Updates: Cowden’s / Voice / Next Treatment

I haven’t posted in awhile…life has been busy.  Between thyroidectomy recovery, physical therapy for my neck, Jer’s work schedule, my work, follow-up appointments and blood work, and the kids…there is little time for much else. 🙂

Here are some updates on my health:


I met with the vocal specialist (Dr. Schindler) a couple weeks ago.  My voice after the thyroidectomy was just a whisper.  He explained to me that during my thyroidectomy, Dr. Milas called him in to look at where the thyroid cancer tumor had attached to my left vocal nerve.  Dr. Milas had to scrape my nerve to get the cancer off (no other choice) but Dr. Schindler said given this, he and Dr. Milas agreed I had a 0% chance of my voice returning to normal on its own.

So with those odds, I told Dr. Schindler to go ahead with the “temporary fix” in the office that day.  I got several shots of collagen into my neck into the paralyzed vocal nerve.  This was not a comfortable procedure (during and for about 24 hours of horrible sore throat).  Then I couldn’t talk at all for 5 days or so.  Now my voice is mostly back but always sounds like I am getting over a cold or that my voice is tired from yelling.  The collagen will wear off in about 3 months.

In February, Dr. Schindler will perform a surgery (I have to be awake for this surgery) to insert an implant (stent) to push my paralyzed vocal nerve over toward the center (so my right side can touch it and produce sound).  During the surgery, I have to talk so Dr. S can find the exact spot for the implant that should restore my voice to normal permanently.  Again…amazing what modern medicine does now.

I jokingly said, I was awake for two c-sections, I can do this.  But just having the shots into my neck was hard coordinating my swallowing with the Dr., etc.  Of course if it will bring my voice back, I can put up with a couple hours of discomfort (just like the Dentist chair…right?). 🙂

COWDEN’S SYNDROME (PTEN hamartoma tumor syndrome):

– Although I do not have a mutation in my PTEN gene (20% of Cowden Syndrome individuals do not have a verified mutation), my Oncologist has classified me as having Cowden’s Syndrome (based on clinical presentations alone).

– Cowden’s Syndrome is very rare.  It is typically associated with an increase risk of breast, thyroid, and uterine cancer.  Other cancers include melanoma, colon, and kidney.  I do not have the “hamartomas on my skin” which is typical for Cowden’s but I do have hamartomas on my liver (benign tumors).  I also had a “suspicious for melanoma” skin spot removed off the bottom of my foot last year.

– So given this syndrome, I will have my uterus removed (Surgery probably in January).  The other reason for the hysterectomy is that I am taking tamoxifen (medication to block estrogen for my breast cancer).  This medication has a side effect (less than 2% I think, but still listed) of uterine cancer.  So my Oncologist feels taking the uterus out is the best option for two reasons…I agree.


– To help “kill off” any left behind thyroid cancer cells, I will do RAI on October 15th.  This should be painless (swallow a pill) but then I have to stay away from the kids for one week.  I might be staying at the hospital (in isolation) for the first two days then Jer and kids will leave the house for 5 days.


Originally I had hoped to have all surgeries and major treatments done by the end of 2014.  My new goal…finish these things one year from the date I was first diagnosed (March 11th).

After the RAI next month, I should have a break for November and December (Which will be good for enjoying the holidays and a trip each month).  Then hopefully just two more surgeries in early 2015.


Thank you again for all your continued thoughts and prayers.  The meals, food gift-cards, snacks, offers to help with the kids, and cards/emails are very much appreciated.  (Again…I feel badly for not doing formal thank you cards.) Please know I appreciate all the sentiments!

I hope you all are enjoying the changing season.  I love FALL in the Northwest.  I can’t wait for Pumpkin Patches with the kids, Halloween costumes, Fall leaves, and anything scented “cinnamon spice”.