Hysterectomy

[LeeannW710]

Hi ladies! Hope you are all doing well!!

So I had another appointment with an Oncologic gynecologist today and he scheduled me for a hysterectomy Tues. Just my luck he had an opening so soon! Ugh. I knew I had to have the fallopian and ovaries removed because of my brca 2, so I decided to go all in to save myself another surgery in the future. Especially since my biopsy confirmed mets to my cervix and endometrial lining, which I have now heard from two onc gynecologists that is rare. For whatever that is worth smdh. Has anyone else experienced the same? Breast cx diagnosis, recurrence to bone, resolved with tamo and now recurrence to cervical & endometrium? My head is spinning as I realized what I just agreed to do.

Blessings to all,

LeeAnn

[klhowe]

No, I do not have the same experience. But you are doing the right thing removing the ovaries and cancerous organs.

Take a deep breath, relax. Keep educating yourself and know that the drugs are good these days. You need to keep your strength up so that your body can fight this!

[LeeannW710 in reply to klhowe]

Thank you for your reply. The most nerve racking thing is that I was told twice by two Oncologic Gynecologists that the fact that my breast cx spread to my cervix and endometrial lining is rare. One of the two wanted to gain a little more research before subjecting me to a hysterectomy. She definitely agrees I should remove ovaries and tubes but wasn’t too eager to resect cervix etc because that is not usually done when there are mets. I think she was waiting to see what new meds were going to do. Btw, my cervical specimens were send to a pathologist at Sloan (NYC) and are waiting for the final report. Been three weeks. The dr I saw today left the choice for hysterectomy up to me. My husband said do it this way we don’t have to come back in two months and have it done. I kinda feel the same but it has me up in the middle of the night second guessing.

[Merma]

Hi there,

I had endometrial cancer, so I had a full hysterectomy. I was in menopause already. I can honestly say, I don’t miss my uterus, et al. I felt mostly recovered after two weeks. Maybe because the did the de Vinci on me.

Hope this helps. Best wishes to you for a speedy recovery.

[LeeannW710 in reply to Merma]

Hi Merma,

Thank you for your reply. If you don’t mind me asking, was it primary or from breast? I have been in medically induced menopause since July. Not concerned about that just about making the right decision. Two week recovery sounds great! I was told it would be done laparoscopically. Unsure what the de vinci is exactly. I am glad to hear you are doing well!

[Merma in reply to LeeannW710]

De Vinci is laparoscopic. My cancer was primarily in my uterus. I’m in this forum because I take Ibrance and an aromatase inhibitor. And I’m on this regimen because I had 2 recurrences which were completely resolved.

[klhowe]

Does the proceedure involve macerating the organs in order to remove them? Or are they able to remove the whole organ? Keeping the tumors intact is a better option.

Rare. I was diagnosed De Novo. The cancer is in pretty much every bone in my body, which will not kill me. I have 7 small spots in my liver, also, which will not kill me. It's a strange way to look at it, but it's a battle.

When you get the the results back on your type of cancer you'll be able to focus more.

My cancer is Estrogen/progesterone positive Her2 negative. Ibrance in combination with other drugs are getting MBC women to NED, or at least allowing women to live 5, 10, 15 years and counting.

[LeeannW710 in reply to klhowe]

So my original bc was Invasive lob carcinoma e/r + her 2 - Recurrence to sine and rt fifth rib (same receptors) last July, after almost 4 years post bilat mast, act and rads, followed by a lt axilla nodule, cervical and endometrial diagnosis within 1 week of each other. The axilla and endometrial is E+ P- her 2- and the cervix contained 3/4 E+ P- her 2- and the 4th area E-P- Her2- this was the main reason to have all specimens sent to one pathologist bc it was not adding up to the first gyno I saw.

[LeeannW710 in reply to LeeannW710]

I am also on ibrance/Letrozole, lupron (until surgery) and zometa. I thank God for the advancements in medicines.

[LeeannW710 in reply to LeeannW710]

Forgot to ask that question about keeping organs in tact! Thank you!!

[Barbteeth in reply to klhowe]

Oh I do hope you’re right about a possible long life..I fret all the time..it’s the not knowing

Barb xx

[Godbeforme in reply to Barbteeth]

I do too and then I have to remind myself that none of us ever knew how long our life would be ... NO ONE DOES ... hugs!

[Francesca10 in reply to Barbteeth]

That does a number on me also🙏🏻💕

[Hidden]

Hi LeeAnn,

What an incredibly worrying time for you. It's a big decision to have a hysterectomy, but it is ultimately your choice. Have you spoken to your consultant about what will happen if you do have a full hysterectomy? Will that contain the spread once the organs are removed? How long will recovery be? I wish you all the best in the days and weeks ahead.

Take care,

Sophie x

[LeeannW710 in reply to Hidden]

Hi Sophie!

I decided to go that route bc of the mets to cervix and endometrial lining. Figure why keep it if it is infected? The surgery is done laparoscopically with three tiny incision on my abdomen. Should take about two hrs under gen anesthesia (ugh) and the recovery is anywhere between 2-6 weeks. Obviously everyone recovers and heals differently. Heard it is simpler than a c-section in terms of recovery. I have spoken to someone who stated she was up walking around the next couple of days feeling better by week two. Of course there are limits and restrictions like picking up my daughter and exercise and intimacy lol. As far as spread, unsure what my future holds since i have already dealt with a mets to bone(resolved), lt axilla (removed). I just figured save myself from the chance it affects my ovaries and tubes and having to go back for another surgery if uterus continues with her issues. How are you feeling?

[Hidden in reply to LeeannW710]

Hi LeeAnn,

I'm glad you have made a decision about having a hysterectomy. At least you know what to expect and the surgery can be done with minimal incisions.

As I was going through the diagnostic stage last year for the breast cancer I was also under gynaecology. During scans and ultrasounds, my ovaries were looking suspicious and so was my womb. I had an endometrial biopsy (Have you had one? It was agony for me) and then when the gynaecologist did not gather enough cells for analysis I had to have a hysteroscopy to go in and check my ovaries and womb. It turned out to be benign fibroids and cysts, but I was prepared to have a full hysterectomy if it came back cancerous. I decided not to have children at the age of 18, so that didn't bother me.

I'm sure you will be fine with a general anaesthetic. When I woke up from the hysteroscopy my husband couldn't believe how energetic I was. It was the same when I had my wisdom teeth extracted. I seem to get on well with general anaesthetics! I got home, did the ironing and other jobs and slept like a log that night. Not a single twinge or pain, so hopefully it will be the same for you. It's a shame we can't have it on prescription! There would be a long queue!

I am feeling really well. Thank you for asking.

Sophie x

[LeeannW710 in reply to Hidden]

Hi Sophie. We pretty much share similar recovery stories. Thankfully, I have had uneventful recoveries. Yes, they biopsied the cervix and endometrial lining. Not the most fun lol. Interesting to say the least. Be well! Talk soon.

[lynzer]

Hi there, I just agreed to have my ovaries taken out. It seems like a simple procedure, however if your planning on having children, that’s really the only problem.

I’m getting mine out because I dont want to be on luperon anymore and possibly switch from getting falsodex injections to letrozole. Do your research, the only thing I’ve heard is that it may throw you into menopause really quickly and it can be brutal. Effexor can help wit that.

Let me know how it goes! Good luck!

Lynn

[LeeannW710 in reply to lynzer]

Hi Lynn!

I am fortunate to have my daughter. She is my true gift from God. I would have liked to have another especially since we do have an embryo remaining but I know I couldn’t carry again because of the estrogen levels. I agree about getting off lupron. Will be nice to not have a shot monthly. I have experienced menopause twice now; once during chemo and now with lupron. I assume the effects after the hysterectomy will be the same. I will definitely post from the recovery room lol. Stay tuned... be well!!