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 http://www.project-aware.org/Experience/symptoms.shtml

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.