Hysterectomy Information

Twiceasnice

Hello--

 Last week I had a D & C and hysteroscopy because I was experiencing very light breakthrough bleeding. 

I have been on Tamoxifen for about a year, and receive a monthly Zolodex injection. 

I know that there is a fibroid that remains (which he biopsied). I get the results Friday. But have a feeling my obgyn may suggest a hysterectomy out of fear the fibroid could eventually turn into cancer since I am on Tamoxifen. 

I thought only BRCA 1 and 2 women generally get hysterectomies to treat BC.

Can anyone suggest good questions to ask my obgyn and my oncologist, when I see him next week (as part of clinical trial I am on.) 

When are hysterectomies generally recommended for women who have had breast cancer? 

Thank you!

solange49

Hi Geminihalf. I'm sorry I don't know how to answer your question but I'll "bump" you up so hopefully someone else will.



Diana

ppplocke

I had one in June. I was BRCA negative but when we pushed my oncologist to recommend other things (besides chemo, rads, surgery and Tamoxifen) to lower my chance of recurrence she immediately suggested a hysterectomy. I was only 39 at diagnosis so years away from menopause and my cancer was 85% estrogen fueled so we wanted to minimize estrogen production as much as possible. I had mine done robotically and it was a breeze. If you end up doing it see if anyone in your area does this robotically or at least laparoscopically.

jennyboog

It was my understanding that a hysterectomy is recommended for any ER+ patient, whether they BRCA+ or not.  If one is not done then they would have to take Lupron injections or something similar to stop the ovaries from working.  I had mine in June, laproscopic, and it was super easy.  I was sore in the lower abs for a few days but overall I got along great.  It would also lower your chances of reoccurence since ovaries produce the most ER and a med will hopefully take care of the rest. 

Fearless_One

Mine was robotic and I was back to work in 3 weeks.    I would not advise keeping ovaries.   Not sure why women do this (get hysterectomies but keep ovaries) - at some point we will all be in menopause, anyways.  

Twiceasnice

Thank you for all of the great information.  I just re-checked my original path reports (it's been a while) and my ER is 100% / PR 85% and Her2 positive, as I said. Stage III/4 of 18 nodes, grade III.

I guess I'm surprised that my onc never really raised the possiblity of having a hysterectomy at some point, given what you ladies have shared with me. I was under the impression that, with the Zolodex shots (similar to Lupron) and Tamoxifen, that ER was under control.  

The first time this option was really discussed was last month with my obgyn.  I see him tomorrow, my onc next week.  I certainly will have a lot to talk about.  And if I pursue this option, I will DEFINITELY explore the robotic or laprascopic procedures. 

 Thanks again

3monstmama

I do not believe fibroids are capable of turnign into anything--they are just fibroids, big hunks of confused cells doing their thing.  But there are plenty of other reasons than worrying about fibroids turning into cancer that might lead one to need to get a hysterectomy.  When I had one about 6 years ago, I was told to keep the ovaries because while I will eventually go into menopause defering it has its bennies.  What is pointless to keep---though many women do--is your cervex.  Once everything else is "gone" it doesn't have support and can cause all kinds of problems.

for anyone thinking they might be needing a hysterectomy, check out the hyster sisters a really awesome website with tons of great information. 

Leah_S

Geminihalf, as 3monstmama said, fibroids don't become cancerous. They are estrogen-fed so will shrink after menopause (whether natural or medically induced). I'll tell you the truth, I don't understand a blanket recommendation for a hysterectomy for ER+ women. An oophorectomy (removal of ovaries) has in very many cases shown to have positive benefits. Estrogen is produced in the ovaries, not the uterus. If there are other problems in the uterus or caused by it then a hysterectomy is a good idea. What you have to keep in mind is that the uterus provides support for other organs in the pelvis, especially the bladder. This is why a lot of women will have problems of incontinence following hysterectomy.

Usually a hysterectomy is recommended for fibroids only if the fibroids themselves are causing problems (excessive bleeding, severe pressure on other organs, etc). I agree with 3monstmama that it's a good idea to check out the hystersisters website.

Best of luck.

Leah

Twiceasnice

Again thank you for the valuable information. Will definitely check out hyster sisters.

 A little more detail to share after seeing my obgyn yesterday.  The hysteroscopy showed my uterus is FULL of fibroids. Like all over the place.  The biopsy came back negative. As I anticipated. 

He sort of backed off the hysterectomy recommendation a bit, I think since my reaction was one of shock last week. He said he'd be willing to resect them (a procedure I had once YEARS ago). As a first step, then just monitor the situation.  That sounds good to me! Though, I think given my staging, my ER levels (100% in my tumor) and HER2 +, his inclination is just to take everything out just to be safe. Including the ovaries, which he said still produces small amounts of estrogen.

 But he's left it to my oncologist and me to decide--and I see him next week for a regular check up. 

If I have the resection only, I HAVE to stay on zolodex, since my periods would be unbearable. Or, get off the zolodex and have the hyesterctomy and ooferectomy. I did some research, and at the 2010 San Antonio conference, Zolodex proved to be very effective for 2 years, and extremely beneficial in ER+ women. I've been on it for 2 years in December, so we'll see what the recommendation is. 

THANK YOU THANK YOU THANK YOU

AnacortesGirl

I'm really glad Leah chimed in with her comments.  I totally agree.  I went to a gyn surgeon that specialized in genetic cancers. She gave me the option of a hyst but said it was only if I wanted it -- in other words, it really didn't matter in terms of my cancer but she would do it if it made me feel better.  The real key is to have the ovaries and fallopian tubes out.  She told me that the T-cells for the fallopian tubes are basically the same T-cells as our breasts.

Monitoring the fibroids sounds like a good option.

jennyboog

Great info...I only removed my ovaries and fallopian tubes.  My dr said he would do it all if I wanted but keeping the uterus would help support the bladder.  I chose to do it because I was BRCA+ & ER+, it is a personal decision for each of us.  Good luck.

Twiceasnice

Hello ladies--

Just had an appointment with my oncologist, actually, substitute oncologist since my dr. is out of town. 

So, they do suggest the ooferectomy, since my ER+ status is 100% and I'm Her2 +. If I have one, I can go off Tamox, start taking an AI, and get off Zolodex.  They are leaving the uterus up to me and my obgyn.  I think I'm going to just have the fibroids resected and leave the uterus for now.

 Question: Is the ooferectomy done laprascopically? Is there some newfangled fancy way to get the ovaries removed that's less invasive?

My doc said that with ER+ and Her2+, cancer can technically come back at any time. I think if you are ER - and HER2+, the 4-yr window of it likely recurring holds generally true.

 She was surprised my onc had never brought an ooferectomy up to me before; I think he knows me well. I would have freaked, then resisted. I like to keep my options open. 

 One more thing:  I had a full body scan 12 months ago after treatment ended.  There was 1 little thing that showed up in my left nodule, the notes said I should get it rescanned in 1 year using a low dose CT OR wait until a regular body scan is scheduled. I don't have any scans scheduled--my doc doesn't believe in them unless SE's present.  I raised it with my nurse today and she resisted following up on it pretty hard.   I know we all have little spots on our bodies--would you push to have it scanned at the 1 year mark? Or just ignore it

 Thank you all for your wonderful insights

AnacortesGirl

Oophorectomies are done laproscopically.  The DaVinci robot is a "new fangled" method for doing hysterectomies or when removing both ovaries and uterus, but my gyn surgeon said they take more time to set up for ooph then the actual surgery itself.  So she doesn't use them for just an ooph.

Laproscopic oophs are very uninvasive.  Just 3 little entry points for me and 1 of those was actually through my belly button so you can't even see it.  Recovery for the majority of women is very fast.  It's day surgery.  I took a week off work but the surgery was done right after my last chemo.

As for the scan question.  You say that something showed in your left nodule but that doesn't say where it is.  Lung? Liver? Lymph node? 

I think this question is for the onc and not the nurse.  It would depend on what was found and where it was found.  Ask him what his plan is for following up on the finding from last year.  You're grade 3 and HER2+ so everything should be considered carefully.  

Twiceasnice

Thanks for the good info on the ooph!

Good question re: the nodule.  I'm looking at the report from the Chest and Abdomen CT w/contrast I had in Dec 2010, after I finished Herceptin.

"No convincing evidence of metastatic disease. Stable left upper lobe nodule.  Recommend follow-up with low dose chest  CT scan in 1 year or re-evaluate on routine re-staging imaging."
Translation?

Lymph node or lung perhaps, since it suggests a chest CT?

Yes, I was rather annoyed with my nurse. I brought it up to the substitute doctor, since we are coming up on a year, and the nurse said I would have to talk to my (original) doctor, at my next appointment in January.  I mean, I'm pretty rational and calm, I'm never one to scream for scans, but since this report from a year ago has it in writing, I just thought I'd mention it. 

 BTW, anyone on here know anything about "grading" for Her2 +? I was just looking back at my path reports and notice it says HEr+, 3+ (what is that out of?) :-) 

Thanks ladies

AnacortesGirl

That does sound like a lung nodule.  Lung nodules are quite common -- they can be the result of colds, allergies or a whole laundry list of things that adversely affect the lung cells.  That the radiologist called it "stable" would indicate to me that he has seen the nodule on another scan.  Did you have a scan when you were initially dx'ed?   And the radiologist has to cover his rear when he writes those reports.  So if they find something then they usually make a recommendation of some sort.  More often then not it's to re-scan at some future date.

I had a nodule in my initial scan and a year later (after treatment) it still showed up on the CT/PET.  Since it had not changed in any way I am not concerned and neither is my onc. For peace of mind it might be worth trying to call your onc after he's back and tell him your concerns.  Or wait till January.  Whichever feels right for you.

Can't answer the HER2 question.

Twiceasnice

Thanks, Anacortes Girl!  That makes me feel better. I know (logically) that a spot doesn't necessarily mean anything.  I just don't want the ball dropped (I had a bad experience with my dx--won't got into it here.)

I didn't have a scan when I was originally diagnosed. Long story short, once they knew what they were dealing with after my lumpectomy (i.e. node involvement) it was wham, bam, straight to chemo, forget the formalities.  So, my first baseline CT scan was in December 2010, after Chemo, Radiation and Herceptin. 

I'm not concerned, I just want to monitor what I can, if that makes sense. Thanks for all your good info--

Twiceasnice

Hello ladies--

I thought I'd write a brief update on my decision making process, now that I've seen my oncologist.

He thought I should get an estradiol test to see how much estrogen is in my system, before I make a decision.  

Can anyone clarify for me how I should interpret the results? If the amount is "high" then that would indicate I should at least get the ooferectomy? Thanks again ladies, for being such a good resource. 

Ellie1959

I ended up with a radical hysterectomy from tamoxifen! It gave me a 15cm cyst on my ovary. I had the open kind - not laparoscopic because the cyst was all tangled up in the mesh from my tram-flap. I hadn't even started to go into menopause yet but chemo stopped my periods. It really isn't too bad - as someone said, we have to go through menopause anyway - good luck!

Twiceasnice

Thanks for the great information. I got the results of my Estradiol test today. The levels are <15 pg/ml. That would make me post menopausal. I have yet to speak with my doctor's office to interpret the tests, and how this knowledge would help me make my decision in terms of ovary removal, hysterectomy, or both.

 I'd welcome any insights here...Thanks!

Twiceasnice

Happy New Year ladies!

I just thought I'd write a quick update re: the decision over when and whether to have the ooferectomy/hysterectomy.

I had the fibroid extraction done in late December. I saw an oncologist in early Dec. that suggested I wait until I've been on tamox for 2 years to decide. At that point, we can see how effective its been. I guess another option is to take an AI (which I guess is just slightly more effective for some ER+ cancers?? but worse side effects?) and have the hysto/oof.  

So I'm going to put it out of my mind, as much as I can, until September and hope Tamox is doing its thing.  I'll be just coming off a clinical trial for Neratinib at that time too, so hopefully the picture will be clear(er).  :-)