2nd Opinion

[Babs]

Hi all,

 

I haven’t posted in a bit.  I have been keeping up on all of your journeys.  I have what I consider a dilemma, only because it is uncomfortable for me to deal with.  Long story short, I was diagnosed August 2019 with IIIb NSCLC squamous.  Tumor was 6.5 cm located in my chest cavity causing obstruction of my SVC (Superior Vena Cava).  Went through 6 weeks radiation with chemo Carbo/Taxol. Then went on immunotherapy, Durvalumab.  My oncologist said In January that the tumor was now just scar tissue with no active cancer cells.  I was scheduled for my 16th infusion of Durva on July 2nd and had a CT before.  The scan showed a slight increase in the mass she said could still be scar tissue, 2 lymph nodes larger but 2 smaller.  She said that was perplexing.  She has me scheduled for a PET on July 21st.  I like my Onc very much, however I felt now was time for a 2nd opinion.  I got an appointment at the Mayo Clinic in Rochester, not easy to do by the way.  I will still have my PET done here on 7-21, then have the results sent down to the Mayo.  I have a brain MRI on 7-27 and an appointment with a medical oncologist on 7-28 and another appointment with a radiology oncologist either that day or the next with a possible MRI of the spine, all done at the Mayo.  My dilemma is how to have this conversation with my current oncologist.  My hope would be for her to “work with” the Doctors at the Mayo and still actually have any treatments done here in Minneapolis instead of doing the 3 hour round trip to do it all down there.  I know it’s my right to seek a 2nd opinion, I just don’t want to change the dynamic of my relationship with her and I guess hurt feelings, which sounds pretty stupid now that I say that!  

I would be interested in hearing anybody who has dealt with something similar and how it went/ is going?
 

Thanks to all,

Babs

[Tom Galli]

Babs,

While the community at large refers medicine to a science, it is very much an art backed by science. A physician answers two questions with each patient: what is wrong and how will it be treated. An answer to what invokes the artist and must come first before determination of treatment or the how answer. In fact, in lung cancer (most cancers) how answers have become so standardized they are codified in the form of National Standards of Care. Everyone diagnosed at Stage X and Type Y gets treatment Z so the how (the science) is mostly reduced to a recipe book.

Consider also that you are paying for a service; you pay for both first and second opinions. In that vein, I once had an interesting conversation with my general practitioner on second opinions. 

Physicians are important people but we pay them for a service and at least in the United States, we have the right to choose physicians or providers. In that vein, once you are satisfied with your diagnosis, you have every right to dictate where treatment is provided, provided of course that the place you choose offers the treatment you need.

Stay the course.

Tom

[Rower Michelle]

Hi Babs

Good to hear from you, thanks for the update.  I’ve always thought it’s not a matter of if there’s a second opinion but when.  
 

First of all I have an issue with the term second opinion, it imply a some sort of dissatisfaction with care which isn’t always the case.  In my mind it’s more along the lines of getting a consultation from someone who might see this type of diagnosis more frequently.  
 

 I understand the hesitation in having the discussion, you might want to ask the clinic social worker how responsive your doc is. Getting some inside intel to your doctors temperament is helpful.  For example I see my doc who isn’t Mr Personality on Thursday’s or Fridays since he seems to be in a better mood on those days.  
 

If the doc gets super defensive then you know it’s not a good fit for your ongoing treatment.  
I suspect you’ll find your doc will be fairly cooperative.  
Let us know how it goes. 
Michelle

[MBinOregon]

Hello, Babs,

I'm currently on my 4th med onc 😁 The reactions I've received varied from completely professional to pathetic defensiveness (my 2nd one really was a punk a$$ that I wanted so badly to smack around just for fun), but I've never once regretted it at all.  When I was new to this forum, one of Tom's response to my posting had (I see he said the same thing to you earlier 👍) "you are paying for a service" and that really resonated with me (I was already on my 2nd one by then) so the right next time I saw the 2nd onc, I told him to refer me to my 3rd one - I could have called the 3rd onc's office myself, but to get a faster appointment, it's always better if an onc calls.  Then sat back and watched him get all defensive (with a smirk on my face, I'm sure.  I don't usually control my unhappy face.) then asked him to make the call and left.  It is quite possible that my skin is thicker than most and/or I'm more opinionated/bull-headed than most 😆

FYI, my 1st and 2nd oncs were in the same clinic and 3rd and 4th are in the different clinic.

My hope is your onc behaves like an actual professional but if she doesn't, my take on that would be she wasn't meant to continue this journey with you.

Good luck to you.🤞🙏

MB

[Steff]

Babs-

These are my thoughts about 2nd opinions and working with docs in general.  Unless you live in a tiny community with only 1 local doc, doctors are used to working with other doctors.  Some don't like it, but that is their problem...my  mom's oncologist has her fellow onc's to work with, as well as, the Seattle Cancer Care Alliance.  They do not make a big treatment decision without consulting one another.  She also takes orders from my  mom's pulmonologist as he knows best how to treat the various lung issues that have come up during cancer treatment.  I personally feel that patients are doing themselves a disservice if they willingly choose a doc who practices in a bubble.  There is so much knowledge to be gained by collaboration and no doc can know everything.  If your current oncologist takes your news of a 2nd opinion negatively, I really think that you are doing yourself a disservice by staying on as their patient, unless you have no other choice.  After all, this is your life we are talking about, not your doctor's.  They should be happy to have a patient advocating for their care...to me, that shows you are willing to fight for life.

Hope this helps a bit.

Take Care,

Steff

[Babs]

Tom, Michelle, MB and Steff,

 

Thanks so much for all of your input!  Great advice and insight.  It really does make me feel more at ease and justified in what I am doing. I will be meeting with her next week after my PET and will let y’all know how it went down.

MB, you are a hoot!  I have also been known to kick some a$$ when need be so this was a much needed reminder that I am in charge.

- Babs

[Susanrae]

Hi Babs,  

I haven't posted for awhile.  April of 2019 I was diagnosed with Stage IV nsclc, adenocarcinoma along with brain metastases at Mayo and have been very satisfied with my care.  I also worked there for about 25-30 years so that helps a great deal!

During your visit to Mayo it is a good idea to get a business card from every physician you encounter during your care; if you are not offered a card it is simply an oversight, they are very busy people, so you just need to ask them for one.  Mayo is a teaching clinic so you will meet your primary consultant along with his/her Fellow, maybe Residents, etc., and/or other members of their team, which is why getting the business cards is very important.  Meeting all the different professionals is a good thing but also very overwhelming and impossible to remember all of the names.  When you leave Mayo at the end of your visit, you will be glad you have all of the business cards!!    They did come in handy when I was first reeling from the initial diagnosis and had contact information readily available for followup questions.  I still have quite a collection, just in case!

It is a good idea to get a second opinion if that offers you a better comfort level of care.  As said previously, if you let your current provider know that you have an appointment to get a 2nd opinion and they are totally onboard with it, it speaks highly of that oncologist.  If they are not, it goes the other way.  

If you have any questions, about navigating through the Mayo complex please do not hesitate to contact me.  Otherwise there are information desks and the people that work them are very informative.

Hang in there!  

Take care,

Susan

 

 

 

 

 

 

[Babs]

- UPDATE-

Well I had that conversation about a 2nd opinion with my Oncologist and she was very much on board with it!  She said my PET showed increased activity in the current mass but no spread.  She said the “activity” was substantial compared to the original PET, but they have a new scan machine and it might be touchier than the other one.  What???  She wants me to call her after my visit with the Mayo and proceed from there so basically do what they recommend.  
 

Susan - Thanks for the tip on the business cards.  From everyone I’ve talked with, the Mayo is quite the well oiled machine and VERY impressive!  I am assuming you had a brain MRI considering your diagnosis?  Any info of what to expect with that?  Also, I hope things are going well for you.
 

Take care all,

Babs

[Rower Michelle]

Good for you!  I can feel your relief all the way down here in KC!   Carry on.