Tuesday, March 30, 2010

Girlie parts update

As a cancer survivor, my new life centers around three things: 1) God, 2) Living life to the fullest, and 3) Making lifestyle changes and decisions that will hopefully give me the best possible chance of staying cancer-free. Now that the major treatments are done and I'm in remission, the third item on the above list involves getting into a routine of healthy habits as well as seeking out medically available and appropriate choices based on current studies and my medical history. Last week I consulted with two OB/GYN physicians to determine the appropriateness of hysterectomy surgery and what it would entail. The reasons I've been considering this surgery are as follows. In my twenties I experienced years of abnormal pap smear tests that resulted in numerous procedures to remove precancerous cells. Now that I'm a cancer survivor I do not wish to retain a cervix with a proclivity toward developing cancer. And since ovarian cancer is most often found when advanced I do not wish to allow that to happen given that triple negative breast cancer is often correlated with gene mutations relating to breast and ovarian cancer. Even though I was negative on the preliminary BRCAI/II test, I chose not to have the extended testing which could have revealed a genetic mutation (I know of at least one woman personally that was negative on the initial test but positive on the extended test). I also don't need the hormones pumping through my body. Even though I had triple negative cancer (non hormone receptive) I'm not convinced that hormones didn't play a role in the cancer I had, particularly since I was injected with hormones for 15 weeks during my pregnancy a year prior to my diagnosis. Besides, I'm not going to carry anymore babies in this body - sad but true - so I don't need my ovaries, uturus or cervix anymore. They're being evicted. When I asked the two OB/Gyn docs and also my two medical oncologists why I would/should keep the girlie parts the only answer I got was relating to putting off menopause because of the unpleasant symptoms that it brings (flashbacks, for instance). I just laughed because I've had those since July when I started chemo and I know that's temporary - should last just another year or so at most and frankly I just don't care about that because it's not as bothersome as it was in the beginning. I asked them if having the surgery puts me at greater risk for disease and when the answer was 'no' I could only respond with "let's get er done!" Both Dr.N and Dr.H (the OB/Gyn docs I consulted) liked my logic and agreed it makes sense. Now on to the timing issue. As soon as possible is my answer and here is why - first, I want/need it done before my menstrual cycle has a chance to return, and secondly, I want/need it done at a time that creates the least amount of disruption to my life and those that count on me (family, work, etc.) since it entails a couple weeks of recovery time. I also want to incur the least amount of out of pocket expenses so that means before the end of the current benefit plan year (which ends June 30) since I've already met my out of pocket maximum for the year. I have no doubt that I'll be paying out the maximum next year as well for all the follow up tests and appointments and things I'll have over the next few years but I'd rather not have to put out $2k for a single day of care if it can be avoided. I also have another breast surgery that needs to get done this spring - I need nipples! So I had a brilliant idea - let's trade in the uterus, ovaries and cervix (and probably my port-a-cath too) for a set of nipples on the same day ;). Not only would it reduce the number of times I have to go under general anaesthesia, but it would lower the costs too. Basically I'm looking to combine three surgeries into one - what insurance company wouldn't love that!? Sure, that involves coordinating a couple of surgeons but we all know I don't take 'no' for an answer. So that's the current mission. I've been on the phone back and forth between Dr.H and Dr.C's offices to help keep the ball moving to get a surgery date coordinated with them both. I don't have a set date yet but it will be in May (no later) because Dr.H (the UCLA OB/Gyn I've selected to do it) is out of town the entire month of April. I love Dr.N (the OB/Gyn that delivered Cooper) but he doesn't have privileges at UCLA so I wouldn't be able to combine surgeries if he did my hysterectomy surgery, so that's why I've chosen Dr.H. During my visit with Dr.H he did an ultrasound of my ovaries. They are "as quiet as can be" and he said there are no egg follicles whatsoever. The lining of my uterus was so thin that he said he'd be surprised if there was a trace of estrogen anywhere in my body which means my body doesn't appear to be attempting to get my cycle/fertility back and that's a good thing (for me, anyway). He said that my uterus and other girlie parts in that region are surprisingly small for someone that has had a baby and when I told him that Cooper was born at 35 weeks he was not surprised - said he couldn't have grown much beyond that in such small quarters. Dr.H also said very complimentary things about Dr.N - said he has an excellent reputation. I told him I only let doctors treat me if they have an excellent reputation. He smiled. There are several ways a hysterectomy can be performed. I'll be getting completely laparoscopic surgery with the da Vinci robot. This will make recovery much shorter and will reduce the risk of adjacent structures from being negative affected given the size of my parts. Neat stuff. So that's the latest on the girlie parts. Once I have a date set I'll update everyone that needs to know first (family and work) and then I'll update here.

6 comments:

  1. Hi Julie - there is a web conference on treatment updates for triple negative bc - more info here, I plan to attend as well. Sounds like you're doing good, glad to hear it!
    http://www.lbbc.org/content/event/triple-negative-breast-cancer-genetic-risk-and-treatment-updates.asp?c=calendar&t=participate&sn=calendar
    (if that link doesn't work, just go to www.lbbc.org and you will find it - it's a great site, Living Beyond Breast Cancer).

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  2. Julie, you are a go-getter, girlfriend! : ) Your plan makes good sense and if anyone can arrange three part surgery in one day, it's you. I'll be praying that everything works out according to God's will and that you come through shining. My mother had a full hysterectomy when she was 48 (pre-cancerous cells, polyps, and cysts) and recovery was a long, long haul for her, even though she was in very good shape. What a blessing this surgery is now able to be performed in less evasive way! What amazing medical professionals are out there, too--glad you secured yourself them, too. Hugs to you!
    Warmly,
    AB

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  3. JUlie - I am impressed by your organization and calm decision making in the face of adversity. Keep us posted. You're in our thoughts and prayers as always!

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  4. Good luck getting the 3 surgeries coordinated! I'm sure if anyone can pull that off, it will be you!!

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  5. I have faith that if it is at all possible to get the 3 docs in one- You can do it!!!! Get rid of them girlie parts!!!!!!!! and get some new nipples :) you are so amazing!!!
    love ya

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  6. Good luck! If anyone can do it, you can! My mom had a hysterectomy a few years ago, and she had it done vaginally. She was told it would take several weeks to feel better, but she felt great after two days. With more procedures I'm sure your recovery won't be the same, but hopefully you'll feel better right away!

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