A Study of Breast and Ovarian Cancer in High Risk Families

I received a big envelope in the mail yesterday from London Health Sciences Centre (LHSC), London Regional Cancer Program. It contained a consent form and a research questionnaire as part of a research study to improve understanding of the prevention and treatment of hereditary breast and ovarian cancers. LHSC has been invited to participate in a multi-site research study called Risk Factor Analysis of Hereditary Breast and Ovarian Cancer Study. The Principal Investigator is Dr. Steven Narod of Women's College Research Institute, Toronto. This is a 10 year study and I will need to complete follow-up a questionnaire every two years after completing my baseline questionnaire.

When Karen Panabaker, my Genetic Counsellor, originally asked me to participate, I said I'd be more than happy to.

This is going to be interesting and if taking 30 minutes out of my day to complete a questionnaire can help someone else out in the future, I'm all for it!

Thought for the day.

The BRCA Crystal Ball ~ Blessing or Curse?

I was the first in our family to learn of the genetic mutation. Going by our family history, I inherited the mutation from my mother who inherited it from her father who inherited it from his mother. That was my great grandmother Lavina.



Knowing you are BRCA+ is often viewed as either a blessing or a curse. Yet, many days it certainly feels like both to me. I guess that is how life is...grey and not black and white, right? Nothing is ever perfect. Life is hard and full of tough decisions.

When all is said and done, the knowledge is a huge blessing in my eyes. Not knowing wouldn't keep me safe. Knowing gives me choices...choices my mother never had.

Now on the lighter side of things...

What to do with all those leftover tampons and pads?!?!?!?!

How about some tampon Christmas crafts?




or a tampon blow gun?



for more fun ideas, go to Tampon Crafts



and to find out how to make these stylin' maxi pad slippers, go to http://www.uglydress.com/maxpadslip.html

On the other side...well, partly anyway!

I thought I had better post an update. I had my hysterectomy and BSO on Friday, November 7th, 2008, at St. Joseph's Health Centre in London, Ontario. My surgeon was Dr. George Vilos. I can't say enough about this man...he's a fabulous doctor and man. The entire staff at St. Joseph's from the nurses, to doctors, to the office staff and porters were FABULOUS!!!! I couldn't recommend a better facility. I received the best care anyone could ask for.

I was originally scheduled for a Laparoscopic Assisted Vaginal Hysterectomy (LAVH) and a Bilateral salpingo-oophorectomy (BSO). My surgery started out as planned, but part-way through, Dr. Vilos had to change to abdominal. I had very bad endometreosis (I never knew...explains why I never had kids) and my uterus had attached itself to my bladder. This made surgery much more difficult. Dr. Vilos ended up doing a subtotal hysterectomy (with preservation of the cervical stump) instead of a total. During surgery blood started to appear in my urine so Dr. Vilos called in a urologist to do a cystogram (bladdar scan) to ensure there was no tearing of the bladder from removing the uterus. There was no tearing, but definitely some bruising. I had blood in my urine until Sunday when I was released from the hospital. It was really bad on Saturday and Dr. Vilos thinks that was from irritation from the cathetar and because I was on heparin (blood thinner). He told the nurse to remove the cathetar and things started to clear up right way.

I did have a bit of a melt down on Saturday. I was in some major pain and was terrified by the amount of blood in my urine. I imagine some of my emotional state was caused by suddenly having no hormones either! At one point I told my sister I wished I hadn't done the surgery, but she said mom would have wanted me to do it; I knew she was right. During a crying spell and while my sister was consoling me, Dr. Vilos walked into the room. I tried to hide my tears, but he was incredibly caring and sympathetic and kept telling me not to worry, I was going to be fine.

After the cathetar was removed on Sunday, I had to prove I could pee on my own 3 times before they would consider releasing me. Dr. Vilos showed up at my room around 5:00. He asked if I was peeing on my own...I said lots...and he said "go home!" I asked when he wanted to see me again and he said in 6 weeks and not before :)

So now I start on my road to recovery. I still am in a fair amount of pain and imagine I will be for a while. DH has been fabulous waiting on me hand and foot. Since I'm not too sure about tackling our big old staircase, I've been sleeping on my own on a fold-out couch in our TV room in front of the TV and fireplace. It's quite nice and cozy. My cat and 2 dogs have become little nurses. I know they can sense when you're not well, and these 3 haven't left my side. My cat sleeps with me at night and won't leave me until I wake in the morning...it's so sweet.

That's about it for now, I'll update again when I have more news and feel up to it. Thank you to everyone for all your emails, messages and good wishes. and an extra special thank you to DH, Wayne. I couldn't have done this without you!!! xoxo

We all hope you're back on your feet soon!

Lots of love and hugs !

xoxo

Surgery tomorrow...

I'm off to London today. My Laparoscopic Assisted Vaginal Hysterectomy and Bilateral Salpingo-Oophorectomy is scheduled for 8:00 tomorrow morning. I'm to be at the hospital at 6:00 am so that's why we're heading there today. There's a guest house adjacent to the hospital so will be staying there tonight and dh will be staying there while I'm in hospital. We're going to do a little shopping today and then go out for a nice dinner tonight.

I'm pretty nervous at this point but am so ready to get this over with. I've been told the stress relief will be unsurpassed and the emotional weight removal is enormous.

I'll update as soon as I can. Thank you to everyone for your good wishes and prayers. I couldn't do this alone.

Too cute not to post

UTTER FRUSTRATION!!!!!

Since I still haven't received my referral for the plastic surgeons or a date for my follow-up MRI, I called the nurse practioner who works with the breast surgeon and the plastic surgeons, Margo, to ask again if she's heard anything. Short answer...NO.


She had wanted my MRI done before my hysterectomy this Friday, however she said "they must have thought differently". She said they won't want to do the MRI now until at least a month after my surgery. AAAAAHHHHHHHH That will push my mastectomy / reconstruction surgery date even further. I asked about surgery timeline and she said honestly it will probably be months because of resources (mainly operating room time). I was so upset when I got off the phone, I was almost in tears. I just want this over with!!!


One good thing, Margo said she's going to visit me Friday afternoon when I'm back in my room after my hysterectomy. I really like Margo and it will be wonderful to see her.