NOLA in September?
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No drains! So would love to try your Marena! Will pm you re. lunch - should feel well enough to drive by end of this week or early next!
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Spring -- how soon after stage 2 can you switch to the Marena garments? Are they just as compressive but more comfy? I'm thinking the comfy factor has to do with having no side fasteners as well as softer fabric -- is that right? Do you think it makes sense to get them right off or wait for some swelling to go down? Ive dealt with Marena before and they are very nice to work with, and are good with returns. I once ordered some surgical bras at 5 pm and they overnighted them(for free) so they arrived by 10 am next day. Sorry for so many questions...
Denouement, the impact of removing ovaries on bc occurrence is not the same pre and post menopause. That 50% statistic doesn't apply when your ovaries have already stopped being the main source of estrogen. On the other hand, my understanding is that the risk of ovca is still greater than normal -- even after menopause -- if you've had bc. Sounds like there are a lot of different thoughts on this...which is always pretty agitating.
Didnt know that about the tubes. - thx. That seems like another area of controversy -- I think alot of women just get the oophorectomy rather than salpingo-oophorectomy( tubes and ovaries). So great that your breasts are pretty much 100 % perfect. My stage 2 is next week and I am getting pretty petrified. Perfect sounds very encouraging!0 -
About the Marena.. I was contemplating buying one (or two), but at $95 each, how do you know what size to get, or that the size you get will still be good at week 5?? I am all set for now, but when I have stage II, and no drains, having a garment that is more comfy would be great. With drains, there is no garment better than the DOM in my opinion... it is too painful and bothersome to pull a garment up and down with drains... trust me.
This ovary thing is annoying... I am PRE menapausal, but once I am on Tamoxifen for 3 years, I will be considered POST menapausal... and the ovaires are not the only estrogen producing thing in our bodies, so even after ovary removal we are not estrogen free... UGH.
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In the world of compression garments, "stage 1" garments have zippers and are meant to be worn the first 1-2 weeks (after lipo, usually). "stage 2" garments are meant to be worn after that point and are slightly smaller to account for swelling going down.
I'm fairly sure Veronique makes a stage 2 garment as well, they call it "nonzippered".
It's not impossible to get a stage 2 garment on with drains, you just have to be a little more dextrous. I've found the non-zippered garments to be more comfortable long term because zippers tend to make the sides stiff and when the zipper bends it digs into me.
As far as sizing... you have to look at the manufacturer's size chart and measure yourself, that's the only way. If you're between sizes it's usually better to go with the smaller size.
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Well you all do have me thinking but I am still going to have oopherectomy in dec at the same time as stage 2. I was going to do it last spring but then read several med journal articles about effects of early menopause. So I went to my cardiologist and the director of the women's health clinic at Mayo and said let's figure this out. I am 38 and brca2 with no known OC in the fam. The GYN onc says get them out before 40. The cardiologist says keep them as close to 50 as possible. I have elevated lipoprotein a and a lot more serious heart disease in my immediate family than cancer. So I wanted someone to put all my risks together holistically. And after a year of research, we are back to where we started. The consensus is since heart disease hits later and is more treatable and can be somewhat moderated by drugs like statins and hormone therapy whereas ovarian cancer is highly untreatable and does affect women at a younger age and cannot be moderated with drugs, the ovaries should come out. Even though OC is less likely despite the BRCA than heart disease is for me, OC is more likely to kill me. I am very worried about quality of life issues but the women's clinic said keep coming in for every symptom and we'll work through them to find what helps. And I am a very regret-averse. I would be devastated if I got cancer when I knew I could have prevented it but didn't. So I'm doing it. But not without a lot of worry and fear.
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Betsy, Marena will send you a variety of sizes, styles and you can return for full refund. They also give you a statement that you can submit to your insurance-- if it covers this sort of thing ( I think most do).
Thanks Jeskachi. Helpful explanation. Are you a Veronique more than Marena fan?
(BTW, Veronique was very nice and helpful also, when I was searching for surgical bras after my MXS. They also suggest ordering a variety of sizes, styles, and will take returns for full refund.)0 -
Hi Betsy. I had mine out because I am BRCA+ (although there is no history of OC in my family.) I was not even perimenopausal but there was a strong push by my doctor to get them out - just in case. My mother and sister did not go through menopause until late 50s (57 and 59 respectively), so I was quite a ways off as far as I could tell. I am only 4 months out but my skin feels drier and it is harder to lose weight...but I also feel a sense of relief. That said without the BRCA diagnosis I think I would have road it out and waited.
Amy, what is Femara? I'm trying to find things to take, but because I was ER/PR+ I don't think there's much I can do.
PS - Nordy, you look young and gorgeous to me!
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Kbodie - I struggled with the same decision. I am 41 brca2+ and have had breast cancer twice. My oncologist told me when I was 29 I would need the RRBSO around 40. I dragged my feet and when I got diagnosed with breast cancer the 2nd time I decided to get it done. I was going to have it done with stage 2 but changed my mind and will have it after.
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Just curious on why you are doing it after? I was going to also but then started thinking maybe one less surgery would be good? And Dana helped me consider what questions to ask the GYN surgeon when I meet him at my stage 1 post op. But could still push it until after stage 2. Sometimes I get decision-weary. Thank goodness I have all of you to help work it out in my head.
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Femara is an AI-- like Aromasin, etc. I have been taking for about a year now after having a complete hysterectomy: with the recommendation because of BRCA 2+. I have really had no major complications.
Hope everyone is good. I am doing great! I have not made any other decisions about more follow-up at NOLA--because I was so happy with Dr. Sullivan's work-- I may look at the idea again in 2012.
I am wishing all of you the very best!
Heather- Heatherbless- Facebook: heather tewell
XXOO
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KBodie and anyone else interested...
Do your homework on the statin drugs and the effects on the liver and muscles and look into niaspan and B supplements with a qualified person...also take into account the grade of cancer if it is estrogen fed and the ovary removal choice...and if you have had certain chemos, and rads on the left side and possible effects on the heart....those factors up the risk if there is already a heart issue in your family. Tamoxifen has screwed with my lipids and no amount of diet or exercise is moving the numbers and liver enzyme issues from the Tamox or elevated lipids. I have a Lipid consult at the Mayo with my next Oncology appt. to try and sort through it...some tests show that there are no fewer first heart attacks with statins, just lower lipid levels....I think the true measure for heart attack issues is the calcium.... something test...and a test that measures the size of the floating cholesterol as opposed to the level...I too will be angry if I do not do all I can to keep the Beast at Bay ... but so far it looks like keeping the ovaries is the way my team wants to go...no OC or any cancer history at all in my family but heart more so....ILC can up the risk for colon according to some so I had the colonoscopy after diagnosis and all was good...it certainly is exhausting being proactive and advocating it all....
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I decided on after because that is what works for me and when my gyn oncologist can do. I am still trying to decide what my treatment after surgery that will result in the least amount of systems. I am still trying to find a doctor with experience who is a specialist in dealing with hormonal changes.
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I was 48 yo and premenapausal at BC diagnosis. My BC was highly ER positive, I elected to have a bilat salpingo-oophorectomy because I didn't want to worry about OC as well as BC. I've been on Arimidex for 7 months. Honestly, other then being dry everywhere, I haven't had any side effects. I know that my risk of heart disease is greater now but I've adjusted my diet and I'm hoping for the best. Ofcourse, my lipids, bone density and heart will be monitored too! I just want to reassure you that not everyone has mood swings, weight gain and significant hot flashes. I've had none of those issues.
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toomuch. I want to chime in that I also did not have weight gain, NO hot flashes, and NO mood swings (of course I was a bit of a lose cannon before, LOL!) - in fact they are more even then they were before. They say the best determinator for symptoms are what your mother had. If she had hot flashes when she went through menopause then you are more likely to have them. This seems to be true even when it is surgically enduced menopause.
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Probably true...my Mom's menopause was surgery induced for benign huge fibroids and she was a mess! I love it when people report no side effects because most of the info posted is from people with side effects looking for help and info....not as many good stories posted...
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Yes,most definitely .. Ca-125 can be elevated due to cancer elsewhere !My dear friend Caryns was elevated w no evidence of Ovca, but she was a couple of years out from BC dx when it was elevated & then recurrence to her nodes was found.
Just my 2c,
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Kathryn, as Heather said (Hi Heather!!), Femara is an aromatase inhibitor, similar to Arimidex, and others. They block the synthesis of estrogen. Even past menopause, our bodies produce hormones in other places which are converted into estrogen. These drugs work against that action. They are not uses in pre-menopausal women - that is where tamoxifen is the drug of choice. Different docs use them in different ways, but my onc had me on tamoxifen for 3 years, then switched me to an AI. The Arimidex caused hair loss for me- lots of it! So I put a stop to that very quickly. I switched to Femara, and have not had any more problems with hair loss. I have hot flashes, but may have had those anyway (having gone through surgical menopuase, I often wonder what mine would have been like naturally, and my mom did not live long enough to see hers). I had weight gain on Tamoxifen, lost some of it, and have not gained any back on the Femara at 4 months out. I am achey as all heck though. And dry dry dry. Kathryn, what do you mean you are looking for something to take and can't find anything because you are ER/PR+? Do you mean supplement-wise?
nowords, I would be interested to hear about your liver consult. I have been on statins for too many years . . . lipids have been elevated since an early age, and have a family hx of both cancer and heart disease. Diet and exercise didn't make a dent in the numbers for me.
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Wow... what a hot topic... I think I need to talk more with my doctor (MO)... I don't know anything about statins, lipids etc... I do have heart issues in my family (dad has had numerous heart attacks and then had quad open heart surgery), and I have high blood pressure (ever since I was a kid), so I am curious to hear what negative effects a oofrectomy and hormonal treatments will likely have on my body... but I think the first step for me is to re-test the CA 125 since it was the driving force for my gyn to recommend ovary removal...
AMY (toomuch), I am very similar to you, with 48 years old, highly ER/PR+ (98% for both), so I hear you and your reasons for removal... I too want to never revisit the cancer BEAST again... I just need to find a balance and make the right choice for my body...
And about mom's symptons... my mom was on estrogen replacement for 30 years... had terrible hot flashes, so if we respond like our moms, I am doomed. I asked my sister who is 5 years older than me about her menapause symptons and she seems ok... some flashes as night, but otherwise ok.
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Denouement-sounds like u r doing great. So happy for you. I didn't know besa was here at homewood as we could have gotten toGether. I haven't heard from Running so maybe she is resting.
Running for sanity I am in room 415 if u want to chat or stop by. You may want to call the room first if we r in. We usually head out in the afternoon for a few hours to eat and sit for a change of scenery. My prayers to you for a recovery that god will have his healing touch upon each and every part of of your body emotionally, spiritually, and physically.
Although I felt like I was hit by a train a couple of days after surgery, I am doing well with God's miraculous healing. I was able to have lunch at Mother's Restaurant yesterday, caught a cab to Jax's Brewery as we wanted to buy a painting we had seen earlier before surgery and later relaxed watching the Mississippi river flow by. I don't want to over due it but I'm the kind of person who can't stay still and look at 4 walls all day.0 -
Isn't Mother's great!!!
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Betsy...you may have no issues with lipids and statins etc....I don't think it is a given that this arises...it just did for me...after two years on Tamox....most of the unpleasant stuff has faded...mostly the metabolism and some dry skin...thinner hair...but mine was really thick so I did not have to do anything...did not need antidepressants or effexor for hot flashes...I was tested to be an intermediate metabolizer but since that test was done on me 2 years ago...my Onc said that it is not reliable in some studies so don't worry too much about it....the lipids and other issues may or may not be related...they want to sort it out...and as I am reminded by friends w/o BC who have gone through menopause...most of the stuff could of happened anyway....
I have had two six week breaks before and after stage 1 and 2, because Dr. Massey is concerned about the blood clot issue...some Drs. differ on stopping and for how long...but about two or three days before the 6 week break is up...I really feel the difference energy and creativity wise...like the good part of an old menstrual cycle...so I think something happens with me...I do have better results taking 10mg in the mid morning and 10 mg in the evening....the oncologist did not think it would make a difference but I think I feel better when I do that.
My Mom had a hell of a time with surgical induced menopause...but my sister who is ten years older said that she just got bitchy for a bit and then she was fine...
Maybe a new thread needs started ...
we are veering of recon...don't know if anyone cares...0 -
Amy.. my MO said he would wait until all of my surgeries are behind me to start the Tamoxifen.. I am having stage II in November ....and got a blood clot from my port, so am on baby asprin now anyway (until my stage II surgery)...
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Just to chime in on elective ovarian removal. I had mine removed after chemo and while immediate menopause is no picnic, I do feel a sense of relief (one less thing to worry about). I just want to caution those on Tamoxifen or going on it soon. Unlike Spring, I was a poor metabolizer of Tamox ... sadly no one offered me a test to determine if I was a good metabolizer, I just took it and developed a second breast cancer While on it (18 mos later). Please insist on the test that determines if you are a good metabolizer of this drug or a bad metabolizer. Hindsight. I had no idea this test existed. In any event, all of this backed up my choice to have an ooph (I'm also on Arimidex). The goal being... no more cancer ..... for me ....secondary was concern for wrinkles, hair loss, moodiness. And, yeah, I'm moody... but who knows if it's from lack of estrogen or just trying to regain a normal life after cancer... it's all one big complicated ball of crap that takes years to get through (in my opinion). Peace!!
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ok... so I need at CA 125 test and a metabolizer test for tamoxifen... That is my goal in the next two weeks so I have enough time to make a final decision about an oofrectomy in November... and before Tamoxifen in December... But I am still leaning toward not having the ovary surgery in November....
So HOLT... you had a BMX and then got cancer again in your breasts?
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No. I had cancer in the right breast, had lumpectomy, rads, then cancer in the left breast later ... followed by bmx, chemo, recon. Many many people are good metabolizers of Tamox... me, not one of the lucky ones in that regard... but I still feel rather lucky that both times, I had early stage... so no pity party here. Just want others to make sure to get that test so you know if Tamox is the drug for you.
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holtbolt - i wonder if i was not a good metabolizer of tamoxifen either, i had never heard of this test but in 2000 i had triple negative cancer. then found out in 2006 i was BRCA2+ was put on tamoxifen - gained weight and then in 2011 developed ER/PR+ while on it. Was that test available in 2006?
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I am surprised that you were given Tamoxifen as a triple negative....I have heard of it switching but usually the other way...positive to negative....
I had the test in 2009....do not think it was available too long prior to that but not sure...My Oncologist said the test is not always right though...
You can be a poor, intermediate or extensive metabolizer and I was told the worse the hot flashes atnd side effects the more you can tell it is working...studies are conflicting on this now, as well as studies on certain anti depressants not being compatible with Tamox for metabolizing it...at first it was no, don't take many of them and more recent studies show, maybe it does not effect it...exhausting trying to make choices...
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Amy - yes, I was referring to hormone replacement. They said not to even think about it for at least 5 years - once I'm deemed cancer free and since I was ER/PR+. My Onc did not suggest Tamaxofin or the like because I had such a small cancer, found so early, and because I had a salpingo-oophorectomy. If I hadn't had the later it was up for discussion...but without my ovaries he didn't see a point to it.
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Hi Springtime. Add me to the calendar - I'm scheduled for surgery on Oct 27th (just in time to get home for Halloween!) Dr S, SCSH. They are doing scar removal on my stomach. Don't know if you'd call this 2B (not really working on my breasts as far as I know), or 1C (but no doing tats), or 1D?
Thinking of bringing my kids since they are soooo curious about the whole New Orleans experience. We'll see. Probably heading home on the 30th.
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This is a very interesting topic. I hear you Betsy about not wanting ovarian cancer but also balancing quality of life issues.
The ladies who are BRCA positive, if I was you, I would have them out too!!!
I know for me, I was so scared when initially dx'd with BC that I did every thing super aggressive. Now, 3 years out, I wonder if I did the right thing in all cases. Blasting myself with RADs with no positive nodes (my onc and Rads onc insisted I have them, large tumor) but now I wonder if that was right, given my truncal LE issues. My white count is still below normal 3 years out. ugh. My bone marrow was very hammered by the "treatment".
Anyway, You can't put your ovaries back in, so Betsy, you and me kid. Let me know what you find out as you research. For now, I'm keeping mine, but I may have the out later. It is a tough decision. QOL vs. less fear of OC. ugh.
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