Hysterectomy

[Madison1995]

Hi. I tried to find info regarding this and could not, when I found out about my lymphocytosis was during a female exam where we were discussing having a hysterectomy. I didn’t know if anyone with CLL has had a hysterectomy with CLL. I have 3 fibroids, heavy menses, endometriosis so for quality of life we were going to try and go that path.

[flutterbye]

Hi Madison, I had the same problem 3 years ago. Instead of a hysterectomy I was fitted with a mirena coil and it worked. No more bleeding!

Best wishes Jacqueline

[cllmom]

I have your same issues and will be having total robotic hysterectomy with bladder sling on February 18th. I consulted my CLL specialist and he said he was fine with me getting hysterectomy. He suggested I get labs before the procedure to ensure I haven't had any significant changes since my last CLL appointment. My gynecologist will be giving me mega dose of antibiotics the day before surgery, IV drip of antibiotics started before, during and after procedure. I will also be given oral antibiotic to take when I am released from hospital to guard against infection. Labs have been taken a week ago and I will have labs repeated 5 days prior to surgery. My fear is post operative infection. Robotic surgery is suppose to have minimal blood loss, less risk of infection, and quicker recovery. I hope this information helps, and wish you lots of luck.

[cllmom in reply to cllmom]

I tried Mirena and it did not help me. I've had issues for about 5 years and things have been getting progressively worse. I'm 53 and my baby days are over.

[Madison1995 in reply to cllmom]

Have they checked to see if your post menopausal

[cllmom in reply to Madison1995]

They did labs and ultrasound to check everything, so I should hear something soon. They've checked in the passed and I wasn't. Luck me.

[Madison1995 in reply to cllmom]

Thank you so much for your insight. I was afraid to proceed since the incedinta finding of this CLL. I’m seeing my CLL dr in May to make sure it’s ok. I’m just tired of feeling like poo in the female aspect then to have this. Just want sure if anyone else had to go thru this.

[sunsetssr]

Hi, this is a decision your OB/GYN has to advice you. GYN physician can consult with your oncologist if worried. I'm mostly concerned about your platelets and hemoglobin(HG) level. These 2 blood results are important in any surgery. The other worry is the duration of hospitalization. I'm sure you have a low immunity like all of CLL patients so the hospital environment is a risk to your helath.Get discharged as soon as you are stable and be careful of your visitors or other patients in your room if are sick. Good luck.Hysterectomy will saves you from bleeding and help your HG to raise,

[gardening-girl]

Hello Madison, one year into my treatment with ibrutinib for CLL, I needed a hysterectomy. I temporarily stopped ibrutinib for 7 days prior to surgery and resumed treatment 7 days post-surgery. My Hb dropped to a little below 7 due to post-surgery bleeding and a transfusion was considered, but I chose not to go that route and my Hb level did return to 10 within a couple of weeks and was back to 12 within a month. My need for the surgery was not related to my CLL diagnosis and I don't think that my recovery was in any way inhibited by by it either. sunsetssr's advice is critical, your OB/GYN and your oncologist should be in touch as you consider surgery.

gardening-girl

[Reneelj51 in reply to gardening-girl]

Hi gardening-girl. So fortuitous to see your reply. Because of Ibrutinib and the resulting crazy heavy bleeding, it looks like there’s a hysterectomy in my near future. I’ve become anemic due to that and have had two IV iron infusions. My gynecologist is “scared” due to the lack of information about Ibrutinib and hysterectomy. If you wouldn’t mind, would you share more of the process with me? Please feel free to private message me

[gardening-girl in reply to Reneelj51]

Renee, I looked back through my notes and found the following information:

"At my appointment today the physician confirmed a pelvic prolapse, in fact a double Stage 4 bladder (cystocele) AND Stage 4 rectal (rectocele) prolapse. Because they are stage 4 prolapses she recommends surgery to attach/reattach both organs." We also decided at the same time to proceed with prophylactic removal of my uterus and ovaries. I had recently had a D&C that revealed no signs of cancer.

I explained to her that I was taking ibrutinib for CLL and showed her an article on the effect of ibrutinib on platelet function. She asked for a letter to be faxed to her from my oncologist indicating that it was okay to proceed with plans for surgery in light of my ibrutinib prescription. The letter was forthcoming, and surgery was scheduled.

I had previously discussed the need for prolapse surgery and elective hysterectomy and oophorectomy with my oncologist, and as I said before he recommended stopping ibrutinib 7 days before surgery and resuming it 7 days post-surgery.

On the evening following surgery I had considerable bleeding and my Hb level was 6.6 gm/dL. My son, who is a physician, recommended no transfusion, and by the next day the bleeding had considerably slowed and my Hb was 7.0 gm/dL. Because of the low Hb I was kept in the hospital for an extra day and was released two days post-surgery. At one week post-surgery my Hb level was up to 9.0 gm/dL.

Up to 10 gm/dL the following week and then finally reached 12 gm/dL at my check-up a month post-surgery.

So, that's my story. A hysterectomy and ibrutinib treatment were not mutually exclusive! The two weeks that I was not taking ibrutinib did not seem to affect my CLL in any way that I could tell either through CBC results or lymph nodes.

Wishing the best for you! Keep us posted.

gardening-girl

[Madison1995]

Thank you. I think I may try the Mirena our just to help with bleeding that is also an option. As of now all my labs are perfect but the wbc at 18 and abs lymph’s at 12.8 from Jan. I thought about going the hysterectomy just to prevent secondary cancers that can arise from having CLL. I was just diagnosed this past Monday so I’m on wait and watch no treatment at this time

[Bubnojay]

Cautionary tale. I had a hysterectomy in which only the uterus was removed. Some time later a melon sized cancer tumour resulted in major surgery. I would advise anyone to insist that ovaries are removed along with the uterus, unless there is a good reason to leave it.

Bubnjay1