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Why we get second opinions

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Almost 5 years back I had my nephrectomy. I was referred to our local hospital cancer center. No treatments. Just follow up. After my first scans showed multiple mets, I was told there was nothing they could do. I tried 3 more cancer centers. It seemed the only chance I might have was to get Il-2 and that was only being done at the Yale New Haven Smilow cancer hospital. (in my area) Here is what is important. Once there I was offered the chance to try a trial drug. MDX-1106. Il-2 was now a future option. I wiped out almost twenty mets in 18 months. Unfortunately I also had some new small growth that bumped me out of the trial because of the protocol. Il-2 was next, lots of radiation, and now votrient. My math tells me that this has been much longer than 6 months. Now what is amazing to me is that NONE of the other cancer centers had knowledge or access to the drugs and treatments that have made me a RCC survivor. Incredible!

A neighbor died this weekend from lung cancer. Evidently, she was diagnosed 2-3 years ago. She was active and driving until a couple months back. While in the hospital, her oncologist walked in, in her families presence, he says," Maybe I should have started her on some kind of chemo a couple years ago."    !!!!!!!WTF!!!!!!?

She had NEVER seen another oncologist since her diagnosis. The lady and her family trusted and just followed her doctors advice. A life and death mistake. There are way too many doctors who are happy to follow your case. Until death do you part. But not enough that are specialists' comitted to saving your life.

I believe that most everyone who has been on this forum learns sooner or later to get second opinions. If not, it could cost you your life.

MattInVa
Posts: 50
Joined: Sep 2015

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.

 

angec's picture
angec
Posts: 924
Joined: Mar 2012

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. :(

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Basic stuff but sooo..amazing! I'm glad mom is still on her votrient. Selfishly it gives me more hope because I can live with the side effects of 400mg. 8 months now and I am doing well beyond any expectations. It's great for mom that she has you. And yes we do learn a lot here. It is so hard for many to believe that their doctors don't know everything. Especially RCC. I worry about Alex daily. She is having it rough right now. But she is as tough as anyone. It makes me proud how everyone is concerned and pulls for each other. Right Jan?

angec's picture
angec
Posts: 924
Joined: Mar 2012

Fox, has it been 8 months already that you are on Votrient? That is awesome!  I am glad that you can tolerate it and are doing well!  Yes, I am happy that so far mom is handling it and it is working.  I saw that Alex was online today, that is good to see!  I do worry about everyone here, even if I don't get to be on here much.  Keep cozy in the cool weather ahead!  XXOO

Srashedb
Posts: 482
Joined: Dec 2013

your neighbor's fate is so very sad; my husband's first symptoms (flank pain ) went ignored for at least a year.

after demanding an MRI which showed the mass in his kidney and on his spine, he met with the head oncologist at the local cancer center and his prognosis was dismal although because his spine was close to collapse, the recommendation was to meet with the neurology surgeon.

that doc was the director of neurosurgery at our local hospital but not qualified for this surgery so he referred him to his professor at the UC in SF. Although we got other opinions, there was consensus on this procedure.

and, while recovering from the laminectomy, he was seen by the oncologist who was experienced with renal and prostrate cancer. And, thus began a totally new perspective on treatment and the prognosis was revised. 

It was heartening to hear things like " we will need to see how the cancer behaves for a year". A year??? A flurry of tests were run, cyberknife introduced and a urology surgeon who told us "no problem" to remove the kidney.

it is frightening to be made our own best medical guides but having done this for myself in 1992 with breast cancer, it was not surprising.

my advice is if the patient can't or doesn't choose to advocate for her/himself, hit up your spouse, if not a spouse then another family member or friend who will neurotically research every word of reports and ask questions. And, always get that second opinion. 

Back in 1992, I had 4 opinions but I didn't think chemo was the right path; so, an under 40 woman with no medical experience got on these well-trained oncs but at last I found one who said that most needed to feel like they were doing something.

boy, Fox, I think my post may be longer than yours.

Sarah

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I always like the way you think. You helped me alot this spring in staying focused. Thank you. Fox.

Srashedb
Posts: 482
Joined: Dec 2013

I am glad that I helped you in anyway; I think that you are a responder. My husband's doctors tell us that as time goes on, they are seeing patients with the same renal cancer profiles that are clear responders and others who don't respond at all.

it is mostly anecdotal and they have not come up with reasons for this but there are enough cases to direct them in further research.

you responded well to all of your treatments and my husband has responded well to  cyberknife. You seem to be the lucky ones.

Sarah

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

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?

 

angec's picture
angec
Posts: 924
Joined: Mar 2012

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

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