New here. Can't move on and should I see oncologist?

NanoSecond said:

Dr. Block

Busted.

You are quite right Tex.  I was only addressing Todd's comments about the book.  Of course I should have pointed out the terrific website. And I should have said that I agreed with Block's not putting in all the footnotes - for fear of distracting the reader.  But, as I said, the research is all there.

Like you I have been so busy sometimes I forget to step back and look at the bigger picture.

I absolutely believe the debate about Keys and Yudkin, et. al can be made to look too black and white. So I really look forward to that discussion with you (and others).

Guess what? I am about to head across the Potomac River to listen to a free lecture being given by our favorite skeptic, Dr. David Gorski.  I am looking to meeting him.

It's also turning out to be a gorgeous day for golf around here.  Tomorrow's forecast is even better.

 

Lucky you - I can't wait for your thoughts on the talk and your impression of the man.

I't just above freezing here, overcast and windy and my Wife has declined going our for a walk - probably a sensible decision.  I'm due to play a match tomorrow. early but we could get snow before then 

I live in Calvert County so we aren't to far apart..I would be glad to talk with you anytime if you need too..As most of my buddies here know this is my 2nd go around with RCC. The first time was in 2002 and I since I am an old mucket (62) I can't remember anything about the specific size of my tumor in the left kidney..I just know it basically filled it up but thank goodness it was incapsulated and I had my left kidney removed and was good to go. With this first instance I found it because I peed a bucket of blood in the toilet (one day and never again until it was removed) Yes, it is also scary to hear they got it all because we were so terrified until after the surgery...kind of like this huge all consuming thing that takes over your life and thoughts every minute until it is removed and then it is like...joyfully happy but oh...you had cancer but no big deal all is good now...and then you crash...and think what the hell just happened...it takes adjusting but it will get better...Yes, you need to see an oncologist for sure...I was checked every three months, then 6 months then yearly but it was with an oncologist that specialized in Hematology and works in syn with Urology Onc. etc...It took me a long time to come to grips with it and realize that even though I didn't have to go through Chemo, Radiation etc. I was still a bonified Cancer Survivor...I will tell you that everyday and everytime I pee I can't help but check the toilet for blood and I always will. I also asked my oncologist about things meds etc that I should avoid if possible..the only I take for pain is Tylenol...Get yourself a second opinion for your peace of mind with an oncologist and then work each day toward believing you had cancer, you were extremely lucky and use that knowledge to make you love life and live it even better than you did before...So, now we go to round two for me...I am a retired PG County Paramedic and have been have lots of back problems for the past 3 years, numb legs, leg and feet cramps, pain when walking etc. and have been trying to get someone to understand that just because I only appear to have one small lumbar herniation my symptoms are classic for something worse...so my Neurologist and I decided I needed to have a new spinal tap/myleogram done and only I could manage to schedule for the morning Hurricane Sandy hit..luckily they did mine before they cancelled the others...anyway., long story short...found all the nasty stuff in my spine perfectly this time...lit up like a Christmas tree but.....so did the 2 possible tumors in my right and now only kidney...and on the CT they looked like a duck, walked like a duck and the Drs were 99% sure they were RCC....Feb 8 had a partial nephrectomy with the Da Vinci method...got out of hospital Feb 9....taking a little longer to recover because of my age and other medical things but my pathology reads like your Stage 1 2.1cm and 2.8cm Clear Cell RCC all margins are clear...no evidence of any further cancer or mets...So I think my awesome Dr and staff at Washington Hospital Center and head home....I cannot believe that I have beaten this monster twice but as my friends here will tell I did have a wee bout with survivor guilt because so many of them are not as lucky as you and I have been but I also believe that this happened for a reason. I am a person who believes there are no coincidences in life....I was a totally obnoxious patient about my back surgery every time I was turned down..my neurologist and pain management Drs. were both PO's that no one would do the surgery they knew I needed...but you know what...I will God but it can be whatever anyone wants to call it....he has a plan for my life...and this is part of the plan and I can tell you right now as I have told all here...I am going to do my best to be the "Katie Couric" of Kidney Cancer...we need to get the info out there so more people can find it early and be lucky and get a 2nd and third chance at life like me....And now that I know how close you leave you and Nano might have to become my wingmen(woman)...We all need to live like we are dying...sadly some of us are but those of us with another chance need to live it for them!!!

 BTW, I now know why GOD kept all those Drs from doing my surgery...If I had it 3 years ago I would not have needed this new myleogram and would not have know I had RCC again until it might have been to late....the plan is the plan is the plan...that is my Mantra

Hanno said:

Is it just me, or are we

Is it just me, or are we seeing more and more of stories like Jill's every day? "Got it all, no further treatment, no oncologist required"... These are all comments that I can't help but be alarmed by. I was in that boat too, and if sat back and did what I was told I would be having a six monthly ultrasound and blood tests and an appt with my urologist for one year as follow up for T3a RCC! I'm actually still waiting for my 6 mth urology appt and it's going on 9 mths since surgery!  

Instead i researched. I disagreed. i was the annoying and assertive patient. i even had to stage myself when my urologist said he didnt know what stage my cancer was. Now i have a great medical team including an oncologist. i hace regular chest xrays and CT scans as welll as blood tests. I am taking sorafenib in an adjuvant setting.

What scares me most about this is the thought of how many people are out there who haven't got access to support groups like this. Or who are too scared to ask questions or stand up when they think their doctor is giving wrong advice. I read earlier that kidney cancer can be a chronic illness, rather than a death wish. I fear for some that they might not get that opportunity to treat RCC as a chronic illness. Without proper and vigilant care taken, this disease can easily go undetected until it is too late. Pull your socks up doctors. 

As most here know somehow I somehow have been blessed to both times come out clean after surgery...but from the very beginning my surgeon was my surgeon and my oncologist was my go to follow-up guy...My Dad lived 5 minutes from a fairly big hospital but I drove him 1/2 hour down to my Oncologist because I didn't want anyone else caring for him...This time around as soon as I knew about the the results of my Lumbar scan that showed two possible lesions I called him..he told me to keep him updated..and when I was admitted to the hospital for the Diverticulitis the beginning (My CT Scan was scheduled for later that week)..and they did a CT in the ER and confirmed the tumors..I called him the next morning and that afternoon he was right there in my room with him (This hospital has gone to using hospitalists like so many now and if you don't tell your Dr. they don't even know you were in the hospital) But I know from past experience that my Oncologist always checks on his patients and he is kind and caring but also honest to a T and that is important and makes sure you follow up..I always do but I know from others that reminders are sent...you have STAT bloodwork done an hour before your appt...CT scans and Chest Xrays...and he would rather you call and come see him if something freaks you out and you think it might be cancer (as I did a few times). We would have found my tumors..I was scheduled for a check up and a CT it would have just been another month and a half...Both my surgeons were wonderful..knowledgeable and skilled but to me that is their job..when they are done you must follow up with an Oncologist...again, just my opinion

One other thing I always do is whenever I go to my Primary Care Dr for anything I always ask them to do a quick Urine dip for blood...my Dr never has a problem with that...I don't know if others would or not but we just routinely do it..