Triple Negative

[NanceD]

Hi Everyone,
It's only been a week or so since I've started posting at this site. I cannot tell you the comfort I have received from so many of you. It truly helped me more than I can say.
Yesterday I went to my radiation oncologist for the first time. I had been told (or at least it's what I heard) that I was triple positive. Yesterday I found out I am triple negative. It was scary. From all that I have read until now, that is not a great prognosis. Today was emotionally very tough. Last night I tried to find a great source like I've found here for that diagnosis, and I simply did not. In fact, information seemed rather scarce.
But my friends, much of the loss I feel is in losing the support of this group. The information about EVERYTHING related to this disease and Her2+ is amazing. The way everyone responds and offers help is beyond belief. Please stay active. As a fairly new member of this bc club of ours, what you have here cannot be beat!
THANK YOU!!
Nance

[Jean]

Nance,

How did your dr. come to change dx.
Did he do a FISH test for Her2?
Have you had your surgery?

Jean

[NanceD]

Hi Jean,
The doctor apparently had this information from my biopsy. Again, perhaps I heard him wrong when he told me that first day. My surgery is scheduled for the 21st.
Best,
Nance

[Jean]

Nance,
We still love you - and you are still welcome here.
Please don't leave ...we want to support you through your surgery, radiation and whatever treatments lay ahead. While the site is HER2 support we support our sister's who have breast cancer.

You will still want and seek support for radiation questions, chemo questions, etc.

Sending you best wishes for your upcoming surgery on the 21st.

Hugs,
jean

[NanceD]

Dearest Jean,
I am so grateful for you. Thank you for letting me stay. I feel as though I need this group. Had all of my pre-op tests today. There have been some tender moments lately. I let my students' parents know my diagnosis through a letter they received on Tuesday. I simply told my students that I had to have surgery. I told the parents I would leave it up to them if they wanted their children to know. Yesterday I realized many were aware. I was particularly touched when one little girl came up at the end of the day and asked if she could give me a hug. Then she and her friend said they would wear pink today! The positives are there with this rotten disease.
I was thinking Jean that you said you had to go to bat for yourself five years ago when you were diagnosed Her2+. I feel as though triple negative might be similar to what early stage Her2+ was then. There seems to be very little info. and few treatments. How did you go about finding the help that saved you? I want to be aggressive and make sure this doesn't come back - the most dangerous part of triple negative it seems.
Thank you again!
Nance

[Barbara H.]

Hi Nance,
Try to stay hopeful. At one time HER2 breast cancer had a very poor prognoses. That is no longer true. There have also been recent breakthroughs with Triple Negative disease that your oncologist can discuss with you. Make sure that you look at the dates of the information that you read on the internet because there are more options for Triple Negative patients, and there will be even more treatments in the future.

Unfortunately, Herceptin was not available to me when I was first diagnosed in 98. I became stage 4 in 2004 with cancer mets just about everywhere. I currently have no evidence of disease and a still teaching full time. My goal is to teach another four years before I retire. I was diagnosed at 50 and just turned 62. I am offering this personal information because you need to educate yourself as much as possible about your specific cancer to help you make decisions, and I want you to have hope. This website gave me hope six years ago when I thought there was no hope.
Best wishes,
Barbara H.

[NanceD]

Hi Barbara,
A fellow teacher! My goal is to retire at age 66 as well. Congratulations on beating this beast. I'm sorry it was such a frightening journey for you. Metastasis must be so very scary.

I am trying very hard to educate myself. Between the teacher and nurse in me, it's the only way I operate. That's why I find it frustrating to find so little information on triple negative bc. I do live near Roswell Park Cancer Institute, so I will see what I can find out from them. It's encouraging to hear that new treatments are available. You are right; much of the information on this type is very dated.

I am grateful for all of your help and encouragement. Jean says I can stay here even without Her2+ :) You are one knowledgeable and generous group!
Best,
Nance

[Jean]

Nance,
Barbara gave you sound advice...hope is vital and I do believe that a strong mind will serve you well. Just coping in the early days is not easy. While our minds know we have been told we have bc - our souls ache and we need time to adjust our gears.
I remember how I did not want to worry my husband, son and family - so I didn't let on just how deeply worried I was. I can remember well the good cry I had by myself in the shower. Then it was on to the business of getting well.

I did what you are doing right now. I went on the internet and started to gather current information.
Then reading about new research and trials. Never stop asking quesitons and always get second opinions - third if your instincts tell you.

Consider and search out any trials with triple neg. bc.
and ask your onc. if he is involved or the facilty is involved with any trials.
You may receive a new and better treatment. Some trials involve extra tests and scans, so participating will give your doctors even more information about how the breast cancer is behaving.

Once you have your surgery your dr. will advise you of your staging. Nance interesting information is the chemo portion treatment for triple negative is not much different than Her2 (we now get herceptin).

So as far as questions on the chemo portion you are welcome to come to the board and ask questions.
Everyone here is wonderful and extremely supportive.

I was lucky to have found the site and Christine the founder encouraged me to get herceptin/chemo.
It does help to be among a supportive group. You could also ask at your facilty if there is a support group or even contact the National Cancer Society and ask.

I would also say - find a dr. who understands Triple negative breast cancer and is active in the breast cancer field, instead of an onc. who does all cancers.

I did find on line...the following:
The Triple Negative Breast Cancer Foundation
(877)880 - 8622.

Also: There was a small trial for women with triple negative metastatic bc showed that a PARP inhibitor given in combinaton with chemo may delay or halt tumor growth, compared with chemo alone. Sounds much like how herceptin aided us Her2 gals. Ask your onc. about a PARP inhibitor and if you can have that added to your chemo off label. That is what I did with herceptin...I had it off label.

See link below to article re: PARP Inhibitor.

http://www.reuters.com/article/idUSTRE54U1FV20090531
Make sure after your surgery you ask your dr. what is the stage of your cancer, the grade of the tumor.

Nance know this Women do live afer bc dx and do survive and you will also. Do not allow the triple negative to over power you. You will have your surgery and remove those nasty cells and then move forward to the rest of your treatments and destroy anything that may be there.

Hugs,
jean

[tricia keegan]

Hi Nance,

I'm late coming in here but want to add my hope that you'll remain with us, and keep posting.
My friend is triple negative and doing great six years out, she gets a lot of info regarding her own type of bc at this site http://forum.tnbcfoundation.org/

They welcome new member's also, I also should mention that another friend who posts there is triple neg also and a 23 year survivor who was diagnosed with a large tumour and 22 positive lymph nodes!! I know everyone is different but hope it encourage's you a little and look forward to your future posts here.
Good luck with the treatments!

Tricia

[Lani]

Nance there is a lot new in triple negative bc. Some are considered basal subgroup and others not. Those that are not have a better prognosis than her2+ bc usually. There are markers to look for to see which type of triple negative you have including CK5, EGFR, etc.

They are having much better results than in the past with cisplatin,PARP inhibitors, dasatinib and potentially even EGFR inhibitors(EGFR is also known as her1!)

Again many patients who are triple negative have much better prognoses than her2+ patients AND they get to find out earlier if they have beaten the odds, as they tend to have a single "hump" of recurrence which does not go on for years and years (vs. triple positives)

There is lots of information out there, just different information and usually one third to half the sessions at bc conferences I attend are on triple negative.

Good luck!

[NanceD]

Thank you so much ladies! Jean - thank you for finding sources on my behalf. You are so generous and caring! You all offer so much hope with the stories of your friends and the news that progress is being made. I think I just needed a couple of days to adjust to this new news. We are already looking for oncologists who specialize in this area. I told my husband I was rather dreading chemo when I first heard that was adjuvant therapy with Herceptin. Now I welcome it!! Your posts have given me some new information to check on - thanks Lani for the medical terminology to pursue as much information as I can.
Today I joined the TNBC group and mentioned this wonderful group. I will remain here as well. We are all in the same war with different battles.
My best wishes to all of you!
Nance

[Rich66]

Since you haven't had surgery yet, perhaps you could arrange to have tissue sent for chemosensitivity testing. (http://her2support.org/vbulletin/showthread.php?p=222355#post222355)

Platinum (http://her2support.org/vbulletin/showthread.php?t=42353&highlight=Platinum) and Gemcitabine (http://her2support.org/vbulletin/showthread.php?t=41933&highlight=Gemcitabine) seem to be beneficial chemos in triple neg.

Metformin (http://her2support.org/vbulletin/showthread.php?t=39740), a diabetes drug, seems to have potentially extra benefit in triple neg.

[Lani]

hor off the press--they have apparently Identified how BRCA1 associated triple negative bc occurs and in so doing helped explained why platinum agents and PARP inhibitiors are effective against it. This should help them discover new and improved targeted agents.

Are you BRCA1 positive?


New Insight into the Biology of the BRCA1 Breast Cancer Gene
The Cancer Institute of New Jersey
New Brunswick, N.J.- Studies have well established that women who harbor a mutation in the BRCA1 tumor suppressor gene are at greater risk for developing breast and ovarian cancers. Less known is information on other molecular events that may impact cancer formation in cells having a BRCA1 mutation. Investigators from The Cancer Institute of New Jersey (CINJ) and a number of major cancer centers in Europe have identified the role a key protein plays in helping cells with mutant BRCA1 genes to survive. CINJ is a Center of Excellence of UMDNJ-Robert Wood Johnson Medical School.

BRCA1 helps ensure the stability of a normal cell's genetic makeup (DNA) by creating a protein that helps repair DNA damage. It is a mutated form of this gene that investigators explored in this latest research (53bp1 Loss Rescues BRCA1 Deficiency and is Associated with Triple-Negative and BRCA-Mutated Breast Cancers), which is published in the current online edition of Nature Structural & Molecular Biology.

Women with a BRCA1 mutation have one normal copy of the gene inherited from one parent, and one mutant copy inherited from the other parent. The cancers that arise lose the normal copy, thus also losing all tumor-suppressing function of the BRCA1 gene. The breast cancers arising in women with BRCA1 mutations are mostly classified as "triple-negative", lacking expression of the estrogen receptor, the progesterone receptor, and the HER2 gene. One observation that has puzzled researchers is that normal cells are unable to tolerate losing BRCA1, but tumor cells have evolved to be able to survive without BRCA1. Researchers at CINJ, together with collaborators at the Netherlands Cancer Institute, the Cancer Research UK-MRC Gray Institute for Radiation Oncology and Biology in the United Kingdom, the Danish Cancer Society in Copenhagen, and others have found some insight into this issue.

A screen was performed to determine what genetic events would allow normal cells to tolerate loss of functional BRCA1. It was found that loss of another DNA repair protein, 53BP1 (p53 Binding Protein 1) allows cells to continue growing after loss of BRCA1. Moreover loss of normal production of the 53BP1 protein was found in a subset of BRCA1-associated cancers and in sporadic "triple-negative" breast cancers in two independent breast cancer patient cohorts from the United States and Finland. According to the investigators, these data suggest that loss of 53BP1 may allow cells to tolerate loss of BRCA1, and that some breast cancers may have acquired loss of 53BP1 protein expression.

CINJ medical oncologist Shridar Ganesan, MD, PhD, assistant professor of medicine and pharmacology at UMDNJ-Robert Wood Johnson Medical School, is one of the senior authors on the study. "Loss of 53BP1 in breast cancer cells may give some clue to their underlying biology, and may ultimately impact their responsiveness to certain chemotherapeutic agents that are being used to treat these aggressive cancers," he noted. "This is especially true regarding platinum-based drugs as well as a new class of agents known as PARP inhibitors, as cancers arising in women with BRCA mutations have been shown to be sensitive to these specific treatments. We hope to ultimately be able to predict why some patients respond well to these treatments and others are resistant. This work was the result of a group effort involving the laboratories of Jos Jonkers, Madelana Tarsounas and Jiri Bartek in Europe, and shows the importance of international collaborations in advancing cancer research."

The authors on the study are: Peter Bouwman, Netherlands Cancer Institute; Amal Aly, CINJ; Jose M. Escandell, The Cancer Research UK-MRC Gray Institute for Radiation Oncology and Biology; Mark Pieterse, Netherlands Cancer Institute; Jirina Bartkova, Danish Cancer Society; Hanneke van der Gulden, Netherlands Cancer Institute; Sanne Hiddingh, Netherlands Cancer Institute; Maria Thanasoula, The Cancer Research UK-MRC Gray Institute for Radiation Oncology and Biology; Atul Kulkarni, CINJ; Qifeng Yang, CINJ; Bruce G. Haffty, CINJ; Johanna Tommiska, Helsinki University Central Hospital; Carl Blomqvist, Helsinki University Central Hospital; Ronny Drapkin, Dana-Farber Cancer Institute; David J. Adams, Wellcome Trust Sanger Institute; Heli Nevanlinna, Helsinki University Central Hospital; Jiri Bartek, Danish Cancer Society and Palacky University; Madalena Tarsounas, The Cancer Research UK-MRC Gray Institute for Radiation Oncology and Biology; Ganesan, CINJ; and Jos Jonkers, Netherlands Cancer Institute.

The study was supported by funding from the Dutch Cancer Society, the Netherlands Organization for Scientific Research and the European Community 7th Framework Program (Jonkers); Cancer Research UK and Breast Cancer Campaign (Tarsounas); U.S. Department of Defense (Aly); the National Cancer Institute, the Sidney Kimmel Foundation, and the Breast Cancer Research Foundation (Ganesan); the Breast Cancer Research Foundation and the National Cancer Institute (Haffty); the Danish Cancer Society, the Danish National Research Foundation, Vilhelm Pedersen and Hustrus Mindelegat, the Czech Ministry of Education, and the European Community 7th Framework Program (Bartek); the Helsinki University Central Hospital Research Fund, the Finnish Cancer Society, the Academy of Finland and the Sigrid Juselius Foundation (Nevanlinna).

ABSTRACT: 53BP1 loss rescues BRCA1 deficiency and is associated with triple-negative and BRCA-mutated breast cancers
Nature Structural and Molecular Biology
Germ-line mutations in breast cancer 1, early onset (BRCA1) result in predisposition to breast and ovarian cancer. BRCA1-mutated tumors show genomic instability, mainly as a consequence of impaired recombinatorial DNA repair. Here we identify p53-binding protein 1 (53BP1) as an essential factor for sustaining the growth arrest induced by Brca1 deletion. Depletion of 53BP1 abrogates the ATM-dependent checkpoint response and G2 cell-cycle arrest triggered by the accumulation of DNA breaks in Brca1-deleted cells. This effect of 53BP1 is specific to BRCA1 function, as 53BP1 depletion did not alleviate proliferation arrest or checkpoint responses in Brca2-deleted cells. Notably, loss of 53BP1 partially restores the homologous-recombination defect of Brca1-deleted cells and reverts their hypersensitivity to DNA-damaging agents. We find reduced 53BP1 expression in subsets of sporadic triple-negative and BRCA-associated breast cancers, indicating the potential clinical implications of our findings.

[Westcoastgirl]

Just found another site that I have found invaluable as they have a consultant of sorts on it. They also have a whole section titled "Triple Negative". I went in to check it out and there is tons and tons of good stuff. Hope that is some help. Carolyn

[Lien]

Dear Nance,

There's another place you can go: www.bclist.org
I've been a member for years and it's a great place for information, support, laughter, tears etc. You would be more than welcome to join us. Several of us are triple negative and are doing fine, years after diagnosis.

Their archives are accessible through : http://bclist.petebevin.com/
You could do a search and check out the posts before joining. If you want to post something there without joining, please let me know and I'll post it for you. You can reach me at keuningin@yahoo.com

Please let me know if there's anything I can do for you.

Love

Jacqueline