TRIPLE POSITIVE GROUP
Comments
-
Well, I have now missed the herceptin year out window too for the vaccine trial. Congrats and best wishes to those in it however! I will follow closely.
0 -
We do get conflicting info from all our MDs!! My ONC and GYN said I did not need to worry about ovarian ca. Risk is not any different than someone without breast ca since I'm BRCA neg. New research not showing link between the 2. Mets to bone,lung,liver or brain are my concerns with her2 pos.
0 -
SpecialK,
Thank you, thank you for the info. Definitely want to hear all about it once you go. My oncologist is suppose to give me the lowdown from his end when I see him next week. I also didn't realize I needed to be finished with herceptin so thank you for mentioning that.
0 -
momof2 - will keep you posted!
0 -
jack/shore not sure what i am going to do about the stupid ovaries. I am concerned about the ovary/bc risk. Interesting, when I asked my gyn about the ooph she said she did not understand why my oncs were opposing it. She said whether we are in memo b/c of chemo/tamox or removing your ovaries the risks (bone loss, heart health) are the same - menopause is menopause however it happens
my MO said that "surgical" meno is worse than chemical ???
does this make sense to anyone?
arlene - congrats on one year out from treatment!
lago - good comeback!
0 -
Arlene--- Congratulations!!! and Happy Anniversary!!!
chachamom--I thought I had answered your question, but don't see it anywhere, so I apologize if I am repeating myself .
My tumor was 8 mm and yes, herceptin is definitely recommended for tumors 5mm and bigger. I am glad I got it !!!! It was like taking a "tums" compared to chemo!!! lol0 -
rozem - I had surgical menopause - caused by hyst/ooph well before I old enough to be menopausal naturally. It was, and continues to be, problematic. It has been 11 years and throughout I have flashed miserably - numerous throughout the day and night, never lets up. I have not had a continuous night's sleep in all that time. I did use estrogen-only HRT but at a very minimal dose and still flashed big time - of course cold-turkeyed that on the day of BC dx, still flashing terribly on AIs. I was dx'ed with high cholesterol and osteopenia not long after the hyst/ooph as well, that is still being treated.
0 -
Jackboo/Rozem - I thought I had my mind made up to get ooph, even tho it was contrary to my MO's advice. But after getting the same opinion, tho with more explanation, from a second MO at another major center, im thinking ill wait it out, trust the tamoxifen and re-evaluate in a few years. Who knows, I may change my mind again, but the MO yesterday made so much sense in his explanation. I haven't gotten my period back yet, but he told me not to freak when I do. I hope it never comes back, but at 42, he said it likely will.
0 -
SpecialK: thanks for the info....think I'll contact one of the available sites to see if I might qualify and then evaluate what the cost might be. I'm feeling a little vulnerable....the diff between 3mm and 5mm doesn't seem that much to have such a drastic change in treatment.....not that I WANT chemo....just feel less protected. I wish I could find anyone in my age group with the same pathology....
Dance: I called the Oncotype co to try to get an answer....but the tech just said that the Onc was scored based on the Rt-PCR test which uses different methodology than the FISH and that yes, the FISH is more reliable for determining the HER2 status. She suggested I ask my MO to call their office and speak to one of their physicians about my concerns...
So I've emailed my MO to ask her if it's reasonable to consider my score elevated due to the FISH verified status....and asked her to call Genomic Health...
I'm afraid I'm being a PITA! .....and she might fire me! LOL!
Bucky: thanks. You may have already told me but I don't remember.0 -
Omaz, I found a quick reference list with cited sources I made about Oophs....it's listed below. There isn't one big AHA trial/study, but extrapolation based on several of these studies together. Though some state flat out an ooph is beneficial to survival..etc.
Small study showing HER-2/neu over-expression does not adversely and may favorably influence response to adjuvant oophorectomy and tamoxifen treatment in patients with estrogen receptor-positive tumors. (2003)
http://jco.ascopubs.org/content/21/3/453.short
Vietnamese and Chinese women with hormone receptor-positive operable breast cancer benefit from adjuvant treatment with surgical oophorectomy and tamoxifen.
http://jco.ascopubs.org/content/20/10/2559.short
Together these data suggest that, in hormone receptor-positive patients, adjuvant treatment with oophorectomy (by surgical or LHRH treatment (Lupron)) and tamoxifen is likely to be of equivalent or greater efficacy than either
hormonal therapy alone or standard cytotoxic chemotherapy regimens. These data are the basis for the recommendation of the International Consensus panel that oophorectomy plus tamoxifen should be a therapy of choice in receptor-positive
premenopausal women.http://cigjournals.metapress.com/content/8kp7212723662755/
http://jco.ascopubs.org/content/26/2/253.short
**Although early randomized trials of ovarian ablation suffered from small sample sizes and design flaws, a
meta-analysis of their results through the Early Breast Cancer Trialists' Collaborative Group demonstrated a clear benefit from ovarian ablation as a single intervention in the adjuvant treatment of women less than 50 years of
age with breast cancer.
http://clincancerres.aacrjournals.org/content/9/1/486s.short
Moreover, there are recent data that the reappearance of ovarian hormones may stimulate occult tumor cells in hormone sensitive breast cancer. Therefore it seems necessary to inform breast cancer patients about the
possible negative effects of preservation of ovarian function.
http://www.springerlink.com/content/r6v4m18651j17550/
A more recent meta-analysis by the Early Breast Cancer Trialists' Collaborative Group of 12 properly
designed randomized trials found significantly greater disease-free and overall survival rates for women under the age of 50 (with Oopherectomy/Lupron),
regardless of nodal status....
http://theoncologist.alphamedpress.org/content/9/5/507.short
I used data from all these references, and more, my gut and extrapolation. Good luck!!
0 -
chachamom - I understand being a PITA. (Good question for your onc, BTW) I'm sure my doc's have all felt that way about me at one point or another. When I start to feel bad about it, I remind myself that it is my life on the line, not theirs! And then I continue to pester with questions, LOL. Keep at it, it's the only way you will eventually feel comfortable moving forward with whatever decision you make!
I do know of one other woman who was in her 50's (not sure of exact age) with a 3.5 mm tumor, multifocal I believe. 2 docs said chemo, 1 said no tx. The spouse of this woman posted her story on bco here:
Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy
Hope this helps. I know how difficult a decision this is. There are no easy or "right" answers. I feel for ya!
0 -
Thanks, Dance!!! You have no idea how much I appreciate your input!
And all you ladies.....I truly appreciate all the knowledge and experience you share...0 -
TonLee - thanks for taking the time to post all that.
0 -
chachamom you are not being a PITA. What this tells me is your onc hasn't yet explained this in terms that makes sense to you. I'm guessing that s/he will tell you that the oncotype isn't a valid test for recurrence if you are HER2+ because the oncotype test isn't accurate for HER2+. I'd really be interested in what she has to say.
0 -
TonLee - thanks for posting all that and including the summaries, I look them over.0
-
Hi all. If anyone wants the vaccine study info, pm me your email and I will send it to you. I have Sibley's consent form and Wake forest's, which are basically the same.
Special k...interesting that you have to go for blood work when you already know your hla status. I was told that if you get that done via a stem cell place you could avoid the very first visit, which literally is a 15 minute blood test. Maybe I misunderstood.
You have to be enrolled and started within 6 months after your last treatment. For us triple positives that would be herceptin in all liklihood.
First visit-blood work only. I drove down one day, had bloodwork the next morning, left and drove home. 19 hours on the road for one blood test.
Second visit-five days. Day one, six tubes of bloodwork, then a tiny bit of actual vaccine is given in three spots on thigh. Then you leave and are free until day three. Go back, they make sure you didn't react badly. Then, in other thigh you get two vaccine injections, and sit there an hour whle they check vitals every 15 minutes. The you leave until day 5. You go back for a quick check and leave. You have lots of free time.
Third-sixth visit-three days. These visits must happen at least three weeks apart on the exact day, or can go up to four weeks. Day one, six vials of bloodwork, get the vaccine, wait an hour with vitals, and leave. Free until day three, when you have quick check and leave.
Then six month visits, and what I might have missed is a blood test three weeks after the boosters, which will really be annoying. I just noticed the Sibley consent form says 28 visits and I can't figure out how to get to 28 unless I am missing something.
There is no cost to participate, and the tests that I had already had were acceptable. My onc sent all my rcords down. I did not have any other tests to be eligible. He had to certify that I was NED to the best of his knowledge.
Hope that helps. Just ask if you need more info.
Jill0 -
Jack,
I totally missed your post a few pages back...hope my last post helped.
There is conflicting info on just about every step of this breast cancer process....when I research, I find both, for and against, look at the methodology to ensure its a good study (even if its not I keep the data in mind to see if another studies secondary analysis might re-enforce it..)
For instance, the whole lymph node/radiation recommendation last year, the research was done on women who had lumpectomies. A novice in statistics might look at it and say, "well I had a MX so that doesn't apply to me."
But of course it does. Why? Because we know the research shows MX has about the same survival/recurrence rates as lump/rads....we use those studies to extrapolate that if it works well for women with lumpectomies, then even women who have MX and positive nodes 1-3 benefit from rads to the axilla. Because there is no real difference in the physiology of the women, just the tx they chose.
Does that make sense?
I will even look at publications that aren't peer reviewed to determine if they are on the same kind of path as the peer reviewed articles. Getting an article published in a professional journal, is practically a miracle. Seriously. You probably wouldn't believe how difficult it is and the long process...
There are solid method studies out there, done for instance by PHDs at Ohio State U, that aren't necessarily ready for peer reviewed journals...they are working on the process of getting them published, but it takes usually over a year, sometimes two because the research has to be sent to peers in the profession (usually THREE TIMES), reviewed, questions asked and answered, editing, etc.
And that is my "methodology" of finding research to make decisions. I gather it all, and start making some extrapolations, some suggested in the literature, some of my own. (I did this when I decided I wouldn't allow a full axilla dissection (before its omission became standard a year or so ago in women without gross disease.) I made the decision with the above method, over a year before it was officially considered an option. And I had to fight HARD to explain my reasoning.)
If my periods wouldn't have come back. I wouldn't have had an Ooph.
0 -
Gee,
What type of quercetin for some warm fuzzies do you take? Do you order it online?
MORE INFO PLEASE! lol
0 -
For the risk factor question, I ran across this stuff when researching Ooph....
"The risk for developing ovarian cancer appears to be affected by several factors. The more children a woman has and the earlier in life she gives birth, the lower her risk for ovarian cancer. Certain genes defects (BRCA1 and BRCA2) are responsible for a small number of ovarian cancer cases. Women with a personal history of breast cancer or a family history of breast or ovarian cancer have an increased risk for ovarian cancer."
http://www.nlm.nih.gov/medlineplus/ency/article/000889.htm
"Although reproductive, demographic, and lifestyle factors affect risk of ovarian cancer, the single greatest ovarian cancer risk factor is a family history of the disease. A large meta-analysis of 15 published studies estimated an odds ratio (OR) of 3.1 for the risk of ovarian cancer associated with at least one FDR with ovarian cancer."
The family characteristics that suggest hereditary breast and ovarian cancer predisposition include the following:
- Multiple cancers within a family.
- Cancers typically occur at an earlier age than in sporadic cases (defined as cases not associated with genetic risk).
- Two or more primary cancers in a single individual. These could be multiple primary cancers of the same type (e.g., bilateral breast cancer) or primary cancer of different types (e.g., breast and ovarian cancer in the same individual).
- Cases of male breast cancer.
Something for fun:
This "detailed" calculator says I have a 10% chance of getting BC in 90 years of life.
lol
http://www.halls.md/breast/risk.htm
Kids are up....I'm OFF!
0 -
Ton, I took that test and adjusted a couple questions to reflect my diadnosis and my percentage was a lot higher.
0 -
fluff - I did not tell her that I already know my HLA, but if it saves me a trip I will send it to her. I have those reports. The coordinator says the first appt is also to meet the Sibley coordinator (physician). The upside for me going up is that I get to see my DS and lots of friends, so the biggest problem for me is airfare, but I have a great friend whose DH is a pilot for Southwest and she will give me passes so I can fly standby. Trying to arrange right now the first trip because I am nearing the end of my window.
0 -
Toni: I took the test and pre-Tamox only had an 8% chance by age 90.....lol! I should go out and by lotto tickets! After adding the tx...down to 4%
0 -
Just to make sure I am not missing something, the test is for those who do not have breast cancer correct? Hence the reason it only askes if you have benign biopsies, and not an option for the rest?
When I tried to adjust the answers to sort of blend with my diagnosis, it shot to to 30% by 90.
Special k....good look. I hope it turns out to be a good thing for everyone. It would bemneat to be amlittle part of history.0 -
Interesting stuff about family history. Does anyone know how MOs address the ooph question after BC dx in pre-men woman who is adopted or otherwise has no knowledge of all or half of her family history?
0 -
Fluff....I think it's intended for those not diagnosed.....that's what makes it "funny" to me.
I only had an 8% chance of getting BC by age 90......but I'm supposed to be reassured that my reoccurrence prognosis without chemo and Herceptin (per my MO) is ONLY 5%. I've seen other info in this site that indicate just the HER2+ status automatically puts you over 20% risk.... I'm inclined to agree with whoever said "if it recurs the risk was 100%....if it doesn't it was 0%". If one or more of those sneaky little cells is circulating elsewhere in my body.....it was likely there before surgery. So the best I can do is eat well, exercise, and try to live a cancer-hostile life.0 -
chachamom, I thought the test was kind of funny; it gave me a 16% chance of getting cancer. I thought the questions were a little vague, but already having cancer and received all the comensurate information, I probably have a different view point.
0 -
Good Luck SpecialK. Glad you are able to do it!
0 -
I posted it for fun....and as a kind of reality check. I was 10% lifetime risk for cancer according to that....helps me remember the people putting together the statistics aren't always right...even if I fell into that 10%.....I don't believe any one "Calculator" can determine cancer risk for anyone. While we all have things in common, there are just too many individual variables...but its fun to play
0 -
I did the calculator also, with a 15.8%. LOL. When I was first was dx'd, I did a different one that calculated my risk as 1% in the next ten years!
0 -
Hi, FIT Chick, I had lumpectomy and radiation on a 1.1 cm tumor. I am glad that I still have my breasts. I will have to have a mastectomy if there is a recurrence in that breast, but I think my chances are good--85 to 90 percent chance of being cancer free in 5 years. I have a greater chance of cancer in the other breast--1 out of 5 or 6 instead of 1 out of 8 or 9 women, which is the general population risk. However, I am being monitored closely enough that I think it would be caught early. I go for my post-rads mammo at the end of this month to be sure I am cancer free. I also have Herceptin every 3 weeks. My MUGA was better after the first 4 months on Herceptin/chemo than it was before!! Go figure....Good luck.
0
