Just found out yesterday am triple negative

Emma75 · June 2007

Hi Everyone,
I have just found out yesterday that I am triple negative. I was in for my 5th round of TAC chemo ( have one more to go in 3 weeks time). My tumour was 1.8cms, Grade 3, 2 out of 24 lympyh nodes affected. Im 31 years old.I had a lumpectomoy and all lymph nodes removed in Jan. So far my onc and team have given me very little info , except that now i wont have any further medication / treatments post chemo except the 6 weeks of rads.
I have been searching the web this morning and am now completely freaked out by what I have read so far regarding prognosis for recurrence ,etc and lack of available treaments for triple negative patients.
Does anyone have any information/ experiences that could share or know of any good resources I could look at ? Just as I was starting to feel positive about finishing chemo and starting to rebuild my life, this crops up ! I am so MAD with the onc for not making this clear or going into any further detail when I spoke with him. I feel as if they are keeping something from me, as if they know the "inevitable bad stuff" is going to happen to me and are afraid to say. Apologies, I probably sound complety irrational, but am currently in a state of serious worry and anxiety. Many thanks in advance for any replies.
Take care and look forward to chatting with you, Emma (located in ireland)

Gagal · June 2007

Welcome Emma75,

I'm new to this also just found out a couple of weeks ago that I was triple neg. I read up after my core biopsy and when the surgeon told me I was triple neg, I said, "that's not what I wanted to hear, and he said, "you've been reading and referred me to oncologist, and that's all that was said. The oncologist didn't blink an eye and said my chances were 87% survival for 10 years if I did TAC and radiation. But I can't help but wonder if they are just painting a pretty picture because when you go on line it sounds so bleak. I think we should stay positive, I have been reading on this site and alot of new interest seems to be geared toward the triple negs, hopefully they will have more treatments soon. It makes me feel better just being on this site, I know I'm not alone.

Bimmer · June 2007

But you have no real choice but to deal with it. After my wife completed 15 weekly doses of epirubicin, then 12 weekly doses of abraxane and 35 doses of radiation, we found that her triple negative and braca 1 negative cancer had spread. Petscan then showed tumors on her liver, lungs, internal lymph node chain and right femur. We then decided to seek a second opinion and went to The Gilette Breast Cancer Center in Boston for that. The doctor there confirmed the dx, he even said that due to her triple negative and braca1 negative status, that her "outcome was predictable from the onset."
I don't want to scare you, but there are few "good parts" to all of this. I suggest that you start scouring the internet, Google "triple negative breast cancer", you need to become an expert on precisely the type and subtype of cancer that you have. You will be making some life and death decisions soon. It will be for your life.
Read, and learn as much as you can so that you might make the best, most informed decision when the time comes.
When the time came to start carboplatin, which was her fifth line of chemptherapy, we did alot of research, we talked about not starting it and calling hospice. But as sick as she was, very near death, she decided to fight on and do the carboplatin. If she would have made a different decision she would not be here now, and doing pretty damn well too.
Good luck to you. I invite you to become an expert, and perhaps prolong your own life for a very long time.
I'm no doctor, this is all just one mans opinion.
Bimmer

CommandoBarbie · June 2007

Emma & Gagal - I'm also triple negative. Dx 1/29 - IDC, triple neg, 4.5cm tumor. I did chemo first which shrunk the tumor to almost non-existent. I'm scheduled for a lumpectomy in a week and a 1/2, followed by rads.

Please do not let what you read upset you. You are NOT a statistic! Cancer baselines are based on 5 year averages, so by the time you are reading percentages, they are 5 years old. There are many, many triple negative survivor stories on this website. And many, many threads with information regarding new treatments and clinical trials for us triple neg girls.

I personally do read everything I can find about triple neg because I'm interested in knowing what I'm up against and I often take this info to my Onc for additional info. Knowledge is power!

None of my Dr's feel my dx is a death sentence; rather we use my triple neg status to determine my best tx options.

Bimmer, I'm sorry to hear that your wifes cancer had spread, but you do mention that she is doing better. Sending you both wishes that she continues to improve.

Bottom line girls, talk to your Doctors and ask them your questions. If you dont like them, or they way they are communicating, dont be afraid to switch Oncs. Remember, they work for you.

Hugs

Carynn

dunner1 · June 2007

Just had to chime in here. I am a Stage 3 Triple Negative and I am alive and well 4.5 yrs. later!!! Please do not listen to stats- they are based on research from the past. When I was diagnosed I said the ones who survive are the ones with a positive attitude. I wish to you Emma the luck of the Irish and remember we all just have today so live it to the fullest. I kept on saying I am invincible and I prayed (and still do) to God to heal me and He did. Amen. Dunner

LisaSDCA · June 2007

Emma - it's better to have all of the information you can. Being triple negative isn't decisive one way or another in this crapshoot disease. I have a good friend who is a 20+ yr. survivor and receptor negative.
Bimmer - what significance are you giving to your wife's BRCA-1 negative status? This says more positive than negative - at least there is no 50-50 chance of a mutation being passed in the family. BRCA-1 positive tumors are known to be more agressive, but I'm not letting that stop me from doing everything possible to live to be a very old lady some day. New advances - such as the carboplatin that seems to be working so well for your wife - make it more and more likely that I will do so!

Lisa

CommandoBarbie · June 2007

Dunner / Lisa -

AMEN!!!!

Emma75 · June 2007

Hey Gagal,
Thanks so much for your reply - you sound like you have got this in perspective. Im going to meet with my onc hopefully this week, which will hopefully put me in a better frame of mind. There seems to be alot of scaremongering on this topic on the internet - i was so freaked out yesterday, i couldnt read any more ! I was like a crazy woman / manic depressive for the entire day !. Luckily,after talking with a family member who is more medically au fait with this sort of thing, and also from reading your reply and the others replies to my post, I feel in a better place - so thanks so much for that. They way Im trying to look at it now is that no matter whether we are triple negative or not, the first 5 years post dx and treatment are going to be a tough time for all, just because it says on some websites that triple negs have a greater probability of recurrance in the first 5 years doesnt lessen the dread - i guess the key to this is managing these emotions and fear, which is something that has to be done to stop cancer invading our lives when we are trying to get/ keep it out of our bodies.

anyway, thanks again for you post, and I really look forward to talknig to you again here. Hope your feeling good today,
take care,
emma

Emma75 · June 2007

Hey Carylnn,

Your attitude to this rocks ! Best of luck for your lumpectomy op - it will be fine. In my reply to Gagal, I mentioned that I had met with a family member who would have alot more medical knowledge than me ( my uncle is a medical scientist), - he was very adamant that I ignore the statistics that are being bandied about on the internet, that the sources of these data is often inaccurate, and authors often writing papers based on such data just to get cited.
Definatly, being informed and working with the onc to determine the best treatment option is the best foot forward ,along with a postive attitude like yours !
Great to talk to you hear, and thanks for your reply,
take care,
emma

Emma75 · June 2007

Hi Lisa,
Reading about your friend is so inspiring - its great to hear the good outcomes - may she keep rocking.
Looking forward to talking to you again here online,
best wishes
emma

Emma75 · June 2007

Hey Dunner,
Thank you ! 4.5 years, thats brilliant. Have you had to make any major lifestlye changes to keep healthy this long ? I was told to limit alcohol consumption ( which is one of my favourite activites !!, to 14 units per week - about 1 bottle of wine ! I was like , youve got to be kidding me !!. Apparently , according to the onc there is a strong link between alcohol consumption over that amount ( 14 units per week), and breast cancer in younger women. I will have to ask him when I can be classed as "old" then next time i meet him.
Yes, my uncle said the same thing re the stats.
Thanks so much for your reply, its uplifting to read the good stories,
I look forward to talknig to you again on these boards,
best wishes,
emma

Emma75 · June 2007

Hi Bimmer,
Thanks so much for your reply. Im so glad your wife is doing well and that things are turnig around for you (and you !). Thank you also for posting the names of the treatments she has been on the most recent, Carboplatin. I still need to find out if im BRAC-1 negative, but hopefully ill get a meeting with the onc this week and all will be made a bit clearer.
The oncology nurses in the day care where I recieve chemo once every 3 weeks keep telling me my chemo is just an "insurance policy", becuase my PET scan was clear ( I had it before the lumpectomy). I asked them and the onc if i was going to have another PET scan after the treatment is finished to make sure the cancer hasnt spread, esp. seeing as it was in my lypmh nodes, but they said there is no need and they take blood tests to determine markers. I have heard ,however, that this is not a very accurate way of testing.
Anyway, I will jsut have to keep battling this one and get as informed as possible- again, Im so glad to hear your wife is fighting on and that she found a treatment that is working for her.
Best wishes to you and her, look forward to talking to you again here,
emma

dunner1 · June 2007

Hi Emma- As far as life style changes I have done a few but I am not perfect by any means! This is what I have done... 1)I joined a gym to keep up with my kid (I was diagnosed five months after having him and I was 41 at the time...). 2) I try to eat as much organic food/milk as I can. 3) I limit my alcohol and I have not had one beer since diagnosed since I read it could cause a reaccurance(silly I know...) 4) I eat flax seed with my yogurt 5) Take CoQ10 6) Take a multi vitamin... Now I am not 100% by any means... I slip and forget (chemo brain!)... I forgot I should have not too much alcohol and at the wedding last week (ended up at an Irish Bar until 2am!!!!!) and I paid for the next day! My friend from Ireland came over and need I say more! If you have any more questions please don't hesitate. Take Care- Dunner

TenderIsOurMight · June 2007

Dear Ladies,

I want you to know that you are thought of and supported by those of us who are not in your shoes, yet also have breast cancer. Clearly, the triple-negative category needs all the great brains in the world working on new therapies NOW to take this diagnosis to a different place. I for one, will advocate with the major advocacy groups for emergency allocation of funding to triple negative disease. Perhaps others might too.

I would encourage all triple-negative women to ensure that their personal pathology is truly negative for ER+, PR+ or Her + status. There are occasional reports of false negative results: a second opinion or review of this at your personal institution may help you.

I write this to let you know we're with you! Keep researching, advocating, and making sure your information is processed 100% accurately.

fd411 · June 2007

Emma,

Here's my story so far.

When I was first diagnosed I had at least stage II IDC with grade III tumors and at least one positive node.

I had chemo first, then lumpectomy. The final pathology put me at Stage III and 6 positive nodes were found. I had radiation after that. I was out of treatment for 3 months and went to the surgeon for what I thought was complications from lymphedema. I came out of that appointment with them telling me I had mets to both lungs. PET scan showed other areas as well.

I had a dye contrast CT scan of the chest, pelvis and abdomen before I started chemo and they were all clear. I had a non contrast CT scan before I started radiation and all it showed was small nodule on my thyroid that wasn't a concern.

Before I started my treatment, my onc told me I had a very aggressive cancer and he has never seen a more aggressive cancer like the kind that young African American women with triple negative basal type tumors have. He said I had to have "kick butt chemo" and I got a good dose of TAC. So I already knew it was agressive.

Knowing what I know now and how quickly my cancer came back or spread (Was I ever really NED?)I wouldn't be satisfied with not having scans after treatment or at least once in awhile. Especially with positive nodes. For me it would be just extra insurance to catch it again just in case it did return, and before it spread to lots of areas.

I don't think it has to do with having positive or negative frame of mind and that determines who is going to have a recurrence. It just seems to happen to some of us and not others. Recurrence or not, I believe God has always looked after me and has answered my prayers. My family is healthy, I'm able to work still, I'm have a home, a job, etc.
I just pray for strength to be able to handle all that comes my way whether it be good or bad.

I also think that sometimes we have to do some research on our own because the docs might not tell us everything unless we specifically ask.

Hugs to you,
Ferne

Gorilla1234 · June 2007

Dear Emma,

This is my first time posting to the board, but I had to reply to you. I was dx on 7/11/05 with 1.5cm no nodes and triple neg. I did lump, AC chemo and radiation. It will be 2 years for me soon as a survivor and I feel great. I am not 42 years old and am so happy to be alive with my family. I have veen married 25 years (this year in July0 and have 2 children 13 and 17 years old. Being triple negative does not mean a bad prognosis. It can be positive in that we don't have to take tamoxifen. Once you are done with all your treatment then it becomes a mental battle to stay prositive. That part took me longer than the treatment but it did come with time. It will for you too. I had to reach out to you, please stay strong and you will make it too!!!!

CalGal · June 2007

Hi Emma -

Another triple negative here, but also BRCA1.

I'm also not sure that my "recurrence" was a recurrence and not missed originally, as it's above both the lumpectomy and radiated area. No scans or bloodwork were done on my initial dx. I was told that my Oct 05 mamm's were fine; but after I discovered the lump in Dec 05, the mamm's were lost ... later they were back in my file and even I could see the lump that was missed. So, not a lot of faith in my now-former HMO.

On my recurr, mets to the liver and unrelated kidney cancer, I did a ton of research. I felt that the standard 4 AC and then 4 Taxol weren't in my best interest as a triple negative, BRCA1 with mets.

Fortunately, my onc was open and receptive to discussing studies and making changes to the proposed regiment. I did 6 dose dense AC and the 3 cm breast tumor vanished after only 3 chemos. I took a break for radio-frequency ablation (RFA) of my (shrunk by chemo) liver mets. As an extra precaution, I then did Taxotere & Carboplatin. I'd been reading that the "platinums" are looking good for us triple negatives. At the end of this month, I'll have been NED for bc for 1 year! RFA took care of the kidney cancer too.

Most onc's aren't experts in bc, let alone triple negatives! Even the onc's who deal with bc, tend to be much more familiar with all the hormone treatments rather than trip negs. I figured it was their job, but my life!

Hang in there ... do some research ... talk with your onc ... and if need be, get 2nd or 3rd opinions! I had 2 second opinions on my recurr & mets dx, 2 second opinions partway thru chemo as well as 2nd opinions on the liver mets and kidney cancer.

Wishing you the best,

CalGal

Shirlann · June 2007

Hi gals, I am a Triple Negative who has been disease free for 8 & 1/2 years.

I think this whole thing is way overblown.

First of all, while we cannot use Tamoxifen, Tamoxifen is not risk free. It can cause a very virulent form of Uterine Cancer. That is one reason people are on it for only 5 years.

If your cancer is relatively small with no lymph nodes, you are in very good shape.

I think jumping on "Triple Negs" is just the "Disease of the Week".

When I was diagnosed no one seemed particularly upset. Maybe that was for my benefit, but I think all this panic is not warrented.

Just my opinion.

Gentle hugs, Shirlann

Emma75 · June 2007

Hey ladies,
Thanks so much for your replies. I met with my onc on Wed and voiced my concerns. He is the leading onc in ireland, and also is also involved in alot of research work in the US, so I have complete faith in him . He said that ideally he would have preferred if i had been ER positive, however, that being triple negative was not to be blown out of all proportion ,or to be worried about any more than any other type of bc. He said that I would be closely monitored over the next 5 years and while there isnt a great availability of drugs such as tamoxifen etc currently available for triple negs, that in the next 2-5 years there would be so if / when a recurrance occurs we will deal with it then. He said a whole lot of other stuff which put my mind at ease, so Im just getting on with life and enjoying each day as best I can ( and i really do enjoyment very well .
Thanks again for your replies, it means alot. Hope everyone is having a good weekend !
emma

fireba · June 2007

Hi Emma,

Wanted to let you know that we have almost identical diagnoses, and I am also 31. You're not alone! My onc was also very positive about the trip neg situation, even though I had driven myself to utter terror with internet research! So I keep up-to-date on the trip neg treatments, like carboplatin, but so far I think I just have to just trust my onc, focus on my "real" life and my family, and keep on going!

Sara

gshoemate · June 2007

Looks like i'm joining the club. I'm 37, had a rb mastectomy on May 9th and just now finally got my path results from my oncologist. ER/PR negative and my HER2 was a 1 so they are doing a fish (I didn't ask what that was, just assumed it was further testing). When the oncologist said that I was mostly all negative I said "crap, that makes me triple negative". He told me to stay away from the internet (him and my husband think it's a bad place for me). I will just put my trust in my med team and go from there. Best of luck.

JellicleCat · July 2007

Hi Ladies,
My pathology is slowly coming in. Here's what I do know: I know I'm triple negative, I've just learned it has not invaded the lymph nodes... I know the tumor was 2.5/1.5/1.0 cm.

Here's what I don't know:
We don't know if it has spread vascularly yet.
When will I learn what stage the cancer is at?

What other questions should I be asking?
Thank you & Love to all,
Michelle

twink · July 2007

Hi Michelle, I'm so sorry that you've had this news...I totally understand what that feels like (being in the same predicament myself). The stage is based on TxNxMx, the T=tumor size, N=# of nodes involved and M=metastasis or not (this site has a good guide located here: http://www.breastcancer.org/dia_pict_staging.html)

Usually a PET/CT scan will determine if the cancer has metastasized. The grade of the cancer is also a good bit of information to understand (1-3) because it indicates how aggressive the cancer is.

Good luck to you.

darla1966 · July 2007

Hello everyone,

I wanted to weigh in because I just found out this morning that I am triple negative and naturally have been searching the web ever since. The internet articles do make it sound pretty bad. I am feeling much better now though because I called my sister, who is a 13-year BC survivor, to find out if she was hormone receptor negative and she was. She had chemo and radiation and has been cancer free ever since.

JellicleCat · July 2007

Thanks Twink,
I'm still confused though... it's a lot of "if this, than that" stuff....
And now I have a printed pathology report with all kinds of medical-ease on it (and I know some nursing!)... Still so confused!

Any idea where I can research the following:
"Overall pathologic stagins of this tumor is pT2, pN0 (i-)(sn), pMX"
Love to All,
Michelle

LisaSDCA · July 2007

Hi Michelle -
I believe your path report is telling you p=preliminary
Tumor2=greater than 2.0 cm N0=negative nodes via (sn) sentinel node analysis MX= metastisis unknown (sometimes read as 'not suspected')
Angio-lymphatic invasion/involvement will be on another line and will say 'present' or 'absent' or 'not observed'.
The best translator for all of this is your oncologist, who knows this specific pathologist's shorthand. How long before you see him/her again?

Lisa

Traci-----TripNeg · July 2007

Shirlann,
You made me feel a little better.
Hugs, Traci

FloridaLady · July 2007

Emma, I would like tell you what I have found out from going through 3 top cancer centers and 7 diff. chemos in 18mths. Triple neg. is a generic name for bc with unknown receptor. Meaning dc do not have the technology to break it down. The only good thing abiut this is that everyone can responsed differently to treatment. Because we each may be different kind of receptor. So you are "you" and you will not know anything until you try the treatments. I have been told this week I am ahead of technology and they do not know what to do. This from MD Anderson Houston rated #2 in the world. To show how diff. I am I have no mets after two mast. with 27/28 nodes positive on both sides.

Fight the fight its worth it

Jeanette39 · July 2007

I found out back in January that I have breast cancer. I was told I am stage 3 triple negative. After surgery in
February I found this site and scared me to death reading
stories. I just yesterday decided to go back into the site because of feeling down and you women are great. just listening to you made me decide that laying in bed worrying
about cancer and bills are not the answer. I have already
had 5 chemo's and 3 more to go then radiation. Thank you
for the support

Jeanette

ravdeb · July 2007

Ladies..
I am also triple neg and will be celebrating my 2nd anniversary very soon.
It is my understanding that the reason they write such bleak articles about triple neg is that they haven't been able to pinpoint the receptors in this type of bc in order to find a targeted treatment. They now have herceptin and hormonal treatments for those with those receptors but those who they call triple neg are just those who don't have any receptors that they have been able to find.

There are a lot of survivors of this type of breast cancer. You may not find that many on here because many of the triple negs who get recurrence come here for support, but there are many who don't get recurrence and have not returned to the boards as they have moved on.

It's bleak to a scientist because they are frustrated that they can't find more receptors. But those who have these receptors are getting recurrence just like triple negs are. Some do and some don't. That is the mystery of this disease.

I agree that it's good to read and understand things. I'm a maniac researcher on this. But really...what we really need to do is LIVE and stop worrying about what you read on the internet about it. Get going on your life outside of cyberspace and just live!

twink · July 2007

Hear, hear ravdeb! Well put. Thank you.

Just found out yesterday am triple negative

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