Tuesday, August 27, 2013

iPeriod, I will miss you.

For years I've tracked my periods through an app on my iPhone.  Thank you to whomever created this app.  It predicts even the most unpredictable cycles and gives you a sense of security knowing you won't have one of "those" embarrassing accidents we have all come to know and HATE.  I've never had regular periods or so I thought.  I just don't know how to track a 35 day cycle one month and a 26 day cycle the next month to predict my period.  Over the years I have come to love my trusty iPeriod.  Today I got my 7 day reminder.  (yep, now you all know my cycle)  I usually dismiss the reminder and think nothing of it for a few days.  This time was different.  I realized that this could be my last period EVER.  I don't know why I am mourning my period.  I have always hated it but over the years it has been a part of me.  So it got me thinking, will I cherish my last period for all the gross, crampy glory that it is? Or will I hate this last one just as much as I hated all the others?



If you didn't realize I said "this COULD be my last period."

I saw my oncologist, Dr. R, today.  What an amazing appointment!  I left feeling a sense of security I didn't feel before.

My sister went with me to the appointment.  I wasn't ready to face the Women's Cancer Center alone.  Luckily, I can always count on her support.  Blood doesn't make you family but love does!

Dr. R spent lots of time with us explaining my risks and benefits.  We discussed my scheduled surgery and the chances of a second surgery.  Even though it is a small chance, it isn't a chance I am willing to take.  The pathology that would be ran with a routine surgery just won't cut it in my situation.  My right ovary is enlarged and has follicles.  He said the entire ovary should be dissected and 100-150 slides ran in pathology.  What that means is...they will take out my ovary, cut it into slivers and look at the slivers of ovary through a microscope to check for cancer cells, pre-cancerous cells or abnormalities.  With routine surgery through a gynecologist they run about 15 slides AFTER surgery for BRCA positive patients.  What that means for me...if one of the 15 slides comes back with anything I will be back in surgery with Dr. R anyway.  And that means decision time for me.  Do I want to take a chance of a second surgery or them potentially missing something because the section of ovary they chose for pathology is a good part and not a bad part?

Pathology will be ran in the hospital while I am in surgery.  Yep, while I am asleep under "Robbie the Robot" they are going to run pathology.  Then if anything does come back bad Dr. R can remove more of the surrounding tissue until I'm clear or as clear as we can get, worst case scenario.  One surgery with Dr. R and "Robbie" and I will be done.

A co-worker nicknamed the Surgical Robotics machine Robbie the Robot and no matter what I do I can't get it out of my head.  I keep thinking my 11 year old would want to become a surgeon when he sees this machine.  Its the ultimate 3D video game experience.  For those of you that don't know about surgical robotics, get ready to be impressed.


Recovery time COULD be lessened but the ability to get more with a higher level of precision is a huge plus.  Dr. R performed three radical hysterectomies using the Da Vinci yesterday and all three of the patients are going home today.  I hate hospitals so that is great news for me.

All-in-all I am happy with the decision to let my oncologist do the surgery because he does this more often than Dr. P.  Love Dr. P to death but when your life is on the line you want experience.  To your surprise, I'm sure (insert sarcastic eye roll), there is a large amount of human error in surgery.  Most of those errors can be fixed with no ill effects but one small piece of tissue left in my body could mean my death.  My mom's doctor left one ovary during her hysterectomy and that is the one that killed her.  I'm not willing to risk it.  Ovaries aren't the only thing that can be affected by ovarian cancer.  The blood vessels connected to the ovary and surrounding tissue are all susceptible.  Why take the chance?  Dr. R is taking it all out.

We talked more about hormone replacement therapy (HRT) and the benefits vs risk.  Studies are so inconclusive that doctors shy away from it for BRCA positive patients. Many doctors say no hormone replacement therapy because if a woman ends up with breast cancer 15 years later, the recommendation for HRT can't bite them in the white coated ass.  I've done my research on this and was highly impressed when Dr. R was reciting statistics from studies I have read.  The problem is all the studies done are on postmenopausal women or a small case study that isn't a big enough sample to make much difference.  20 years from now there will be a huge medical "told you so" from one side and the other side will be hanging their heads in shame.  At this point, we don't really know what the long term risk is.  

I think I have decided to start on a low dose, estrogen only patch for a few months and slowly wean off of the hormones completely.  There are benefits and risks with either and becomes a personal decision for the patient.  Quality of life is a big part of that decision.  I am removing most of my chance of ovarian cancer but if I'm miserable and don't feel like myself, is the surgery successful?  The good thing about HRT is it isn't set in stone.  I can try it one way, switch and then switch back if one isn't working for me.

Today's appointment was great.  I got lots of answers to questions I have and made some big decisions that I feel are right for me.  I cancelled my surgery with Dr. P and I'm waiting for the call to schedule my surgery with Dr. R.  I feel like I'm making lots of progress so far.  I'm not as scared as I thought I would be while planning a surgery and talking about cancer so often.  I have a great family supporting me and helping me through this.  I'm not sure I could be so strong without them.

2 comments:

  1. I had already went through meno so I did NOT miss it and I still dont. It has been the greatest thing ever!

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  2. I'm sure I won't miss it when its gone but today its a little bittersweet knowing it could be the last. lol

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