COMMENTS

This is great! No, FANTASTIC!! I too was diagnosed with stage II triple negative b/c in 2002. My treatment was surgery,chemotherapy (4), radiation (36), Aromasin (5 yrs).

The thought of recurrence is always with me. I still don't know what caused the cancer; probably never will, but it's good to know research is continuing and there are more options.

I will continue to walk, run, lobby, whatever it takes to help find a cure or treatment.
- Posted by Gloria D. 6/11/09 1:49 PM

It's great news to know that there are studies being done for patients that are triple-negative such as myself. I was diagnosed in March 2009, had surgery and have had 2 of 8 cycles of chemo with radiation to follow. I too will run, walk, trot, gallop or ride my bike for a cure!! Whatever it takes, we need a cure!!
- Posted by Suzanne Williams 6/11/09 4:26 PM

I also was dx with triple negative breast cancer three years ago, stage I , sentinel node biopsy negative with tumor removal. Did the radiation but declined the chemo, will save it for later use if necessary if and when it comes back. I'm thrilled that some progress might be in the makings for the 20% of us who get this type of breast cancer. Carolyn
- Posted by Carolyn Potts 6/11/09 5:59 PM

I was dx triple negative 12-2002. Had chemo 5 different times for recurring tumors. Had radiation for 7 weeks after the 1st chemo. Had Radio Frequency Ablation for 5 tumors in lungs and 1 in breast. Recently had Stereo-tactic Radiation in for breast cancer in the lung.
Is it way too late for PARP inhibitors for me? I'm game for anything about now.
- Posted by Barbara G 6/11/09 7:32 PM

I was dx with stage IIB agressive triple negative breast cancer in 2006. 1 lymph node involvent. Treatment included 2 surgeries,chemo and radiation. After treatment completion I was sent home with "Evista" to return to my normal lifestyle, without knowing what caused my cancer.Recurrence is always in the back of my mind to. I am excited that more research is underway for triple negative cancer patients.
- Posted by Elizabeth Ruse 6/11/09 7:35 PM

Yet another woman diagnosed with stage 1 (sentinal node neg.) triple-neg breast cancer, Nov. 2005. Treated with modified radical mastectomy with immediate reconstruction then 6 months of chemo (Adriamycin/Cytoxan followed by 12 weeks of Taxol).
I completely identify with the previous poster who felt dismayed at being told to "get on with her life" after treatment ended. I was in fight mode, my e-mail support team was named "Team KCA" (Kick Cancer's A$#).
I was fortunate enough to locate a clinical trial using simvastatin to attempt to prevent recurrance in high risk women, & participated in that for the entire 6 month trial period. With all doctors agreeing, I continue on simvastatin for this reason: the drug is easy to get, cheap, won't hurt & might help. The only draw back is explaining the off-label use-providers immediately assume that I'm using it to control cholesterol.
The sad fact is that no one really knows what causes most cancers. Early on, I decided that I was not going to spend time "Monday morning quarter backing", condemning previous informed choices I had made as the possible cause for my cancer. That freed up a lot of emotional energy to work with the chemo & focus on getting well.
One note about chemo-it was not nearly as bad as I'd feared. As a health care professional, I thought I "knew" chemo's side effects. What I now know is that chemo tolerance is very individual. I went home & shoveled snow after my first chemo. I had delayed nausea for the A/C rounds so with treatment on Mondays, I could pretty much feel good until about Wed. mid-afternoon. That's when my Zofran use would kick in, for a few days until I felt better for about a week at which time the whole cycle would begin all over again.
My point here is that there are treatments available to handle the side effects of chemo, removing chemo for the place previously reserved for the word "cancer" when it was whispered with awe & fear.
Triple negative breast cancer was no picnic and the concern is always there about recurrance but I am so pleased that medical science and treatment has advanced to this point. Here's to looking forward!
- Posted by Dale Ashera-Davis 6/12/09 5:16 AM

I too was diagnosed with triple-negative cancer, Stage II, right breast in 2002. Did the lumpectomy, six months chemo followed by radiation. All going well till five years later, diagnosed with a second breast cancer - secretory carcinoma in left breast, stage 1. Opted for bi-lateral mastectomy and feeling great until 1 1/2 later when pain in chest promted visit to my oncoligist. Stage IV breast cancer, metastized to the bone, triple negative. They figure it's the first cancer that has come back. Am on clinical trial currently for past 6 months, using taxol and avastin (with zomeda once a month for my bones). All scans seem to show good results - bone regeneration. But it is extremely relieving and positive to read about new findings concering triple-negative breast cancers. I will have to share this article with my doctors to make sure we have back-up plans just in case!! Thank you!
- Posted by Gyda Higgins 6/12/09 8:37 AM

please use the prior comments
- Posted by Rhonda Boisvert 6/12/09 2:40 PM

As so many others, I was diagnosed with triple negative breast cancer in 06/2000. I had modified right mastectomy. No lymph node involvement. Chemo was - 4 rounds of AC followed by 4 rounds of Taxol. After that 35 radiation treatments. My doctor also told me to continue my life. It was upsetting that there was not much done for triple negative cancer at the time. I was cancer free until 12/2007. I just felt like something wasn't right. It had returned to my left lung. I had 1/2 of the lung removed (02/2008). I participated in a clinical trial using Abraxane along with Avastin. I've had good results. As of this month I've been on this regiment for 1 year. I am hopeful that treatment/cure is forth coming. We have to stay strong and fight.
- Posted by Pam S 6/12/09 11:22 PM

Yes, absolutely we must stay strong! I too, was told in the fall of 2004 I had invasive breast cancer. Was also told "no hormonal markers of any kind". Was that a good thing I wondered? Lumpectomy was an option, chemo and radiation were both recommended. No lymph node involvement, opted out of chemo as I "didn't have the time to be sick" from chemo side affects. Completed a full 30 days of radiation. Shortly after, skin cancer was found on my leg - which was removed. Now there is a name for the type of breast cancer I had (have?) - "triple negative" and the only effective form of treatment identified at this time is some form of Chemo. Needless to say, I now know my treatment of choice was a bad one (no chemo) but I based it on what info was available at the time - which was nothing. Yes, I absolutely will remain strong but along with all the strength comes fear - a well-hidden fear - that no one knows except me. I hope and pray everyday the cancer does not come back in some other place in my body as "triple negative" is known to do. But at 54, with a family history of breast and ovarian cancer (my mother died at age 45 of this), I am a survivor and as each day passes - I am grateful and blessed - and will continue to show my strength and hide my fears!
- Posted by Rhonda Boisvert 6/16/09 9:48 AM

After hearing the news this evening on NBC relating to PARP inhibitors, I am doing a research on it and found this site. The drug seems to be effective in Triple Negative Tumors.
I am a young, healthy, retired nurse, 70 years old, diagnosed with Stage IIB, moderately aggressive triple negative invasive ductal carcinoma with 1 of 12 lymph nodes involved. I had a mastectomy and node dissection on April 21st and have taken time to research this and gain medical and spiritual advice. I also got a second opinion. The best guess from statistics is that I have a 50% chance of cure and the other 50% can be reduced by 25% with chemo. I came very close to not taking treatment but decided on the basis of being triple negative and realizing these tumors are very aggressive, I have chosen to take chemo (FEC+T) are what are recommended at my Cancer Center. This will be followed by radiation. I had my first chemo yesterday and with the new drugs am so far tolerating it very well.
I am following this research very closely for only God knows what the future will hold.
I would like to add a "political"note - I live in Ontario, Canada and please don't believe all that you may hear in the U.S. about our health care system. All my treatments have been very rapid - it was me that held them up until I was sure of what I wanted to do. Yes, one does wait for non-emergency surgery, depending on where one lives. Most of my drugs are free; we have a private insurance to cover the balance. And we DO pick our own doctors!
Good luck to those who have written before me - I strongly recommend Dr. Susan Love's Breast Book for every woman to read. It is due for an update (she does one every four years) but it is full of wonderful information.
Claire
- Posted by Claire Nault 6/24/09 7:22 PM

My sister was diagnosed with triple negative breast cancer stage 2A in 2007. A year later she finished her treatments and was given an excellent prognosis. She did not make it. Less than a year after her chemo/radiation/lumpectomy was finished she died. And she died suddenly--from an aggressive spread to her liver. She felt great and was involved in all her usual activities and then BAM! She woke up one morning with yellow eyes and died less than 3 weeks later. It is a horrible disease with few specific treatments. She leaves behind a shell-shocked 12 year old daughter and a stunned family who had no idea she was dying until the oncologist told us the day before.
- Posted by bg 8/22/09 5:59 AM

At age 59 in2004 was diagnosed with triple-negative stage III invasive ductal carcinoma and sentinal lymph node was also cancerous. After mastectomy had AC plus 6 months of taxotere. Went back to work. Had breast reconstruction in 2006 and then in summer 2008 had pneumonia twice that summer, somebody finally decided maybe I needed a chest x-ray and it, plus biopsy revealed spread to lung and bones, so it is now stage IV. Asked about a trial and began taxol with sutent which is similar to avastin in that it is to stop the blood flow to the tumors. It has reduced, but not eliminated the tumors, and told nothing else to do. I've been on the trial for 14 months and have fatigue and pain from the treatments, as well as blood clots so have to take coumadin every day and with the chemo that is not under good control. I am disabled but able to care for myself. I'm actively looking for another trial to try if this stops working. I was told the longest it's worked for far in 14 months.
So I'm on the edge, although thinking I'll break a record! These postings are very helpful. Please if anyone out there has triple negative post your story, it may help someone!
- Posted by michal poe 9/14/09 11:46 AM

I was diagnosed with inflammatory breast cancer Estrogen positive in 2004. Following chemo, mastectomy, radiation adn more chemo I got on with my life; always hoping that the Aromasin to block the estrogen would keep me cancer free. On my routine Pet scan in March 2009, a hypermetabolic lymph node behind my sternum was found. Upon biopsy it was determined to be a higher grade(less like the original breast cancer) triple negative breast cancer. It had morphed from an aggressive tumor into something more aggressive (and not estrogen supported) and what I felt would be harder to treat. Well, the reason I am writing this is to give some positive news. I have been treated with Taxol and Avastin (although I do not like the side effects at all) the last 2 Pet Scans have shown NO evidence of hypermetabolic activity. In other words NEGATIVE!! Do not despair!! There is treatment that is effective and although there are no way to know if it will work; the important thing is to be positive. All the best to everyone drawn to this site.
- Posted by Patty Ramos 9/20/09 4:40 PM

I too, was diagnosed with "no hormonal influences" breast cancer in 2006. It was something called "metaplastic " breast cancer, stage II only because of size , with lumpectomy, chemo(cytoxan and taxotere), and radiation for 6 weeks,no involvement of lymph nodes.So far no more tumors and hopefully will have none ever again . Nice to know it now has a name ,triple negative.
Apparently metaplastic has the characteristics or aspects of two or three types of cancer, never was told which ones they were but I guess the doctors did not know what to do either so I had a lot of input into my treatment and chose those two chemo drugs mainly because they would not have a bad affect on my heart and might have an effect on the cancer. So far ,so good.
I pray that all who enter this site with cancer, leave it with renewed hope .
- Posted by Linda Filman 10/13/09 9:32 AM

Christmas 2007 I woke up with blood on my shirt. The triple negative stage 3 tumor wrapped around my milk ducts thank goodness. I had six rounds of TAC and a mystectomy. If i had know what triple negative was i probably would have had both breast removed. I was shocked when chemo was over and there was no after care program other than seeing the doctor every three months. I found a trial one study polphenon E study in Houston Texas sponsored by Columbia.(6 month study).
We all are waiting for the PARP inhibitor as we fear recurrance. I pray it will be approved in time...
I am cancer free now and I refuse to leave my three children without a fight.
Vicky Rollins
- Posted by Vicky Rollins 10/13/09 10:08 AM

I, too, am a triple negative cancer survivor. I was diagnosed in October 2008. I have undergone 4 treatments of taxotere, 8 treatments of gemzar, 4 treatments of adriamycin and cytoxan and avastin before and after a bilateral mastectomy. I am a part of a clinical trial and still undergoing the avastin treatments, which consist of 10 treatments after surgery. I was made aware early that triple negative is aggressive so I was aggressive in choosing a bilateral mastectomy. It has been a year since I was diagnosed and my faith in God has sustained me. I would be lying if I stated that I do not have any fears because, sometimes, I do. Right now I am experiencing shortness of breath, lung density and shoulder pain. I have had CT scans and my doctor says that the lung density does not mean "lung cancer." In the meantime, I am praying and trusting God that cancer will forever remain in my past. God bless each of you dealing with this disease and I, too, am happy to hear about the PARP inhibitor.

Sharon Tarver
- Posted by Sharon Tarver 10/13/09 1:44 PM

I am writing about a survivor...my mother - She had a normal mamogram in October '06 - in May '07 she learned a hard golf ball sized mass under her arm pit was not a fatty tumor, but rather triple neg breast cancer which had spread to to her lymph nodes. She also had two dic tumors in her breast. Her course of treatment was the two main chemo agents (adrimycin? and taxol?), mastectomy and radiation - and one year in a clinical trial of avastin receiving it every 3 weeks. She is cancer free as far as we know and it has been 29 months since diagnosis. She is now 64 and works five days a week. Her triple negative cancer was in stage 3 - grade C and the whole golf ball sized mass in her axillary nodes was considered a grave sign...but we keep hoping avastin is the miracle drug that choked off the blood supply to any lingering cancer cells that first year. We also hope that an aggressive cancer like this could not be "hiding out and growing slowly" so maybe it really is gone! Mom does not like using the internet, but I know she believes in Avastin being a cure drug! I hope anyone reading this has access to it and that it works just as well.
Lisa in Indianapolis
- Posted by lisa rochelle 10/22/09 7:47 PM

March 2009 I was diagnosed with TNBC on my left side, stage 3c also. I was 30 years old. I was just in time for this study, the BSI-201 (parp inhibitor) in Stanford, CA. I feel it was a blessing to me, it was paired with gemzitabine and carboplatin. I had 16 treatments total, and I had a lumpectomy following chemo, and I had my lymph nodes removed. One lymph node had a 2 mm cancerous spot. There was 1cm of cancerous tumor left, it was 3.5 cm. I am currently finishing up radiation, I have 4 treatments out of 33 to go! My biggest fear is the cancer coming back and of course the statistics of year survival rate and 9 months from the time of your 2nd recurrence. I am horrified at the odds of recurrence! So I will try to take day by day as a gift and enjoy my hubby and my 3 kids, ages 13, 7, and 8. Please let us continue to pray for each other and pray for those working for a cure!
Eileen, Eileenvt528@aol.com
- Posted by Eileen 11/1/09 1:42 AM

i just lost my 39 years old daughter from TNBC. I can't understand why isn't a data base where ALL doctors could provide and be provided with the most successful drugs available. I feel that too much time was lost. I can and maybe will write a book regarding health insurance, the professionals, some good most uneducated toward this particular illness, the careless to see a patiente if happens to be a problem on a Sunday or other Holiday.My daughter had a lung blockage on a Sunday but the doctor insisted that she will be seeing on Monday. Monday morning she wasn't able to breath , she died the next morning gasping for air.
I know my daughter had a terminal illness but the doctor's could do more to allowed her to lived a little longer. We need a data base with information from all over the world. We need to work together so this doesn't happens to anybody else. (no for the reason that did)
I don't expect you have this letter for everybody to reed it, to the other hand people going through the same illness needs to know that doctors are no God, second opinions should be mandatory And insist on every drug and treatment available.
We left my daughter's body yesterday at the cemetery and yes, I am terrible sad and I am terrible upset. If somebody knows who I need to contact to start helping to make this easier for the TNBC patientes, please let me know.
Sincerely,
Marina Georgiev
- Posted by Marina Georgiev 11/8/09 8:18 PM

I am 45 tomorrow. Dx triple negative, stage 2A because of size 2.5cm, lumpectomy, node negative. 10/28/09.
I really didn't think I needed chemo until I found out I was triple -. I am terrified of chemo. I am a paranoid person to begin with about pain, breathing, nausea, I take xanax prn. How can a person like me get chemo!? And justify it as "prevention." It decreases my recurrence from 50 to 15% I know. But I can't help thinking that a radical raw diet/juice diet would do the same according to research.
Doesn't chemo leave you "foggy?" with chemo brain? I have six children and two businesses to run. I can't get chemo and maintain a life!
I take many herbal supplements now, and my doctor said, "We tell you to stop them during chemo." what? When my body needs them most? I am glad there are new trials and research being done!!
- Posted by Marousa 11/29/09 9:40 PM

I was diagnosed last October with triple negative. Had mastectomy, chemotherapy of FEC, and soon felt good again. Last month I found a lump in my same side armpit. Yes, biopsy came back positive for triple negative. I have just returned from MD Anderson - this was not diagnosed last year as the metaplastic spindle cell triple negative, therefore, incorrect chemo of FEC. I am to go on a drug which is a Taxotere called Docetaxel, along with one that is a Gemcitabine called Gemzar for 10 weeks. Then, surgery on lymph nodes, followed by 6 weeks of radiation. My dr. said that this type of cancer does not respond to much, including supplements, which I have been taking MANY and eating so healthy and taking care of myself ever since finished chemo - did not prevent this lump from growing! Any suggestions/help?
- Posted by Shannon 12/2/09 10:21 PM

First off, I am sorry to those that have lost family members and happy to hear the survival stories. My mother (59) was diagnosed on 11/23/09 with TNBC/IBC. She had a huge mass/boil area on her left breast. She was hiding it from all of us--no one knew! That's is until my girls saw it coming out the side of her bra while she was getting ready one morning. I then went to her and made her show me what she had been hiding. I could not believe what I saw!!! I told her that we were going to the ER right then; of course she tried to fight me on it. Everything happened so fast after that day--all of the doctor appointments and tests. I have been reading everything that I can find on this cancer but I am still not very clear, as it seems to be a completely different animal. They are treating her as if she has metastasized. Her chemo consists of Gemcitabine and Carboplatin as apart of her trial. I believe that it is in her lymph node under her armpit, in her lung and I believe that she has a mass in her chest. They told us they don't have time to biopsy the lung (because it is so aggressive and wanted her to start the chemo)and they haven't talked too much about a mascectomy. We know that it is an aggressive tumor but it so hard putting all of the information together in your head. When we consult with the doctor, I am afraid to ask my questions in front of my mom in fear that some responses might scare or bring her spirits down. She seems to be doing well but her left breast is HUGE and still drains. Today was the first round of chemo but the doctor said if there have been no results after the second round, then they will discontinue the trial and just do the "standard of care". I don't really know what all this means though. I have my good days and my bad days, and I can't imagine what she is going through--no one, and I mean NO ONE deserves this!!!I am trying to stay positive, but I do fear the worst. I pray that they find a targeted treatment/cure soon. Bless you all
- Posted by Shannon 12/7/09 4:48 PM

I'm going to San Antonio on Thursday to cover the San Antonio Breast Cancer Symposium. We will be blogging from the conference, sending daily updates, interviewing thought leaders regarding the biggest news to come from each day's proceedings. If you haven't already done so, sign up to receive these updates on curetoday.com! I'm sure that more on triple negative breast cancer will be reported at this meeting. I know that I'll be on the lookout for updates!
- Posted by Susan 12/8/09 11:26 AM

I my wife (high school sweet heart) who is 28 (w/ two kids ages 2 and a 6 month old) has just been diagnosed with triple negative breast cancer stage 4. It has spread to her spine, pelvic, chest bone, and liver. She is on a clinic trial (Parp Inhibitor) In Portland Or.She fell on the half that does not get the parp unless her condition gets worse. She has had 5 treatments and her tumors are shrinking.I am scared for what the furture holds. I read alot of things online but every thing is so negative.I would do any thing to have my wife healthy again. Kenneth
- Posted by Kenneth 12/15/09 2:53 PM

Kenneth- I am so sorry for what you and your wife are going through right now. She is too young for this to happen and this is why I am frustrated and confused that doctors and OB-GYN's are not proactive in finding new screening techniques for young women. A friend of mine from college was diagnosed with breast cancer at age 25 and my mother was diagnosed at age 43. I am 27 and I dread that I will be in their shoes because doctors just brush me off when I ask for a mammogram, ultrasound, breast thermography, SOMETHING besides self-exams to screen for breast cancer.

I also think there should more accessibility (regarding knowledge of, locations and cost)to clinical trials for cancer patients. That is wonderful that your wife was able to get on a clinical trial for the new PARP inhibitors and that her tumors are shrinking. My mother's doctors did not help us at all with getting into a clinical trial, even when I did research and made copies of the trials I printed out from Clinicaltrials.gov. Stay as proactive as you can and don't be afraid to challenge the doctor's opinion or get second opinions. Know that you are doing the best that you can do. I hope and pray for all families going through this like mine and yours.

Marina- I totally agree that there should be a database or something out there that forces doctors to integrate their knowledge and collaborate with each other to find the BEST, newest, promising treatment available to each of their patients, even if it means getting their patient signed up for a clinical trial far away from their office. There needs to be a global effort to treat cancer patients. Instead there are tons of obstacles to even get information about treatments or trials worldwide (in my experience doctors in the U.S. will NOT help you get connected to a trial in another country, much less another county). One of my mother's doctors had no clue about the newest drugs (or drug combinations) available for chemo. or anti-nausea. She had to initiate treatments and do research herself. He basically told her to make arrangements because there was nothing he could do for her. Finally she went to a different oncologist who at least was open to trying a different chemo. combination then the one she had before (she had a recurrence).
- Posted by Jane 12/16/09 2:20 AM

Hi, my sister was recently diagnosed with Stage 1 Triple Negative Breast Cancer. I have another sister older than me, and it's my oldest sister that has been recently diagnosed. No family history of breast cancer. What can I do to help my sister? What is the best treatment option around?
I am so sorry to hear about the ones that lost their lives to breast cancer! I am so sorry! I pray daily for their to be a cure for cancer! Meanwhile, I want to educate myself to better help my oldest sister, my older sister, and myself. Thank you for your stories!
- Posted by Cathy Reed 12/23/09 12:17 AM

My best friend's mother has been battling breast cancer for almost 7 years now. We all thought she beat it, and unfortunately it has progressed into triple negative breast cancer. My friends and I have always been supportive and helped when and where we could, but you never know the right questions to ask... instead, I've tried to just remain a listener and a shoulder to cry on. However, today I received horrible news.. Her cancer has spread so far into her liver that she might not have much longer to live. Like I said, I don't have any prior knowledge on cancer, but I'm guessing she isn't a good candidate for a liver transplant at this point. I need answers. I don't know what to do. I feel helplesS, and can't even intelligently converse with someone on the severity of her cancer due to lack of knowledge and insufficient vocabulary. "How bad is the cancer," someone will ask, and how do I reply to such a question?? What degree, or level, do you categorize something like this?? when looking at my best friend everyday knowing her mother won't be there to try on wedding dresses with her, or simply chit chat on new trends or gossip. How about her son, who will no longer have his mom to guide him down the long and twisted paths of life? Or her beloved friends and family, who will no longer be able to laugh and rejoice over simply living life to its fullest.. Maybe it's too late for me, as a bystander, to get results. But I need someone. some voice. someone to tell me what to do...Is there ANYTHING or ANYONE I can call?? Would a clinical trial accept someone who has cancer that has spread all over her body?

Please, if someone could give me some kind of answer, I would greatly appreciate it.. no words can even begin to describe the help I need.. not to mention the support system and help her family needs at a time like this.

This is the only current blog I could find.. She really doesn't have a lot of time.
Is somebody out there?
- Posted by Jane Doe 12/29/09 10:11 PM

For those of you looking for clinical trials for triple negative patients, go to www.clinicaltrials.gov and search under PARP inhibitors. That will be a great source of information for you.
- Posted by Susan 1/5/10 2:55 PM

I was triple negative ... I am a 12 year survivor and have not recurred.

In regard to liver mastastistic disease. I believe I read some years back herceptin had mopped up 5 liver mastastitises. There might I would hope be more progress on this front in the time since that info came to my attention (I would have noticed this info...after 1997 and after Herceptin came to be available which was as late as 2000 I believe as it was not available when I was being treated. For my disease at that moment I was treated with CAF which increased my very slim odds of long term survival to about 40% (from 10-20%). I would strongly feel anyone who has liver mastatistic disease might want to get a "2nd opinion" from a Comprehensive Cancer Center because they will be page, paragraph, and line with all that is going on and reliable on your stage and treatment options. You may feel free to contact me at my email address as I would be happy to talk with you also if you like.
- Posted by Y Judy Foster 1/11/10 10:55 AM

In regard to surviving ... when I came thu in the 1995-1997 era the one graph showed that as one professional put it when I asked "this one likes to kill you fast" so if you don't die or get sick again soon you'll probably live. I saw the graph and that was a very appropriate description. Before getting to that point (I was in the process of having radiation after mastectomy and chemotherapy) I had concluded that my odds of living were very slim due to the reaction of the doctors I had been having apppointments with. I was staged as a III b...I had 11 positive nodes (before sintineal node...I hope I spelled it right). I felt that I was going to "fight and go to it not wait on it to take me as were"...I found treatment after the local docs told me "we think you may not live long. Have you made your will. Oh, there may not be any treatment for you". I...can't tell you why, but I didn't cave or give up. Rather I thought of my parents who had no one else but me to care for them and they were both close to the end of their lives. I called the two national 800 cancer numbers and asked for any information they could give me. One of these calls went to a room full of women (and men perhaps) who would provide information to all who called. The woman who took my call heard me say very humbly "Mame I don't know if you can help me or not I'm told that there may not be any treatment for me and they don't seem to think that I will live long." She responded "Mame do you mind my asking if you have inflammatory breast cancer"? I replied, "no I don't mind you asking because that is my DX and that's what we have to talk about". She then continued "well, there are two women here in this room with me taking calls just like I have taken your call and they were treated". Stunned, I asked 'mame, could I possibly speak to both of them?" She allowed me to do just that and I learned that one had survived 17 years and the other had lived 2 and 1/2 years. I...being new didn't know to ask "what chemo were you treated with". A major oversight on my part, but I didn't know to ask. (I am a college graduate and had a high IQ). What I learned was firstly, there was treatment and I had to keep trying to find it if I wanted to live. Secondly, I learned that I might survive long enough to manage to care for my parents and keep them from going into a nursing home as they didn't want to do this. I thus grabbed my chart as were and headed north on I 85 from SC to Durham NC and DUKE University Hospital. I literally walked in without an appointment, but I did call once on campus and asked to speak to an RN who worked with the breast oncolgists. By grace the RN took the call and she hit every mark correctly. She had seen the doc that she worked with on campus which meant that he had returned from lecturing off campus earlier that day. She also before we hung up asked "have you ever been treated at DUKE hospital for anything". (I had my first born son there when I was a young law wife). Since I had been treated at DUKE for that ... the requirement that I be treated at the closest place treatment was available was mute. I escaped SC where no one knew if there were treatment for me and was treated at DUKE. Duke in turn was a Comprehensive Cancer Center and they were page, paragraph, and line with what was going on regarding my disease. (I believe they were then number 5 in the nation...the doc that I saw for chemo left to head breast oncology at Dana Farber which is number 4 in the nation and affiliated I think with Harvard. They treat women I believe at Brigham and Young Women's Hospital. There are now possibly Comprehensive Cancer Centers in all 50 states...some states ...North Carolina comes to mind have more than once center of this type. North Carolina has at least 3 ... DUKE, UNC Lineburger in Chapel Hill, and Baptist Hospital in Winston Salam.

My chest wall was disease free on the up side of where is was 2 weeks after mastectomy when I got the one about "have you made your will". The 11 positive nodes...didn't sound real good you know? Nor the staging of III B.

I've lately heard from a reliable source that you can more often get a response with ER/PR neg women (possibly even triple neg, but I 'm not positive on this). There was triple neg when I came thu...in that we had the ER/PR and I got the other confirmed also soon. At that juncture the local hospital had been doing the ER/PR testing ...then dropped it...then started again. I was fortunate that on me I did come thu when it was begin done. I was fortunate...I found it helpful to not think about dying, but to focus on was there any treatment, and where did I have to go to get to that treatment. I decided to not worry about dying until things got to the point that I knew I was dying. I felt this was a wise approach as I needed to stay on my feet to take care of my Mom and Dad as long as I could and being upset wouldn't make things any easier on me (or them). I decided after hearing there was treatment (some where) when I hung up I would try to find it in the hope I'd live (even 2 1/2 year) long enough to get my Mom and Dad buried. I never wanted to let myself get to the point of "floating around like a helium balloon" regarding my chances of living as I knew if it did come back I might find it hard to rally to fight again as were. But, when I reached 36 months post treatment disease free...I had to at least smile. I ... remembered the graph and I was way toward the far end and while the plunge in the graph was stunning at the outset where I was then the line was horizontal and not falling. (It was a lotus graph and I also knew that from about 40 months to 8 years one or two more of us would die, but having come so far I smiled and I'm now beyond the 8 year mark also). While being treated at DUKE with radiation (very high doses that were fractionated to my incision site only...again I hope that I spelled that correctly)I got a copy of said graph...I fully understood why the doctors that I'd met with didn't seem to think I would live. I...while at DUKE some 6 months into being treated felt that I was not being successful with praying for my life which peopole kept telling me was "where I should be". I had decided some little while before since I was struggling with the praying for my life to pray for others, and to do my more usual praying which goes along the routes of praise you and thank you. For me...praise you and thank you, and praying for others, and asking "thy will be done" was my way of dealing with my spiritual side. For me ... it was the right thing. I was glad when I saw the graph that I'd NOT been comfortable with "praying for my own life". Had I done that I'd feel very bad today as so many others didn't make it. In truth I have had to deal with some feelings of "survivors guilt"...having survived.

I...would like to continue my advocacy for breast cancer and when I saw these postings today I did realize that so many women are still thrown into a completely chaotic scene when they find they had inflammatory or that they are triple negative.

For anyone out there who is thinking of their future. I was a young inflammatory and I did survive...in fact, I am now over 60 years old! So...please know surviving is possible with treatment and todays advances there are more of us surviving this than then.

I hope this helps someone who reads it.

Kindest regards...

Y (judy foster)
- Posted by Judy Foster 1/11/10 11:49 AM

I wanted to encourage all who have issues regarding treatment for triple negative breast disease to not give up, but try getting to a Comprehensive Breast Cancer Center. There is likely a list available online if you search just for 5 minutes to find it. There is ...or was a list also in Dr. Susan Love's Breast Cancer Book back in '97 when I read it while undergoing radiation to my incision site. Any computer knowledgeable librian can likely find the list for you online.

There has to be fear with this disease, but I managed by focusing on "is there any treatment" for me. And I did use the 800 Cancer numbers...there are two in the US. One is the American Cancer Society as I recall..the other most doctors offices that deal with breast cancer can readily tell you. I was fortunate to come thu when they had an RN to navigate you...this program was no where then as to where it is today however. But, they knew in the surgeons office the two numbers and made sure I had them.

I think at the outset ... back before '97 my odds of living even 6 months were less than 2 in 10. By "staying the course" of trying to find if there were treatment for me and then getting to a CCC without any time being lost basically I found they knew there was treatment. I had to have a scan to know if my cancer had spread...in question at that time was my liver (as there was no herceptin had I back then mastastasised to my liver I would have not been a candidate for treatment, rather I would have just been kept comfortable). Once the scan results were in...we'd already set my first chemo for the following week and hence, we went forward with treatment.

I...remember also...that during the months I was treated I was focused on the numbers and I found (I was a math teacher the numbers of survivors that I knew was 'better' than the published results. Hence, I do relate here to the individual that said "don't think about those statistics, they are at least two years old". For me...I felt the stats did matter, but I was keenly aware the odds were better than what I had seen in publication/the graph. When I began chemo...I'd guess here that my odds were on the order of 1 or 2 in 10 at best of long term disease free survival. By the time I had finished chemo....I think 18 weeks later, my odds were (soon to be published study) 4 in 10. That improvement did not happen all in just 18 weeks...the research had been going on you know for quite sometime, and I just came thu at the moment that they knew to treat us with (then) CAF. That is Cyclo, Ardrianmycin, and FU 5. There have been many more improvements since those days over a decade ago. The research has gone on and on and there are more arrows in our doctors quiver today.

One of the most troubling things about inflammatory/triple neg is the difficulty with diagnosis this disease. It's so hard to diagnose. The doctors... all who treated me I thank for my life, but in all honesty the first (who supposedly missed my diagnosis remains just as high on my list of graditude...he was determined to "save my life" and the delay with getting my "correct" as were diagnosis has not bothered me in the least. He doesn't deserve to be blamed for not getting the DX before my mastectomy because they did all they could do to get me diagnosed. We have to remember that even our doctors are human and they can do it all and we can still (like me) not get that preferred protocol. I was "correctly" diagnosed only on the table for the mastectomy. I knew this doctor and I had talked however, and somehow he was "convinced" I needed a mastectomy NOT a lumpectomy...I was given some sort of keen radar on this man's body language and I just stone cold knew that he knew what was best for me. So I requested a mastectomy and went to sleep thinking I'd wake up having had a mastectomy so it was NOT a shock to be wakened in recovery by him, and told "we did the mastectomy". Without having the "benefit" of that preferred protocol...without the supposed best there was I still survived...long term.

The doctors and nurses all still have my undying respect and appreciation.

We need always to try to overcome the problems with this disease...getting a DX with it is clearly still to this day difficult. But, I also note there's so much more known now than 10 or 12 years ago...and for those improvements I give thanks. I wish all stricken the very best and hope that one day soon all stricken will have treatment that allows them to become a long term survivor.
- Posted by Judy Foster 1/15/10 2:47 PM

I was diagnosed with triple negative, metaplastic bc in October 2006. It was discovered just after my 40th birthday during my baseline mamogram - zero family history. Stage 1 small tumor and negative node involovement- lumpectomy with A/C chemo followed by 6 weeks radiation. I was not given taxol. I am unclear about taxol and if. based on the aggressive nature of my cancer. there was more to be done to lessen chance of recurrance?

When I went through treatment - I did not read any blogs or websites - now that I have an some time between the reality and treatment and the fear of it is coming back always lingers.
- Posted by renee janovsky 2/15/10 7:44 PM

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