OT: My oncologist visit update

Discussion in 'Fibromyalgia Main Forum' started by Bren2135, Sep 25, 2006.

  1. Bren2135

    Bren2135 New Member

    My oncologist recommends a total hysterectomy, because I've got ovarian cysts and a 'solid area' on the ultrasound.. and, an elevated CA-125 (cancer marker). My mother also had ovarian cancer, so my risk is higher.

    (I know ovarian cysts/cancer is not the main topic here, but I feel more informed by asking those of you with FM for advice, because another medical condition can so drastically exacerbate the other..)

    And I'm wondering what surgery will be like, as an FM patient. I'll have to go off my meds for a week before, right? What is recovery like? What is life like, with no natural hormones? I'm trying to be positive here, and at the same time, need to be real about what I'm facing.

    I would appreciate hearing your experiences..

  2. kirschbaum26

    kirschbaum26 New Member

    Dear Brenda:

    Someone on this site told me to visit a website call hystersisters. It has lots of info.

    I am also facing a total abdominal hysterectomy (including lymph nodes). I have had pre-cancer for over a year in my uterus and had a d*c last month that showed it was still there. I am also worried about how having this operation will affect my RA, which is in a year long terrible flare, as well as other conditions. I seem to have some hormonal issues, and I am afraid that going into menopause will really be tough on me.

    I know that many of the women on this board have had hysterectomies, and I am sure that they will share their experiences with you (and me). I have a co-worker who had total hysterectomy nearly a year ago...she is still trying to get her hormone levels to a manageable level...and still has trouble dealing with highly emotional situations. I guess we are all different and all react differently to this operation.

    Good luck.

  3. mymichelina

    mymichelina New Member

    I am so sorry for your upcoming surgery. I had major surgery without stopping my medications, as a matter of fact the hospital supplied me at the times necessary to take them. Recovery is usually longer with fibro patients...for me the procedure I had normally requires 1-max 2 nights in hospital. I had to stay in hospital 5 nights. I needed ALOT of pain medications..that is for sure!! I am sorry I can't comment regarding the hormones...I had hysterectomy but I still have my ovaries. I hope this helps.
  4. mariee

    mariee Member

    Hi Brenda,
    Let your doc know about your medications for FM. My surgeon told the nurses to include my meds in my IV the whole time I was in the hospital. I also had my husband pack some just in case the hospital got my meds screwed up. the nurses assured him that I was getting all my meds.

    Recovery fr. major surgery is not easy, but very do-able.
    Just keep those lines of communication open w. your surgeon.

    Hystersisters website was invaluable to me.
    Lots of sisters there w. fibro, too.

    Best wishes for a successful surgery and speedy recovery.
  5. 1sweetie

    1sweetie New Member

    Normally the only medication or supplements that you can not take are those that would thin the blood. If I remember correctly I was asked to limit those types of items for 2 weeks prior to surgery.

    I've had breast cancer twice and in between surgeries for that I had to have my uterus removed due to serious precancerous cells. Four years later I had a solid tumor on an oavary and my CA125 was slightly elevated. The ovary and the tumor was removed but that time NO cancer. I left one ovary but it is no longer working.

    The surgeries are what triggered by CFS and orthostatic hypotension. Feel free to read my bio.

    I wish you the best. Hopefully, yours will not be cancereous too.
  6. 69mach1

    69mach1 New Member

    and a wonderful prognosis...i hope to hear how well it went through for you all needing histerectomy's

    hugs and love
  7. PVLady

    PVLady New Member

    Whatever the side effects on the fibro, it sounds like you need to get this over with. You may find out you do really well. Did they advise you cannot take the natural hormones?

    I am not sure what meds you are on, so would not know if you have to stop them at all before surgery. I know when I had a smaller medical procedure but had a general anesthetic, the doctor did not make me stop my pain meds until the procedure.

    Did your doctor tell you to stop your meds for a week before surgery? or are you asking... (it is not clear)

    I would definitely make a list of questions and call your doctor.

    I understand your concern. I have to have my gallbladder out soon and will be asking the doctor who treats me for CFS how this surgery will affect the CFS. I have a "old infection" of the Epstein Barr virus. I don't want it to become active again.

    Will your surgery be by laparoscopy? That would certainly be easier if possible..

    I recently started bio identical hormones and am noticing real improvements, especially in my mental attitude. I wish I had them ten years ago!! Hopefully I will never have to stop them.

    I wish you the best and will keep positive thoughts for you.
  8. Bren2135

    Bren2135 New Member

    ...for your encouragement and suggestions - It helps me so much. I have some time to make an informed decision, and feel lucky, in that regard.

    I asked my surgeon if FM could elevate the CA-125, and he said "it's possible." I'm also concerned about my mother's ambiguous answers concerning her medical history, and I hope to find a way to clarify that more.

    So, lots to sort through. I'm so glad I found this message board.. Ingrid, thank you for the hystersisters ref.

    I feel like I have some sisters here, too...!


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