from newcomers page...moved it here
 

POSTED BY:
jwatton
Junior Member

Join Date: Sep 2008
Location: South East Wisconsin
Posts: 1


Hello Fellow HER2 Survivors:

I was diagnosed with High Grade Invasive Ductal Carcinoma (Nottingham score of 9/9, and a Van Nuys Classification of 3/3 - as agressive as it gets) back in February (on Valentine's Day no less).

Since then I've had a lumpectomy for a 1.8cm mass with (unfortunately) positive margines on March 20th the pathology also indicated extensive DCIS. I had 7 nodes removed and all but the sentinal node were completely clear. The sentinal node had single free floating cancer cells, which apparently has not yet been proven to have an effect on prognosis. So, its technically considered a clear node.

I went back for a total mastectomy - ok lets get specific... I had a total right side mastectomy with immediate reconstruction using a diep tram flap (tummy tuck) procedure. I spent two days in the ICU and then a two more on the floor before I begged them to let me go home.

My pathology report indicates 98% ER+ and 98% PR+, not to mention the HER -2 status is amplified according to my FISH testing (3+). I was also found to have Paget's Disease (nipple) so going against my surgeon's advice of a re-excision saved me a third surgery.

I began my Chemo therapy in June as soon as I was recovered enough from my surgery. My treatment is weekly Herceptin for the first 17 weeks, with Taxotere and Carboplatin every three weeks. I just had my final 3 drug Chemo yesterday. We had to put off my final round for a week due to low blood counts and anemia. Even with blood transfusions (4 in September) I was not well enough to stay on schedule.

I am now down to just going for Herceptin every three weeks, and it will be a blessing. For the most part I have been able to work through my treatment, but cycles 4, 5 and 6 were definitely more difficult to manage.

Well, to cut this a bit shorter (thanks for listening so far). Yesterday my medical oncologists recommends that I have my ovaries removed! I was not expecting this, but I guess since I'm only 40 and not close to menopause, keeping them with my ER PR positive status increases my odds of a recurrence.

Does anyone have any advice, literature, websites to offer on what happens when you remove your ovaries this young? I am fairly certain there are downsides to this, I just need to get some answers.

My love and support go out to all of you. This has definitely been a defining challenge in my life, and thankfully, I feel like a stronger human than ever before.

Jen - The Wattonator - and a thankful SURVIVOR.

jen - no advice, since i'm not ER+, but i would definitely recommend come joining us younguns over at Young Survival Coalition http://www.youngsurvival.org/community/bulletin-board/

a lot of the women on that bboard have had their ovaries out very young (even early 30s) and they will have tons of advice for you.

katie