Home » Uncategorized » More Cowden Syndrome Drama…

More Cowden Syndrome Drama…

There is never a dull moment living with Cowden Syndrome.  I recently chose to have Prophylactic Bilateral Mastectomies to stay a step ahead of Breast Cancer.  Everything related to the PBM went well with the exception of a minor glitch and necessary revision.  Unfortunately, it seems that things never remain smooth for long.  I have been experiencing a light menses for about 6 weeks.  I was unsuccessful in my initial attempts to get an appointment with my gynecologist.  I did make an appointment with my family doctor and she did some blood work and told me to call back in a week if I was still having the problem.  A little over a week later, I called her back and she scheduled an ultrasound to check things out.  I kept the US appointment, but had to leave to pick up my children after waiting over an hour without being seen.  I made a frustrated phone call to my doctor’s office to no avail.  I decided that a last ditch effort was in order, I called my Gynecologist back and finally got someone who listened.  I explained my issue and was put on hold. She must have spoken to my Dr. who knows what is involved with Cowden Syndrome as they set my appointment for today.  I went in at 1PM and waited over an hour for a 15 minute appointment.  They did a quick US.  The tech got a concerned look on her face and asked the Dr. to come in.  He said, “It looks like you have polyps.”  This is new for me, but OK.  In addition to the polyps, I have some cysts, though that is more common for me.  So, Thursday I will have a hysterscopy DNC to get the polyps and bad tissue out.  It will probably be nothing, just going through the Cowden Syndrome motions.  I do feel that this might be a gentle reminder that it might be time to lose the uterus.  I’ve been blessed with two beautiful kids, and don’t need it anymore, its just a bit sooner than I thought.  Blessings come in many forms.  Mine is the genetic knowledge that helps me stay ahead of cancer.  It’s a fight, I feel certain I’ll win:)

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9 thoughts on “More Cowden Syndrome Drama…

  1. WOW!

    Do you mind me asking if your children have been tested/will be for Cowden’s Syndrome?

    My docs (one of them) is ready and raring to go for the PBM, but I’m working on the hysterectomy first. I haven’t had problems as you have – but some other ones that I won’t detail here on your comment feed. 🙂 HAH.

    Is a polyp the same as a fibroid?

  2. Sorry this is sooooo late – I’m getting caught up on my blog reading. But, GRRRRRR! Why do doctors and technicians and hospitals all think we all have time to wait! I am angry at your medical circle that you had to wait so long! That’s just not right!

    I had fibroids. As soon as my fibroids reared their ugly heads, I had my uterus out! That was 2007. No kids here. We kept the ovaries. They went in 2010, though. Cowden’s wasn’t diagnosed until 2012. So…if you do decide to lose the uterus, see if you can keep the ovaries — at least for a little while.

    And, yes, you WILL win!

    • You know….this is such an interesting discussion for me right now – I had to chime in. I have fibroids, and I’m planning on the hysterectomy as soon as I lose 20 pounds, if not more. The weight loss is slow going – the number on the scale isn’t moving as fast as I’d like – but I do notice a difference in my stamina!

      Anyway – one of my doctors thinks I should KEEP my ovaries. I feel they should GO NOW, as they aren’t helping the situation either. My oncologist is kinda like, “Well, whatever you choose I support”:view – but I just DO NOT WANT TO HAVE any more surgeries than I need to….granted the craniectomy was just too much for me. I’d rather do the surgery and remove them both at the same time.

      But….I don’t know!

  3. I just found out I have Cowden’s… having the genetic testing done tomorrow actually…

    I’m pretty scared. My mom died from it undiagnosed… It’s only in hindsight that it makes sense… always 20/20 right?

    I’m 27 years young. My mom died at 52… is my life half over?

    • Thank you so much for your comment. I try to consider my genetic knowledge a blessing. There are many things we can do to monitor for and prevent or (reduce the risk of cancer). I am not sure which side of my family the disease comes from but both of my parents are living. Don’t be afraid, just consider the knowledge power:). Feel free to keep in touch:)

    • Hi Katie – You are not alone out there. So sorry about your Mom. I definitely agree that with knowledge is power. Be strong!

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