TRIPLE NEGATIVE

Aortus said:

No extra reason to be afraid. Really.
My beloved Moopy was diagnosed as triple negative right after her mastectomy. Stage IIIa, 6/15 positive lymph nodes. We were too overwhelmed with the new adjustments to our life - diagnosis, meetings with specialists, drains and incisions, all that - to really pay all that much attention to what "triple negative" meant. Fortunately, we came across this board, and the ladies here (especially Mimi) helped explain to us what "triple negative" means. And, more importantly, what "triple negative" does not mean.

"Triple negative" is an unnecessarily scary term. It has a bad suggestion of "three strikes and you're out." It's also very inaccurate: it's like defining a woman as "no penis, no testicles, no beard" or (to be fair) a man as "no vagina, no uterus, no breasts." We use the term because that's the common terminology, but that doesn't mean it doesn't suck. The one and only thing "triple negative" means is that a tumor does not respond to hormonal therapy. That's it.

Moopsy and I come to look at so-called "triple negative" status as a sort of challenge. One we wouldn't have chosen, but then, one's not exactly given a choice. The bad news is that hormonal treatments will not give the extra benefit added on after chemotherapy and radiation. No getting over that disappointment. "Triple negative" cancers (I'm using the plural here) also tend to have a higher rate of recurrence. Exactly how much higher - the researchers are still arguing. On the flip side, researchers agree that this increased rate of recurrence drops off sharply after around three years out, while with other cancers, the recurrence rate continues to drop off only gradually.

I'm not trying to polish the proverbial turd here, or blow smoke anywhere. "Triple negative" is indeed a tougher than average road to walk. Yes, it is frustrating that more clinical trials aren't (yet) being done to fight against "triple negative" cancers. But we also need to keep in mind that there are lots of "triple negative" survivors alive and well and dancing with NED - the guy that every cancer survivor wants to settle down with. You can meet some of them here at breastcancer.org. Caution: not all of the stories are happy. But if you read them all the way through, as I have done, you will be encouraged to see that there is indeed a life after "triple negative" breast cancer, and that it is very much worth living.

And finally, my attempt at an answer. I am neither a woman nor a cancer patient myself, so take my words for as little as they're worth. I figure that if I'm completely off the mark, the ladies here will correct me and I will be grateful for the lesson. But what I have read here and on other BC boards tells me that one never stops fighting cancer, even during a long and happy relationship with NED. How to fight it, and how to claim as much as possible of one's life back after diagnosis and treatment, is something Moopy and I look forward to discovering in the years and decades ahead of us.

But for the time being, "triple negative" status is no extra reason to be afraid. It's more of an unwanted extra challenge. An extra challenge I hope and pray my beloved Moopy and all of her fellow "triple negatives" will someday look back upon and say "Ha! I won!"

Aortus said:

No extra reason to be afraid. Really.
My beloved Moopy was diagnosed as triple negative right after her mastectomy. Stage IIIa, 6/15 positive lymph nodes. We were too overwhelmed with the new adjustments to our life - diagnosis, meetings with specialists, drains and incisions, all that - to really pay all that much attention to what "triple negative" meant. Fortunately, we came across this board, and the ladies here (especially Mimi) helped explain to us what "triple negative" means. And, more importantly, what "triple negative" does not mean.

"Triple negative" is an unnecessarily scary term. It has a bad suggestion of "three strikes and you're out." It's also very inaccurate: it's like defining a woman as "no penis, no testicles, no beard" or (to be fair) a man as "no vagina, no uterus, no breasts." We use the term because that's the common terminology, but that doesn't mean it doesn't suck. The one and only thing "triple negative" means is that a tumor does not respond to hormonal therapy. That's it.

Moopsy and I come to look at so-called "triple negative" status as a sort of challenge. One we wouldn't have chosen, but then, one's not exactly given a choice. The bad news is that hormonal treatments will not give the extra benefit added on after chemotherapy and radiation. No getting over that disappointment. "Triple negative" cancers (I'm using the plural here) also tend to have a higher rate of recurrence. Exactly how much higher - the researchers are still arguing. On the flip side, researchers agree that this increased rate of recurrence drops off sharply after around three years out, while with other cancers, the recurrence rate continues to drop off only gradually.

I'm not trying to polish the proverbial turd here, or blow smoke anywhere. "Triple negative" is indeed a tougher than average road to walk. Yes, it is frustrating that more clinical trials aren't (yet) being done to fight against "triple negative" cancers. But we also need to keep in mind that there are lots of "triple negative" survivors alive and well and dancing with NED - the guy that every cancer survivor wants to settle down with. You can meet some of them here at breastcancer.org. Caution: not all of the stories are happy. But if you read them all the way through, as I have done, you will be encouraged to see that there is indeed a life after "triple negative" breast cancer, and that it is very much worth living.

And finally, my attempt at an answer. I am neither a woman nor a cancer patient myself, so take my words for as little as they're worth. I figure that if I'm completely off the mark, the ladies here will correct me and I will be grateful for the lesson. But what I have read here and on other BC boards tells me that one never stops fighting cancer, even during a long and happy relationship with NED. How to fight it, and how to claim as much as possible of one's life back after diagnosis and treatment, is something Moopy and I look forward to discovering in the years and decades ahead of us.

But for the time being, "triple negative" status is no extra reason to be afraid. It's more of an unwanted extra challenge. An extra challenge I hope and pray my beloved Moopy and all of her fellow "triple negatives" will someday look back upon and say "Ha! I won!"

netty45 said:

I need encouragement
I was dx'd in 2000 with stage one invasive. At the time no one told me that I was triple negative but when i heard of this i pulled my old pathology report and there it was Triple"s and grade 3. In 2000 this was not very important or discussed with me.

I was treated at memorial Sloan Kettering in NY.

I was so sick when i 1st heard of this thing i wanted to pass out.

I will be 9 years now in october. But as time goes on or gets closer to 10 years believe me you do tend to worry the same.

At times I just Feel like getiing a double masectomy. I did the gene testing and that came back negative.. I was 36 when 1st dx'd and i am soon to be 45 next month.

mimivac said:

Hi Netty,
Thank you for telling your story. It's very inspiring for us fellow triple negatives to read of a long-term survivor such as yourself!

Mimi

netty45 said:

I need encouragement
I was dx'd in 2000 with stage one invasive. At the time no one told me that I was triple negative but when i heard of this i pulled my old pathology report and there it was Triple"s and grade 3. In 2000 this was not very important or discussed with me.

I was treated at memorial Sloan Kettering in NY.

I was so sick when i 1st heard of this thing i wanted to pass out.

I will be 9 years now in october. But as time goes on or gets closer to 10 years believe me you do tend to worry the same.

At times I just Feel like getiing a double masectomy. I did the gene testing and that came back negative.. I was 36 when 1st dx'd and i am soon to be 45 next month.

mimivac said:

Hi Netty,
Thank you for telling your story. It's very inspiring for us fellow triple negatives to read of a long-term survivor such as yourself!

Mimi

PP said:

Triple Negative and 6.5 years out
You can do this!!! Beware of the net and all the negatives about Trip Negative BC. For me the hardest part was all the scary info I read. I am so sorry I wasted so much time on it. Eat well and believe you can beat this. The first few years are the hardest because of fear. Then one day you'll realize you haven't been thinking of it on a daily basis. Everytime I went for radiation I took headphones of some awsome American Indian music and pictured them dancing around me and the cancer raising to the sky. I also did phycotherapy to calm my fears. She told me to imagine sheep grazing the cancer away. I tried to eat very well and took recommended vitamins. Chemo was a little rough but I also imagined it as liquid gold cleaning my body of all cancer. Sounds kinda wierd and crazy but I am healthy and never felt better.

Was stage 2 with 2 nodes positive grade 3. Lumpectomy with brachyradiation and epicubrin and cytoxin for chemo.

51 at diagnosis

Best to you and believe you can survive.

netty45 said:

I need encouragement
I was dx'd in 2000 with stage one invasive. At the time no one told me that I was triple negative but when i heard of this i pulled my old pathology report and there it was Triple"s and grade 3. In 2000 this was not very important or discussed with me.

I was treated at memorial Sloan Kettering in NY.

I was so sick when i 1st heard of this thing i wanted to pass out.

I will be 9 years now in october. But as time goes on or gets closer to 10 years believe me you do tend to worry the same.

At times I just Feel like getiing a double masectomy. I did the gene testing and that came back negative.. I was 36 when 1st dx'd and i am soon to be 45 next month.