Help with Seeking out 2nd Opinion

monte44

My husband underwent a FSA biopsy of the para aortic node yesterday.  This was after receiving elevated LDH blood test, elevated liver enzymes and two CTs showing bilateral enlarged pretracheal, axillary nodes and "prominent retroperitoneal, porta hepatis and para aortic lymphadenopathy."  He also has an enlarged spleen.

 

The oncologist we met with before the biopsy has told us it is most likely some kind of lymphoma.  We should have the results of the biopsy by Friday.  I am not looking for "is this cancer" help because I know that you all can't tell me that.

 

What I am trying to find out is how did you go about getting a second opinion?  If the oncologist his primary care sent him to recommends a particular course of treatment, we obviously will want someone to confirm that what she recommends is the right way to go.  Did you seek referrals from friends?  Online?  Does insurance cover a visit for a second opinion?  If the results are what we are anticipating, we need to be able to move quickly to get the 2nd opinion.

Thanks for any help.  Luckily, we are about an hour outside of Boston so great medical care is within reach.  

 

Max Former Hodgkins Stage 3

2nd

Monte44,

The first step to getting a second opinon is getting a first opinion. 

There are over 30 common strains of lymphoma, and numerous uncommon ones in addition (i.e., 40 or more strains readily recognized by good hematological pathology labs). Depending on which strain your husband has, his treatment may be very straightforward and unproblematic, or much less so . Let your oncologist explain which situation he is in .  Treatment protocols for most lymphomas are highly standardized, based on years of statistical review of outcomes.  In most cases, treatment is more-or-less "plugging in" a patient to the recommended protocol. As I mentioned, some cases are rare or problematic, and treatment choices are less clear-cut, but yor oncologist will tell you this if it is the case.

Your oncologist is perhaps the best source for recommendation of a second opinion, perhaps someone in his own group. My impression from reading here for years is that oncologists are not offended by requests for second opinions; they seem mostly to understand and even encourage them, at least in complex cases. Whether or not you can go outside his group will depend on the policies of your insurance carrier, and this differs widely between policies and carriers. These policies are changing almost weekly in some areas .

I wnet initially to a regional practice, which has about 30 oncologists. My biopsy was clear, and my oncologist stated that there was no ambiguity in what any Board Certified oncologist would recommend, and that he was certain that even places like MD Anderson or Sloan would proceed exactly as he was doing.  What I have read here since (over the last two years) confirms all that he said. He is Ivy-trained, and has an incredible five (5) Board Certifications himself, so some o the best doctors can be found outside the "high dollar" national centers.

Best of luck to your husband and yourself. In some ways, my cancer and treatment were harder for my wife than for me.  I have relatives in Bellerica, Mass, and would not want to be there this winter !

Max

 

monte44

Max Former Hodgkins Stage 3 said:

2nd

Monte44,

The first step to getting a second opinon is getting a first opinion. 

There are over 30 common strains of lymphoma, and numerous uncommon ones in addition (i.e., 40 or more strains readily recognized by good hematological pathology labs). Depending on which strain your husband has, his treatment may be very straightforward and unproblematic, or much less so . Let your oncologist explain which situation he is in .  Treatment protocols for most lymphomas are highly standardized, based on years of statistical review of outcomes.  In most cases, treatment is more-or-less "plugging in" a patient to the recommended protocol. As I mentioned, some cases are rare or problematic, and treatment choices are less clear-cut, but yor oncologist will tell you this if it is the case.

Your oncologist is perhaps the best source for recommendation of a second opinion, perhaps someone in his own group. My impression from reading here for years is that oncologists are not offended by requests for second opinions; they seem mostly to understand and even encourage them, at least in complex cases. Whether or not you can go outside his group will depend on the policies of your insurance carrier, and this differs widely between policies and carriers. These policies are changing almost weekly in some areas .

I wnet initially to a regional practice, which has about 30 oncologists. My biopsy was clear, and my oncologist stated that there was no ambiguity in what any Board Certified oncologist would recommend, and that he was certain that even places like MD Anderson or Sloan would proceed exactly as he was doing.  What I have read here since (over the last two years) confirms all that he said. He is Ivy-trained, and has an incredible five (5) Board Certifications himself, so some o the best doctors can be found outside the "high dollar" national centers.

Best of luck to your husband and yourself. In some ways, my cancer and treatment were harder for my wife than for me.  I have relatives in Bellerica, Mass, and would not want to be there this winter !

Max

 

Thank you Max.  Great advice.

Thank you Max.  Great advice.

COBRA666

monte44 said:

Thank you Max.  Great advice.

Thank you Max.  Great advice.

Same here !!!

I can not add anything to what Max has said. I agree totally with what he has said. John

Unknown

Second Opinion

After the first opinion is fully in and after your onc gives his recommendations is the time to get a second opinion. I simply called MD Anderson and they brought me right in for my second opinion. Best of luck. Be strong.

Rocquie

2nd Opinion

Welcome to the Discussion Group, monte44. I hope you will find the answers and support you need.  We have many types of lymphoma here, and also we have several caregivers, like yourself. 

I think Max is correct when he states you need a first opinion for starters. If your husband's biopsy is positive for lymphoma, he will likely go through many more tests, for typing and staging, before treatment begins.

My own Hematologist/Oncologist referred my case to our state's Tumor Board, and also consulted within his own practice. I have always believed in him 100%. He also referred me to Duke University for a consultation. The doctor I saw there sent my pathology slides for another opinion. Good thing he did--my original diagnosis was incorrect. From my own experience, I highly recommend a second opinion on pathology.

As far as insurance, most cover second opinions. Call yours to find out for sure. 

One of the best websites I have found is: http://www.lymphomation.org/  The site is kept up-to-date with current information. 

Good luck to you and your husband. I wish you all the best.

Rocquie