Triple Negative Breast Cancer
May
Comments
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A friend of mine who was diagnosed two years before me had this kind of cancer. She had chemo and told me that chemo worked best on this kind of cancer. She had a lumpectomy followed by radiation and chemo, but I do not know exactly what kind. I do remember that she missed only 2 days of work that year in spite of chemo and radiation throughout the year. I just hit my 5 year anniversary last fall and she is still going strong with no reoccurances at year 7+.0
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Well, if there is a bright side, you might find it in reading just how yechy the estrogen inhibiting drugs can be (see posts). And the percentage of prevention they change is not that big. I haven't heard from women who were progesteron positive and what drugs deal with that. As for being her2 positive, that used to be a very undesirable diagnosis. There is a good drug that works to combat it now, herceptin, but it still may be better not to have that marker as it is an aggressive one. I am her2 positive and will be returning to the chemo room for the rest of the year, once every three weeks to get my herceptin infusion. It is not a chemo, so my hair will grow, but it does go hand in hand with an IV.
Incidentally, being estrogen positive does not mean that all of one's C cells are. In my case, only 45 percent are estrogn pos. So anti estrogen drugs will not do anything about the other 65 percent.
Maybe you knew all this. It sure can be complicated. I hope you have a doctor who will help with some good explanations. And maybe steer you towards some good diet and exercise goals that will empower you to feel that you are taking steps toward prevention. Best wishes, love, Joyce0 -
Hi cabbottcabbott said:A friend of mine who was diagnosed two years before me had this kind of cancer. She had chemo and told me that chemo worked best on this kind of cancer. She had a lumpectomy followed by radiation and chemo, but I do not know exactly what kind. I do remember that she missed only 2 days of work that year in spite of chemo and radiation throughout the year. I just hit my 5 year anniversary last fall and she is still going strong with no reoccurances at year 7+.
Thanks ever so much for telling me about your friend. It is very encouraging to hear stories like yours and your frend's. Many of the articles on the internet on triple negative is quite discouraging but like your friend said, so also my doctor, chemo and radiation works on this type of breast cancer. Thanks once again for taking the time to encourage me on my battle. Congratulation to you for overcoming the beast and remain blessed in the Lord.0 -
Hi Joyceunknown said:Well, if there is a bright side, you might find it in reading just how yechy the estrogen inhibiting drugs can be (see posts). And the percentage of prevention they change is not that big. I haven't heard from women who were progesteron positive and what drugs deal with that. As for being her2 positive, that used to be a very undesirable diagnosis. There is a good drug that works to combat it now, herceptin, but it still may be better not to have that marker as it is an aggressive one. I am her2 positive and will be returning to the chemo room for the rest of the year, once every three weeks to get my herceptin infusion. It is not a chemo, so my hair will grow, but it does go hand in hand with an IV.
Incidentally, being estrogen positive does not mean that all of one's C cells are. In my case, only 45 percent are estrogn pos. So anti estrogen drugs will not do anything about the other 65 percent.
Maybe you knew all this. It sure can be complicated. I hope you have a doctor who will help with some good explanations. And maybe steer you towards some good diet and exercise goals that will empower you to feel that you are taking steps toward prevention. Best wishes, love, Joyce
Thanks for sharing with me about your journey with HER2 positive BC. I have had about herceptin and thank God it does not have the same side effects as many of the chemotherapy drugs. I am HER2 negative and from what my doctor said, there is no drugs at the moment to be prescribed after 6 cycles of chemo and radiation. I understand a lot of research is being conducted towards this goal and by the grace of God, they will find something triple negative survivals can take after the above mentioned treatments. On the other hand, I understand that triple negative BC though very aggresive, is responsive to chemo. I have only had one session of chemo and will be going back for my second (three weeks interval) on June 13. The first knocked me down so badly that it took me a week to function somehow. I pray and hope that the second will not be as bad.
Like you said, a good diet (low fat diet) and exercise is very crutial after treatment.
Joyce hang in there and my prayer for you is that at the end of the herceptin treatment, you will be cancer free. Have a wonderful Sunday and remain blessed in the Lord.
May0 -
I was dx with triple negative breast cancer in December 04. At the time my doctors described it as this gansta standing across the street wearing leather and chains... kind of a scary metaphor! But I've been in remission for 3 years now. Please feel free to contact me with any questions - I'll try to answer them for you. I also blogged my journey on my personal page - Coug90.
God Bless,
Sharon0 -
Hi Sharoncoug90 said:I was dx with triple negative breast cancer in December 04. At the time my doctors described it as this gansta standing across the street wearing leather and chains... kind of a scary metaphor! But I've been in remission for 3 years now. Please feel free to contact me with any questions - I'll try to answer them for you. I also blogged my journey on my personal page - Coug90.
God Bless,
Sharon
I finally found some one who has gone through the journey of triple negative breast cancer. I thank the Almighty God for your life because everything I had read about this diagnosis seemed very negative - like it is the worst type of breast cancer. I believe that God has the final say in our lives. I visited your personal page and your story is very facinating and encouraging. I will like to know what you have been doing to keep fit and what type of diet are you on since after your treatment? Hugs and remain blessed in the Lord.
May0 -
I too have triple negative breast cancer. I had a mastectomy and reconstructive surgery (trap flap). I was lucky I only had one lymph node that was involved. They put me on a trial that consisted of 4 treatments of A/C each was 2 weeks apart. I finished the Chemo the last week in May and I still feel crummy. My abdomen hurts after 4 months now. I am looking for others who could guide me as to when the pain will subside. When will I feel normal? Where are you at in your treatment? I wish you the best.... God Bless dancingfan0
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triple negative
Hi: I'm triple negative, and was diagnosed at 46. My first onc gave me a "poor prognosis"..and I was a hospice nurse then...which meant 6 months or less to me. I went for a second opinion, was given a green light to life, and did the chemo and radiation treatment. Now I have 40 extra pounds to lose. So, I hired a personal trainer, get a message every other week, changed hospitals/doctors again...to one that focuses more on recovery after treatment. They offer cooking classes and exercise specific to us. I'm taking a Tai Chi class soon. How do I do this and work? I don't work much....I have cognitive side effects that impair me still. I have borrowed money from a relative and am pursuing other financial means. I AM going to do whatever I can to add to the preventive piece because these other things ARE my medicine. I'm a squeaky wheel with my insurance company, etc. As long as I get the "grease" I need...I'll keep squeaking! ha.
lois0 -
triple negative
Sorry, I haven't been on-line in awhile and just saw your question. I was diagnosed in 2002 with triple negative breast cancer. Like you I was kind of horrified by all the negative (no pun intended) things I was reading about this particular type of breast cancer. In May of this year I had my 6th anniversary with no recurrence -- hooray! The good news is, like many other people here have noted, chemo tends to work more effectively for women with triple negative breast cancer. And while rates of recurrence are initially higher among women who are estrogen/progestrin negative, once you pass the 5-year mark the statistics even out and you have no greater risk of recurrence than the women who are estrogen positive and have been taking Tamoxifen, Arimidex, et al. Of course getting to the 5-year mark can be a bit unnerving. Being triple negative sometimes feels a bit like being the orphan child of breast cancer, but not all the news is bad. Plus there is lots of research going on now for treatments down the line for triple negative disease. Good luck -- I'm sure you'll do great.0 -
What's now?epgnyc said:triple negative
Sorry, I haven't been on-line in awhile and just saw your question. I was diagnosed in 2002 with triple negative breast cancer. Like you I was kind of horrified by all the negative (no pun intended) things I was reading about this particular type of breast cancer. In May of this year I had my 6th anniversary with no recurrence -- hooray! The good news is, like many other people here have noted, chemo tends to work more effectively for women with triple negative breast cancer. And while rates of recurrence are initially higher among women who are estrogen/progestrin negative, once you pass the 5-year mark the statistics even out and you have no greater risk of recurrence than the women who are estrogen positive and have been taking Tamoxifen, Arimidex, et al. Of course getting to the 5-year mark can be a bit unnerving. Being triple negative sometimes feels a bit like being the orphan child of breast cancer, but not all the news is bad. Plus there is lots of research going on now for treatments down the line for triple negative disease. Good luck -- I'm sure you'll do great.
I've just become a CSN network member and am looking for the info about triple negative. I was diagnosed about same time as you were and finished chemo and radiation two weeks ago. Now, I am thinking what's now. No targeted therapies are available for us. Exercise, good diet, mental health, good sleep...I can do many good things for me. I still feel fear being a triple negative. It is great for me to read all the experience that you went through.
Kimi0 -
triple negative breast cancer
I too was diagnosed with triple negative breast cancer.. I started A/C treatment in January and was done by end of February I started taxol in March and I am done with treatment #10 with only 2 more to go.. I lost most all my hair in February and just shaved it all off. with A/C I did have some nausea but with the meds my doc Rx I did fine.. the Taxol has been a piece of cake... in fact I have hair regrowth.. if you want to know any other things please let me know..0 -
Just wondering how you all are doing now?dmdudra said:triple negative breast cancer
I too was diagnosed with triple negative breast cancer.. I started A/C treatment in January and was done by end of February I started taxol in March and I am done with treatment #10 with only 2 more to go.. I lost most all my hair in February and just shaved it all off. with A/C I did have some nausea but with the meds my doc Rx I did fine.. the Taxol has been a piece of cake... in fact I have hair regrowth.. if you want to know any other things please let me know..
My sister just lost her battle with triple negative after 3 1/2 years of fighting for her life. However, now that I look back I wonder why they didn't keep giving her the chemo since it was working so very well for her! She was tired of it and asked for a break, at that point the cancer took over.
Has anything new been found to help with this?0 -
I am so sorry about yourMama G said:Just wondering how you all are doing now?
My sister just lost her battle with triple negative after 3 1/2 years of fighting for her life. However, now that I look back I wonder why they didn't keep giving her the chemo since it was working so very well for her! She was tired of it and asked for a break, at that point the cancer took over.
Has anything new been found to help with this?
I am so sorry about your sister Mama G. The other posts are old, so, I don't know if any of them will post back to you. I hope so. If not, you might try private messaging them on here.0 -
Triple Negative Club Member
Hi May,
I hold a membership card to the Triple-Negative Receptor Club..Welcome to you! It is not as bad as it sounds. When I was diagnosed I had immediately told my Dr. that I wanted a bi-latteral mastectomy with reconstruction. My oncologist ran the test for the BRAC1/2 gene because of my family history and sure enough I'm a member of the Carrier Club too! I was told that the cancer had not ventured into the lymph nodes when they did the biopsy but I was a Stage 1 Grade 3 patient. Because the grade was a 3 the treatments were very agressive. They gave me 4 AC chemo treatments followed by 16 weeks of Taxol. I cannot take any of the preventative medications but did have my ovaries removed and a hyst that was done years ago. They tell me that after all of this I should not have a reoccurance of BC again. Knowing that you do not qualify for the follow up medications is the hardest part to adjust to. Talk with you doctor and get all the information you can on your dx. This will help you as you move through the treatments. Feel free to ask any questions you want or to compare notes with me as you go through this, I will be more than happy to share my experience. God Bless.
Tracey0 -
My cancer was not Triple Negative, but CLOSE!!!TLynn0102 said:Triple Negative Club Member
Hi May,
I hold a membership card to the Triple-Negative Receptor Club..Welcome to you! It is not as bad as it sounds. When I was diagnosed I had immediately told my Dr. that I wanted a bi-latteral mastectomy with reconstruction. My oncologist ran the test for the BRAC1/2 gene because of my family history and sure enough I'm a member of the Carrier Club too! I was told that the cancer had not ventured into the lymph nodes when they did the biopsy but I was a Stage 1 Grade 3 patient. Because the grade was a 3 the treatments were very agressive. They gave me 4 AC chemo treatments followed by 16 weeks of Taxol. I cannot take any of the preventative medications but did have my ovaries removed and a hyst that was done years ago. They tell me that after all of this I should not have a reoccurance of BC again. Knowing that you do not qualify for the follow up medications is the hardest part to adjust to. Talk with you doctor and get all the information you can on your dx. This will help you as you move through the treatments. Feel free to ask any questions you want or to compare notes with me as you go through this, I will be more than happy to share my experience. God Bless.
Tracey
I didn't ask too many questions out of fear, but I am more confident now that I've been on this website and will come prepared at the next Onc appt.
One of my "triples" was 5% positive.... The first onc was saying it's the same as triple negative, but the second was so upbeat and happy that it was positive she gave me a big
hug!0 -
Hi Blessing, I was dx with triple neg bc in July 09. Stage 2, tumor grade 3. Lymph nodes clear, had a simple mastectomy and the pathology report came back absolutely no cancer cells in the breast tissue. I just completed 4 cycles of Cytoxin/Taxotere 12-11. Becasue of my pathology report I do not have to have rads. Initially I was terrified by the triple neg but not anymore. Chemo loves aggressive tumors and works well. There is research being done but it's for more advanced cases which gives me hope should this recur.
Don't let all the negative talk about triple neg bc freak you out. Google it in and you'll find tons if info on it. My onc was and is very upbeat about it. There is a Triple Neg BC website but I found most everyone to be very negative and not at all supportive like this wonderful website.
My onc said I have a 15% chance of recurrance and I just am going to live my life and not worry that triple neg bc is "so much worse". Educate yourself about it and you'll feel so much better. I know I certainly do. We are all in this together and we are lucky to be surrounded with such great support.
Hugs, Judy :-)0 -
I could have been tripleSkeezie said:Hi Blessing, I was dx with triple neg bc in July 09. Stage 2, tumor grade 3. Lymph nodes clear, had a simple mastectomy and the pathology report came back absolutely no cancer cells in the breast tissue. I just completed 4 cycles of Cytoxin/Taxotere 12-11. Becasue of my pathology report I do not have to have rads. Initially I was terrified by the triple neg but not anymore. Chemo loves aggressive tumors and works well. There is research being done but it's for more advanced cases which gives me hope should this recur.
Don't let all the negative talk about triple neg bc freak you out. Google it in and you'll find tons if info on it. My onc was and is very upbeat about it. There is a Triple Neg BC website but I found most everyone to be very negative and not at all supportive like this wonderful website.
My onc said I have a 15% chance of recurrance and I just am going to live my life and not worry that triple neg bc is "so much worse". Educate yourself about it and you'll feel so much better. I know I certainly do. We are all in this together and we are lucky to be surrounded with such great support.
Hugs, Judy :-)
I could have been triple negative and didnt know it. My first primary was 15 years ago, all they tested for was estrogen pos or neg. I was neg. I had 6 months of CMF. I am estrogen pos now. anyway certain cancers are more aggressive and everyone wants to be on that "good" percentAGE. of course. but mostly it determines what they giveyou for treatment. .You can have no nodes and survive and lots of nodes and survive. I asked them to not give me percentages. Just would not be helpful BC is survivable and thats what I want to focus on for myself and for all of you . HUgs0 -
Amen....and Thank You, Carkris!carkris said:I could have been triple
I could have been triple negative and didnt know it. My first primary was 15 years ago, all they tested for was estrogen pos or neg. I was neg. I had 6 months of CMF. I am estrogen pos now. anyway certain cancers are more aggressive and everyone wants to be on that "good" percentAGE. of course. but mostly it determines what they giveyou for treatment. .You can have no nodes and survive and lots of nodes and survive. I asked them to not give me percentages. Just would not be helpful BC is survivable and thats what I want to focus on for myself and for all of you . HUgs
Thank you for your powerful and simple statement of facts. BC is survivable, whatever percentages may be cited, and however any oncologist may interpret them.0 -
I wish that they wouldn'tcarkris said:I could have been triple
I could have been triple negative and didnt know it. My first primary was 15 years ago, all they tested for was estrogen pos or neg. I was neg. I had 6 months of CMF. I am estrogen pos now. anyway certain cancers are more aggressive and everyone wants to be on that "good" percentAGE. of course. but mostly it determines what they giveyou for treatment. .You can have no nodes and survive and lots of nodes and survive. I asked them to not give me percentages. Just would not be helpful BC is survivable and thats what I want to focus on for myself and for all of you . HUgs
I wish that they wouldn't give us percentages unless we ask. I agree with carkris on what she wrote. Bc is survivable and we need to focus our attention and energy on that!0 -
I'm triple negative
Hi Blessing, I was dx in august this year with triple negative bc stage 3c with a 6cm tumor. I have completed 4 a/c and 9 of 12 taxol. My chemo will be done jan. 14th then I will undergo a bilateral mastectomy, all lymph nodes and both ovaries in mid feb. I too was very scared when I was first dx because of the stuff I read on the internet. My doctor told me I have a 30% chance of putting it into remission over a five year period, I guess that five year mark is the magic number. I take it one day at a time, after all that's all we have is today, yesterday is gone and tomorrow isn't here yet. I am a fighter and I don't let my diagnoses get me down, I try real hard to stay focused on one day being cancer free. I'm 38 years old with a son in high school and a daughter in college, my daughter has been by my side every step of the way, she is a nursing student and bless her heart for asking all the questions I didn't know how to ask. Our fight may be a little longer or a bit more difficult but their are many who have beaten this beast and so can we. I'm a bit scared of the upcoming surgery but that too is another step closer to cancer free. We can do this!!
Hugs and prayers,
Kari0
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