Aug 14, 2012 - 8:16 am
I am finding it hard to get this post started. To know what to say. To introduce myself and write something that describes how personal and unique the past two months of my life have felt. Yet the more I read through this board, the more I see that this is a journey walked by so so many before me. So many familiar sounding stories. The only other time in my life that I have felt so unique was when I brought my daughter into this world. It felt/feels like I alone were the only human to have faced that challenge!
It may amuse (or annoy) some that for the past two months I have consistently stalked this board. And whilst I have not been an active participant in discussions, I want to say that so many of your words have helped me through some not so nice days. Almost every question that I have come u ever come up with, almost every thought, has been raised somewhere on here. And so among doctors who have told me to just get on with life, to family members who have suggested that I am just 'over analysing', it has been comforting to sit quietly here. To have a feeling of familiarity, and just read real stories.
I read this board in the days following diagnosis of a large tumor in my right kidney - a big shock as a super fit 32 y/o seeking antibiotics for what i thought might be a kidney infection. I still remember those words "there's no easy way to say this..."
I also seeked solace here in the days leading up to my open radical nephrectomy. I got more answers and tips here than any of the doctors or specialists could give. On the eve of my surgery and throughout recovery... I have been here.
And now, well now I find myself here again reading posts about clinical trials. My cancer was clear cell, Furhman stage 2 to 3. My urologist refused to give me an overall grade, however research tells me T3a (sinus fat extension and vascular invasion of renal pelvis). When I asked the urologist about adjuvant therapy, he stated I don't need any. When I asked for an oncologist, I was told I don't need one. "Just accept that you have had cancer, that you have lost a kidney, and get on with your life" was my surgeon's response. I felt cheated. Yep, you've cancer. Yep, you're a rare case, but seeya later anyways.
So a few days ago I got a call from oncology citing a referral from my urologist. Yes, on advice from an intestate urological oncology team, my surgeon has hchanged his mind. SO just when we were getting used to the idea of a future consisting of surveillence only, I find myself in unknown terrain yet again. A quick internet search found the oncologist to be closely associated with clinical trials in my area. We will know more in a few days... but preliminary conversations with my partner tell me this is going to be a tough challenge to face, perhaps even our toughest so far. My cancer was not found to be metastatic and to date no treatments (that I can find anyway) have been shown to prevent recurrance in those who are at high risk. For several reasons I immediately sway toward clinical trials, my partner against...
In sum, I think I really just want to say hello. To share some of my story and say thank you to all of you who have been so brave in sharing your fears and triumphs. Finally, I feel strong enough to join you all here.