NOLA in September?
Comments
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Betsy, I had mine out, since my mom died of OC, so the history was there but I was BRCA-. For what that's worth . . .
One thing I do regret is having them out when I did. Breast reduction in March, BMX in April, chemo May - July, tissue expanders exchanged for implants end of August, Ooph end of October. Way too much for my body, and my mind, hormones, emotions, etc etc etc. Long long story, but end result was NOT PRETTY. I am not saying I don't think you should do it, I think I am just echoing what celtic said. If you are in doubt, wait.
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I am a nerd :-) There was a link to an article on this topic on the FORCE website. - -see below(posted by LisaMG on 5/28/11 in the "articles, journals, and reports section")
Abstract
- Women who carry a BRCA mutation have a greatly increased risk for serous ovarian carcinoma and tubal carcinoma. - Since preventative ovarian screening is not effective, these women are advised to undergo prophylactic bilateral salpingo-oophorectomy (pBSO) around the age of 40 years.- Following pBSO, hormone replacement therapy is advisable up to the age of 45-50 years, with the exception of those women with a history of breast cancer.- The advice for women with a familial history of ovarian carcinoma but without the BRCA mutation is less clear. Based on data from the literature, we suggest considering pBSO only in women with at least two first or second degree family members with epithelial ovarian carcinoma.- pBSO is not indicated in women from families without a BRCA mutation who have no family members, or just one family member, with epithelial ovarian carcinoma. In these families the lifetime risk for ovarian cancer is considered to be well below 10%.
http://www.ncbi.nlm.nih.gov/pubmed/212620270 -
Besa - That's an interesting link. I was BRCA negative, with strong FH of BC but no OC. I saw 2 gyn oncs both encouraged me to have tubo-oophorectomy. One suggested I have my uterus out too. I chose to keep it but was happy to part with the rest! I was in chemopause and have had a easy time with surgical menapause. The docs told me that my symptoms of menapause would likely closely reflect my moms. She said she didn't even know when she was going through it since her symptoms were so minimal. So, maybe that's true!
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And my mom was on estrogen replacement for 30 years because menapause was a beast for her... so I sure hope we do not mirror our moms... or I am doomed... she is now 80 and still gets wicked hot flashes... drenched... so I hope that is not my future. My sister who is 5 years older than me ... 53 years old ...she has some night sweats and that's it, for now.
Ok... so I am having stage 2 in one month, and the up side of having the oofrec then is one anesthesia and Dr D is there to fix any scars... the downside is everything else.... probably not compelling enough, right?
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Besa, thanks for the search. All of the related citations to that abstract also conclude that in BRCA- women with histories of "hereditary" bc, but no familial hx of oc, there is no increased risk of oc.
That is what I've previously read and been told, but don't know if there are any newer studies.
Our docs are sometimes speaking to us from their guts or hearts and not necessarily from their brains! It's so hard to understand the relative merits of these. I made the choice to have BMX, even after being told by every one of my doctors that it was unnecessary , when each one admitted that if it were them -- or their wives --- they'd do the same. I found this compelling. Even though I'm a scientist... even though the literature didnt support it. My gut won out. I'm glad it did.
And on a lighter, tighter note... Called the center today with my ongoing problem (sleep) and my new problem (thrush -- from the antibiotic, I think), and was discussing the question of compression as I near my 2week mark since Stage 2. Told very unequivocally that Dr S and Dr D do NOT feel there is ANY benefit AT ALL for ANY ongoing compression garment wear. Well, that's certainly confusing!0 -
Sorry... The negative sign got kind of lost. In the above, that's BRCA-negative women...
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Betsy - Can you have the tubo-oophorectomy done laparoscopically after DIEP? My scars are barely visable. I had one in my umbilicus, 1 just above my pubic bone and a 3rd a little bit off to the left. The biggest was 1 cm long and seriously, I have to search to the scars 9 months out. I think that if you're on the fence about it, you should wait. As others have said, you can't get them back! Are you still in chemopause? If you are uncertain about how severe your symptoms would be, you may be able to get Lupron injections. I think that shutting your ovaries off closely mimics surgical menapause. Like everything else surrounding BC treatment, you have to go with your gut and do what feels right!
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KBodie - My eyes started to puddle up when I read what you wrote about just wanting things to go back to normal. I so get that -- I'm sure all of us do. I'm so sorry you're going thru this horrible time. (But then when u described your breasts as like two huge eggplants, I laughed out loud -. it's a good sign that you can retain your sense of humor! Or maybe u didn't mean that to be funny. If not, I'm really sorry that I laughed.)
I also can relate to yours and Bdavis's dilemna (and one so many of us have faced) about the loss of more organs. Don't u wish a voice would come out of the heavens and just tell u what u should do?! Weighing risks is so hard. I also was told to go for ooph and hyst. I'm not BRCA, but I had so many goofy things going on inside me and was so sick of worrying about biopsies and vaginal ultrasounds, etc. Everyone is so different and it was a miserable year trying to decide what to do. I wish you could just take a break from these decisions for a while. I really think you will never feel this miserable again, so every day may get a little better...
Celtic Antique - LOLOLOL!!!!! A funnel! Great idea! The biggest problem a lot of us had was forgetting to pull our underpants down before urinating. It's weird enough to be sitting on a toilet with the dom pants on anyway. It's no wonder that once in a while you might be thinking about other things and then forget about your underwear! You usually only do it once. Tho I did it twice. So u start to go, and then you notice - hmmm, that's odd, I hear no sound... Then you feel it. And then there's the problem where your outer pants slide down in public, and you don't feel them going down until they're almost on the floor! I know you all think these things will never happen to you - but be warned! LOL!
SurfaGirl - You can cut the legs, because I did for my costume - I used my jewely wire cutters!
Kathryn - Hmmm - maybe I could don my costume a few days early...
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My mom was diagnosed with uterine cancer after breast cancer, so I was considered high risk as well. I had a hyst/ooph in NOLA during one of my revision surgeries. Since there is no effective screening for ovarian cancer, I did not want them any longer. My surgery was done by a fantastic gyn-onc, but had to be done at Omega Hospital because she doesn't have privileges at St. Charles. She felt that I should have my cervix removed as well, and I went with her recommendation. I was already having hot flashes prior to the surgery, and they haven't really changed. I had been taking soy supplements which eliminated them completely, but stopped that after being diagnosed with breast cancer. My mom must have had chemopause, so I don't know what menopause would have been like for her. Unfortunately, her onc destroyed her records a few years after her death, so there is a lot I don't know about her battles with cancer. I didn't struggle much with my decision to have an ooph/hyst and haven't worried about any other effects....I'm just glad that there are 3-4 other types of cancer that I don't have to think about now.
I was asked to create a rhinestone t-shirt design for Marga's Mermaids,and here is a mockup. It's posted on the Charleston thread, but since Dr. M does surgery in NOLA too, it was suggested that I post it here as well.
You can order this as a t-shirt or tank top, and other items like totes and hoodies upon request. You can order it with "Mermaid" singular or plural. The mermaid's body is in peach rhinestones, and the wording is in clear crystals. Her hair can be in gold, brown, black or the red crystals. We recommend that you don't order black hair unless you put this on a garment that is not black. As with all of our rhinestone creations, you can contact us through the website if you want more personalization.
We are doing a lot of pink ribbon rhinestone designs for teams doing Komen and other races and would be happy to do the same if you are on a team and want customized shirts, caps, etc. We donate a portion of the proceeds to Breastoration.org.
For those of you who've shared with me the ups and downs of my brother and his wife trying to have a child together, she is now 13 weeks along and things are looking great. This is their third pregnancy in a year and she lost the other two at about 5-6 weeks. She found out that she's RH negative, so she had the vaccine and that seems to have done the trick. My brother has wanted a child for many, many years and it's been heartbreaking to see how painful it was for him to desire it so much. He's still a bit scared, but they had an ultrasound last week and could see the baby's arms, legs and head, so I think it's becoming real to them now. Many prayers are being said for this baby and I guess in about 7 weeks we'll find out if it's a boy or girl...that will make it so much more real to all of us. Babies truly are miracles...I can't think about this without shedding big tears of joy for my brother.
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Besa... Thanks for the research... I will keep reading
Jerusha... I can almost say with 100% surity that I read on ASK THE DOCTOR that Dr D said 2 weeks mandatory, but 6 weeks for best results... maybe you should visit his site and ask for yourself... He has told me that the nurses say one thing, but he has a different perspective on some things... I had asked him when I could shower and let the water hit my chest, and he said, "Oh the nurses say to wait, but its fine... go ahead" and this was at my DIEP post op.
Amy... Yes, I could have the oofrec laproscopically... so good to know your scars are minimal.
Eve... Luckily I never peed in my underpants... always remembered to pull them down. When I was first in the DOM, I was sure I would want to remove it for more than peeing, but it actually stayed clean ... no mishaps... I think careful positioning is important... When I put it on, I would pre-hook the hooks and pull it up like shorts to just below my hips (and drains), position the crotch for being way up high and centered, and then hook the rest of it up...
Ok.. need to actually work now... the work day has begun... UGH.
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Betsy - During my discussions of further treatment with my onc we discussed having an ooph also. It is a gray area with my family history and BRCA- status. My oncologist had what I thought was a very good suggestion. Start with Lupron shots for a while and see how it goes. If it is unbearable then you can discontinue the Lupron and it is reversible. Basically you can 'try it out' and see how it goes. If it is manageable and you still want the ooph - then you can have it knowing you have experienced the menopause symptoms already. She recommends this for all of her younger women patients. I thought it was a good idea.0
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Lisa and CCBaby - thinking of you tomorrow! I'm hoping that all goes well for both of you. I have no doubt that it will seeing as you are in the best of hands.
I head to NOLA on Saturday for my Stage 2 next Monday. My body is ready but I can not wrap my mind around another surgery again. I just started feeling like myself and now I'll be back to recovering again!! I want Dr D to do everything though - I don't want to have to go back. I had NSM so this could/should be it for me.
TooMuch I'll call you and I hope we can hook up at the Center on Wednesday after you get in to NOLA. I would love to meet you.
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In terms of surgeries, these are complicated issues and aside from the facts (which I need to know) a lot of it is personal choice. How much risk am I willing to handle, what are my personal feelings about surgery and possible side effects? Some physicians are very up to date and have read all the current literature, some not so much. I feel I need to do the research myself so I can make sure I have all the cards on the table. This was my personal experience which changed everything for me - when I was first diagnosed with bc I went to a surgeon who looked at my biopsy results and mammogram and scheduled me for a lumpectomy. I questioned him about the mammogram since my tissue is heterogenously dense and my mammograms are hard to read. I asked him how he knew there was nothing else there. He just ignored the question -never responded to it. I ended up going for a 2nd opinion and without me saying anything the new surgeon ordered an MRI. Turned out I had multifocal bc and the surgery was changed from a lumpectomy to mastectomy. MRI's had become standard of care about 3 months before I saw the 1st surgeon but I guess he seemed not to be ordering them routinely yet. I now research research the literature, I try to know the standards of care. I realized I personally have to be on top of things.
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Sandy, the Mermaid shirt is fabulous!!
There was some talk about scars earlier--my last revision left me with a tender, raised, inflammed scar--and not on the breast that had radiation! Go figure. It was really uncomfortable at the cleavage, where I can actually feel something. Especially when wearing a seat belt. A couple days ago I saw a dermatologist who injected the whole scar line with Kenalog, a steroid. There's already much less pain. We hope the steriod will flatten the scar, too. The red will fade over time.
I had tried creams, tape, silicone, oils--nothing worked. And I've never had a scar quite like this before.
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Anne--Dr. M has given me a steroid shot with two of my previous surgeries (I forget which ones, probably the stage 2's). It really did help relax the bunchiness of the scar. It didn't do much for the appearance other than that, but it helped a lot with the discomfort. She did it while I was under because I think it would have been kind of painful otherwise, especially the one near my tailbone.
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Sandy - great shirt! You are so creative.
Betsy - I had no strong reaction to having my ovaries out (psychological - yes, physical - no), but even without hot flashes there are issues of bone density loss, dry skin, etc. For me, if the doctors weren't waving a scalpel in my face and urging me to get them out asap - I would have kept them as long as I could have. They are definitely missed. (I am BRCA2+)
On another note regarding BRCA - I was at a FORCE meeting the other day and there was a genetic counselor there. She said that there is an additional test to run (about $700) for women who have strong family histories that come up negative for BRCA. I can't recall what it is called but she said it is a more comprehensive test and can pick up the mutation if it is there and the other test missed it. She described the traditional test as doing a spell check on a document but deleting a paragraph first. The document can only check the paragraphs that are there. This test goes and finds the deleted paragraph and tests it too. Anyway, I thought it was interesting since I know a few people who have a lot of BC and OC in their families and come up negative.
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KathrynLA - I believe it is the BART test. Some times they do it along with the BRCA test and sometimes not. I had only the BRCA but my sister got both - and we were tested in the same week but me from CO and her from NY. I think it depends on the doctor ordering the test.0
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Well I have spent much of the morning reading all the pub med articles. Kinda confirmed for me that I should get this all done. My local doctors are very confident they can manage menopausal symptoms as they come. I am skeptical of complete relief, based on the comments of those who have had them out. And in could wait another 5 years and just have a third surgery. But I have to admit at my surveillance appointments, I do feel really anxious, like so this going to be the time? But then when results are ok and Imove on, I don't worry too much about it until the next 6 month screening. But during the time when they see something and want to check itnagain, I think I will be glad when they are out.
What got to me at the consultation with the NOLA GYN is that things very quickly move from tubes and ovaries tom full hysterectomy. This was the case with the other surgeons I have met with as well. Then when I asked about prolapse and sexual dysfunction if isn't there to hold things up, he did say that could be a concern so hen would hace to examine me. So he did and confirmed that although i don't notice anything t this time, I do hav a dropped uterus from delivering 3 big babies and I likely would have more problems in the future. So then the whole discussion went from the laproscopic option to doing a full vaginal hysterectomy so he could tighten things up down there by reattaching ligaments0 -
Sorry that posted before I was done. Anyway, everything leads to something else ya know? So the BRCA diagnosis leads to screening and ultimately, PBM, where instead of implants, i went for the full deal so as not to have foreign objects in me and to get ten side benefit of the tummy tuck. While I am still reeling from that, we go from tubes and ovaries to full hysterectomy to vaginal hysterectomy with reconstruction which sounds like it will all be of great benefit to me, like the tummy tuck with the PBM but one of these times, something could go wrong or be irreversible and i will have gone into it electively!
Anyway, I was being funny with the eggplant comment. Some of my best humor comes at inappropriate times but certainly those times when if you don't laugh, you'll melt into a puddle of tears,, which is definitely where I was yesterday,0 -
KBodie - I'm so glad u found some peace for yourself today.
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BTW, Sandy, beautiful t-shirt! You are one creative lady!
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Thanks everyone for all the comments and topics to think on. Keeps me distracted and you are such smart, strong, inspiring women, I am happy the boards are so busy so I can see what all of you are thinking and talking about. I have a lot to think about during this recovery until stage two in December.
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Lookin at the hip flap scar I have - it looks to me much more like an s-GAP--- lower down. I did not see Dr. D for my post op appointment since he was in surgery. I asked the PA who was there in place of Dr. D. about what type of surgery it was - and she looked at my chart and said that I was scheduled for hip flap (didn't really answer the question). I assume that if the perforators were lower down, Dr. D. would have to use them. My question is - if this was more of a S-GAP than hip flap, how does this change what is done at stage 2? (This was unilateral.) Maybe this is a question I should ask the nurse when she calls at the end of the week....
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Hi Besa. I've seen quite a few Hip Flpa scars (my own included) and I too was surprised how low it was at first. But I believe they keep the scar lower and reach up (so to speak) for the fat, so that you can hide the scar if you want to wear a bikini. If it was higher up it would be harder to hide. You will see that they did not take fat from much below the scar - that would be and S-GAP. Make sense?
Also, Dr D will lipo some of the fat left behind on your love handles to even things out. You'll look great and perfect!
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Thank you Laura, youre very kind
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Lisa - I wonder...will you still be at the hospital on Monday? If so I could possibly stop by if you thought you would be up for visitors. I will be there after 9am for misc appts then surgery at noon.
I also had Dr D and Dr L for my BMX in June! They are an awesome team!
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KatherynLA,
Thank you for your quick response. You women are wonderful! When I remove the compression garment later I will take a look at what exactly was done - to see if most of the tissue removed (there of course is a depression) is above or below the scar line. (Haven't thought about wearing a bikini in years.....)
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Besa - You are welcome. For me I didn't really notice where the fat came out from until much later when the swelling went down. I definitely had a depression where the scar was (right under it) and the missing hip fat felt more noticable when wearing clothes. But as I said it is all evened out in stage 2 (including the fact that after stage 1 you'll look like you have bigger lower hips and thighs. But believe me - you won't look the same post stage 1 as you do post stage 2! Promise.
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My hip scars are also lower than I thought.. but he clearly took fat from above (and below) so yes, my hips and thighs do look more pronounced (now)... at stage 2 the plan is to do a butt lift (pull the fat up from upper thigh (lower butt) up into the void in my butt... and then lipo everything.., one month away and looking forward to it... I am not apprehensive or scared at all... I have been under their care so much so far that they are a comfort... and it gets me that much closer to my end game.
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KBodie,
Wahhhhhhhhh!!! I had my melt down days. Just know, it sucks now, but it will pass and your bod will rock. You will have you life back and do all those things you want to do. You just have to get through this now. Hang in there. Sorry about the decisions. It all sucks, we all agree with that!!!
Nordy, I adjusted your dates and just have Jan 9th. I hope that is right? Celtic_Antique - added yours!
Jerusha, About the Marena. I agree with Jeskachi - Go for the Marena with no zippers on the side. I had both and I only wore the one with side openeings while I had drains. As soon as I could, I went to the pull on (wiggle into) one. I LOVED that one. It was such an improvement over the flippin' DOM.
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