Triple Negative Breast Cancer and Chemotherapy
I just wanted to know that if chemotherapy is suppose to work so well with triple negative breast cancer then how come so many women with TNBC experiences recurrences and loose their lives to this disease. I feel like i have been duped by my chemo oncologist, her nurse, and by doctor who performed my surgery. They mislead me into thinking that i would be cured if i take the treatment. My doctor and her nurse both explained to me that as long as i had taken the treatment i would not have to worry about the cancer returning again. That is exactly what was told to me by the the 3 of them. I am so angry i don't know what to do. I did not know that TNBC was as bad as it was until i read about it online. My doctor never explained to me how deadly this disease is. I am terrified to death. I strongly belive i am going to die. I feel like i am living with full blown aids and that i am going to die at any time now. Also, what is the use of going to the follow-up appointments now if the cancer is not going to be curable if it returns again. Now my doctor is telling me that if i get breast cancer again, it won't be cureable unless it returns in the breast again. She never explained this info to me before. The only reason she is explaining it to me know is because i told her that i feel like i was tricked into taking chemo. This makes me not even want to go back to any of my follow up appointments now because i feel like what is the use in going if it won't be cureable anyways if it returns. Sorry to babble on and on and on, but i am just so scarred and upset.
Comments
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With the return of your disease the goaled becomes managing your disease. This is why you see the new ads saying cancer treatment in the future will be like diabetes and that you manage your disease long term...not a cure. ANY cancer that can not be removed with surgery after your recurrence is considered to be Stage IV and you will be on treatment the rest of your life. A very small amount of people can get remission with inoperable disease.
The thing to remember is many ladies can live a long time with mets. I've meet women out fifteen years with mets. With new research hopefully TN ladies will be able to do this also.
You need to remember that not all TN's are the same disease and the doctor does not know how you will respond to treatment. They give you the benefit of doubt that you will respond to treatment and research is coming that will help you in the future if you need it.
Flalady
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Janice: Having TNBC is not a guarantee for mets. There are many TN ladies on this board who have not had recurrence and I am sure they will be here soon to reassure you. There are some posts that describe their success stories that should help you to feel better. Your medical group should have been more honest with you, and if you have lost your trust in them, then maybe you should look for another provider. There are many things you can do to help yourself.... learn everything you can about TNBC, and whatever you can do to prevent recurrence. I pray that you will be among the lucky ones who will not go on to stage IV... there are many who don't. Best of luck to you.
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I had TN almost 5 years ago. Unfortunately, I developed a new bc in my other breast that was not TN so I had BM thi time. There is no evidence of its return anywhere. I am more concerned about my new bc that is ES+/PR+
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JaniceW - I was in so much pain the day the doctor told me about having TNBC that I didn't fully comprehend what he was saying and realized now why he kept asking if I had questions and did I want to talk. However, when I did research the next day after I had more time to absorb what I was being told and felt like I had been given a death sentence. Much to my relief I found the threads on this website filled with positive thoughts which have made me feel so much better. I know we can fight the fight - we will win this battle!!
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I'm so sorry that you onc and team have been less than truthful with you. TN is a highly aggressive form, with fewer treatment options than other types.But, take a step at a time-you may or may not get a recurrence, so please try not to live your life expecting the worst to happen. In that way, cancer has truly won. But, I would be very tempted to find a new team-any onc that guarantees a cure is a charlatan, and not to be trusted.
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There are no guarantees in any healthcare, especially any form of cancer. Triple negative breast cancers tend to be aggressive, grade III, and they do indeed seem to respond to chemotherapy quite well. The more common forms of breast cancers, that are hormone positive, have follow up drugs like Tamoxifen that can lesson the chance of recurrance long term, unfortunately there are no drugs like that for the triple negs. Without chemo your chances of recurrance were quite high, most all of us with triple neg have chemo - it's our best chance at long term survival.
Breast cancer of any kind is not fatal if it is only in your breast, it is once it has moved to another part of the body that it is a problem. That's why you want to be vigilant in your "follow-up" appointments, in hopes of catching a recurrance before you have it widely spread. My grandmother had breast cancer (hormone positive, not negative) that spread to her bones, so it was then classified as "terminal". She lived with "terminal" BC mets to the bone for 17 years! And it was the diligence and medical care she recieved at MD Anderson in Houston that kept her alive, without that she wouldn't have lasted 6 months.
You need to read the two threads about POSITIVES about negatives, and the stories of long term survival - try and focus on those. If those are your two babies in your avatar, you owe it to them to work thru these feelings & emotions, and do everything you can medically to survive. I would also suggest you find new doctors. Obviously your faith is gone in the ones you have now, so a change is what you need. I changed doctors & hospitals after my surgery, I am very grateful that I did. My new docs are amazing in their thoroughness, explaining everything that happens to me in great detail. My original surgeon was a pompous ass that brushed off my questions and most certainly never told me what I needed to know. I promise you, there are better doctors out there!
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Read research done by Dr Lisa Carry at Duke Univ., she is the top TN researcher right now.
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Thanks to everyone here for answering my question. I feel a little better now. Its nice to know that there are good positive women here on this site that i can talk to.
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Janice,
I am appalled to hear that your doctors assured you your cancer would not return if you did chemo. No one can make you that kind of promise. I'm not sure where you are in your course of treatment, but chemo is the most potent weapon we tri negs have. You should feel good knowing that you are giving it your best shot. If your cancer responds well - and many tri negs do - you should have an excellent prognosis. Another positive about triple negative is that while we do have higher recurrence rates early on (in the first 2-3 years), after that our risk drops significantly. Not so for our hormone positive sisters. As my onc put it, in the long run we are better off. Do keep with your follow up appointments- but they should probably be with a doctor you trust. You will find many encouraging stories of long term survivorship of TNBC here on this forum. Check out the positive about negative thread on this forum, too. Best to you.
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I strongly suggest you hire a new team to manage your follow up. I have fired my surgeon and hired another. Here's why: Finished my treatment (lumpectomy, chemo, radiation) in mid-Apr. By July I'd worked up the nerve to do a self-exam and felt a lump. Talk about scared! The next week I had my port removed and mentioned the lump to my surgeon. He felt it and said I shouldn't get neurotic about it and just get my scheduled late Aug. mammogram. Three weeks later I had a follow up appt, and again brought up the lump, which he again felt. He said I was driving myself crazy about this and I should get the mammogram and he'd see me again in mid-Sept. Well, I knew I'd be a basketcase by then, so I went to see my breast nurse coordinator and she got me the mammogram and ultrasound that day and there were three lumps, Turns out they were cysts and I'm being checked again in Nov. But I did tell my breast nurse coordinator that I wanted another surgeon with a little more compassion to go along with the skills. She knew just the person and I'm all set, just in case. So you go get a new team that you feel comfortable with and who will work with you on a more compassionate level.
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After surgery (and/or radiation for local control), 3rd generation chemo reduces residual risk by approx 50%. Certain studies and anecdotal evidence suggests that a low fat diet and moderate exercise (8-10 hours per week) further reduce the risk residual after that by approx 40%.
For example, if after surgery the 10 year risk of recurrence for a particular person is 50%, it can be reduced to 25% by chemo and to 15% with low fat diet and moderate exercise on top of chemo.
We owe it to ourselves to maintain a healthy lifestyle with low fat diet and moderate exercise.
We can not control whether the cancer returns or not.
We can however control our diet, exercise, atttitude and how we enjoy life.
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Hi,
Your friend went to the #1 best cancer hospital in the US, and that is why when I found out last Friday I am triple negative, I have asked my surgeon to please cancel my bi-lateral surgery scheduled for this Thursday here in FL and I intend to go to UCLA Jonsson Comprehensive Cancer Center (JCCC) in Santa Monica CA. It has been continually rated #1 by US News and World Report as the #1 Best Breast Cancer Hospital in California and is in the top 10 in the Nation along with MD Anderson Cancer Center in Houston TX. Thank the lord we have these these wonderful hospitals and these dedicated people doing research. Hercepten was researched and developed at JCCC. The Dr I hope to have is Dr Sara Hurvitz who write papers, does studies and organizes trials on Triple Negative.
My sons and grand children live about 150 miles north of Santa Monica, so it will be nice out there with family..we do not have any family here in FL. I am christian but have not been attending church, but I have dumped this whole thing with my cancer in Gods hands. I am handling the things I can, scheduling my treatment, eating the way I should and exercising, and he will have to handle the rest! I fully believe I have at least 10 more good years on this earth, I am 68. I have a dear friend who had a IDC modified radical of one breast and removal of 6 or 7 nodes in 1979 (30 years)and is 72. She has had no recurrance, no swelling of her arm and had no radiaiton or chemo! Treatments have come a long way since then. She is very active, snowmobiles, goes out on her pontoon boat by herself since her husband died, took courses and now teaches bobbin lace, travels, and you name it. I want to be like her, how about all you ladies?. We must have a positive attitude. God Bless you all!
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Breast cancer is a scary and frightening condition to have to face. There is no real way to avoid it and there is only a slight chance of reducing the risk of getting breast cancer later in life. Women are advised to go for regular checkups with the doctor for proper screenings and check their breast themselves. This means that if you do have the unfortunate chance of getting breast cancer you will have caught it early and your chances of survival are so much higher.
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I was sick about my statistics that my onocologist shared with me. I fixated on these, to the point of depression. I knew I needed to talk this out with some one, and reached out to the cancer nurse. Our cancer facility offers free nurses to discuss diagnosis, and offers counselling. This person totally set me straight and I remind myself this each day. Each person has a 50 / 50 chance walking out their front door alive each day. She has a patient who has been BC stage 4 for the last 20 years.
I hold on to those facts each day, to help me get past the hauntings that come to me.
Chemo gave me 30% greater chance at survival, at 36 I needed any treatment that would be me better odds at survival.
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I'm been recently diagnosed..I'm a 39 year old African American with 2 kids....since my diagnosis Ive been a basket case...my doctor was up front with all facts...this is why i feel like ive been handed the death sentence....I had my first Chemo treatment on 9/24 it was horrible ..Im do to get 2nd treatment this thursday and scared of the side effects again..i want to be more positive but just keep thinking...all this sickness, hair loss and its ALMOST guarnateed to come again....I pray dailt that GOD will release me of this cancer today and all the days to come. This fight can't be mine because its bigger than me! Someone help me encouragement..please I need it....I cry so much...all i cant think about is my 6 yrs old daugther being without her MOTHER!
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Hi, Dershell, Just to let you know I am a 22 year survivor. First time I was your age and unfortunately 6 years ago a new primary in the other breast. Both triple negative. first time stage 1 2nd time stage 2, exactly the same as you. Your prognosis looks excellant, no nodes is KEY. Where did you get "almost guaranteed to come back"!!!! Are you kidding, so many long time survivors here not to mention the 160,000 women a year that survive breast cancer and are not on these boards. Honey, look at all the positives about your diagnosis, your not going anywhere. . Think you better go over some of those so called facts with your doctor or get a new one, Ya sure it is scary but just walking down the street today is pretty scary if you think of all the things that could happen.
Just want to mention my daughter was diagnosed with breast cancer 5 1/2 years ago, 6 months after me. Cancer was in both her breasts. She is doing wonderful. She also was TN stage one no nodes.
Hope this helps, I will keep you in my prayers. My God is bigger then any cancer. God Bless -
Awesome postnonijones333! And very truthful..and supportive.
You are absolutetly right NO NODES IS THE KEY....
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NoniJones and others on this thread, sorry I am not triple neg, I am triple positive also very aggressive. But just wanted to say listen to NoniJ she visits us routinely on the Catholics thread and has eased my mind in a big way so many times.
NONIJ your posts are among the most comforting on this site, please come back often you just warm my heart and remind us that this is all smaller than the Divine.Thanks you are awesome.
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One other thing I want to post is that statistics aside, your own desire to live a long positive and fruitful life can easily supplement medical and scientific evidence and ensure the highest odds.
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Do you really think Mind over Matter works? I have a very positive attitude...and I am a tough old bird...at least I think I am....
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Dear Titan,
Yes I think it does.
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Hi thanks all for the encouragement....i havent been on boards for a while the AC treatment has been rough on me...GOT ALOT OF BODY ACHES..SORES IN MOUTH..CANT SEE OR DRINK ANYTHING...FELT FEVERIST ALL THE TIME ...this last for 8 DAYS STRAIGHT....UGH!.i get my last round on thursday....yeah....but will need to do 12 weekly or 4 cycles of taxol or taxateres...does anyone know which option is best 12 weekly or 4 cycles? Im hearing the weekly treatments have a better effective rate? ANYONE KNOW IF THIS IS TRUE
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dershell - I hear ya' - AC is hell!. Because of the trial I'm in I am doing weekly Taxol. I was initially resistant about doing 12 weekly Taxol vs DD because I was just tired of feeling bad and wanted it over with quicker. Although the Taxol has come with it's own set of SE's, they are much more tolerable for me and I also feel the brain fog I was in during AC has lifted. As for being more effective or not, I was told it was the same amout of medication either way, just given at different dosages.
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Dear Jenn,
They have not compared the biweekly Taxol against the weekly Taxol. But studies have compared triweekly Taxol to weekly Taxol and triweekly Taxol to biweekly Taxol. Indirect inference is that efficacy of weekly is very similar to biweekly but it is gentler.
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My onc seemed to think that weekly Taxol was more effective, in addition to being gentler on the person. I had biweekly Taxol in 2005 and weekly Taxol/Carboplatin in 2007 and the side effects were much less on the weekly treatments. I also had four ACs in 2005 and they were the worst!
My two bouts of cancer were both TN but not related to each other. One was medullary while the other was IDC. Now I've had two mastectomies so fingers crossed!
--CindyMN
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Dear Cindy,
Curious to know how come you know the specifics of your TN. My pathology report says IDC and NOS (Not Otherwise Specified). How do I find out more?
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Hi Onty--
I'm medullary like Cindy. My pathology report says Invasive Ductal Carcinoma-medullary type. I think if it is as your's says, it's just IDC with no subtype.
You could ask your onc next time you visit.
How is chemo going? Are you holding up okay?
Lorrie
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Ah, frick! I have a positive sentinel lymph node. I hate this rollercoaster ride. Am I toast?
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Dear Lorrie,
I am doing ok so far. Finished my last AC this week. Now for the 12 weekly Taxols. I hope I do ok during the remaining chemo.
Dear Violet,
I had a positive lymph node too. Does not mean you are toast, just means you need to get this treated as aggressively as doctors would let you.
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Violet..you are NOT toast! You can read all about women that have positive nodes on here and they are NOT toast...I like you too much..don't even talk about being freaking toast.......
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