Hysterectomy questions following ER+ BC

lala1

I have recently found out that I need a hysterectomy, probably due to my Tamoxifen. I have thickened endometrial lining, enlarged uterus, fibroids and a couple of simple cysts on my ovaries. I'm 50 and thinking I'm just starting menopause due to sporadic periods. My dr wants to do a total laparoscopic HX including the cervix and both ovaries. I've been researching post op recovery for this and was wondering if any BC sisters that have had this done can tell me what the recovery will be like? I had a UMX about a year and half ago and had my SIL come for the surgery. She stayed with me for a week then took me to her house for 2 weeks. She also came for the EX surgery planning on staying a week and I only needed her for about 4 days. I'm hoping the HX surgery won't be anything like the MX was. My dr said I should start feeling pretty good in 10 days. My husband was as much help as he could be during MX recovery (he is a man after all and not my choice for some nursing duties!) and what I'm wondering is if he can handle my recovery after HX since my SIL might not be able to come. I also want to know how long before I can drive. And since I'm assuming I will be thrown into full menopause, how do you handle the hot flashes if you can't take HRT?

As you can see, I have lots of questions so any advice would be great!!

SpecialK

I had a complete abdominal hyst/ooph nine years before my breast cancer diagnosis.  I had many fibroids that were no longer asymptomatic, and had always had numerous ovarian cysts, including one lemon-sized one that ruptured.  I had everything removed - which turned out to be a wise move as I had a 3cm pre-malignant ovarian mass that was a surprise, but the surgery was abdominal so comparable to a C-section.  I think your physician's assessment is pretty accurate - plan on a couple of weeks of feeling like you had surgery, then a gradual lessening of discomfort.  Laughing, coughing, sneezing, getting up from a seated or laying position are things you will feel.  Not necessarily all that painful, just an awareness.  I can't answer the driving question because I had a large abdominal incision, but I would think a couple of weeks?  It seems like the decision point is stamping on the brakes.  If you can do that you can drive.  As far as the hot flashes, I just live through them.  Yes, I still have them multiple times a day 13 years later - I was 45 at the time of the surgery.  I am on Femara - chemo and hormonal therapy did not make them better, or worse.  Have you experienced hot flashes already?  Not everyone has them, so maybe you will be lucky! Hope this info is helpful - good luck!  Have you checked the hystersisters site?

 http://www.hystersisters.com/

jarris77

I also had a complete abdominal HX 6 years ago. I can't remember having too much trouble except, as Special K said, at first it is kind of awkward getting up from a seated or laying position. I also remember sneezing without bracing myself and was really scared that I had ripped something loose. That wasn't fun! I was back to work 4-5 or five weeks after the surgery. I was ready to go back sooner but had to wait for my post op visit to be released. Since yours is laparoscopic, I would think that you would be up and around pretty quickly. As far as driving, I was told it was ok to drive as soon as I quit taking prescription pain medication. I did purchase (and used frequently for the first week or two) one of the grabber things (got mine at Walmart). They come in handy when a remote, book, etc. is just out of reach or if you're not ready to bend over and pick something up off the floor.

I also live with the hot flashes. Due to family history of breast cancer (mother and sister - I wasn't diagnosed until 6 years later), I couldn't do HRT. I was thrown into menopause and immediately started having hot flashes. I keep a fan on my desk, turn it on when I need it and go about my day. Mine are not horrible, just uncomfortable for a few minutes several times a day.

Also, I am scheduled to have a laparoscopic hernia repair next week and my surgeon told me he usually tells patients to plan on being off for 2 weeks. I talked him in to letting me go back after one week (as long as everything goes as planned). Thankfully, I have a desk job and don't have to do any lifting.

worryocd

Hi!  I have had a preventative hysterectomy-laperscopic assisted vaginal hysterectomy.  The only pain I felt was in my shoulder from the gas they fill you with so they can see in the abdomen.  The doc told me to take it easy for two weeks and slowly go back to regular activity.  Well I am 38, and have three small kids.  I did too much too soon and had a bleeding complication.  I needed to go back to OR for a re-sewing of my vaginal cuff. So listen to the doc when they say to rest.  Don't lift or bend in weird ways.  Walk around during the day but be sure to rest.  Build up the endurance for longer walks slowly.  Having a laperscopic hysterectomy left me with two small scars on the lower half of my abdomen and an incision in my belly-button which is not visible. The recovery is quicker but it is still a major surgery.  So allow your self more time....just to be safe and don't do too much too soon.  

LW0919

Due to sudden and extreme heavy bleeding after no period for 14 months, my OBGYN also recommended a hysterectomy.  I had 7 uterine fibroids, some were sub-mucosal.  Because of my recent BC diagnosis, it was recommended to remove my uterus, cervix, tubes and ovaries.  They didn't see anything suspicious during the surgery and it went pretty well.  I have been taking it easy so as not to undo anything.  My surgery was done laparoscopically and my cervix and uterus removal were vaginal assisted.  I have3 small incisions, one on either side and one in my belly button.  Other than a bowel movement earlier today that felt like childbirth, it hasn't been too bad.  The soreness is tolerable.  I'm supposed to be out of work for 6 weeks but at this point feel like I can go back after my 2 week checkup.  

I'm 42 and had been in chemopause since Feb. of 2012 so have been experiencing hot flashes.  I'm not sure what to expect going forward.  I know what I've read but guess we will wait and see. Hopefully it will not be too bad.  

They send off all of the tissue and fibroids for biopsy.  I was told it takes 5 days to two weeks for the final reading.  I'm a bit nervous about the wait but most likely it will all be fine.  Still, I want to see and hear its 100% benign.  

PS.  My husband has been helping out too.  It's not as good as we would do it, but bless his heart he tries!

lala1

Thanks, all. This makes me feel a bit better about recovery. I've had a couple of surgeries before the MX, but that surprised me at how long recovery took. My DH was kinda lost but rallied with guidance from my SIL. Now that I've been through that, I think he would be ok with the HX since it's will be a laparoscopically assisted vaginal one (fingers crossed no surprises!) I've been reading HysterSisters to get some tips and am most worried about that first BM! They said I'd have the same issue after MX but I was so drugged for so long afterwards (I thought that since they gave you the drugs, you should take the drugs; all of them!) that I don't even remember if it was a problem. And then this whole idea of extreme pain from gas scares me. I'll keep researching and see if I come up with ways to ease both issues.

My dr is doing another vaginal US next week to decide on the timing of the surgery. My gyn did a biopsy and said since it was negative I can wait till later in the year, Nov is my preference. But my 2nd opinion dr (who said I'm a great candidate for lap HX after gyn said I wasn't, mostly cause she doesn't know how to do them!) said if any of the cysts are bigger then I'll be in much sooner. I'm supposed to make my annual migration north for the summer job and am worried that I won't be up for the drive, much less packing the car. It's an 8 hour drive. Oh well, all I can do is cross my fingers and hope nothing is bigger at my next US!!

Any more tips are most appreciated. It's especially helpful to hear from BC sisters who can compare to MX as well. Thank you!!

lala1

Well, I had another TVUS. Things are actually looking better. My ovarian cysts are half the size on one side but bigger on the other side. The uterus isn't as enlarged and the endometrium lining has come down a bit. None of the measurements are in the range of the drs saying I don't need a HX but they say I can wait till the late fall. I will do another TVUS in August just to be sure that it's still ok to wait. This Tamoxifen is wreaking havoc with my life!! The muscle and joint pain in my hips and legs is terrible. It almost makes me not want to exercise but fortunately I have found that the exercise is what makes me feel better....that along with ginger and turmeric and now tart cherry juice there may be a tiny light at the end of the tunnel. And I think I'll feel better once I have all my lady bits out and take out that cancer risk!

lala1

Well, my doctor just called to let me know that he tested my hormone levels and they are normal. I am not in or going through menopause. This actually bums me out as I thought perimenopause might explain some of the problems I am having such as dizziness, nausea, night sweats, etc. I am assuming this means that when I have the hysterectomy, my surgical menopause will be much worse? Anyone got any insight or advice?

SpecialK

lala - my menopause was surgical - I was 45 and not experiencing any menopausal symptoms yet.  My only issue after the hyst/ooph was, and continues to be, hot flashes.  I did not gain weight, have mood swings, or any other problems.  Throughout chemo and AIs the flashes have remained unchanged.  The only thing that has made a difference in them is adopting an anti-inflammatory diet - it also made a serious dent in my AI induced joint pain.  I am not sure that you can surmise that your symptoms will be worse, or better, it is hard to say until you do it.

madeditor

I had a total laporascopic hysterectomy (for all the same reasons as you), lumpectomy, and lymph node removal - all on July 3. The hysterectomy was the easiest to recuperate from. I could have gone back to work in a week, except for underarm pain and drains. I am happy to report that I will return to the office on July 21 - a couple of weeks prior to my 66th birthday. Chemo and radiation ahead are probably going to be the hardest parts of my journey. Good luck. You'll be fine!

lala1

Thanks, madeditor, for that information. I usually recover very well from surgery but my mastectomy was a surprise because I was in so much pain for so long. Once I figured out that it was muscle related and learned to regulate Flexeril as well as use compression (wear a bra 24/7) it got much better. Other than still not being able to tolerate underwire bras, I'm doing really well. Exchange surgery was easy too. I have a real fondness for propofol!! For some reason, I'm much more worried about the hysterectomy. My doc keeps saying I'll feel really good in about 10 days so will have to be very careful to not overdo it. And I keep reading about all the women who are so glad to have gotten the hysterectomy because their pain is now gone but I don't have any pain or problems! It's more of a prophylactic issue in that I have so many issues that COULD become very bad. It makes me second guess my decision to do this. That combined with my total fear of surgical menopause (I am perimenopausal now but no hot flashes as of yet) is making me crazy!

glennie19

lala, even though your hormone levels are normal, right now,, you could still be going thru peri-menopause. My hormone levels have flucuated soooo much over the past year. My estrogen levels have been over 600 and down to 93.  So if you just look at one lab on one day,, I could look like I'm menopausal or pregnant!!

 

lala1

Glennie19---I'm so glad you told me that! My estrodial levels were well over 700 when he ran my labs. I totally freaked because I knew that was sky high, like pregnant sky high! My doc basically blew me off and said not to worry because Tamoxifen can cause them to go up. He also said it was quite likely that I was in perimenopause. Pretty sure he's right cause about 3 days ago I started getting 1 warm flush every night around 5am. I'm sure it's just the beginning! And I get such headaches and bloating as well as about 3000 other menopause symptoms! I have an appt next week for a TVUS and to find out the date of my hysterectomy. Oh joy.

glennie19

oh, lala, we are in the same boat.  My last level blasted up to over 500 and my ultrasound is tomorrow. I'm sure that a hysterectomy is in my near future.  Keep me posted.

glennie19

Hysterectomy scheduled for Sept 29th.  My uterus is the size of a 14 week pregnancy due to the fibroids,, but since fibroids are heavier than a fetus,, it's the weight of a 5 month pregnancy.  No wonder I feel so bloated all the time. And I do have an ovarian cyst.  I knew that pain I had last week felt familiar.

greenpeace

hi I am writing because my doctor has suggested I get a hysterectomy. I opted last year summer to have the UAE due to large fibroids. It was partially successful but did not shrink them. I am 44 and apparently not going to have children. I go back to the radiologist next week and he probably won't say much. Apparently a myrmectomy is no longer option. I took the brac test and it was not conclusive.  So I am not sure if I should leave the ovaries if I have the surgery. My BC surgeon did not recommend I remove them. I can also also wait until menopause whenever that is for bleeding to lessen. Sigh. I really don't know what to so. The long.. Heavy cycles is nerving to say the least. I can't believe I am so hesitant after having all this other stuff happen.

glennie19

I understand Greenpeace.  Been there myself.  My fibroids are the type that only a hysterectomy will take care of, and yet for the last 5 years, I've been putting it off, hoping to go into menopause. I'm 55 now. Diagnosed with Estrogen pos. BC last year.  Right after my MX, my estrogen levels starting declining,, so I thought,, finally I'm going into menopause. GYN and MO said OK,, no tamoxifen or surgery needed as I'm going into menopause. Well. apparently my body isn't ready for that yet,, as my estrogen levels popped up to over 500 last month. So I'm having the HX next month.  Everything is coming out as they want my estrogen levels to come down.  Do you know what your levels are?   It's rough to be tossed into menopause at your age, since you are not having any signs of it. At least I'm having the ups and down of peri-menopause.  

If you leave the ovaries,, you won't be thrown into immediate menopause.But you will still be at risk for future ovarian cancer. And you will still be making estrogen, which could have effect on your BC.  I would continue to question your BS, MO and your GYN and consider what they all have to say.

farmerlucy

Ladies - maybe you can give some advice about this peri menopause issue. My periods stopped for seven months after a starting Tamox. Then I had the rusty discharge for a month, then nothing for a couple months. Then light bleeding since June 1. Today was really heavy, worse than anything I've ever had. I see my Gyn tomorrow for an prescheduled TVU and pap. Can all this be chalked up to perimenopause? I do have a fibroid. Glennie I'm with you! I'm 54 and ready for this to be over. 

glennie19

sounds like peri-menopause to me.  I had no period for 6 months, then it came back!  Before that,, it was very sporadic.

Let me know what your GYN says! 

mcgis

hi all! my last period was April 2013, chemo ended in 9/2013, radiation in 2/2014. I had my hormone levels checked in Feb. and my Dr. said that it looks like I'm in menopause and would officially be considered that if I don't get a period through 4/2014. Well, I got a period in July 2014 out of the blue. My oncologist switched me from Tamoxifen to Anastrozole in May/June. Now he wants to put me back on Tamoxifen but it put me in deep depression. I visited with my gyno to be checked out as to why I got my period suddenly. I was worried about issues with my lady parts!! They said I can get a full hysterectomy (ovaries and all). A pelvic US indicated one of my ovaries is larger than the other. They did blood work yesterday for CA-125 and will do a endometrial biopsy next week. If all is clear I'll have the hx. 

I'm scared. Can any of you share your experience with your hx? It will be robotic laproscopic so I know recovery will be easier than abdominal.  Are you having bladder issues now? I can't take hormone replacements so how is menopause? I'm wondering if I'll be OK since my hormone levels indicate I'm in menopause?? I should get those done again. Anything you can share with me would be appreciated!

farmerlucy

mcgis - I feel for you. I haven't had the hx, but if doc says to do it I'm all in. I have worried about incontinence with the hx. Thoughts anyone? Did you see that recent study that said Effexor is just as/ almost as effective as HRT?  Hanging in there with you . . . 

glennie19

Mine will be robotic HX on Sept 29th.  I won't be able to take hormone replacement either. But I'm 55 and in peri-menopause,,, so hoping it won't be TOOOO bad.

farmerlucy

Ok - So the ultrasound showed the lining to be 12 mm thicker, so she did another biopsy. So far I don't think she is that concerned. She said she would be if I was NOT on tamoxifen and had similar thickening. They'll call with results in a couple days. Here's my logic 1 in 8 women get BC, 1 in a 1000 get endometrial cancer, increased to 2 in 1000 with tamoxifen. So my odds are really low for that and more than likely tamoxifen is up to it's old tricks. I'm not going there until and if I get there. That's my story and I'm sticking to it!

mcgis

What is an endometrial biopsy like? I was told to take some advil a hour before. Should I expect bleeding afterwards? Pain? Will the procedure hurt? I hate the scraping from a pap smear!!

farmerlucy

The biopsy does hurt but it is over quickly. It is like several really hard pinches. You cramp and spot a little afterward. But after all we've been through it is doable. You got this!

greenpeace

glennie19 thanks. Yeah I have asked my Breast surgeon about recommendations for doctors. I have no idea what the average age of menopause my mother had a hx too. Anyway exhausting to think about surgery again. I don't know what my levels are really.  Sigh . Thanks 

Timbuktu

I had a complete hysterectomy, on Jan 29 of this year.  I had uterine cancer.  It was done through 5 small incisions and I spent one night in the hospital.  I was out of the recovery room at 10 pm and walked out of the hospital and four blocks at 2 pm.  

l. Make sure they don't use that thing that chops up the uterus.  I forget what it's called but just in case there is some cancer, you want it taken out whole.

2. I had very little pain.  Inf act I was on the treadmill right away.  But you shouldn't push too hard.  I did and the dr told me that the incisions are small but the operation is big so you have to take it easy.  It's confusing because they keep telling you to walk!

3. Make sure you don't take any pills on an empty stomach.  I did and my stomach got very upset and I think its what contributed to my developing an ulcer.

4. I had the surgery in New York and flew home to Chicago 6 days later, walked through the airport and everything.  

5. Relax, it's not a bad surgery and it's a relief to get all of it out of me!

farmerlucy

Hi Timbuktu - Sorry for the additional diagnosis. Did the docs think it was Tamoxifen induced? I hope you are doing well. Did you need other treatment for it?

glennie19

the chopping up of the uterus is call morcellation. Yeah,, you don't want that.  Google it and you will find out very bad things. I talked to my GYN about it, and she does not do it.  *whew*

Timbuktu, Thanks for the advice!!  Much appreciated. Hope you are doing well now.

lala1

So last week I saw my doc for my TVUS to determine when to have my hysterectomy and he cancelled it indefinitely!! He said my enlarged uterus was back to normal size, my ovarian cysts were gone completely, my lining was only slightly thickened now and although I still have the fibroids, they were already small and hadn't gotten any bigger. He said to come back in 4 months for another US and we'll just do some "watchful waiting". He thinks I will still need the HX at some point but for now I can try to at least get thru some menopause (I am 51 and just starting to experience warm flushes, dizziness, etc. I've had my levels tested and I'm not in menopause).

So...leading up to this....starting in Jan I had my last normal regular period. I then went 2 months without, had one, then 4 months without. That's when I had my last TVUS (June 2014). I read somewhere that cinnamon helps regulate your cycle so I started adding a bit to my coffee every morning. 2 weeks later....period. Normal, lasted 1 week. 4 weeks later to the day...period. Normal, lasted 1 week. Doc said he didn't know if the cinnamon did the trick but it certainly couldn't hurt. And if regulating my period got rid of the cysts and such, then he was all for it. So for now.....we watch.

My doc does think I should get the surgery at some point. He just feels the Tamoxifen can do so much damage and if I don't need my "lady bits" then remove the risk. But he'd like me to get as far into menopause as possible. He says removing ovaries is also important with BC survivors since so many of us have ER+ BC. My estrodial levels are sky high which makes me nervous.

Since I can't take hormone therapy, I was really worried about surgical menopause. My doc said he'd probably have me give it a try and if it got really bad, he'd put me on Brisdelle. But he said that since I was already perimenopausal, that he didn't think it would be too bad. From his mouth to God's ears!!

 I also told him I was worried about incontinence. He said I could strengthen my bladder now to lessen the risk (which he said is already very low) of problems later. This is how.....pee every 30 min whether you need to or not  for one week. Add 30 min for every 1 hour in week 2. Keep adding 30 min till you build up to peeing every 3 hours. This will help with age related incontinence or surgical incontinence. I asked about Kegels and he said most people don't do them correctly and if you don't, you can do more harm than good. That's why he recommends the other approach.

I have pages of questions that I've asked him about hysterectomies so if anyone has any questions, let me know. I've probably already asked them!!

farmerlucy

That is great news that everything is back to normal for now. Also very interesting about strengthening the bladder. I'm def gonna try it. Still waiting for my biopsy report. I talked to the nurse at my onco's office and she'd had similar bleeding issues to me - and she's never been on Tamoxifen, so I'm guessing much of the problem is simply perimenopause. Lala my SIL had ooph last year at 49. She was quite concerned about not being able to do HRT, but she had no problems at all.