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suzannek 
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Joined: Oct 16 2008 Location: United States Status: Offline Points: 67 |
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 Posted: Oct 16 2008 at 5:42am |
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Hi Nancy
I am a very frightened newbie. I've been reading like mad to learn to fight TNBC. What is the FISH test?
Sue
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Oct 17 2008 at 8:19am |
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Hi Sue,
So sorry you have cause to be here, but I'm happy that you found us.
A FISH test is a newer, more accurate way to determine if you are Her2Nu+. Older tests sometimes showed that one was negative, when they were actually positive. When the FISH test finds Her2Nu+++, then Herceptin can be employed.
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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sueez
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Joined: Oct 08 2008 Status: Offline Points: 27 |
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Posted: Oct 17 2008 at 8:26am |
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hi sue thats my name too you are at the right place and nancy is my angel very great women you will be ok feeling scared is what we all our but learning to live can overpower our fear
sueez
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DeeDee
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Joined: Oct 14 2008 Location: Illinois Status: Offline Points: 33 |
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Posted: Oct 17 2008 at 8:58am |
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Hi -- I have a question about the BRCA test. Did all of you who had the test done have a family history of breast cancer? I have no family history, was 64 years old at time of dx (which I am guessing is older than a lot of you), but have three daughters. My daughters,doctors and I toss this question around and I still don't know whether I should get the test. I would appreciate any input.
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dx Nov.7, 2007
Lumpectomy Nov 15, 2007 1.05cm. stage 1 grade 2 sentinel lymph nodes neg. chemo AC 4 treatments 30 rads ended April 2008 |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Oct 17 2008 at 8:59am |
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Hi Sue and welcome to our forum.
Honey we are all frightened but with time and empowerment we learn to live and deal with this disease.
If you have any more questions please just jump in and ask, ok?
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Oct 17 2008 at 9:04am |
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Hi DeeDee,
Yes we have alot of family history so got the test.
A website you might also find helpful is http://www.facingourrisk.org
You also might consider speaking to a genetic counselor to help you decide what to do.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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sueez
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Joined: Oct 08 2008 Status: Offline Points: 27 |
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Posted: Oct 17 2008 at 9:07am |
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hi pam glad your back with great words of wisdom feeling very hopeful today in knowing that you and irish girl is doing great i start my treatment next week scared still but stronger from all of you
sueez
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suzannek
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Joined: Oct 16 2008 Location: United States Status: Offline Points: 67 |
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Posted: Oct 17 2008 at 9:38am |
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Hi Caryn, Pam, Sueez and all those who have welcomed me, Thanks
I do appreciate all the work putting the latest research about TNBC on one site. Lots of food for thought.
Yes I finally read about the FISH test. I am assuming that since I just had it done at one of the top breast cancer centers (U of Mich)that they would use the latest technology but it won't hurt to ask since so much is riding on it. Hopefully I can be confident of the hormone status too.All of the tests were done on my biopsy sample which was from 5 parts of the tumor. Hopefully they retest everything on the tumor at large as I heard tumors are rarely homogeneous. I am getting a list of questions ready for my next consult.
Did any of you ask how bloody your tumor was? From my reading, the higher the density of capillaries, the higher the level of VEGF and the worse the prognosis although new drugs are emerging that target VEGF and some of you seem to be on trials for them.
Most of you have been dealing with this for some time. Does your fear of the worst ever diminish? I keep thinking how unfair this is. No one has ever died so young in any of our families. Why me? I know that my long term prognosis (10 year survival) for me is about 63%, which may be based on old methods of treatments. Russian roulette has better odds.
And I am afraid of chemo. Did any of you go through a regime that wasn't as nasty as some are? Some of you have gone through several different cycles. I guess I won't start chemo until my 2nd surgery to clean up the margins but I want to begin ASAP before the whole thing gets out of control.
People have been supportive and my daughter and grandson have flown in from Boston (750 miles away) to be here but they have to leave. My friends have been great but I don't want to scare them away by being too morbid. My husband waits on me hand and foot. He is very dependent on me emotionally as is my youngest daughter. I can't leave them yet.
I am trying to change my diet to include more fruits and vegetables and alot less fat and meat. Allegedly dietary changes doesn't make much difference for 'regular' breast cancer patients but for some reason it does for us TN patients.
Thank you for your support
sue
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Sue Age 56
Stage 2A, no nodes 3 cm, TNBC,Grade 3 Lumps removed 10-07-08, 10-27-08 nodes clean: Began chemo 12-2-08 4xAC, 4xT dose dense 3 weeks radiation http://suzannekesten2.blogspot.com/ |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Oct 17 2008 at 10:29am |
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Dee Dee,
I did not have a family history of breast cancer on the side of the family from which I inherited it (my father's). Turns out that because BRCA1 mutations don't cause breast cancer in men, and because so many of my father's relatives died in the Holocaust, I had no indication on that side of my family.
As 'luck' would have it, my mother's mother died of breast cancer and so that, along with my young age, and my triple negative status gave us enough pause so as to take the test and I came up BRCA1+.
Then, each of my parents tested and shockingly, my FATHER came up positive and my mother was negative.
Hope that helps,
Caryn
PS -- the BEST place to start is with a certified genetics counselor. He/she knows more about BRCA than most doctors I know and can help you manuever (sp?) through the ins and outs.
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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Sbb123
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Joined: Oct 10 2008 Location: United States Status: Offline Points: 11 |
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Posted: Oct 17 2008 at 1:28pm |
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Dee Dee, My hx was also on my father's side. My great grandmother and one of her daughters (there were 2 the other is now 94 yrs old) both died young of breast cancer (I am 41). There were no girls born to my father's generation no girls until myself and two cousins. My cousins have not been tested although now that they know I am positive that may change. I hope thsi helps. I have an 8 yr old daughter and my brother has 3 girls that will all someday get tested as early detection is the key!
Best,
SBB123
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Oct 17 2008 at 1:36pm |
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Hi Suzannek,
I too welcome you to the site! I want you to know that there are many resources here, that may help make this journey some what easier. Also, the more information you have, the more valid questions you can ask.
I don't remember my daughter Lori saying anything that was in her path report as to her tumor being bloody. Someone else just posted about the VEGK, and I did post a link to that for that gal.
Lori too was terrified of the chemo, as I have heard many of the gals here saying. I know that I would be also. Lori just went for the BRCA testing this week, and she said that when they went to draw the blood, that she got cold all over. The person drawing said that she did not have to do this if she didn't want to, that she could change her mind. She said that she had to do this for her children.
All of your fears are well substantiated Sue, and the gals here will tell you that. Just allow us to help you in whatever way we can. We are here for you every day!
To retrieve all the info that is on the site, just click on the new forum"TNBC News, Resources and Tips", then click on " Directions on How to Access our many resources". They are on page 3 right now, and they have the emoticon
 to the left of it. Also there 'Directions for adding your signature to posts right there with that, and also have the to the left. You are doing all the things that you can do to ensure that you are leadng a healthy lifestyle.
Many hugs as you begin this journey Sue,
Nancy Edited by Nancy - Oct 17 2008 at 1:57pm |
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Queenvoodoo
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Joined: Oct 17 2008 Location: United States Status: Offline Points: 7 |
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Posted: Oct 17 2008 at 1:49pm |
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I had the test done - Mine came back negative Thank God. I was undecided as well, but then my daughter asked if I would go thru with it. It was a great relief to me that I would not pass the gene to her.
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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: Oct 17 2008 at 3:50pm |
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DeeDee,
I didn't have any family history w/bc, however my mother had just passed away at age 64 from ovarian cancer when I was dx at age 45. There wasn't any known history of ovarian either.
It must have been 2003, I attended a class through my health care about the genetics of cancer. Risk was determined by percentage, calculated by age factor and closeness of relative and types of cancer. I qualified for my ins. carrier to cover testing. My daughters were young teens at the time. Fortunately, I was negative, but I did grapple with that, really wanting a "reason" for my cancer.
Sue,
All people respond differently to chemo. I won't say it was a walk in the park but for me it really wasn't all that bad. I continued working thru tx and as a single parent, caring for my then 9 & 13 yo daughters.
Another new woman posted recently that has finished tx, with a positive, upbeat outlook. I am fairly computer inept, but those posts were within the past 2 days, I believe.
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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Sbb123
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Joined: Oct 10 2008 Location: United States Status: Offline Points: 11 |
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Posted: Oct 18 2008 at 3:03am |
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As someone who is living wit the gene I think it is important to chime in! It IS NOT a death sentence!!! In fact I did the test because I have a daughter but one of the docs I consulted with questioned why I would want to know given that I already would be consisdered higher risk in the future.
Sure it is a pain. It mean constant montitoring if I opt not to have the bilateral (which at thsi point I am not). I am going to have the ophorectomy at some point in the near future. My daughter and nieces will need to be tested. The good news-they are doing lots of research. The key to BRCA + is early detection and the focus of much of the research is on prevention. Remember-being + for the gene does not mean one will definately get cancer it means they are at higher risk.
Sorry for this post but it is difficult to read all the doom & gloom when you are one of the people dealing with this!
That said- those of you not postive-THank Goodness!! One less thing to deal with on your plate!!!!! To all be well and be strong-this is ahrd-but life goes on!!!!
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Oct 18 2008 at 3:20am |
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Sbb,
Yes, all you say is true, but let's remember that the odds of a BRCA1+ woman getting breast cancer is 87% lifetime. I recently did any unscientific survey of about 1000 BRCA1+ folks. The question was, "Who in their families were women who were BRCA1+ who with no surveillance or surgeries grew old without ever having cancer?" Of about 1000 people 3 told of aunts or other relatives who grew old (or died) without ever having cancer. I was shocked at the fact that so few could come up with someone who never had cancer.
And, no matter how much surveillance you do, if you do get cancer, the odds of it being aggressive and/or metastasizing are higher than then average run of the mill cancer, no matter how early you catch it.
Yes, they are researching. PARP inhibitors appear promising, but everyone I know who has done the clinical trial has had success for a bit and then recurred.
At this point, the only way to extend life with aggressive mets is to try to make it chronic (they haven't done that yet). Once it's chronic, then we can pray for a cure. Until then, we with mets tend not to live long enough to wait for the research, which is coming way to slowly. (Not the researcher's fault; they are woefully underfunded.)
The saving grace about testing even after you've had cancer is that you can monitor more closely and hopefully catch it early (I caught it early and it still spread), but as important, your children can catch it BEFORE. I started out advocating for previvors to do surveillance and keep their breasts, but knowing what chemo can do to the body, I now support previvors in having the surgeries, the only way they can reduce their risk to BELOW that of the general population. 87% down to 2-3% ain't bad.
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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hshapira
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Joined: Apr 30 2008 Location: United States Status: Offline Points: 24 |
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Posted: Oct 18 2008 at 6:28am |
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Have you seen this study? For the first time I feel a bit optimistic
Reported October 13, 2008 Inherited Breast Cancer and Red Wine (Ivanhoe Newswire) -- A new study reveals a common thread between inherited breast cancer and red wine. Investigators from the National Institutes of Health looked for the method by which mutations in tumor suppressor genes such as BRCA-1 lead to breast cancer. They found the normal form of BRCA-1 helps maintain the expression of a protein called SIRT1. SIRT1 in turn inhibits the expression of Survivin, an apoptosis inhibitor suspected of maintaining tumors and helping them grow. However, when BRCA-1 is mutated, SIRT1 levels drop, allowing Survivin to increase. The researchers found resveratrol, a key component of red wine and grapes, strongly inhibits the growth of BRCA-1 mutant tumors in both cultured cells and animal models. The compound wards off the cancers by enhancing the activities of SIRT1, thus reducing the expression of the cancer booster, Survivin. “Resveratrol may serve as an excellent compound for targeted therapy for BRCA1 associated breast cancers,” study author Dr. Chu-Xia Deng was quoted as saying. SOURCE: Molecular Cell, published online October 9, 2008 Inherited Breast Cancer and Red Wine |
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dx 4/05
6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Oct 18 2008 at 6:58am |
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Woo-Hoo!! Let's start poppin' the corks!! Red wine all around!!
If nothing else, we'll feel real good!!
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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Ronda
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Joined: Jul 31 2007 Location: United States Status: Offline Points: 587 |
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Posted: Oct 18 2008 at 9:11am |
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Hi Sbb123,
I just read up on this thread and thought I'd throw my 2 cents in the disscussion.
I too am a BRCA1 from my father's side. I have only met two family member's on my father's side of the family, him and his sister, my aunt who had breast cancer at 37.
Even though I knew I had an aunt with breast cancer, it never occured to me that I was at risk because cancer was not part of my paradigm.
Strangely, at 44, I felt I was going to get breast cancer and I knew where. I started seeing doctors 6 months before a palpable lump could be felt. I had clear ultra sounds and mamograms in the area six months prior, with the exceptin of a teeny tiny cyst that could be seen. By the time the lump showed it grew quickly to a 2 1/2 centimeter. I sensed it was genetic and though the counselor doubted me she tested and I was right.
My 35 year old sister is a health nut, she could easily be on the cover of any health magazine, not an once of body fat....the healthiest person I know. We are half sister's, we have the same father. I called her and told her about the gene, but she felt her lifestyle was such that cancer couldn't possibly find it's way to her. Then she found a lump. It was in the same location as mine and my aunt's. I was jumping up and down telling her to get biopsied. They did a mammogram and said it was a cyst. I was jumping up and down saying they can't tell with a mammogram, to have a biopsy or in the very least an MRI. They gave her an ultra sound and schelduled her 6 weeks out for a lumpectomy on her "cyst" just in case.
3 months from when she first felt her lump the doctors, who knew she could be a BRCA 1, finally got around to removing her 2 1/2 centimeter triple negative tumor. She will be finishing her last round of chemo on Monday.
The bottom line is this:
Yes you can choose not to proceed with prophylactic mastectomy,
BUT you have to rely on doctors to find the next one early. Statistically these things grow sooooo quickly BRCA's have a good chance of spread before they find the second one in time. There is a higher mortality in these second cancers in BRCA's.
AND you shouldn't under estimate what chemo and radiation does to the body. With mastectomies you can often avoid radiation. The first treatments are not so bad, but I feel we have one shot to get it right.
PLUS you will live in the shadow of this disease always.
I went to the young survival conference in February of this year where a women, whose family was used to discover the BRCA 1 gene, spoke. She came from a big family and saw death all around her. The audience was filled with gratitude. A young women stood up and with tears in her eyes, said "Thank you! Because of you my and my sister will live, where our mother and aunt's did not. We both had prophylactic surgeries before the cancer even showed up, and we will live because of you." Not a dry eye in the place.
After learning I had genetic breast cancer in 2007 I chose to have a prophylactic mastectomy and am currently recovering from my reconstructive surgery and prophylactic hysterectomy. The breast cancer drama took 1 1/2 years from my life, and god willing, that's all.
My sister had a prophylactic mastectomy and will be making her decision regarding an oopherectomy after her chemo treatment.
We are all soooooo blessed to have these choices to make, and when making yours, please do not under estimate the aggressiveness of triple negative tumors. There is some logic in not handling, smashing, testing, radiating breasts that are known to be unable to repair cell mutations (that can be caused by injury), this is why observation for BRCA's makes no sense to me.
We are statistics in a horse race to these doctors who advise us, but what we really are is mothers, sisters, aunt's, and grandma's. Make sure you look at this very carefully before you decide. With the uncertainty of insurances these days you don't know what options you will have the next time you ride this ride.
Ronda
P.S. The hysterectomy was a cake walk, and my new boobs are way better than the old ones!
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DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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hshapira
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Joined: Apr 30 2008 Location: United States Status: Offline Points: 24 |
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Posted: Oct 18 2008 at 9:22am |
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Nancy
Your mail box is full. Here is the information you wanted regarding BRCA1 and Wine. The article 'Interplay among BRCA1, SIRT1, and Survivin durnig BRCA1- Associated Tumorigenesis' appeared at the Journal for Cell Biology. That page also has a link to the PDF file. Hanna Edited by hshapira - Oct 18 2008 at 9:26am |
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dx 4/05
6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
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hshapira
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Joined: Apr 30 2008 Location: United States Status: Offline Points: 24 |
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Posted: Oct 18 2008 at 9:31am |
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I too, got the BRCA1 mutation from my father. Since there are are only two females I have known on his side that grew to adulthood history was not indicative for a test. His first cousin died of BC at age 34. His sister, now 74, is OK. However, my father has the virulent form of Prostate Cancer, his brother and two uncles died of Colon cancer. My tumors were aggressive, triple negative and I had my first biopsy at 16.5 I was convinced it was BRCA1 and non of the doctors believed I was. After ten months of reading I got convinced I had to had the test - it WAS positive for BRCA1.
Our gut feeling can be many times right on the mark. Hanna |
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dx 4/05
6 invasive ductal tumors (4 of them grade 3) TN, BRCA1+ 4AC, Bilateral mastectomy, BSO |
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