Why we get second opinions

I knew from the start to get a second opinion. I rarely trust the opinion of one person. I found that people that are passionate about their field are the best all the way around, for too many its a rote job. I find that being my own advocate and researcher is the best thing I can do. The big specialist centers are the best for available trials and such, the local ONC's just are not up to the task of handling advanced less common forms of cancer, they don't have the resources available.

Another point for me is gut feeling, if I just don't have confidence in a persons ability I definately move on. I should not have to ask a lot of questions from a professional. A true pro should have been around and heard most things people ask and explain before you even ask.

I was at my ONC the other day. I asked him about meds that effect my remaining kindney, "...oh very good question" He says "...We can forget that you only have one."

Seriously WTF....not a warm happy feeling with that reply.

This is why I am waiting until I get to Hopkins or Anderson before I get too far in. I called every number I can find to try to get in early, side slipping the normal routes but its still a month from now unless they have a cancellation.

Hey Foxy! You are so right about the second opinion. People think that all doctors know everything. They will be surprised to know how many doctors know very little.   A lot don't keep up with the new drugs, trials and what not.  I can tell you that the best thing I did when my mom was diagnosed with stage 3 kidney cancer in 2012, was get on this board right here. It was all of you great folks that told me what drug was new out and getting great results. I learned about side affects and how to deal with them also. TW was tremendous help with suggesting Votrient, which turned out to be a blessing.  I say this because when we went to one of the prominent cancer centers in Brooklyn, the oncologist suggested my mom take Sutent. Knowing the bad side affects others had on this drug, i thought otherwise. Especially when there was a new drug that came out, Votrient was doing wonders.   The doctor knew nothing of this drug. In fact, for being in a family practice for 21 years, he knew not very much. He only knew Sutent and Torisel and those were the two he offered.  I said i would go to Sloans for the second opinion and boy did he get mad. He called me anal rententive and was raising his voice and pointing at me and telling me he knows what he is doing and that i should not play doctor. I was taken back, but I am a tough cookie.  I was very nice and told him that I would get back to him.

Now, mom being 79 at the time didn't want to fuss. She just wanted to take the Sutent and be gone. She didn't want to make the trip to NYC either. But i made the appt. with Dr. M at Sloans.  (Oh, why can't i remember his full name at the moment? lol) and that was the best thing i did. In fact, he was one of the doctors who worked on creating Votrient and the one that ran the trials. I told him i wanted mom to try that and he said yes, that it would be a good try for my mom. He wrote up all the directions and instructions so that i can take it to the oncologist in Brooklyn so that mom wouldn't have far to travel.  He said he would be able to call him at any time and they would work together. Music to my ears.  Mom was happy also.

The oncologist wasn't too thrilled that we went, but he worked with us. He knows nothing of the drug, side affects, how people get the gas and the runs, and the pains in the stomach, high blood pressure, low thyroid. He knew zero.  Fortunately, i stayed on top of all of this by being on this board and smartpatients.com.  Mom went from stage 4, to at one point NED.  She has been on it for three years now.  They started her with 800 mgs which i told her to start with 200 mgs and work her way up. Good thing I knew that is how she should start because her pressure went through the roof (a sign the drug is most likely working).  She tried 400 mgs and she couldn't tolerate it. After several trips back and forth to the doctor (gp) and three months later, we finally got her pressure down with two different bp meds.

As it stands now, mom has what I feel is probably an inflammed lymph node.  She had two on her previous scan, and this past scan she only had one. Which really didn't grow, but the SUV was higher. I personally feel it is due to the concurrent UTI she has.  Otherwise, mom would be NED.  I think that is wonderful. I don't think she would have done well on Sutent. And, why use an old drug when there were so many new ones on the market.

So, after this long story, i would like to encourage everyone, to be sure to get a second and third opinion if you have to.  Be sure you are working with an ocologist that knows all of the new curves. There are plenty of new drugs out there.  Reach out to hospitals that do trials, don't be afraid to travel. Don't take what your doctor says at face value.  

My SIL has uterine cancer and I know she is not receiving the best care.  I know it! She is afraid to talk about it and doesn't want to try a second opinion. My hands are tied. I can help her so much, but she won't let me in. Breaks my heart. She is only 49.

Also, my mom is only taking 200 mgs of Votrient and it is doing the job!  So, for others out there that are having issues with high liver numbers and have to go off the drug.  If and when you go back on, you can stay on the lower dose, it will most probably still work.  It is worth a try.

Thanks, Fox for encouraging others with your story. It is so vital for them to hear this. There is always something that can be done. Never take no for an answer.

 Fox, have you heard anything from Alexandra? She hasn't been online since Sept. 21.

I am a doctor's worse nightmare.  Completed training as emergency medical technician years ago.  Engineer and now patent attorney, and have done tons of medical device and pharmaceutical work.  I am trained to research and understand.  When I got my diagnosis, my local urologist said I would need a radical nephrectomy.  I went home, and after 1 hours, I found my Dr. at Memorial Sloan Kettering.  One week later I was in his office, and I was assured he would do a partial.  He did, and preserved 95% of my kidney.  Sure, I could have done fine with 1 kidney, but WTF was the other doctor thinking?  Was it easier or less risky to remove the whole kidney?

Positive_Mental_Attitude said:

I am a doctor's worse

I am a doctor's worse nightmare.  Completed training as emergency medical technician years ago.  Engineer and now patent attorney, and have done tons of medical device and pharmaceutical work.  I am trained to research and understand.  When I got my diagnosis, my local urologist said I would need a radical nephrectomy.  I went home, and after 1 hours, I found my Dr. at Memorial Sloan Kettering.  One week later I was in his office, and I was assured he would do a partial.  He did, and preserved 95% of my kidney.  Sure, I could have done fine with 1 kidney, but WTF was the other doctor thinking?  Was it easier or less risky to remove the whole kidney?

 

You see, now that is a good story and great example of why we needs second opinions.  Good for you!