Tuesday, February 17, 2009

Surviving Triple Negative Breast Cancer

If you’ve been diagnosed with hormone negative breast cancer, your doctor may have frightened you with the terms aggressive or lethal. Yes, this cancer is more on the march than estrogen positive, but it is survivable—and most women do survive it.  That fact too often gets lost in research reports.

Some stats.

63 percent of women with triple-negative status survive progression-free for three years, compared to 76 percent of hormone-positive women. That’s a lower number, but it still means most women survive. This comes from research in the International Journal of Cancer.

Women with hormone negative had a lower risk of recurrence at five years than hormone positive, according to research at the University of Texas M.D. Anderson Cancer Center. Five years after beginning therapy—chemotherapy, radiation, tamoxifen or all three—those with hormone negative disease faced a seven percent chance of recurrence, while those with hormone positive had a 13 percent chance. Or looking at it another way, 93 percent of those with hormone negative survived after five years while 87 percent of those with hormone positive did.

Docs say that, because more hormone-negative cases relapse within the first three years, women with this disease who are disease-free at five years have especially good odds. And at five years post-diagnosis, they have a better prognosis than women with the less lethal form of cancer.

Get more details on this topic in my book, Surviving Triple-Negative Breast Cancer.


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Source: Bertucci F, Finetti P, Cervera N, et al: “How basal are triple-negative breast cancers?” International Journal of Cancer. 123:236-240, 2008.

Source: Brewster AM, Hortobagyi GN, Broglio KR, Kau SW, Santa-Maria CA, Arun B, Buzdar AU, Booser DJ, Valero V, Bondy M, Esteva FJ. “Residual risk of breast cancer recurrence 5 years after adjuvant therapy,” Journal of the National Cancer Institute, 100(16):1179-83. 2008.

28 comments:

Denis & Harriet said...

I'm so happy to read all this positive stuff about something so negative--pardon the pun...Keep up the good work in all ways. Please share your thoughts on the FB group: Triple Negative Breast Cancer Survivors...

thanks

denis

Patricia Prijatel said...

Denis: Thanks for your note. Your cottage in Maine looks wonderful! Maybe we will visit one of these days. Maine is one of the few states I have yet to visit. (Along with New Hampshire, North Dakota and Hawaii.)

I will check into your facebook page. However. I am technically not a TNBC survivor--I am an odd duck, with ER-, PR weakly positive, and HER- negative. So there is almost no research on folks like me.

TNBC research, however, is really coming along--the disease has captured the interest of important researchers. So we are learning more and more about the disease, with the hopes of improving therapies and survival. Remember, though, most women do survive!

The Texas Woman said...

Thank you for this encouraging post. I found a message about it on our TNBC website.

Patricia Prijatel said...

Thanks, Texas! We do not hear enough good news, so I am trying to change that at least a little. Take care. Pat

Anonymous said...

Hello, my mom was just diagnosed with TNBC; a 3cm by 2 cm mass with lymph node involvement. Needless to say we are terrified but at least her scans show no metastasizing anywhere else. Our oncologist hedged on giving us our odds, but reading this has made me feel a little better. My mom is only 63 and has alot more living to do!! Please keep updating the positive info!

Patricia Prijatel said...

Anon: My best to you and your mom. Researchers are discovering subsets of TNBC, so it is not a one-size-fits-all disease, which may be why the doc was uncomfortable giving odds. Most women do survive it, though, and that should be your focus. Not having it spread elsewhere is good news. We'll pray that your mom will be with you when you celebrate your 63rd birthday. (I was 60 at diagnosis and am nearing my 65th now, so I am giving you a virtual hug for saying ONLY 63! And a virtual hug for your mom as well.) Pat

Anonymous said...

Thanks so much Pat. She just had her second dose of Taxol 3 days ago. She has been doing fabulous but last night she started with a low grade temp. (99.6-100) I panicked but today she feels better and the temp is hovering around 99. I think she'll get through the Taxol okay, but then the docs are hitting her with A/C every two weeks for four cycles...eeek! Then surgery, then radiation...
I have to say, everyone yells at me for reading things about TNBC online, but I come to your site for comfort and reassurance as well as accurate information.
Thank you so very much, and I'll definitely be around for more info!
Lisa

Patricia Prijatel said...

Lisa: Thanks for the update. Your mom remains in my prayers. Chemo is no picnic, but we do get through it. It is a distant memory for me now. Make sure she eats well and gets at least a little exercise. That will help physically and mentally. And take care of yourself as well. Pat

Anonymous said...

I was just diagnosed with TNBC and am 45 yrs old. I'm going to be doing ACT, surgery, then radiation. I had no idea the grim outlook for TNBC patients....

I called my doctor to see what my stats were....

I was so happy to something positive! I really think I can beat this, but when you read you have 3 yrs, it gets pretty scary.

So, thank you! I hope my doctor can keep the news positive too! :o)

Anonymous said...

I just realized the impact of being negative, but am glad to see it really isn't! I am TNBC and was horrified with what I was finding out about the diagnosis.

I'm glad to see that I still have a fighting chance to be a survivor!

Patricia Prijatel said...

I have been interviewing women who have survived triple-negative for many years (one has survived estrogen-negative for more than 30 years) and have found many wonderful stories to tell than demonstrate that this is a survivable disease and that most women go on after a diagnosis to live full lives. The fact is that most women survive--the numbers vary from study to study and depend on the stage of your cancer. Triple-negative, in general, is more aggressive than hormone-positive. But not all cases are aggressive, and even those can respond to therapy. Take heart. Take care of your whole body and your spirit. And don't give in. And overlook the doomsday reports. You are all in my prayers. And I pray a lot.

lisa said...

I am a 3neg and also a soon to be 9 yr survivor (PS 3 nodes involved did AC and Tax) Hang in there ladies still NED!!!!

Jana said...

Just diagnosed with my second triple negative breast cancer. First in 2002 - no lymph node involvement - mastectomy. This one in other breast with lymph node involvement. Have mastectomy scheduled with 6 mos chemo and maybe radiation. Anyone else having their second battle?? Thanks. Jana

Patricia Prijatel said...

Jana: Would you email me? I recently interviewed a woman who had estrogen-negative nsome 28 years ago (before TNBC had been isolated) and then TNBC six years ago. I can tell you more about her and, if possible, connect the two of you. I do know of another woman who had a second primary cancer in the second breast, six months after the first diagnosis. The fact that you are nine years past the first dx, I would think, would be good news. I am at patricia.prijatel@drake.edu. Pat

zee said...

Hi.I am 43 years old and was recently diagnosed with triple negative stage 3 breast cancer. I am due for my 3rd chemo in 2 days.I am trying to deal with the diagnosis and scared for myself and my family. I have a 12 year old daughter and I pray everyday that I am here to see her grow up.
My prayers for all the fighters and survivors out there.

Beth in Naples, FL said...

I was diagnosed with TNBC 9/30/10 at the age of 47. Stage IIa, no lymph node involvement. Divorced mom with one daughter - age 12 at the time. I did 4 rounds of AC chemo and have 2 rounds left (of 4) with Ixempra before starting 6 weeks of radiation. (The Ixempra is part of a clinical study, using it rather than Taxol). My fear of recurrence is already overwhelming some days, mostly because I read that, if it comes back, it does so quickly and with a vengeance and death is pretty much inevitable and equally quick. I wonder how I'm going to get through five years of that hanging over me - but praying that I get to find out! The emotional aspect of it all is far tougher to deal with than the physical.

diane said...

Pat

I was diagnosed in January after a clean mammogram in 4/10! I found it through my own breast exam. I was stage 1; grade 2; with no lymph node or vascular involvement. I had a bilateral mastectomy. Tumor was 2.1 centimeters. Hd 4 dose dense AC and hallway through dose dense taxol. What next for me. No radiation recommended. Do I need anything after chemo. Love your site. Diane

Patricia Prijatel said...

Diane: There is no follow-up treatment right now for TNBC. Chemo is especially effective against TNBC, however. Doctors sometimes say that we TNBC folks get our treatment early on--chemo--rather than over five years--tamoxifen. Try to eat well, lots of veggies and fruits, and exercise. And celebrate being done with chemo. Thanks for writing, and take care. Pat

Karen said...

Hi all. I was first diagnosed with bc in 1994 aged 31. This was before testing for hormone positive etc so don't know what type of cancer it was. 1cm lump no node involvement grade 2. had lumpectomy/radiotherapy but no chemo. Diagnosed in Jan 2009 aged 46 with new primary in other breast. Triple neg 1.2cm lump, no node involvement grade 3. had chemo FEC and radiotherapy. I had 15 years between incidences and am approaching 3 years disease free...God willing. There is no genetic link for me ( Grandmother, mother and 2 sisters all fine ) so I am at a loss to know "why me?" but would like to give encouragement to others that you can survive this x

shaune said...

I was diagnosed with TNBC in January after a clean mammogram in October 2010. I felt the lump in November and in January could see it. So called the Doc. Mammogram, ultrasound and biopsy lead to the words no one wants to hear... "there's cancer in there".

I had a mastectomy, tumor was 1.7 cm, no lymph nodes affected. went through dose dense EC for 8 weeks, then 12 weeks of Taxol. finished chemo the last week of June. Just started getting my eyebrows back this week. No family history, had the genetic testing which came back negative. Am very much looking forward to living long and happily!

Anonymous said...

Im a 31yr old Native American female diagnosed with TNBC Stage 2b with 1 node positive, no family history on each side and im currently on my 3rd cycle of AC then will start my T at the end of September. I was diagnosed in April '11 I found the lump doing a self examine. Reading this has given my more positive vibe im going to be this :) Thank you!

Anonymous said...

Hi everybody,

I was diagnosed with TNBC in Feb-2011 at the age of 32. No family history.

On 26 of May 2011 I undergo right radical mastectomy with axillary clearance, left prophylactic mastectomy; prophylactic laparoscopic supra cervical hysterectomy and bilateral salpingo-oophorectomy in the context of IIb triple negative right breast cancer, status post neodjuvant chemotherapy and the presence of positive BRCA 1 gene mutation.

I had my last cycle of chemotherapy August 9, 2011.

In October 2011 I will finish my radiation (5 weeks of radiation on my right chest wall and neck area.)

Wow! A lot of things happened during this year...
A lot of difficult decisions...
A lot of physical pain...
A lot of emotional struggle...
Family...
Work...

Now, when I am almost done with all my treatments, I am looking back, and I can say that I am very proud of myself.

I want to say thank you to my life. I have seen great support from my friends and my boyfriend. I met a lot of new nice people during this time. And it helped me a lot to realize that half glass of water, half full but not half empty.

I am very positive about future, about my life, which I want to grab back.

I want to hug and kiss my mom and daughter, who do not know about anything. I want to say how much I love and I miss them. And I will do it very soon.

I want to wish to all of you a good health, stay positive, good people around you, and love your life.

I am going to the hospital now, which is 2 hours drive from my home, to visit somebody I never new before, but somebody I really care about. I want to give my support to the yang 27 year old men who was diagnosed with leukemia and who hes nobody from his family and friends next to him.

I wish you all a good day!

Victoria said...

Hi everybody,

I was diagnosed with TNBC in Feb-2011 at the age of 32. No family history.

On 26 of May 2011 I undergo right radical mastectomy with axillary clearance, left prophylactic mastectomy; prophylactic laparoscopic supra cervical hysterectomy and bilateral salpingo-oophorectomy in the context of IIb triple negative right breast cancer, status post neodjuvant chemotherapy and the presence of positive BRCA 1 gene mutation.

I had my last cycle of chemotherapy August 9, 2011.

In October 2011 I will finish my radiation (5 weeks of radiation on my right chest wall and neck area.)

Wow! A lot of things happened during this year...
A lot of difficult decisions...
A lot of physical pain...
A lot of emotional struggle...
Family...
Work...

Now, when I am almost done with all my treatments, I am looking back, and I can say that I am very proud of myself.

I want to say thank you to my life. I have seen great support from my friends and my boyfriend. I met a lot of nice new people during this time. And it helped me a lot to realize that half glass of water, half full but not half empty.

I am very positive about future, about my life, which I want to grab back.

I want to hug and kiss my mom and daughter, who do not know about anything. I want to say how much I love and I miss them. And I will do it very soon.

I want to wish to all of you a good health, stay positive, good people around you, and love your life.

I am going to the hospital now, which is 2 hours drive from my home, to visit somebody I never new before, but somebody I really care about. I want to give my support to the yang 27 year old men who was diagnosed with leukemia and who hes nobody from his family or friends next to him.

I wish you a good day!

Kelly with a strong sister said...

My 34 year old sister was diagnosed with TNBC a year ago & my mother died 14 year ago from breast cancer at the age of 44. I just knew this was going to happen to my sister as well. Watching her be so strong through everything plus your info on this has made me feel much better & I have a more positive outlook on her recovery. We were both tested positive for the breast cancer gene mutation & because of that I have gone to see a specialist & now waiting on approvel from the insurane to have reconstruction & overies removed. I have 2 young boys & a loving husband that I want to spend a lot of time with!!! Thank you again for posting such positive things to make me feel so much better!! You are truly making a differance!!

Anonymous said...

Reading these comments gives me hope. I am going through my second TNBC encounter. Knowledge is power.

mujum said...

I am in UK and have TNBC tumour 4cm x 3 cm, mixture of basal and luminal cells. Have just had neo adjuvant chemo - 2 cycles of EC which did not shrink the tumour; and then 2 cycles of docetaxel which didn't shrink it either. There is some evidence of central necrosis but the decision is to go to surgery asap, within the next 10 days (and 4 weeks after last chemo infusion). Then 15 sessions of radiotherapy.
Do you have any stats of TNBC survival following chemo resistance?

Patricia Prijatel said...

Unfortunately the stats I have been able to find do not break down the survival rates based on specific chemo resistance. But, remember that we are all individuals, which means we respond to treatment differently. Other therapies, such as surgery and adjuvant chemo, might work better for you. I'll be praying that's the case.

Anonymous said...

This was quite good to read. I am a 14 year survivor, and guessing I was triple negative since I was er and pr neg, but that was before Her2 testing. Nice to read something positive!