Asking for alt views/info/experience regarding hysterectomy.

Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Alternative Medicine

I've been getting some "traditional medicine" opinions, and would appreciate hearing some alternative approach opinions as well.  I like to do a lot of research and don't mind hearing the good, the bad and the ugly/scary.

My background ~ October 2010 - 43 at diagnosis, BRCA2 mutation of "unknown signifigance", highly ER/PR positive, high Ki67 score, oncotype score of 15, premenopausal.  Chosen treatment was bmx and 5 years of tamoxifen with MO and NO's blessing.  

They've been doing transvag ultrasounds every 6 months (because of the BRCA (and tamoxifen?)).  This June they found "signifcant changes" in my left ovary (abnormal increase in size, external nodule with doppler bloodflow around it showing not normal flow something or other (don't have the report with me, sorry!), blah blah.  MO sends me to a Gyno Onc.  Based on my specific history, thinks I should have the left ovary out - which I am in agreement with.  He says it's "probably not" cancer - gives it 10% - but since there is no definitive way of knowing and my BRCA mutation, feels we need to take it out.  

He then gives me more choices and the advantages of each... get both ovaries out, get both PLUS uterus and cervix.  In a nutshell, it was kind of like...."to play it safe" "because you are BRCA2 and have already had BC you are basically a ticking cancer time bomb"...and "as long as we are doing surgery..we might as well get it all".  (By the way, it would be the Da Vinci robot and he's a "highly repected" surgeon)

I was a little taken aback since I thought the visit would just be about my left ovary.  So I've been doing some thinking/research.  My initial thought was to just take the left ovary and keep monitoring.  But with this damn tamoxifen (I'm sure it's causing the abnormal ovary crap..oh yeah.. and now they are seeing a 2cm fibroid in my uterus) I'm worried I'm going to end up with ominous ultrasounds again and end up back in the surgeon's office eventually anyway.  I've considered stopping the tamoxifen, but am a little scared to because of my highly ER+ status ~ plus my husband (and oncologist) would be VERY upset if I did.

So some questions.   Besides taking out "probably good" body parts, what is the advantage to keeping your uterus and/or cervix?  Everyone I've talked to that has had it done seem to say it's "no big deal" and they haven't had any real problems.  Had someone tell me - once you are done with childbearing, their only purpose is to get cancer!

And then I read horror stories of prolapse, pelvic floor integrity issues, vaginal atrophy, bladder issues...but is that less common?  Does it help if you are/stay fit??  My mom had an emergency full hysterectomy at age 40.  She's 73 now and is doing fine.  No pelvic floor issues...some osteoperosis, but she's fully mobile and not in any pain. Doesn't take any pain pills or anything.

If I do get the whole enchillada, are there natural hormone replacement treatments I can do that are okay for ER+?  

I'm meeting with my regular OBGYN today and have a ton of questions to ask her.  She's failry traditional, but is a good listener and does believe in treating the "whole person".

Ugh.  I thought I was all done with surgeries.

Any input is appreciated.  :)

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Comments

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    I am BRCA1+. Found this out a few weeks after my two biopsies and diagnosis of IDC. I made the decision to have a bilateral salpingo - oopherectomy at the time of my BMX. The risk of facing another cancer down the road was just too much for me. I kept my cervix and uterus. I didn't want to take more than I had too. I have never second guessed my decision - need to be here for my family



    I will not lie, it has not been easy, but it is doable and getting better every day. Due to my surgery, I was put on Femara instead of tamoxifen. Instant menopause hit me like a brick wall, but is evening out. I have hot flashes, usually only at night (cool pjs and a little fan by my bedside help). No problem with mood swings, but I have usually been mellow anyway. Personal dryness was an issue at first, but scream cream and patience have greatly helped in that department! My oncologist and I have discussed using something like vagifem if needed in the future (she is ok with it, I personally did not want estrogen due to strong er+ cancer).



    Ovarian cancer is sneaky. I wasn't feeling safe with monitoring only, now I can breathe easier. Still need yearly Pap tests, but that is fine with me. Don't know if any of this helps at all, but that's my experience. Good luck and peace as you figure things out.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Thank you BayouBabe!  I can handle "doable and better every day". ;)  When you say that menopause hit you like a brick wall...what exactly do you mean?  Are you just talking about the hot flashes?  My MO claims that since I've been on tamoxifen (for about 2 1/2 years now) that my body is biologically experiencing symptoms similiar to what it would with no ovaries.  And I don't really have any noticeable side effects (unless it's screwing up my ovaries?).  So he thinks I should be able to handle menopausal symptoms pretty easily.  I've never had a hot flash, but I do get occasional night sweats, which don't bother me much.

    I hear you about the sneaky ovarian cancer.  Screenings and blood tests don't mean diddly squat in detecting it early or if at all.

    I've been reading on this site about the scream cream.  I'm planning on asking my gyno to write a prescription for it when I see her today.  I've been having problems with real low libido and am hoping that it will do the trick.

    Thanks again for sharing.

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    Menopause hit me like a brick wall for a couple of reasons. I was only 44 at my surgery and had not been having any premenopausal symptoms before that. Stopping all of my estrogen from my ovaries and then starting Femara just a few short weeks later never gave my body time to adjust gradually. Thus the brick wall. Now a few months out and it is tolerable.



    Scream Cream is wonderful! Definitely ask for a prescription. My libido is still low, but improving. The cream helps my body remember what it is supposed to do! Once I get these rock TE out and have squishies, I expect it will improve even more. Have my fingers crossed and high expectations!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    I'm almost 47 but still no where near menopausal.  I have my periods every month like clockwork.   But maybe being on the Tamox so long before surgery will help in that regard?  Glad to hear it only took you a few months to feel the SE's are tolerable.

    That's what I'm hoping from the scream cream... getting my body to respond like before...or at least a little bit!  I'm going to be curious if my doc has heard of it.  Was yours familiar with it? Did you print out the pdf of ingredients?

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    I printed out the PDF. However, when I asked for it she just smiled and told me all about the pharmacy she would send it to. My oncologist is great! She was also my breast surgeon - from what I hear it is rare to find one who does both.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    That is rare!  And I did hear it needs to be sent to a compounding pharmacist, which I believe my regular pharmacy is..so hopefully it won't take to long to fill.   My obgyn is great..she's not an onc but has known and treated me for over a decade so I feel real comfortable talking to her and know she will address my questions thoughtfully.

  • lightandwind
    lightandwind Member Posts: 754
    edited July 2013

    Susan, My experience was very similar to Bayou Babe's, dx at age 43 last year, got oophorectomy at same time as mx. Did so because of stage III grade 3 dx and possible micromets, I was at very high risk for recurrence. It was a difficult decision and I had to research extensively. I weighed out pros and cons repeatedly. It was a very tough call with all the pressure, but when it came down to it, I knew I was not going to get chemo, and my situation was very dire, and I was in need of an alternative to chemo.  An oophorectomy plus femara immediately following was it. The surgery itself was fairly easy. I had pain the first day from the air they shoot up into the cervix to do the surgery, and then the pain was fine after that, but what followed, especially for the next six weeks was hard. It was really very hard. Emotionally I felt like I was in a pit, Physically, I felt okay for a couple of weeks or so. I was glad not to be so overridden w/ estrogen, but then after that I felt like I was aging at light speed. Mentally,cognitively, I was in a fog, couldn't remember what I was saying or doing half the time, my personality changed. I felt like I was having to relearn how to do everything all over again. It takes you to a different dimension, and the feelings, attitude, and appearance that accompany youth goes quickly, especially w/ the femara. I will say that even w/ the femara, by month 3, I had put the pieces of my life together and was functioning normally again and felt even and better than before diagnosis. And even though I went through all of that, and had a sad and traumatic farewell with my youth, I do not regret it and I would do it the same all over again, because I believe my choice saved my life, and I am thankful.  I was quickly headed into stage IV territory, w/ high tumor markers of CA 27-29 of 99. Though it didn't show up on scans to confirm a stage IV diagnosis. My onc said that it was likely that I had micromets, just too small to detect. My current TM on CA 27-29 is 17. That was/is just my experience. Wish I could make the decision easier for you. Personally I think the full hysterectomy would be too much, but I don't know.  

  • lightandwind
    lightandwind Member Posts: 754
    edited July 2013

    Also, I eat a lot of phytoestrogens, eat flax and take asparagus powder. There is some research that supports the use of phytoestrogens to combat bc. It's inconsistent though, but for me it has helped me to feel better, sort of like natural hormone replacment. A good diet can do wonders.  I still take femara and a lot of other supplements too. Best to you on your decision.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Thank you lightandwind.  I'm going to start looking into the phytoestrogens, supplements, etc.  I "try" to eat a good diet (less processed foods - more anti cancer foods - kale, beets, lots of veggies, etc)..but feel like I need to kick it up a notch.  I would like to cut back more on the wine, cheese, breads that I have a weakness for.  I'd especially like to get my weight down a bit.  I've gained some weight since the BC and know it's not going to get easier with menopause.

  • lightandwind
    lightandwind Member Posts: 754
    edited July 2013

    I struggled w/ my weight pre dx too. My daily green powder helped me to get off the sugar and coffee. there are all different kinds you can buy. I've had Garden of Life Perfect food. I've had Green vibrance and I've had vitamineral greens ( I can't remember who makes that one). They each have their assortment of greens and other veggies. I like the Vitamineral greens the best of those three. It has loads of stuff and I put it in my smoothies to cover the flavor of green. I count them as my green vegetable sometimes. I try to eat 8 servings of fruits/veggies a day,at least two of those being greens,  but some days I just can't pull it off. Anyway, it (and carrot juice) kept the sugar cravings away, and I had them pretty bad. Since i've been off of sugar, I've lost 20 lbs.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    I just started using Garden of LIfe Perfect Food again.  Maybe I'll have to try Vitamineral greens.  I actually don't mind GOL.  I just put some berries, unsweetened coconut milk and ice in and it's not too bad.  I just have to stick to being more disciplined if I want to get serious about this. I hope I am successful as you! :)

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited July 2013

    Interesting discussion!

    I'm not in your risk situation, although my dx was HER2+++.

    I had a subtotal hyst (leaving cervix and both ovaries in) about 3 years prior to dx of bc, but at that time even less was understood about hormonal issues and certainly no info about them was provided to me at all to help with making choices. One change I have noticed from that, and that did not occur post subtotal hyst but that occured (for me, anyway) with chemopause/menopause later, is some loss of ability to evacuate stool easily. There is less muscular control and sensation in that respect.... which means having to be more conscious about elimination.

    I had weight gain after tx that was a huge problem (and I have never been overweight before). In the last couple of years I have been taking low-dose metformin, which helps both with weight maintenance and with elimination.

    Having the uterus out raised the question of whether the area vacated by the uterus then becomes an area of accumulation and storage of more fat, producing more estrogen due to having the additional body fat -- especially since menopause seriously increases all abdominal fat.

    AlaskaAngel

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Thanks for your input AlaskaAngel.  

    I hadn't heard of uterus removal giving more area for fat to accumulate. Ugh.

    Met with my gyno onc yesterday and she gave me more pro/cons and she could see the rationale for taking just the one vs. all and vice versa.  So decision really is up to me and what my comfort level is with the risk of future problems.  She did mention that they rarely leave the cervix when taking the uterus anymore.

    She did raise concern that I was waiting until the end of August to have the ovary in question taken out.  Didn't think I should wait that long...I called and double checked with the gyno onc and he agreed with her.  So now I'm having the surgery a month earlier. Two weeks from this Monday.  

  • Marple
    Marple Member Posts: 19,143
    edited July 2013

    Susan, will there be any need for lymph nodes to be removed.  If so, lymphedema could be a risk. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Only scenario where they will remove nodes is if they find cancer.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited July 2013

    Ideally, oncs would be integrated with more systemic medicine like endocrinology and gynecology, but in looking at time segments for publications integrating the specialties it seems oncs stayed in their corner and other practices did the same until very recently, with all of them being protective of their area of expertise rather than cooperating with their observations and recommendations.

    I haven't seen any discussion among these specialties specifically giving any consideration to what develops in the area that the uterus occupied once it has been taken out. My comment is only simple-minded observation and speculation on my part (common sense). Aging generally adds weight to the middle of the body in both men and women, and this is accelerated in our overweight society.

    The omentum is what occupies this area other than the uterus and the intestines and bladder. Why no one from any specialty seems to evaluate it in terms of what happens in that vacated area is a mystery to me, since excess fat is what is important endocrinologically and in terms of cancer. It would be interesting to know if there is a higher rate of breast cancer occurence/recurrence among those who have had the uterus removed, or not.

    http://ovariancancer.about.com/od/ovariancancerglossary/g/ovca_omentum.htm 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Interesting points you are bringjng up. My sister had her omentum removed when she had ovarian cancer.

  • Poke
    Poke Member Posts: 225
    edited July 2013

    I'm a compounding pharmacist and I've never even heard of "scream cream" ... Go figure :) Thanks for the tip.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    So glad I found your post. Due to make history (see my signature, below), my onc has decided that I should stop tamoxifen, the only drug available to premenopausal women, and go on something else. That means I need to artificially induced menopause. My oncologist suggested 1) radiating the ovaries, 2) removing the ovaries, or 3) a full hysterectomy. Sounds like no matter what I do, I'll have some serious side effects. Any comments or suggestions?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Po-ke, my gyno didn't feel comfortable prescribing the scream cream until she did a little research.  She wasn't completely familiar with all the ingredients and wanted to look them up, which is understandable since she is responsible for anything she prescribes.  She also was pretty skeptical but not totally unwilling to look at it.

    Steph, are they abandoning tamoxifen because you had a second BC while on it? How old are you?  This all sucks, doesn't it?!  Radiation to the ovaries?  That seems more radical then removing them, but I'm not familiar with what that all would involve.  Why are they giving a full hyserectomy as an option.  Was it like me, where... "well, as long as we are in there we might as well take it all out?"

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    Don't give up on the scream cream. To me it is much safer than estring or vagifem for us e+ girls - no estrogen in the cream. Also, quality of life is a huge consideration. I am too young to be having problems of this nature, cancer is bad enough!



    Also, as a thought, different compounding pharmacies tend to "tweak" the prescription slightly. Maybe one would make the cream without an ingredient your MO disliked. A support group friend of mine has a prescription also. Her MO, however, sent hers to a different pharmacy. We have compared ingredients, both not identical, but both still work. Fingers crossed for you!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Thanks BayouBabe, I will keep on her to see what we can work out.  :)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Susan, yes my MO is abandoning the Tamoxifen because of the second cancer. I am 46. Part of me thinks that radiation to the ovaries would be better than more surgery. I just don't know. As for the hysterectomy, I have been experiencing some spotting which I need to see the GYN about. I don't know this for sure, but I think my MO is considering that the GYN might suggest a hysterectomy. I'll know a lot more after I meet with the GYN Wednesday.



    Susan, did you find any additional information about inducing menopause anywhere else on these boards?



    BayouBabe, what part of Michigan are you from? Are you near Traverse City?

  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    Love Traverse City, but no. Grand Haven. :)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    steph, yes I believe there are many threads about different options for "turning off" the ovaries.  Use the "search" funtion and look in the "hormonal therapy" forums.

  • Momine
    Momine Member Posts: 7,859
    edited July 2013

    I had my uterus out over a year ago. I weigh exactly the same now as I did then. I have had no weight gain due to menopause, but I do work out and eat a sensible diet.

  • jenjenl
    jenjenl Member Posts: 948
    edited July 2013

    I had a full hysterectomy in April this year.  I took it easy for about 3 days and then it was back to full time mom duties.  Since I am BRCA1+ I didn't want to risk it.  I was done having kids.  I haven't gained any weight or issues with anything you listed.  I'm happy it's done...check!

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2013

    I can tell you what it is like to have ovarian cancer.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    BayouBabe, I haven't found anyone on this forum that's from up here. I'm actually from Charlevoix, but thought Munson was a better choice than the Charlevoix or Petoskey hospitals.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Susan, thanks for the tip on searching. I will definitely check it out.

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