Team ILC Warriors
Comments
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Hi ladies,
I saw my ob/gyn this week and there is a possibilty that I may need to remove my uterus and ovaries. I was supposed to take Tamoxifen last month but I delayed it to see my ob/gyn. When I saw my oncologist the last time, I remember him saying that even if I take my ovaries out, I still can take Tamoxifen instead of AI, but the chances of it helping me as far as reoccurrence may be a little less than AI. But Tamoxifen is better for my body than AI. Is this true? I am scared of having ovarian cancer or cancer of the uterus b/c of Tamoxifen and taking the ovaries and the uterus puts my mind at ease since I am ER+, PR+, HER-. I am 51 years old and still premenopausal. Has anyone here stayed on Tamoxifen even after the ovaries were out? I had double mastectomy last January and radiation afterwards. Do you think taking the ovaries out is a good decision? I had a polyp in my uterus and my ob/gyn said that he has to take the polyp out before I start Tamoxifen. Then I started to think why not take all of them out? What do you think?
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Mel, good luck on your surgery.
New2bc, I stayed on tamoxifen for almost a year after my ooph. My onc wanted me to have 2.5 years on tamoxifen before switching to an AI. Most of your questions are better discussed with your doctors but I think the risk of endometrial cancer from tam is pretty low. I don't think women have hysterectomies because of that.
Short laywoman's answer is I wouldn't be scared of taking tamoxifen or an AI, as they are good weapons vs BC. But get a few medical opinions on what the right course would be for you.0 -
New, I am not sure what your doc means about tamox being better for your body. It may be in reference to tamox protecting rather than deteriorating the bones (which the AIs tend to do). Apart from that, my strong impression is that the rest of the SEs are similar, except that tamox is slightly more likely to give serious SEs, like uterine cancer and clots.
With ILC, I think a good argument can be made for getting rid of the ovaries, and possibly the uterus as well. There is also evidence to the effect that AIs work better than tamox for ILC.
If you do decide to go the AI route, make sure you get a dexa scan (bone mass scan, easy and quick) before starting, as a baseline.
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Hi ladies ... found out yesterday that I'll be having a bilateral mastectomy June 20 with axillary node removal because my sentintel node biopsy came back positive for 3 of 4 nodes removed. I also found out that I'm also HER2 positive. Sucks.
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Thanks for your insights/experiences lemon68 and Shari. Will let you know what my onc. says at my upcoming visit next Thursday.
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Hi everyone,
Nobody has posted here for a while. I am wondering if everyone is ok.
Lemon68,
How are doing on Tamoxifen? My ob/gyn thinks it is a good idea to take my uterus and ovaries out even though my biopsy results from the uterus was normal. I do have a polyp in my uterus which needs to be removed before I start Tamoxifen. My ob/gyn told me the decision of taking everything out is a reasonable decision. The biopsy of breast tumor was 93% Estrogen and 100% progestrone as far as receptors. I have not started on Tamoxifen yet because of these issues. Did you decide on taking the ovaries out? I know you are scared of the side effects of having no hormones.
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I don't know if anyone here knows yet, but I am on herbal tamoxifen from Dr. Wong and I feel great so far, no side effects!
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Joellelee, what is herbal tamoxifen?
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Hi Joellelee,
I'm curious about the herbal tamoxifen too - is Dr. Wong in Pennsylvania?
Kay
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Hi Newtobc, are you brca positive? I woildnt understand wju you woild have a hhsterectomy unless you are brca positive or have problems that only surgery can fix
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Just wanted to drop in to let you all know that my exchange surgery went well yesterday. Piece of cake compared to the BMX or TE procedure.
I have very little discomfort and am really happy with the look of my new girls. :-) They are just what I wanted.....it's been a long time coming!
Will be posting pics on my thread on the picture forum soon.
:-D0 -
Congrats Kestrlegurl... so happy for you. I had mine on may 30th and posted on pic forum. I need to post some more for 1 week postop. Stay on top of meds so pain doesnt get ahead of you. Healing hugs
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Hugs to you, Mel! :-)
Yes, I am keeping with the pain meds and have been warned by a PS friend to be careful of doing too much, too soon and messing up the final result. She said that is the biggest problem after exchange because people generally feel so good after.
I am back to being a candidate for membership in the IBTC with my paltry 255 cc 410's, but I am happy to be almost back to my normal self. :-)
Odd, because I really didn't think I would reconstruct when this all started almost 2 years ago.0 -
Hi melmcbee,
I have not done the BRCA test yet. I dont have a family history of BC or ovarian cancer. I am just scared of the side effects of Tamoxifen on ovaries and uterus. I do have a polyp in my uterus that needs to be removed prior to Tamoxifen. I am also scared of recurrence that is almost 100% estrogen dependent. I also have had rectocele for a few years which my ob/gyn told me he can fix while doing the surgery. Some days I am confused if I am doing the right thing as far removing the ovaries and the uterus. Today is one of those days. Can someone help me as far as pros and cons?
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The only thing I can offer is what my medical oncologist told me when I asked if I should have my ovaries removed (I have no family history of breast or ovarian cancer) -- she said removing the ovaries still doesn't obliterate estrogen and that an AI would be necessary to block ER even with no ovaries.
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New2bc, I agree that if you have any doubts than you shouldnt do it. I wanted to have mine removed and my onc asked me why because I would still have to take medicine even if i took them out. On the other hand Im still not sure what good they do me if I am already in chemo/menopause. I think the only reason they said to keep them is to not have to go thru another surgery. I dont know. Maybe someone else can tell us the benefit of keeping our ovaries and uterus.
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Good point, Mel, about the benefit of keeping them post-menopause. I wonder if there is one.
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I'm in the same situation, trying to decide whether to remove ovaries.
My 2nd opinion oncologists recommend that I do.
The only reason I'm more inclined into taking them out is a fear of ovarian cancer, which is very difficult to detect in early stage.
On another hand, I'd like to avoid another surgery.0 -
Hi. I had an oopherectomy in nov 2011. (had had a hysterectomy in 2008 but kept ovaries. Hysterectomy unrelated to BC.) Rare SE of tamoxifen caused ovaries to go into overdrive causing estradiol levels to rise. Was on Lupron for 6 months to chemically supress ovaries but hated the shots. The op itself wasn't a big deal (laparoscopic) but don't think I would have done it just due to BC. I am BRCA neg. That said, I'd have a long discussion with some smart oncs re the connection, if any, between BC and ovarian cancer if you are BRCA neg. It is nice to have that fear off my plate, just not sure there's enough of a risk to justify surgery.
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My postmenopausal friend just had her TE's replaced with implants and had oopherectomies at the same time. Sure enough, sneaky lobular cancer was found on an ovary and now she is stage IV. She had chemo, rads, but had cancer in many nodes. I only have one ovary, am having DIEP in July but will be getting that other ovary OUT sooner rather than later.
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Hi ladies,
Congrats to everyone who's gotten good news--MRIS, final surgeries, etc (I haven't been on here in a while, so I can't remember every post) and hugs to ILC warriors who are disappointed by bad news and need one (((((((hug))))))))). It will get better, promise!
One reason we should try to keep our uterus and ovaries (well, mostly uterus) is that it secretes prostaglandins, which protect us from heart disease. As well, it keeps everything in there nicely in place, and prevents vaginal prolapse and some other horrendous "shifting" of our female parts as we age.
I'm headed (in two weeks) to my PS office to have my nipples "delayed". It sounds awful, but as long as they test negative for cancer cells the procedure will allow me to keep them. Then on July 3 I go in for BMX/immediate recon. Not the way I would choose to spend my summer, but it's the only time I can do it and recover without taking time off work. I'm dreading this in a way, but because I'm staying small (36A) my PS feels that he can do this probably without all the tissue expanders, etc. I hope so. Argh.
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I am in Pennsylvania and Dr. Wong is located in NYC...He created herbal Tamoxifen called TAMWO...You can learn more about him on his site...http://www.georgeycwong.com/curriculum_vitae/
I also wrote about my visit with him in detail under the holistic threads!
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Joellelee, thank you for info on herbal Tamox. I will definitely research it.
Jeanine57, did your friend had any pelvic ultrasounds or CA 125 test done before her surgery to remove ovaries? I know that ovarian malignancies are usually not giving any symptoms until they are in more advanced stage. That's the reason why I'm considering to have my ovaries removed, but I'm so tired of all the surgeries...
Does anyone know what is a risk of developing ovarian cancer for bc person with BRCA negative and what is for BRCA positive?0 -
Maggs09, I don't think she had those tests but she does not have ovarian cancer. She has recurrent lobular breast cancer that travelled to her ovary. When breast cancer travels to another organ, it is still breast cancer. She had bmx, rads and chemo before her exchange surgery.
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Jeanine57,
How long after finishing active treatment, did she remove the ovaries? Was she on any hormonal therapy at all?
Is it common for ILC to spread to ovaries?0 -
I think she waited five months or so. Don't know about hormones. I read early on that lobular can travel to ovaries, I think, but my MO did not recommend oopherectomy for me when I asked about it.
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Maggs, it is not "common," but lobular is more likely than IDC to metastasize to the ovaries. I don't know how often it happens, however. I do know that my surgeon, who only deals with BC, was quite eager for me to get rid of the ovaries forthwith. The risk of mets was not the only reason, by any means, but it played a role.
As for timing, I finished chemo in December, rads in February, had ooph+hyster in March and started femara April first.
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Hi girls,
I'm new here. Apologise for my English - it is not very good.
I'm 35 years old and have two kids - 11 and 6 and a wonderfull and supportive husband. I'm so scared. I visited my doctor twice in the year for the last two years, but he missed that bastard in my brest. The mammography shows nothing wrong, the ultra sound, too. But....here I'm. I was diagnosed with ILS 3 months ago stage 2b but I know nothing can be sure before the surgery and PET scan. I don't have PET scan yet and I'll make it in the end of this month. Here, where I live, doctors don't want to make PET scan but only lung X-rays, ultrasound of internal organs and bone scintigraphy to exclude meths. I make chemo now - FEC. Then will make surgery and more chemo, rads and hormonal therapy. My cancer is ILS , ER+, PR+ HER-, Grade 2, Ki76-15%.
I'm not strong enough to write more for the moment but I read your posts and you girls help me a lot.
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Kiss, welcome! Your docs take a conservative approach to the scans, which is not necessarily bad. My docs use CT-scans, not PET, not sure why.
Have you had genetic testing? Given your age, I really think you should ask for this. It has bearing on the kind of surgery you get.
I also had FEC before surgery, then taxotere chemo after the surgery. I was treated in Greece (although I am not Greek).
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Thank you Momine,
We are some kind of neighbors. I live in Bulgaria. I'll make genetic tests in France after two weeks. The PET scan will be made there, too. I'll insist for mastectomy of the both breasts. I hope the surgeon will take into account my wish. In fact I went to Paris last month for a second opinion. The professor there says it's too early for operation. He wants me to make 4 FEC and 4 Taxotere before the surgery. But here, in Bulgaria they want to make only 4 FEC and then surgery and more chemo....I'm very confused :-(
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