TRIPLE NEGATIVE
I am triple neg and feel I will be fighting this the rest of my life.
Milly
Comments
-
HER2, etc.
Hi, Milly - I just finished my treatments last week. Like you, I was a triple negative, as well. I guess our stories are very similar as I found the lump in the shower. It was a big bad boy but the surgeon and the oncologist are confident that it hadn't spread. I had a modified radical Oct 22 and began treatments shortly after that.
The odds for staying cancer-free for 10 years went to 85% with the chemo treatments (47% without treatment).
I certainly hope we don't have to fight this again.
Teresa0 -
I'm nearly triple negative
I'm nearly triple negative (5% ER positive) and was told I would not benefit from taking hormone therapy. However, after reviewing the pathology again following a lumpectomy, chemo and radiation, my Onc. and Pathologist agreed that I should take medicine. Their new opinion is that anyone who is at least 1% positive should take hormone therapy to get whatever benefit possible.0 -
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!"0 -
dancing with NEDAortus 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!"
Dancing with NED! I can't get that picture out of my head! I just can't really see NED's face--does he look sort of like Carrot Top, or is he a handsome dude, like Brad Pitt?
Lisa0 -
Hmmm Didn't know...Ltalcott said:dancing with NED
Dancing with NED! I can't get that picture out of my head! I just can't really see NED's face--does he look sort of like Carrot Top, or is he a handsome dude, like Brad Pitt?
Lisa
I am triple negative also. I am happy I do not have to do the hormone treatments. I did wonder about research though because I figured that all the research did focus on the 3 hormone types ER, PR and Herceptin. This is a question I am going to have to ask my onc about when I see her in two weeks about recurrance and if there is anything extra I need to be looking for or do? I hadn't heard that recurrance would be higher, just more of an unknown factor. There is a triple negative website out there too. mj0 -
Great Primer, JoeAortus 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!"
Yes, I totally agree. Don't let the triple negative thing get you down. It's an extra challenge, to be sure. But as Joe says, the recurrence rate goes down sharply after a few years. On the up side, if you want to look at it that way, we won't have to go through the side effects of hormonal therapy....0 -
I need encouragementmimivac said:Great Primer, Joe
Yes, I totally agree. Don't let the triple negative thing get you down. It's an extra challenge, to be sure. But as Joe says, the recurrence rate goes down sharply after a few years. On the up side, if you want to look at it that way, we won't have to go through the side effects of hormonal therapy....
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.0 -
Hi Netty,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.
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!
Mimi0 -
Welcome, netty45netty45 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.
You've joined an amazing group of fellow survivors, all here to support and encourage each other.0 -
Hi Netty and welcome!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.
Hugs
Hi Netty and welcome!
Hugs0 -
Hi and Welcome Nettymimivac 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
Netty, like Mimi said, it is great to read a long term survivor's story being a triple negative.
♥ Kylez ♥0 -
Hey Netty! Welcome! I hopemimivac 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
Hey Netty! Welcome! I hope you find lots of support on the site. Post again when you can.
Hugs, Leeza0 -
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.0 -
I'm also a triple negative,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.
I'm also a triple negative, stage Ib grade 3 invasive ductal carcinoma survivor who opted for a lumpectomy followed by chemo and radiation. I'm still in the earliest stages of treatment (having only completed surgery and 1 chemo {taxotere & cytoxan}) and I too have read all the information I could find about triple negative cancer. Yes, there's some scary (mis)information out there, but what I keep focusing on is the fact that triple negative responds VERY well to chemo. I have named my cancer "Fluffy". Yeah, you're not so big and scary NOW, are ya, FLUFFY?0 -
"Triple Negatives" please read this thread
This thread contains a brief introduction to the facts regarding "triple negative" (that is, ER/PR/HER-2 negative) breast cancer. More importantly, it also includes stories from "triple negative" survivors, some of whom who have remained cancer free for years.
Bottom line: don't believe the mountain of scary crap available on the internet about "triple negative" breast cancer. Read the short introduction, read the inspiring stories, and if you have any questions... please ask away!
Joe (Aortus)
Proud husband of a "triple negative" survivor0 -
I am also triple neg...
I am
I am also triple neg...
I am 36 with stage 2b invasive ductal CA, 2 lymph nodes involved and grade 3 cancer cells. I had a double mastectomy and just completed 8 rounds of chemo. I will be starting radiation next week.
I don't plan on being a stat, So I am trying to do everything possible.
What we all have to remember.. These are just stats and none of us know where we will fall on that curve. So try not to dwell on the survival rate..0 -
Me, Tooe_hope said:I am also triple neg...
I am
I am also triple neg...
I am 36 with stage 2b invasive ductal CA, 2 lymph nodes involved and grade 3 cancer cells. I had a double mastectomy and just completed 8 rounds of chemo. I will be starting radiation next week.
I don't plan on being a stat, So I am trying to do everything possible.
What we all have to remember.. These are just stats and none of us know where we will fall on that curve. So try not to dwell on the survival rate..
Hi, E_Hope, you're right: we all must remember that statistics are not individuals. Besides, some have to fall on the right side of those stats--might as well be us! I'm 49, was diagnosed TN, 3A in November 08. Like you, I'm doing everything possible to stay cancer-free.
Thanks for the reminder and encouragement! My best to you.0 -
NETTY,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.
I am so glad to hear
NETTY,
I am so glad to hear of your positve outcome!! I was just diagnosed 6/1/09 at age 42 with stage 1 triple negative, grade 3. I am currently going through chemo and after that radiation therapy. I have a husband and 2 kids, 6 1/2 and almost 10 year old girls. I was needless to say scared and could not find anyone with my type of cancer. Most everyone I came in contact with were 15+ years older and all have had a lumpectomy with radiation and them hormone therapy. I did not feel much support as I had only wished that if I had to get cancer why not 20 years from now? YOu give me such hope!!! Thanks for sharing!!0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards