Hysterectomy after triple negative?

Lainey64

Hello all.  It's been ages and ages since I've been here.  Just been trying to live life to its fullest and continue to dance with NED.  I say prayers for all of us every single day!

I'm back with a question for all you trip negs and I thank anyone and everyone for any insight you can offer!

 Since my DX 4 years ago, I've been seeing my OBGYN annually and she has been ultra-sounding my ovaries twice a year.  I've had tiny cysts on them that she has been monitoring.  Just had another done yesterday and the ovaries look good and cysts are gone.  I also had bloodwork done and I'm in full blown menopause.  My hormone levels are zilch.  It's been a struggle because my onc doesn't want me taking any hormones so I've been going the "natural" route with supplements.  Probably a "no no" but there has to be some quality of life after BC!  Anyway, my doctor suggested that I "think" about having my ovaries removed.  She said since they aren't doing anything anyway, I might as well remove the risk of ovarian cancer and just have them taken out.  Oh and by the way, my BRAC test came back negative however there was a variant of "insignificance" that they couldn't prove or disprove had anything to do with cancer.

So far I've been able to find lots of stuff online about women with estrogen+ positive BC having hysterectomies but not alot about us triple negs.  Just looking for some input, experience or advice on this.  I have made a surgery consult with a doctor to see what he has to say.  He specializes in robotic hysterectomy and I am interested to find out more info on it.

 Thanks, Gals!

Elaine

CarlaInNC

Hi Elaine - I just responded to your other post on my thread re skipping last two infusions. I wanted to also mention that there didn't seem to be any correlation or significance betwixt my TN status and having a hyst. 

I was also post-menopausal when I had the hyst. They took the ovaries, fallopian tubes, uterus, and cervix. I haven't had one single issue since the surgery in that regard.

Someone did ask me the other day what hormone therapy they put me on after the hyst, and the question surprised me since no one has mentioned any hormone issues related to the hyst. Will ask my doc about that next time.

kellycbk

hello-- I am alos TN and tested + for Brac 1. I had my HYST. 10 months after I finished chemo. I had just turned 40 and my ONC didn't want me to wait. I also wanted it done!!!  I had the Robotic surgery and it was fantastic. I was in the hospital less than 24 hours and was only a bit sore for a couple of days. Definitely the way to go.  If you have any more questions please feel free to PM me.

 Good luck!! Kelly

Lainey64

Kelly & Carla - thank you both for your posts!  That's exactly what I wanted/needed to hear!

 Elaine XO

Leah_S

Elaine, perhaps you should speak to a genetic counselor about your risk of ovarian cancer. If your risk is high then that's a good reason to have the surgery. If it's no higher than that of the general population then I don't see why you would do it.

Best of luck.

Leah

ypecora7

Hi to all,

I'm also a triple negative. I'm 38, and had my BRAC 1 be negative. I have had surgery,chemo, and radiation. I have gone through many side affects from chemo one being I'm now menopausal. I've had my monthly but they've been 2 to 3 months straight bleeding with severe severe migraines.It just doesn't stop. They are considering that a hysterectomy may be the best option. I do have a 7 year old daughter's I'm ok with that. I don't want any more children especially with the risks. My doctor said that a hysterectomy but that she would leave the ovaries. Due to my age. I just wanted to get some insight. I have found things on the subject but not on triple negative patients. Is there any advise you can provide me with I would truly be grateful. I'm ok and fine with having the hysterectomy but their are so many different ones. Ex: with ovaries without ovaries, etc. Also I don't know if this has happened to anyone but I am not only now anemic, but I have what is called Anemia of Chronic Disease. Has anyone had this or heard of this. I know that this could be the underlying issue to new cancer cells growing somewhere. Any help will truly be appreciated. Thanks and have a wonderful day!