TRIPLE POSITIVE GROUP
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TonLee, mine was 95% er+ too. Yes, please let me know what new gyn you see has to say about it. Thanks.
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i'll be thinking about you tomorrow, specialK. please let us know how it goes. hugs to you.0
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yaya - thanks! How are you feeling?
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SK good luck to you tommorow. Thanks for the wishes and congrats to you Asha. Lago, now that I am at the end of the treatment road, I am starting to worry since there is no "safety net" of H. Did you experience this? Also, I asked my onc for a scan and he said no, due to false positives. Anyone else have that response? Thanks!
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Regarding the Herceptin and other hormone drugs. My Onc. gave a very simple explaination as to how they work. He drew a circle and said "this is a cancer cell" then he drew a short arrow pointing out from the cell . This is an atenna. Along comes another cell and the antenna sucks it in and voila the cancer cell divides." Then he drew a line through the antenna. "This is the herceptin. It blocks the cell from entering the cancer cell. When the cell can't divide it dies."
Peggy
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nmoss - thanks!
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TonLee, thank you SO much for the info on thyroid - will be asking my doc to monitor my levels, for sure. This is really important information to know! (I'm currently getting rads.)0
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SpecialK - sending positive energy your way for your surgery today!!!
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Rozem, here is a link to a video that describes how Herceptin works (scroll down to the bottom of the page):
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SpecialK - thinking about you and hoping your surgery goes without a hitch today!
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nmoss you are not at the end of treatment. You are still getting hormone therapy. No I wasn't concerned about it. The only time I got a little concerned is when I went in for that repeat liver scan earier this month. I hope that's my last one. I know I had some cysts and they wanted to be sure they were cysts but this is my 3rd scan… but hopefully my last.
I believe herceptin and chemo took care of all those fast dividing cells that may have been in our system. The hormone therapy will take care of those who woke up later and decided to come to the party late.
SpecialK Good luck today. I know you'll do great.
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Shore,
My Onc didn't think my periods would come back so until they did, he refused to consider an Ooph. And I was really ok with that because being in chemopause with no periods is almost the same as an Ooph, except without surgery!
Well, they came back. And they came back raging. I bleed every 21 days for about 7-10 days. Once that occured he recommended (based on the literature) that I have an Ooph. In my ignorance I said, "well just take everything and do a hysterectomy!"
Then I started researching and decided (for me) that there are just too many problems associated with the actual removal of the uterus. Up to 50% of women start having issues 10 years out and that number climbs as the years wear on.
The uterus is like a corner stone, or a building block, for the lower abdomen and internal organs. When it is removed things shift to fill the empty space, and those "shifts" can cause all kinds of issues. And do in fact in many women.
No thanks.
So I discussed it with my OB and she was relieved I decided against a hysterectomy. She said once the ovaries and tubes are removed the uterus is "orphaned" and shrinks down to smaller than a walnut (like when on chemo) while STILL performing its corner stone function and keeping the colon, bladder, etc in their proper places. She never recommends uterus removal unless there is cancer. She said taking the ovaries eliminates fibroids, and all the typical problems associated with the uterus....it essentially goes to sleep...lol
So my Ooph is on March 2nd. I'm PMSing right now, and will start bleeding in the next 4 days. I was having break through bleeding...meaning the Tamox makes more blood in the uterus, and when I stand for long periods of time (like at the grocery store!!) occasionally blood just rushes out....what a mess.....
I'm not sure why more Oncs don't recommend an Ooph for women who are highly ER (when their periods come back...if they don't come back it's an unnecessary surgery because the ovaries are shut down). My Onc seemed almost afraid to ok it....like he was doing me harm or something....as if my ovaries are sacred. lol He had no problem shooting me full of chemo, but when it comes to removing the ovaries he was a bit squeamish. (Though I think his faith plays into it a lot.....) But that doesn't explain the other Oncs I've read about on here who have the same sort of hesitation.
My ObOnc told me I am making the wisest choice. There are no guarantees Tamoxifen works for me, and no way to test if it is. So, after all I've done to live, why would I risk it?
That's MY process for this part of the journey....this is a decision women have to make for themselves...
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Special K--thinking of you
Good Luck today!! 0 -
nmoss my Mo says the same thing,"false positives" No scans for me either0
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Prayer and positive thoughts for you today SK!.....MUAH!
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thanks for the insight on the ooph tonlee - you are so right, we have done such hard treatments to date i have no idea why the ooph is discouraged by so many oncs. Thats why I'm going to a new OB - my family doctor referred me. When I told her why I wanted the referral she just looked at me and said "are you TRYING to find someone who will tell you its ok?" i said, yeah basically
SK- good luck w your surgery - i was thinking about the nipple sparing thing and i guess with my type of surgery (huge lumpectomy - they took 6x5x4 cm of tissue and i am a B cup) its pretty much the same thing except in your case they took all the breast tissue
thanks for the explanation all on how herceptin works -
can someone explain to me the reasoning behind taking a baby aspirin? also have any of you thought about metformin? there are a ton of clinical trials out there on this drug, i asked my onc about it and she said she would not recommend taking it outside of a trial - but i know some women on this board who have had their family doctors prescribe it
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Good luck to all with everything going on. I LOVE this thread, such great information and level headed ladies. TonLee, you are admirable...really seeking out what's right for you.
The mechanisms of action with both baby aspirin and metformin are not fully understood, hence the clinical trials. It is thought to be a function of controlling inflammation systemically, especially with the baby aspirin. The metformin might be working in a bit more complex manner, involving signalling pathways and cellular "crosstalk". I have read tons of studies, lots of good results but nobody seems to know why. I take both, and have been for over a year. I often forget to take my pm dose of metformin. I need to take it with a meal to remind myself. I havent felt any se's and the little orange aspirin is yummy. i take a handful of supplements, and that one makes me smile in the midst of gulping all those others down.0 -
Roze,
Unless your periods come back, you likely won't find an Ob to remove the ovaries. It is considered unnecessary surgery if your ovaries are already shut down from chemo.
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rozem my MO explained to me (very simply)that aspirin is a NSAID (non-steroidal anti-inflammatory) .Inflammation has been connected to cancer growth.... So in taking the baby aspirin you would be decreasing inflammation and it maybe decrease the chances of a cancer recurrance. I found this on BCO and from the thread:
Does aspirin suppress the immune system? and will repost what Timothy wrote.
There are reasonable theories that reduction of the enzyme cycloxygene (COX) may interfere with the spread of cancer. COX produces prostoglandins, which are chemicals causing inflammation.
The guess is that these inflammatory signals are necessary for cancer to grow
My MO is recommending taking one a day, so I will
(He is not one to recommend stuff, if he doesn't strongly believe in the benefits) Of course, check with your MO first. Some people have an aspirin sensitivity (bleeding, ulcers, etc.)
I hope this helped! 0 -
Tonlee Thanks-I think along the same lines and I'm preparing myself in the event that my periods return because I think it could definitely happen. If they don't, great-no problem for now and no need to do anything but I want to be ready and have the info. I have the same concern as you that if the periods resume, how do I even know if the Tamoxifen is doing enough? I certainly don't want to wait around to find out! My MO (the one I don't like and I'm dumping) didn't seem the least bit concerned about the possibility or dealing with it until I really pushed the issue-obviously she's not enough of an advocate to be my doctor. But my Gyn and RO both have agreed that it is not a good idea to get my periods again with the high ER/PR positivity. Thanks again for sharing your thinking/opinion-it really helps me and others in our decisions and understanding:)0
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Y'all are really making me think about the OOPH. I've got some reading to do! I've not had chemo/Herceptin and not sure if I will get it (waiting for 3rd opinion), so my only tx would be Tamox. Yep, got some thinkin' to do...
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SK, thinking about you.
RE: ooph and docs- I think this comes under the category of squeamishness of sex- like the hymen- Its usless, is painful during first intercourse- and Docs will not remove it or even give pain meds for it! LOL It must be a guy thing- I think you ought to be able to remove it with anesthia before the first time if you want but did you EVER heareof ANY doc offering that!?! I guess its just me. LOL.
To all, much love and small SEs
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Good info TonLee. For me, the ooph is an easy decision. I can't be at peace thinking estrogen is running amuck in me. My gyn and an onc gyn I consulted with will do it, and im happy not to wait & see if period comes back.
My onc didn't mention daily baby aspirin, but I will definitely ask -thanks for the info everyone.0 -
Holy cow! You all have been chatty in the last few days.
Special k-hope you are feeling all soft and on good drugs! Although I didint really need much. The underarm lipo area was the most sore.
To you ooph ladies-i just saw my ob/gyn last week and had a loooong conversation about hysterectomy. I just turned 57 and was not in menopause a year ago when this started. My hormone levels now show I am menopausal and he said my tissues show that also.
His thoughts-if I was in my mid to late 40s, with a perion likely to come back, he would recommend it, or an ooph. Since I appear to be clearly through everything, he said he wouldnt recomment it unless I am surgery crazy. NOT
I have fibroids, but they have been stable and the ct scan I had in November show no changes, and he said everything looked good.
So...I am going to get a brac analysis, and go with the flow. He wants to monitor me in 6 months because I told him I am paranoid about uterine cancer with tamoxifen. He felt my risk is really small, but said he will do a vaginal ultrasound and exam every 6 months, so I feel much better.0 -
Fluff,
Sounds like you have an excellent OB! I'd be leary of any that wanted to take my ovaries if they were already shut down. That's an unnecessary surgery.
I wish I was in meno so I could skip the Ooph. I hate the down time...and for some reason I can't seem to not rip open stitches. 2 c-sections, the MX, and even the first revision....ripped them all wide open. Guess my definition of keep it moderate and THEIR definition is different.
So this time I asked what that means SPECIFICALLY...and was told it means nothing other than slow walking at the mall, not even running the sweeper until my 2 week check-up! Well duh! I would never have guessed that is what "take it easy" means. I was thinking more along the lines of no ab work, no weights over 15 pounds, no jogging (which I don't do anyway, bum knee).
It seems I am often reminded in BC tx that my definition of something is not always the same as my providers. It is good to get clarification! lol
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Fluff, you mentioned your risk if uterine cancer from tamoxifen being low. Do you know how the risk is determined?
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fluffqueen - if you are now menopausal, why Tamoxifen? I'm still a big newbie on all the hormonal tx stuff and this confuses me. I thought pre-meno was Tamoxifen, post meno was AI. Apparently it is much more complicated than that. ???0
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TonLee- after ANY surgery they recommend you not do things like vacumming etc, I intend to take advantage of that! LOL
Dancetrancer- I thought it was either or for post meno tx. - but maybe someone one else knows better?
I am still experiencing diarrhea- I am not up to the 8 immodium- so theres no reason to call, but if it continues, I will call them. ugg. I have been very careful to just eat pretty much brat diet. ugg again.
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Rozem, my onc wants me to take a baby aspirin for my heart. I did Adriamycin + I'm on Herceptin, so it's just a heart thing in my case.
I love your definition of taking it easy TonLee! You crack me up.
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Dancetrancer-i was not menopausal when diagnosed last January. Still having regular periods which I was all superior about as My doc said I would have better chance of strong bones, and my skin looked good! Didnt think about the fact that those great hormones continuing so long probably contributed to the bc.
My onc doesnt put patients on an AI until after a year of menopause at least While it is just at a year since my last period, he thinks that chemo triggered all that and wants me to stay on a while longer, even though he does believe it wont come back. Probably later this year or early next, he will switch me over. I am ok with being on tamoxifen for now as I dont want to have to take bone strengthening drugs.
Shore...i think it is a low chance with tamoxifen in general, but I dont know. He did say if I tesed brac positive, (which everyone doubts) there is some potential link to future ovarian cancer, so he might reconsider the hysto at that point. Ther is no one on my moms side with ovarian though0
