Sunday, June 2, 2013

Step 2A

As I eluded to on earlier posts, my mastectomy was just step 1 in reducing my risks for developing cancer because of the BRCA gene mutation I carry.  I am now onto step 2.  On June 14th I will be having a bilateral salpingectomy.  This will be the removal of both fallopian tubes.

All recommendations for women with BRCA mutations suggest the removal of ovaries and fallopian tubes before age 40. The is called salpingo-oopherectomy.  The removal of one's ovaries is not an easy undertaking (I'm not saying the mastectomy was either).  The loss of ovaries means loss of all hormones   This would be a good thing in some regards because most breast cancers are fueled by estrogen and if you don't have the organ in your body producing estrogen that would reduce your risks for developing cancer even further.  It would reduce my breast cancer risk from 5% to less than 1% and my ovarian cancer from 50% to 0%.

However, this puts you into immediate surgical menopause.  Most women slowly go through menopause letting your body adjust to the lack of hormones and those side effects in a somewhat gradual process. After having your ovaries removed your are thrown right into it often with intense side effects which include:
  1. Hot flashes, flushes, night sweats and/or cold flashes, clammy feeling 
  2. Irregular heart beat
  3. Irritability
  4. Mood swings, sudden tears
  5. Trouble sleeping through the night (with or without night sweats)
  6. Irregular periods; shorter, lighter periods; heavier periods, flooding; phantom periods, shorter cycles, longer cycles
  7. Loss of libido 
  8. Dry vagina 
  9. Crashing fatigue
  10. Anxiety, feeling ill at ease
  11. Feelings of dread, apprehension, doom 
  12. Difficulty concentrating, disorientation, mental confusion
  13. Disturbing memory lapses
  14. Incontinence, especially upon sneezing, laughing; urge incontinence 
  15. Itchy, crawly skin 
  16. Aching, sore joints, muscles and tendons 
  17. Increased tension in muscles
  18. Breast tenderness
  19. Headache change: increase or decrease
  20. Gastrointestinal distress, indigestion, flatulence, gas pain, nausea
  21. Sudden bouts of bloat
  22. Depression 
  23. Exacerbation of existing conditions
  24. Increase in allergies
  25. Weight gain 
  26. Hair loss or thinning, head, pubic, or whole body; increase in facial hair
  27. Dizziness, light-headedness, episodes of loss of balance
  28. Changes in body odor
  29. Electric shock sensation under the skin and in the head
  30. Tingling in the extremities 
  31. Gum problems, increased bleeding
  32. Burning tongue, burning roof of mouth, bad taste in mouth, change in breath odor
  33. Osteoporosis (after several years)
  34. Changes in fingernails: softer, crack or break easier
  35. Tinnitus: ringing in ears, bells, 'whooshing,' buzzing etc.  (source

These are things that I am just not willing to put myself through yet at age 30.  Instead I've been watching some new research that is showing ovarian cancer is really starting in fallopian tubes and moving to the ovaries before it is diagnosed.  So this means removing fallopian tubes could prevent ovarian cancer.  This is not something widely accepted yet, but one doctor in the area agrees with the new research and has begun recommending this for women in my situation...not ready for oopherectomy yet, but worried about doing nothing.  

On June 14th, I will have my fallopian tubes removed (Step 2a) leaving my ovaries behind.  I will then join a registry of women through the University of Washington being monitored for the long term outcomes of a prophylactic salpingectomy.  The plan is to then remove my ovaries when I feel ready (Step 2b) later down the road. 

1 comment:

  1. Big Choices Renee, I know that they aren't easy! I am positive that you are doing the right thing for you and your family. I wish you the best for the next surgery, and please know I am here if you or your family needs a thing. Keep the strength you have shown so far and continue to share, as your strength helps others too. You are one inspirational woman! Your girls are lucky to have you as their foremost role model!
    Hugs -Molly