It's baaack -my period plus hysterectomy?
I had my bmx a year ago (March 2011) did 4 rounds of chemo - last period was during 2nd round of chemo last June. I started Tamox in August. Recently I got pretty sick from allergies which turned into a brochitis. It was too much to take with hot flashes and all so I got off my Tamox for a few weeks.
NOW I have what appears to be a light period!
The plot thickens - I had a CT scan where they found a benign cyst on my ovary. Because of this cyst and my high hormonal ER and PR + cancer I had - the suggestion has been for me to have a hysterectomy.
I have not had a chance to call any of my doctors to share that I have begun a period. I am not sure that will matter to them.
Ladies - who has started their period again. Also, has anyone had a hysterectomy and what are your thoughts about it. ANY INFO APPRECIATED! I am Wahhhhaaaayyyyy confused now!
Comments
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Hi Sheri,
My periods came back about 3 months after chemo. Since I was highly ER+ and there is no reliable test to determine if Tamoxifen is working, I had an Ooph. Didn't want to take any chances.
Originally I wanted it all out, everything. But I did a LOT of research and discovered that unless it is absolutely MEDICALLY necessary, removing the uterus is not a good idea. When they take it out, they severe tendon-like structures holding it in place, which in turn affects the surrounding internal organs, and it compromises the structural integrity of the entire lower pelvic area.
The research I looked at showed, up to 1 in 3 women have complications (prolapsed bladder into vagina, incontinence, etc) within 5 years of the hysterectomy....and one showed that half, 50% had some kind of complication within 10 years.
So I went back to my Ob and asked about just an Ooph. She said they take the ovaries and the tubes, and that leaves an "orphaned uterus" that shrinks down to the size of a walnut, but the internal structure is not compromised. You keep your vagina, it is not sewn closed, cervix (still get a pap), etc.
I chose this route. I had the Ooph about 6 weeks ago, it was an actual 50 minute surgery, three hours total from beginning to end, and it took only 2 weeks to recover. I am now in menopause (which sucks) and switched to an AI (Femara). Other than that though, three small incisions.
My cousin did the DaVinci for a full hysterectomy a week after me and is still recovering. She has to go back in for a bladder sling as her next surgery. (They take out the uterus and everything falls to fill the void...her bladder "fell" and now she leaks urine all the time...so they want to put her bladder in some sort of sling.)
My Ob is female and was actually relieved when I changed my mind from hysterectomy to Ooph. She said a lot of Obs take it all because the patient insists...but they don't tell the patient all the potential and likely complications. I went to the hystersisters board and talked with women there, on top of the women in my family, and my own research.
In my case the Ooph got rid of the estrogen and I won't have all those nasty potential SE from hysterectomy.
I'd be wary of any Ob who insists on taking it all. My Ob said almost ALL problems (uterine fibroid problems, heavy bleeding, etc) can be resolved by simply removing the ovaries (and tubes). And that as far as breast cancer goes, removing the ovaries is all that is required to stop primary estrogen production.
That's my experience...hope it helps. Good luck to you!
Edited to Add....I don't know how old you are...but something I discovered AFTER making the decision and having the Ooph...if you are under 45 you may want to continue on Tamoxifen (and hope it is working) until after 45 and then have the Ooph/hyst. I've read tons of stuff lately that show women under 45 who go through pre-mature menopause have a higher mortality rate (not from BC necessarily) as those who don't.
Also, you can take Lupron injections to shut down the ovaries to give menopause a trial run....it's chemical castration. But when the shots stop...the estrogen returns.
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If you are young they actually prefer to go with a hysterectomy that leaves the ovaries over an Ooph for many medical situations but each person is different.
If you are going down that road... If at all possible go with laproscopic. It changes things drastically! Recovery is shorter, side effects tend to be lower... I'm nearly 2 years out from a laproscopic supracervical hysterectomy.
Reality is there has been one thing I noticed as not the same for the bad and one for the good.
Good: Positional limitations
due to a "retroverted" uterus are gone.
Bad: Sometimes if I eat food that is too starchy or cheese and not enough fiber I can pay the price for it. A touch more tender, and a touch harder to cope with as there is less in that area it seems to compress things before we get to the end game. That said mine was retroverted so that may not be the same for all.
I would talk to your Dr's and investigate ALL options. It is a big choice. Regardless of which way you go. Hell get a second opinion. Surf the hystersisters site... It's important to know before you do it.
Shell
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Thanks TonLee! Actually it is not my OB who was insisting so much on the total hysterectomy as it is my oncologist who basically told me the only thing the uterous was good for was getting cancer at this stage of the game for me. I am 47 right now - will be 48 in September. I am so glad you told me this - I have a meeting with my gynocologist on the 27th and I am going to discuss the SE's of removing the uterous with him!
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Hi Cuter! They are planning on using the Di Vinci machine so I will only have 3 tiny holes! The robot is really quite facinating.
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SheriBell, I'm glad you'll be talking to your gyn about the SEs of a hysterectomy.
My onc's opinion about the hysterectomy was the opposite of what your doc said. He felt strongly that a healthy organ should be left in place - and I was 59 at the time of my ooph (done to lower risk of ovarian ca) so I guess he felt it was good for something. Um, like making sure I don't pee my pants all the time.
My own feeling is, if it ain't broke don't fix it. If there is a medical reason to do a hysterectomy that's one thing but if there's no reason then leave it alone.
Best of luck.
Leah
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Thanks Leah - I am beginning to see that I definitely need more discussion about this. I get the ooph but not sure why the uterus is involved!
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I had a hysterectomy at 37, complete. My only "advice" is to opt for bio-identical hormones, if possible. They have made a world of difference to me. You can find a good hormone doc by calling a compounding pharmacy and see which docs are doing the most bio-identical work in your area.
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Isn't the whole point of you needing an Ooph/hyster to get rid of Estrogen? Cuter, taking the uterus and leaving the ovaries won't do that....
Leah, my Ob said the exact same thing...she pointed out that reproduction isn't the ONLY purpose of the uterus (structural integrity) and taking it can essentially exchange one problem for a whole new set.
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If you're wondering about scars with just an Ooph....I posted pics...
http://community.breastcancer.org/forum/78/topic/768255?page=12#idx_338
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TonLee - thanks for the pics! That doesn't look too bad at all!
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Hi Kcshreve - I am not sure what bio-identical hormones are - is that something that an oncologist would approve of? I was 97% ER and PR+
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ShariBell-
I was on tamoxifen for 3.5 years after my first bc, and never went into menopause> Then last Dec. they diagnosed a second bc while I was still pre-menopausal and on tamox. So, I had a BMX and a complete hysterectomy last January, in one massive, 6-hour surgery. Here was my thinking, along with my docs:
I was 51, with my second primary, and still on treatment. menopause was no where in sight. So the ovaries had to go to reduce my recurrence rate by about 65%. I also had benign ovarian cysts that popped from time to time. Won't miss that! Your ovaries produce most of your body's estrogen, so that is why their removal can be important.
Next, I had been having bleeding issues while on tamoxifen: really heavy periods, that were making me iron deficient. Those troubles resulted in us taking the rest. If I had not had problems there, we would have left the uterus. As it turned out, it was full of fibroids and would have been a problem. So another good call.
Now I am on anastrozole (arimidex), which is an aromatase inhibitor. While my ovaries are gone, your adrenal glands and brain produce aromatase, that can combine with other things to make estrogen. The anastrazole binds with that aromatase, similar to how the tamoxifen combined with the estroge, and further keeps your body from producing estrogen. But you can't take an aromatase inhibitor (AI) unless you are in menopause, either naturally or surgically. You should check out the hormonal therapy pages here for more details on that.
Now, I am not a doctor, nor do i play one on TV, so this is very general, lay-person understanding. Hope it helps, and hope your docs and give you good answers to your questions.
Chris in NM
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I didn't have mine related to estrogen. I was simply saying that done well it can have minimal side effects TonLee.
The Da Vinci is another great way if it is needed. I only have 3 tiny ones + my belly button. The joke is that I'd had them go in that way to check my appendix when I was 15. My Dr is a sweetie and when he sewed me up there after he corrected the damage they'd done. 15 years later I had a pretty belly button with no visable scaring unless you are up close and extremely personal.
Shell
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Thanks for the clarification Shell.
The SE I mention, and the stats, are from surgeries that were 'done well.' It doesn't seem to matter how well done the operation...they remove a corner stone and everything else shifts. This may not cause an issue in some women, and in some, the issues don't come for a decade or more.
The reason I harp on this is simple. No one told me anything when I was scheduled for my Hysterectomy. Not a single medical professional said that some studies show up to 50% of women 10 years out have issues requiring MORE surgery, or suffer quality of life issues. I had to research that all myself...
Sheri, you may want to go to youtube and watch the procedure. You can watch a surgeon perform what the machine does, or you may be able to find the actual DaVinci procedure. I watched and well, I'll let you make that decision. Yikes.
Also, the reason an Ooph is shorter recovery.....I had on stitch in my belly button..with hysterectomy you have hundreds of stitches on the fascia which is why it takes longer to heal.
I know this is a personal decision...but as I read I want to share what I've learned along the way...because I wish someone was there to warn me ....do you know how many woman (even in my own family) who have had hysterectomies and STILL don't know what their future may hold?
Crazy.
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Cuter,
Did you have the DaVin 15 years ago?
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TonLee. Never had a Da Vinci. All Laproscopic and in a Dr's hands. I've been lucky to have great surgeons.
I said Hyster was Laproscopic, and Appendix when 15 years old was Laproscopically scoped prior to major incision. Appendix went from invistigative laproscopy to apendectomy in very short order. They cared more about closing my major incision then making sure my belly button scars were smooth.
To be clear... I only contributed to the thread because I have had a hysterectomy and the list of possible side effects can be daunting.I tried to keep personal opinions out of it outside of that but each time I come back I so want to say more so I shall.
I know a number of women who've had hysterectomies and to be honest... I don't know of any who've had complcations when they've gone the less invasive routes outside of feeling "too good, too soon" and possibly over doing it so being sore and needing to sleep a bit more. That was right after post-op.
Heck some of the issues mentioned... Prolapse... Incontinence... It can happen without a hysterectomy. Can and does. Infact one particular kind of prolapse causes incontinence. Bladder prolapse. Remarkably they often correct things with laproscopic surgery. It's entirely possible if you have a forward thinking surgeon to take steps to lessen the risks during the immediate procedure.
All options have some up sides and down sides. Reality is that there have been many issues that can arise after an Ooph for women, and many that can arise after a Hyster. I am so glad you are happy with your decision. It is always wonderful when our choices we make are right for us.
If I was to go back and do any of it over the only thing I would want before hand is the BRCA Gene testing first. Right now I have my fallopian tubes andfor those with the gene there iss a slightly increased risk of fallopian tube cancer as well.
Now... Something you might want to be sure about as this is a major decision. Nothing I have seen indicates removal of ones ovaries gives 100% certainty against ovarian cancer. In fact the numbers I found said 80-90% less likely so if a woman had a 30% chance, and we go with 80% reduction to risk there is still 6% risk.
If it was ME... My personal choice in the matter would be to seriously weigh my own numbers and odds. Would I consider an 80% chance of risk reduction worth it? Possibly. Would I consider a 30% chance worth it? No probably not. If we went with the same numbers as above and a woman had a 30% chance, and we used 30% reduction to risk there is still a 21% chance. I'd probably enter the why bother mind set. The bone thining, and increased heart risk might not be worth that little for me. not to mention the increased risk of memory loss and dementia.
Just an FYIhaving a Hyster without an Ooph can reduce your risk by about 36% for Ovarian cancer. That was a bonus for me. I didn't and don't have heart risk issues but if I did I would have factored that in. For me the reason I kept my ovaries is I had turned 30 years old 2 1/2 weeks prior.
Some info that I went with when looking things up:
We can bombard poor SheriBell with information but at the end of the day without knowing some of these other factors... We're flying blind here and offering no more than our personal opinions, and information we've stumbled across in our search.
To be honest I mentioned HysterSisters before but I will say it again... It is an invaluable place.
So... Good luck SheriBell. Do what is right for you but ask questions till you are blue in the face. I didn't arrive at the concept of a hysterectomy over night and tried other options prior to having one done. For me it was medically required as I was hemmoraging basically.
Shell
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Cuter,
Thanks for the info. I do believe these boards are for our opinions and personal experience every bit as much as the latest clinical research. So thank you for sharing yours
Glad your hysterectomy is still working well for you. I also have anecdotal experience of women who have thrived with a hysterectomy and those with complications....which is why I went to the science to make my decision, studies done over a course of decades.
You are absolutely right. We each have to make our own decision...and this isn't an easy one.
Shell I wish you the best.... and Cuter, thanks for the discourse!
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I had a hyster a month ago, because I did not want tamox (family history of ovarian and endometrial cancer). So instead I had the hyster and femara. So far, I feel just fine, better even since they cleaned out a bunch of nasty scar tissue along with the uterus etc.
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Thanks everyone for all the information. Removing my ovaries is not an option - that will be done regardless - I have a cyst on one - they are going to remove that one so I am happy for them to get both while they are in there. I have been on Tamox since last August and I don't feel horrible on it but I feel kind of blah so I am happy to get off the tamox.
The question for me is removal of the uterus - I am not sure why we are removing that too. I am 47 - I don't NEED it but if it is going to cause side effects then I want to be aware of those to make a informed decision.
You ladies are helping me with that piece and I SOOO appreciate it!!! I am not overwhelmed at all so post away!! Thanks again ladies - I really appreciate it.
I have my pre-surgery meeting on April 27th where I will ask my gynocologist all these questions!
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SheriBell... What kind if Cyst? Simple (the kind a woman gets every month when releasing eggs), complex (the kind they worry about)? Just asking... Cyst is a very ambiguous term as I am sure we have all learend with our breasts.
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They are calling is a "dermoid" cyst and it will not go away on its own but will continue to grow. Ok here is the weird thing - these cysts I guess are compiled of all different kinds of stem cells so will very often have hair or teeth growing in them - on the scan it appears to be just filled with fat for the time being - it is 2 centimeters but like fibroids, the can grow to huge sizes if not removed.
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Fair enough. I just looked it up.
Yes it needs to be removed. If you WANT an Ooph then go for it, but talk to a surgeon who removes dermoid cysts regularly and they may offer removal without a bi-lateral Ooph. Not saying this to sway you. I'm saying this to give you information in case it comes up.
Sounds like you have some choices to make SheriBell... I think I'd want multiple opinions on this. Just a personal choice though. Good luck!
Shell
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I have a hysterectomy/ooph scheduled for May 22 and a couple of lung nodules to be removed too. I listened in interest in what you had to say TonLee. It is my worry that I will have problems with my bladder later on. Unfortunately during all the testings (ct scan etc) I had when my periods returned I have a septated uterus which has thickened a lot. It is 11 in thickness and I have been bleeding for 5 weeks now. The GYN Surgeon talked about doing a D&C but he said with the sort of thickness I have he's not too sure I wouldn't have the same problem in 2 years and a thickened uterine wall can be a precursor to uterine cancer.
I'm really not wanting this but I feel I have no option at this point.
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Nora,
That flies in the face of basic anatomy. The lining of the uterus, the endometrium, thickens in response to estrogen stimulation. In a pre-menopausal woman, the endometrium thickens in response to rising estrogen levels during the menstrual cycle, then sheds at the times of menses. In a woman who is past menopause, the endometrial thickness does not vary much from month to month, since there is no longer a monthly cycle of rising and falling estrogen levels.
My OB told me that an "orphaned" uterus does not thicken. Plus you will no longer be on Tamox (likely)....so that is also removed from the equation.
Because of Tamox I also had a thickened lining from my baseline before starting it, and she offered to D & C it, but I declined because I've read the lining will thin with time on its own.
Guess what?
It's gone. 6-7 weeks out of Ooph and my thickened lining (not as thick as yours!) has "resolved."
She assured me 99% of uterine problems are from estrogen (including fibroids!) and once the source is removed, the uterus shrinks and goes "dormant."
I'm not sure what a separated uterus is...but I'd ask if it really matters once it shrinks....separated from what exactly? I dunno about that....
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Everyone has to make a decision based on their own personal situation and feelings. But... my mother had a complete hysterectomy (uterus, fallopian tubes, ovaries) at the age of 51 for a massive pelvic infection/abscesses... and still developed a highly oestrogen-positive breast cancer at the age of 74.
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Not seperated... septated.
A uterine septum is a form of a congenital malformation where the uterine cavity is partitioned by a longitudinal septum; the outside of the uterus has a normal typical shape. The wedge-like partition may involve only the superior part of the cavity resulting in an incomplete septum or a subseptate uterus, or less frequently the total length of the cavity (complete septum) and the cervix resulting in a double cervix. The septation may also continue caudally into the vagina resulting in a "double vagina".
And thank you for sharing that SelenaWolf... That is in line with some reading I had done.
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Oh..hahaha...thanks Cuter!
I have a bi-coronate uterus, only one cervix though...my second son grew in the smaller side and came 2 months early. On imaging it looks like a chamber with a crooked wall down the middle...and that wall is flexible and "collapses" occasionally... almost like a heart with one side much smaller than the other...
My nightmare? When they tried to biopsy BOTH sides and at that time the "wall" was collapsed, so they had to manually stick something in there, maneuver the stick to the small side to open it up, which was difficult to do since the cervix wasn't giving them easy access........OUCH! It hurt and they never even offered a Tylenol!
There was so much blood when I was done it dripped off the table!
But we got the biopsy!
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Oh ouch! I had an anotomically great one that was prone to craptacular cell growth for the cervix... *sigh* Followed by the Texas Chainsaw Massacre look alike contest... I was and am glad mine is gone. ;-)
I am glad they got the biopsy... that sounds awful painful... Trust me. They don't give you anything or tell you to take anything unless you get your hands ona nurse. The Dr's forget.
Shell
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Oh I had to laugh........The top middle pictures looks like a horse and the one down from that looks like chickens scratching. Just hit my funny bone today.
TonLee, I am still in limbo with this even though it's scheduled. I am not on tamoxifen at all. Never have been. It got that thick on it's own when my ovaries woke up and started going crazy with the estrogen they say my body is creating.
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Wow Nora....that's some mighty strong estrogen! lol
Removing the ovaries will stop the thickening. I'm in the school of thought that if it ain't broke, don't remove it!
Good luck with your decision!
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