anymore. I am told my tumor is small and am scheduled for lumpectomy on 12/8/08. Before the doctor new I was triple neg, the plan was lumpectomy followed by 6weeks radiation. What do you girls think my chances are of that still being the case. I am a nurse, but I have worked in the OR for years and I have never felt so uninformed

I am feeling very frightened right now,as I know so little and what I have read is not very promising.

sftfemme65

Hi there.  I'm sorry about your diagnoses.  With a lumpectomy you will have radiation for sure but I guess really the question is will you have chemo too.  I can tell you that most trip neg's have chemo.  It responds well to it and since it really is our only option at this time, it seems to be what is usually done.  do you have an oncologist yet?  Maybe you could get some info from your doctor about that. 

Hang in there, even if you have to do chemo it isn't that bad. 

Teresa

wetcoast

Sorry you have joined the group boater girl. I had idc and then lumpectomy, dose dense act and then rads. I wanted to do everything in my power to kick the garbage to the curb. Have you received stage and grade as of yet. TN responds very well to chemo and rads so keep your oars in the water and row for all your worth. Many hugs to you laurel

tos

Triple negative breast cancer is a aggressive disease and I would fight

with all the guns I can gather up.  Surgery, chemo & Rads is it for us so

you want to get it the first time.  If you would like more information

there is also a good website, http://www.tnbcfoundation.com and their forum

is strictly triple negative women and caregivers.

Good luck to you

tibet

Are Rads usually followed after Chemo? I am in chemo right now and my doctor did not tell me to do Rads as they took all the nodes and breast away from Surgery.

sueps

newalex

I didn't do rads and I "was" or "am" trip neg ...I had mast and chemo and all nodes out .... they had a meeting and decided it wasn't necessary... if that helps x 

jessee54

Hi guys, I was dx w/ trip neg in August. Went to Mass General Gillette Breast cancer center. What an amazing place. After my immediate lumpectomy, I went thru 2 months of diagnostic testing to make sure nothing else was going on. Well they found dcis in my other breast (pretty rare to have two different cancers going on in 2 diff breasts at the same time...)

So I had a second surgery, one to get clear margins around the original tumor site and removal of a couple of nodes, which were negative. The other to remove the very tiny dcis in the other breast.

All my testing indicated it had not metastasized. I consider myself VERY lucky, as the tumor was almost 2 Cm, and the other thing going on in the other breast, and this is a very aggressive cancer.

Apparently trip neg responds better to chemo, and lower risk of recurrance than hormone positive cancers. But since they considered me young,  (I'm not, I'm 54) they wanted to treat it aggressively, so I have 4 months of chemo and then 6 weeks of daily radiation in both breasts.

I've just finished my second chemo treatment. I haven't really been sick, some days extremely weak, when the WBC is at it's lowest at around day 6. Your body tells you what you have to do, no ifs, ands or buts. Eat when you need to, rest when you need to, etc, do everything they recommend and you should be okay.

My hair just started shedding, no clumps yet. But my wig came out great, looks exactly like my own hair, so I feel a little safer now about the hair loss.  There's NO WAY to prepare for the hair loss. It's devistating. And don't look to your man to get it, he never will....

But it's temporary, and worth going thru this to cut the risk of recurrance in HALF, just above the risk for all women, to about 15%. That's an amazing progress only over the past few years if you thnk about it that way.

Good luck and hugs to you all.

Jessee 

jessee54

By the way, my oncologist, when explaining to me why I should do the chemo, since it hadn't  spread and they got nice clear margins, and no lymph node involvement, was because my tumor was over 1 CM. Their general rule is if less than 1 Cm, no chemo, if bigger, it's looked at more seriouslybecause of the fast growing trait of trip negs. If a single rogue cell happened to break away and travel somewhere else, there is no way for any of the diagnostic tools to detect single cells. And if it decided to settle somewhere and start growing as a cancer, that would be bad, and they basically would just try to keep you comfortable at that point. Not a great prognosis.I guess that's the scary unknown about this disease. He showed me the numbers, and chemo cuts the risk of recurrance in half, from 30-35% over the next 5 years, to 15%. That was good enough for me.

it's followed by radiation, because that works better than chemo on the exact locations.

Best of luck to you, you will be okay, you are early stage, and perfectly curable.

Jessee 

boatergirl

You girls are so great. I have a feeling I do not have to tell you that I feel so very alone right now as my truly wonderful husband just keeps telling me everything will be alright. Meanwhile I am scared out of my mind. It is so good to find a place where i can go to just be me.

I feel like I need to take care of everyone else when I really just want to scream WHY ME. Please tell me I will soon be my normally strong self.

To quote Eleanor Roosevelt " A woman is lika a tea bag. You never know how strong she is until you dip her in hot water"

I do not know any of you girls but right now I feel like you are all my sisters.

 Thank you so much for your support.

tibet

Jessee54

Is your chemo every 2 weeks ? Did you get wbc injections to keep the WBC high? That's what my doc gave me so I can always keep on schedule.

pattypoo53

Hello,

I was diagnosed in Dec 03, 50 yrs, atypical medullary, they treated it as an invasive ductal breast cancer, 2.8cm, triple negative, no nodes involved out of 28, no vascular invasion, clean margins, lumpectomy, 4xac then 4x taxol every three weeks, then 33 rads. My onc is very optimistic about my prognosis, the further out you get with the triple negative the less chance of reocurrence. I will be five years out in Dec. 08!! So far so good. There are alot of people on this board that are past the five year mark. I think everyone on this board can relate to how alone and scared you are right now. Keep coming to this board, this is a wonderful place to get support and reliable information.

My birthday is on Nov 22 and I have never been happier to turn 55!!

Hugs,

Patty

boatergirl

Happy Birthday on the 22nd. Mine is the 20th, and I hope like you in five years I will be celebrating 5 years out.

I was diagnosed Monday 11/10. My tumor is 8mm (small, a great thing) I asked my doctor if I could wait until after holidays but she was not having any part of that. She did agree to let me wait until the 8th of  Dec. There are things I would like to do before surgery, and also I could wait until ater holidays to return to work .

What does everyone think. My family is nagging me, but I need to have some sort of control here, without being careless. It is only 3 weeks away. Am I crazy?

jessee54

Hi Newalex, Yeah I had to give myself a shot of Neulasta the day following each treatment. That went okay.  And my bloodwork after the first treatment was fine. I was just really weak for those 3 days around midcycle, then started to feel pretty normal for the next week.

My Chemo is every two weeks, six more treatments to go!!!!!!! Ugh.

Boatergirl, don't put off the surgery. It could be the difference between spread or no spread! Not worth the risk. My orig lumpectomy surgery healed real fast. I was out of pain in two days and fine in a week or less. Then you can relax a little (if poss, ha) for the holidays. I only missed 2 days of work.

Jessee 

ravdeb

I would do the surgery. My lumpectomy was easy and I felt fine, a bit sore but honestly..it was the easiest part of all the treatments.

I'm guessing that because you have such a small tumor and because you are over 50 years old, your doctors are saying you don't need chemo.

 Although triple neg is known to be aggressive, it is generally more aggressive in younger women because those with triple neg under the age of 50 usually have basal cell which is considered very aggressive, and those who have tiple neg over the age of 50 usually do not.

 The other element in this is the BRACA. They have found that this tends to be an element in those whose tumor spreads...

BUT...they have also found that with triple negs, the size of the tumor and whether there is lymph node involvement or not, doesn't really matter.

If you'd like more info on triple neg I can lead you in the direction of Constantine, who has done extensive research on the subject and some of you may be familiar with him.

I was 50 (almost 51) when I was diagnosed. I did the whole route and fought to have the most aggressive (at that time) treatment that I could.

That was over 3 years ago... :-)

tibet

hi Ravdeb

I am under 40 but my doctor did not tell me my cell is basal cell. And I have no family history, does it mean that people with BRACA gene tend to spread more than those without ? I am scared after reading your post. Why does the node involvment and tumor size do not matter that much?

boatergirl

Ravdeb,

I would like all the info I can get on triple neg, so Yes If you can put me in touch with Constantine , that would be great.

Gorilla12

Hi Boater Girl,

I was diag. triple neg at 40 yrs. old 1.5cm tumor - trip neg. Had lumpectomy, 4 DD AC and rads. I am 3-1/2 years out  Things do get better with time. I worked every day through the chemo. The losing of hair was hard, but I slapped on the wig and lived my life. You will get back to a "new normal" in time. I have noted a website below with some good news about triple negative. Click on the triple negative icon once you get to the site. I felt encouraged - the longer we stay cancer-free the better off we are. I hope this brings you some comfort and hope. Let me know if you need anything. 

http://bcwatchdigest.evidencewatch.com/

tibet

Gorrilla 12

It is great you passed the 3 yr mark. Did you do taxol? after AC? I wanted to open the website for early issue which you mentioned that shows recurrence stats but could not.  I sent you a PM.

Gorilla12

My oncologist didn't give me taxol as I had no lymph node involvement. I know it is a little different with each person. I sent you a PM as well.

Take care.

tos

I have been diagnosed triple negative twice.  Both tumors were under 1cm and both times I had chemo.  One time Rads.

I have read a study that says sometimes the smaller triple neg tumors can be more dangerous than the larger ones.

Boatergirl you might also check in http://www.tnbcfoundation.com

This website is totally focased on triple neg and has a great informative forum like this one.

boatergirl

Galnok,



Thanks, I have actually been to that web site a few times. I spoke with my surgeon last week, and she said I should probably expect to have chemo, due to my pronostic values being 3 out of 4 unfavorable. My KI67 was 30%, which I guess is not good.



As I often say...it is what it is and I can not change it, so I will have to deal with it.



It is comforting to come here and be able to face my fears with people who understand.