BMX, Oophorectomy,Hysterectomy AT SAME TIME?

Mommy2Six · November 2014

Hi, all. I'm 29 years old and diagnosed a couple weeks ago. Due to an extensive family history for 6 generations, my oncologists are doing a wide panel of genetic screening on me. Pending those results, their recommendation is bilateral mastectomy, oophorectomy, and hysterectomy. She told me yesterday that they recommend doing all this on the same day! Has anyone had any experience with this?

inks · November 2014

I'm BRCA1 positive but my GYN onc would not do the oophorectomy at the same time as the exchange to implants. He said that risk for infection is too high. And the latest recommendation for prophylactic oopherectomy for BRCA1 is at age 35. BRCA2 is still at 40 years. You should look into if hysterectomy is really necessary, in my case it is not since BRCA does not raise the risk of uterine cancer and having an extra surgery just strains the body and raises the risk of complications. I hope your genetic testing turns up negative. I wonder why are they taking such an aggressive approach with your female parts when you are only 29. Are you done having kids?

Mommy2Six · November 2014

Thank you for responding!

Yes, I have six children. They tested me for more than just BRCA, also. They said they did a complete genetic panel. Family history has 9 breast cancers (age 30s-40s), 3 uterine cancers (30s), 2 ovarian cancers (30s), and a host of other cancers (liver, pancreatic, bladder, prostate, colorectal, blood cancers, gastric, melanoma, esophageal, etc). She also is concerned about whether I might have Ashkenazi Jewish ancestry since I have a very dark complected grandparent from an unknown area of Eastern Europe (he changed his last name when he got here, converted to Catholicism, and never told anyone about his heritage, probably due to discrimination here in the South.) She said my family tree is "very ominous" and my insurance would pay the $$$ for a complete panel. My dad has eight siblings, only two have not had cancer, and five have passed away. My mom is also from a large family and all the women on my mom's side of the family required hysterectomies in their 30s-40s. Due to abnormal bleeding (2 heavy periods a month with spotting in between) and some other worrisome symptoms I'm having, they have referred me to a gynecological oncologist as well. I see her next week.

Also, I've decided not to have reconstruction, so not sure if that makes a difference.

inks · November 2014

Now I get it, they are recommending a hysterectomy based on issues not related to your breast cancer. So sorry you are having health issues at such a young age. I was 36 and I only had the BRCA1 and BRCA2 done so I am unfortunately not familiar with the other genetic testing that you are referring to. But it turned out I had one of the most common ashkenazi jewish mutations and now my family is puzzled about our heritage since I am originally from Estonia.

When you go to the GYN oncologist ask her about ovarian suppression with Zoladex versus oophorectomy since you are so young. Ovarian suppression is reversible. I have a friend who was 27 when DX with stage II and BRCA2. She is now on her third year of ovarian suppression and looking forward to having another baby.

And I think you are right that they may be able to do all the surgeries in one day since you are not having reconstruction. And I bet that the hysterectomy recovery will be the hardest one. I had very little trouble with my BMX and tissue expander placement, the hardest part was not being able to pick up my 18 month old daughter. I think your recovery will be easy since you are so young.

I still have my fingers crossed that the genetic testing turns out to be negative!

Akitagirl · November 2014

HI there,

I am 42 and have won the lottery with the PTEN genetic mutation, which gives me Cowden's Syndrome. This puts me at huge risk for thyroid, breast, colon, kidney, endometrial and brain cancer. Out of these, I have now had melanoma, benign brain tumors and now breast cancer. Just had a double mastectomy, will need chemo and I know my MO is going to recommend a full hysterectomy - including oopherectomy. Now, I am 42 and completely done having children (only 1 bio and 1 'made in China' ;-) so I will most likely move forward with the hysterectomy. I am a Certified Nurse Midwife and have seen all the yucky side effects of ovarian suppression, so I am just going to rip the band-aid off and have it all done. HOWEVER, I would never consent to having it all done at once and I am very surprised they are recommending this. Your body is going to take a lot of stress and need lots of healing focus on the breasts. You are at much higher risk for infection...not to mention depression and other co-morbidities by having all of this done at once.

I am not your provider, but I do understand your situation and recommend a second opinion. Remember - you are the one in the driver's seat. Make sure you know the lay of the land and follow the map you choose to follow.

All my best,

Akitagirl

BayouBabe · November 2014

I had my BMX, TE, and ooph all on the same day. Took some arranging to get all three surgeons on the same schedule (PS, BS, and OB/GYN Surgeon). They also took some extra precautions in the OR to make sure there was no cross contamination. To me it was worth it - I did not have to face multiple surgeries, multiple recoveries, and multiple times under anesthesia. Less stress, as it was all done at once. I also had a nerve block and pain balls to help. The worst was getting around the first days at home; I needed help getting in and out of bed for the first few days. If I had to do it over again, I would definitely go this route again.

glennie19 · November 2014

Mommy2six: I understand your need for all this surgery, and I'm sure that the surgeons think it is better to only undergo anesthesia and its risks just the one time. But that is a LOT of surgery for one session. You will have drains from the MX's and incisions on your abdomen from the HX. .Are they planning a robotic or lap. HX? It's a smaller incision and shorter healing time. I had a Uni MX last year and a complete HX on Sept 29th. Either operation alone was tolerable for recovery,, but I am not sure that I'd want both done at the same time. And you need Bilateral MX,, and I only had Uni.

Can you get another opinion from other surgeons? is there really this BIG rush to do it all now? Insurance issues to get it done by the end of the year? Otherwise, I'd recommend that you get the MX's done and 3-6 months later (or more) have the HX. And I would find out what type of HX they are planning. A full abdominal incision is much longer healing time than the lap or robotic would be. And make sure that they do not do the morcelation of the uterus. That's where they grind up the uterus before removing.

kamm · November 2014

Mommy2six- I thought about having my ooph at the same time as my mastectomy as well but am darn happy I didn't. What you don't know is that post-op you use your stomach muscles to get yourself in and out of bed being that your ability to push or pull is restricted. Even with help you need to use those muscles.I was shocked at how strenuous it was and thanked God that I did all of those abdominal workouts all of those years! If your having a hysterectomy and ooph then it's an open surgery. You'll have an incision versus the laproscopic surgery I had 4 months later with just my ooph. I can safely say that I wouldn't do it.

glennie19 · November 2014

I had a complete HX and ovaries removed too. It was completely robotic lap surgery with everything removed from my vagina. Only 3 little incisions. Mommy2six needs to find out the plan for what type of HX they will do. But even then, things can happen during the surgery. My GYN warned me that if she would something that needed closer exam, or if everything could not be removed as planned, she would have to open me up. So you should take that into consideration when thinking about having all the surgeries at one time.

Mommy2Six · November 2014

wow, you ladies have given me lots to think about. Thank you for all the feedback and sharing personal experiences. I didn't ask to have everything done at the same time, but i confess that part of me was relieved to only have to go under once. I may get another opinion (oncologist, surgical oncologist, and gynecological oncologist are all recommending doing it simultaneously, but maybe i will have a consultation with a different group of physicians). I didn't ask anything about open surgery vs laparoscopic or any of those questions yet...I wanted to wait until i know for sure that i have a mutation. I'm still hoping i don't, despite the family tree. thanks again ladies.

glennie19 · November 2014

I would just ask WHY you need it done all at once. If the HX could be postponed for a few months. Just so you don't have so much stress on your body at once, and the recovery period of several body areas! And removal of the ovaries will throw you into instant menopause (I'm so there now!) and the hot flashes (if you get them, not everyone does) will also make you uncomfortable while you are recuperating.

Mommy2six: if you have questions, feel free to PM me and I can tell you all about my HX!! Or hot flashes,, or whatever!!

SunnyC · November 2014

Mine were scheduled 4 months apart - HX and oophorectomy at end of December still. The BMX and reconstruction were more than enough for me on one day. No way would I have consented to more. As it turns out, I've had issues with the reconstruction so good thing.

Mommy2Six · November 2014

thanks for sharing your experience! Do you feel that it would have been doable if you had not had the reconstruction? (I have chosen not to have reconstruction)

SunnyC · November 2014

Maybe but I depended on my lower body, especially abs, to move myself around. I imagine it will be the opposite for the next surgery. Lots of arms.

RHGSR · December 2014

Hi ladies. I'm 38 and have 3 children. Have finished active treatment ( bilateral MX with DIEP, 4AC And 4 DD Taxol, 36 rads. Complication from rads- radiation pneumonitis). Just got my port removed today. I'm BRCA neg.

I'm getting Lupron to shut off my ovaries and taking Aromasin (AI inhibitor). I'm considering a total hysterectomy in February. I figure if I'm getting injections to shut my ovaries off, why not just remove them. As for the rest of my insides (uterus and cervix) I figure the less I have for cancer to come back in, the better off I am.

But I'm concerned about side effects and recovery though. I'd love any advice or opinions on this.

Thank you.

Holli :0)

BMX, Oophorectomy,Hysterectomy AT SAME TIME?

Comments

Categories