TRIPLE POSITIVE GROUP
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Rozem when folks ask you what your "prognosis" is just tell them the same as there's… you're gonna die some day. That should scare the shit out of 'em.
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LIKE
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ArleneA, Congratulations!
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TonLee - The comparison group in that study is just observation I think - do you have a ref for tam only as the comparison group?0
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Arlene - congrats.
Tonlee - no period yet, and both MOs told me no big deal if it comes back. My gyn will do it, im just savings doubts now about it in view of the MO opinions.
Rozem - I spoke to 2& MOs and both said ooph has no benefit even if period comes back because tamoxifen covers it. This is contrary to the data TonLee posted, so ill have to ask about that next time. What do you think you're going to do?0 -
TonLee - This article does not report an additional benefit from ovary ablation+tam vs tam alone - it was published in 2007
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My onc and gynecologist both said no need for ooph. I'm brca neg.
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Shore, my gyn spent several years suggesting I consider a hysterectomy due to large fibroids. I resisted since they didn't bother me. In hindsight, I am convinced the fact that I was not menopausal at 55 probably contributed to the bc.
I saw him in January for my annual exam and we chatted a long time. I had all my records sent to him previous to the appt. I hadn't had a period in a year due to chemo, and tamox. All my hormone panels were low. After the exam, he said from the tissues, it was clear I was menopausal now. With that, he no longer recommended the hysto unless I was "surgery happy, or brca+". Said the same thing as your docs.
I told him I had concerns about uterine cancer from tamoxifen, so he said he will monitor me closely. I have a vaginal ultrasound in August.
I plan to tell him that if we are doing one, it is happening before the end of the year as I have maxxed out my deductible. I have also told him if he can't get the uterus out laparoscopally (sp?), then he is only to do an ooph. I don't want another big surgery to recoup from.
And, if I have to do that, I am not going to have a last fat graft as they are at wo different hospitals. I am kind of over surgeries.0 -
Hi everyone,
I am hoping to start the vaccine trial in Sept/Oct. We have family in Maryland so I luckily have accomodations. My question is to those in the Maryland and D.C area. Would you recommend Walter Reed or Sibley memorial Hospital? I will probably be travelling alone so looking for easiest to get to by car, getting around gigantic hospitals, atttention to patient etc. Any input would be wonderful!! Thanks so much!! And please feel free to PM me!!
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I had AC X4 first and now am getting Taxol/Herceptin x12 weeks. The Herceptin will continue until next March every 3 weeks.
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Hi ladies
I continue to follow the ooph versus tam alone debate with interest. My question is this: if the studies showed a definite advantage in an ooph for pre men ER+ women, then why has this not become standard of care? Perhaps this is a niave question because of course funding comes into the equation. I just wish there was clarity for those of us (like me) whose periods have returned; albeit now rather erratic. The 2 studies I have read today on this board are contradictory. Tonlee: towards the end of the article it mentions that there is no way of determining the role of taxanes on the outcome as this was a study from women in the 1990s. Omaz: this article mentions that further analysis is needed for women<40 who are ER+ Just pointing out the inconsistencies in the data at this point. In the UK, the jury is definitely out and my onco's attitude is to sit on the fence as the studies are inconclusive.
At 42 (in Aug) I plan to give Tam another year, re evaluate my hormone status and look again at the data. I'm tolerating Tam very well and not in any rush to face the bone/joint/heart issues from an AL.
Liz
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Omaz - what did you mean about the comparison groups in that study? I guess I don't understand how the studies are done.
Jackboo - my MOs said getting period back is irrelevant since im taking tamox. Even if I can buy that for now, I will only be 47 in 5 years. Maybe at that time an ooph would make more sense for me, so that menopause would be 5 years early rather than 10.
Fluff - MO told me that internal ultra sounds cause uterine lining to thicken, leading to unnecessary biopsies & panic. Going to talk to gyn about that more.0 -
ARLENE! Congratulations on a year behind you!! Woohoo!!!
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Fluff I have read there is a slightly increased risk of breast cancer for women who got their periods early (before 12) or didn't go into menopause till after 55. linky
Congrats Arlene
Tonlee it could be that study doesn't have enough women in it and more study is needed. It could also be that study was flawed or a newer study has come out or about to come out but what is published so far shows something different. Anyone who's onc says no value should print out the study and get their take on it. It's interesting how many oncs say not and some say yes.
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Congratulations Arlene!!!
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Congrats on 1 yr PFC Arlene!
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Hey all,
I copied and pasted that study from a bunch I looked at when I was deciding because I recognized it. I used data from it to compare to the other studies done....It is by far NOT THE ONLY study done. There are several, and I believe I linked them on this thread several pages back.
It is important to understand for the sake of THIS topic, premeno = women who have their periods back. If your periods don't return, then there is no need to remove the ovaries. They're shut down.
Instead of re-searching and re-posting my links, I'll let you look for them back several pages because my kids are out for the summer and things are CRAZY busy round here...lol.
I will say my OB was completely up to date on the latest data for this, while my MO wasn't as well read.
Ultimately this is what it boils down to and you don't need a study to understand it.
If your ovaries are kicking up enough estrogen to restart your periods, then you once again have large amounts of estrogen circulating in your body.
You know estrogen feeds your cancer. So you can....
Take it on faith that Tamox is working and move on.
Remove the source of the primary estrogen production in the body and know your estrogen is not fighting Tamoxifen to reach those cancer cells first.
Perhaps the question you should ask your MOs is...can you assure me that Tamoxifen is working for me? That it is taking care of the estrogen produced by my now-having-a-period ovaries?
If they say yes they can prove it is working for you, RUN. There is no reliable test. None. I've asked at least 7 MOs and several other medical professionals, as well as read up on it.
Sure I had an MO tell me I didn't need an Ooph, that it was VERY likely the Tamox worked. But very likely is not sufficient for me when there is something I can do to ENSURE lower circulating estrogen levels.
"Very likely" may be enough for you. We're each wired different.
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arlene - yay!
momof2 - they are not doing the actual study at WalterReed/Bethesda, I believe they only have admin folks there. I contacted them first since I am very familiar with that hospital campus. I was instructed to contact Sibley - it is the only DC location for study participants to go to at this time. It is in northwest DC almost by the border with Virginia - near Tyson's Corner. I am about to go up to get started so I will be able to give you a full report. The first visit is a one-day, then the vaccine days with either be Tues/Thurs (so a 3 day visit) or Mon/Wed. Not sure yet how long between the one day visit and the start of the actual vaccine - maybe fluff can address that sine she has already started.
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Arlene! Congratulations! Woo hoo!
Interesting discussion re the value of having an oomph.....other than the estrogen level issue....there's also the increase risk that women with hx of BC have of ovarian or uterine cancer, right? BTW: I have my ultrasound to check the cyst in my ovary tonight....wish me luck!
:-( I got the call from my MO yesterday that confirmed that I am indeed HER2+
I knew it....but denial was a fun diversion while it lasted. The FISH test is indeed the "Cadillac" test. What I don't get is...if my Oncotype score is 20 (low intermediate) using a negative HER2......why wouldn't there be a way to predict a score using all the other factors but include the conclusive status of the FISH?0 -
#10 TX/Herceptin treatment went well. I saw the oncologist and he gave me instructions for what comes next. Two more of these treatments. Included in the last one will be my first big dose of Herceptin which will continue every 3 weeks. Monday I get another echo cardiogram . I will start radiation therapy sometime in early July (5-6 days a week for 3-5 weeks depending on what the radiation doc. recommends) and will also start my daily Tamoxifin. Whew. I'm tired just talking about it.
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Woo hoo Kitchenella! You are getting there!
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Arlene: Congrats to you!
Kitchenella: Very best wishes for you as you continue your tx.
Chachamom: I see your her 2 status is confirmed. its alot to take in, but this thread will guide and support you.
Shore1: We are the same age and have the same dilemma I think. I take your point about going for an ooph in 5 years time. Its such a personal decision. Where are you in all this?
Tonlee: Great last post. Thank you again for taking the time to post studies. Anyone making this decision is courageous in my opinion. For me, if I'm honest, a large part of popping the Tam everyday is the "easy factor". Have faith in this drug and I need do nothing more. Facing another surgery, recovery and possible set of side effects is another matter entirely.
I continue to keep an open mind, just wishing my periods would cease naturally. Maybe it will happen shortly, you never know....
I have a reduction appointment with my surgeon in July. I might bring up the possibility of an ooph at the time of this surgery. Has anyone had such an operation and/or do you think it would be feasible in terms of recovery. I seem to have lost my nerve when it comes to going under the knife again. With my lump, I couldnt wait for the day because I knew I had no choice and I wanted the cancer cut out of my body. THE MORE OPTIONS WE HAVE: THE HARDER IT IS TO MAKE A DECISION.
Liz
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SpecialK...I remember thinking that since I was so far out of treatment I wasnt eligible for the vaccine study, that you had to be within 6 months of the end of chemo. But your stats seem to be outside that window....what did I miss? I have been very interested in a vaccine trial for quite awhile!
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geewhiz - 6 months from the end of Herceptin, not chemo. That is unclear from the clinical trial info for this vaccine trial, so I specifically asked the question. They have all my dates and want to enroll me, so this is a legit timeline. Fluff is a little behind me datewise but also done with Herceptin, I believe.0
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Chachamom the issue is that Herceptin works better with chemo and HER2+ doesn't always need the nodes to spread. That's why the onco test results don't mean much if you are HER2+. Some day there will be a test for those of us that are HER+, triple negative or node positive but for right now there isn't.
As far as ovarian/uterine increased risk. I thought it had to do with you also being BRCA+. Not sure if just having breast cancer alone puts you at increased risk. Anyone know the answer to this?
Geewhiz I too thought the same.
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SpecialK: do you know if the trial requires Herceptin?.....even if it's not prescribed due to the size? I read the info online...but didn't see anything that addresses that. I would be very interested if I would qualify. Kaiser won't participate unless and until the 3rd phase....so I'd have to go outside my provider if that's allowed...or wait for Kaiser to get on board.
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Lago: I think the BRAC 1 or 2. Has an even higher risk factor....but just hx of BC counts as a lesser risk factor
WCN.org:
"Even when breast cancer survivors are not BRCA1 or BRCA2 mutation carriers, their lifetime risk for ovarian cancer is three times that of the general population, 1 in 20 versus 1 in 55 women in the general population."0 -
chacha - this is a snippet from the trial info, which I interpret to mean that if you are Her2+, but have not had Herceptin because it was not deemed necessary for you as an individual, you would still fit enrollment criteria. I am going outside my provider also - and travelling which is a personal expense. This was originally a military-only trial, which just widened beyond Brooke Army Med Ctr in San Antonio. The majority of locations participating at this point are still military facilities.
Completion of primary standard of care breast cancer therapies (i.e., surgery, chemotherapy, immunotherapy and radiation therapy as appropriate per standard of care for patients' specific cancer)
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Lago- In the studies that I have read and my MO confirmed this, was that just having (had) BC, we are at an increased risk for ovarian/uterine ca. Also a history of colon ca in your family also increases a woman's risk of BC/ovarian ca. AI's also increase this risk, hence the need for frequent screenings. I can not rememner if the study cited whether HER2 played a significant role in those odds or not. And of course I can't remember where I read this (about a year ago). Tough call for the younger women on this thread.0
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Chachamom - you present a good question - I don't know the answer. I wonder if calling the people at Oncotype would prove helpful? Does your onc still feel the oncotype score is valid???
Also, I asked MD Anderson if I would qualify for the trial - and they said yes, AFTER I finish Herceptin. I don't think they let you in unless you've done the treatment...but it would be good to get confirmation one way or the other if you are interested.
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