Round 1 - First Oncologist

todd121

I had my first post-op with the surgeon today. I think he's a great surgeon, but he makes me nervous. He just seems so anxious to get out of the room he's practically shaking. I suppose he's like one of those high strung race horses...sorry. That's a bit off subject. However, I always end up asking half of my questions because of that instead of all my questions...He did insist it was time for me to go back to work (normal activity he said) when I hinted a week or two of part-time might be a good idea.

My pathology was pT3a and grade 3. His plan is to wait 6 months and do a CT scan of my abdomen again with contrast if my kidney function is good enough. I wondered why not the lungs too (I think I wondered out loud), but don't remember his answer. I asked about why not scan my brain while he was at it. That he did answer, saying they play the odds and it's unlikely it would spread to the brain without going somewhere else, and that I'd likely have other symptoms there anyways. Ok.

Not by his suggestion, but just by my prodding, I got referred to a young oncologist fresh out of oncology training who is specializing in genitourinary cancers. I liked him. He was relaxed, answered all my questions, and just seemed more personable and knowledgable about all the new drugs. He had used a tool on Sloan Kettering's website to calculate my risk of recurrence in 5 years and it came out to 87% likely not to recur in 5 years. I liked this number better than the one my uncle had led me to believe. By the way, my uncle doesn't trust the number.

The oncologist is ok with me looking into the clinical trials, but also thinks it makes perfect sense not to with this low of recurrence probability. Of the two studies nearby based on his experience with the drugs (votrien and affinitor), he suggests the votrien trial. He promised to check into it for me (it's not offered at this location).

I had had an abnormality on my femur which the surgeon thought was nothing and we could watch it, but the oncologist decided to do a pet scan to check it out just to make sure.

On Monday I go Round 2 with a more experienced oncologist for a second opinion. Unfortunately, that oncologist has the affinitor study available at his location but not the votrien one, so if I decided to look into it, I'll end up going for a third opinion at another cancer center.

Oh, the surgeon is sending me to see a nephrologist also to learn about how to take care of my lonely, single, left kidney.

Todd

icemantoo

Different opinons

Todd,

 

No two doctors have the exact same opinions and testing procedure as the other. Each brings their own experiences and training. The more you here and read the better your questions will be. There is no one right answer to all your questions. If you are informed you will be in a posirion to accept and proceed with the best advice. Those on this board can relate our experiences and thoughts, but take each with a grain of salt compared to a doctor well verseed in RCC and your charts to review.

 

A nephrologist is a good idea to manage your blood pressure and Kidney Function the failure of which more often causes heart concerns before dialisis or recurrance. Face the fact that with only one kidney our kidney function numbers are lower than the general population and that we want to keep them in check the best we can.

 

Meanwhile live life to its fullest.

 

Icemantoo

todd121

icemantoo said:

Different opinons

Todd,

 

No two doctors have the exact same opinions and testing procedure as the other. Each brings their own experiences and training. The more you here and read the better your questions will be. There is no one right answer to all your questions. If you are informed you will be in a posirion to accept and proceed with the best advice. Those on this board can relate our experiences and thoughts, but take each with a grain of salt compared to a doctor well verseed in RCC and your charts to review.

 

A nephrologist is a good idea to manage your blood pressure and Kidney Function the failure of which more often causes heart concerns before dialisis or recurrance. Face the fact that with only one kidney our kidney function numbers are lower than the general population and that we want to keep them in check the best we can.

 

Meanwhile live life to its fullest.

 

Icemantoo

Thanks

Appreciate the reply iceman. Being new here, sometimes I'm not clear what's appropriate to post. Currently I'm just going with if I have something I want to share with everyone, then I log in here and write.

I was looking around my area for a cancer support group that meets face-to-face. I've been involved in some 12-step groups in the past, and really found them helpful. I had hoped/imagined there would be groups like this one here on the discussion board, but that would meet in person. I've been surprised how little I've found. Most of the hospitals have placeholders for this, or claim they have groups, but when I dig in I find they rarely meet if ever, or really aren't well attended. And finding a kidney cancer specific group, hasn't happened at all. I'm in a very well populated area. I'd think if we don't have them, they don't exist.

Has anyone found face-to-face support groups for kidney cancer survivors?

I'm really happy I've found this place. I wish I had more time to read the back posts and some of the other links others have posted on here. On the other hand, I find focusing on this too much does start to bring my anxiety up and my mood down, so I have to be careful with how much I'm here, and how much I'm out walking or playing with the dog.

Todd