Learning about second opinion

[dwu]

Hi, I'm very interested in how lung cancer patients and their loved ones decide on getting second opinions.  Do you have a story to share, I'm interested in learning about your experiences.  Thanks!

Daniel

[Tom Galli]

Daniel,

Welcome here and you pose a great question -- how to decide if a second opinion is necessary.  

My first and most important criteria in second opinion decisions is any time you believe you need one.  Medical care is a fee for service business and if you are in the least bit dissatisfied with the service you are receiving, then by all means go somewhere else.

That said, there are times where second opinions are helpful and times when they are not.  Those that are helpful involve critical treatment decisions and these may include:

• Eligibility for surgical treatment
• Eligibility for emerging treatments or technology
  • Target Therapy
  • Immunotherapy
  • Stereotactic Body or Proton Therapy Radiation eligibility
• Enrollment in a study or experimental treatment protocall

If the aforementioned are not the issue, and staging and typing are known without question, second opinions on conventional treatment may be less productive.  By conventional treatment, I mean treatment that confirms to a standard of care.  Once a lung cancer patient is typed and staged and slated for conventional treatment, these treatments are governed by a uniform standard of care.  For example, my first-line (first treatment) standard of care for my Stage 3b non small cell squamous cell lung cancer was thirty fractional radiation treatments and a once weekly infusion of Taxol and Carboplatin.  This combination of treatment was in 2004 the standard of care for the United States.  So striking out for a second opinion when the suggested treatment conforms to an established standard of care would not likely result in a change in care. 

I hope this is helpful.

Stay the course.

Tom

[BridgetO]

,Here's my second opinion story.

It's another example of a critical treatment decision: when the illness is something out of the ordinary. It doesn't relate to my lung cancer, but to an earlier gynecologic cancer. My lung cancer was early stage and  it seemed like the treatment decisions were pretty straightforward. With the "other one" the situation was otherwise. It was advanced (stage 3) and aggressive (grade 3) and a rare form, clear cell, which is rarely found in the cervix. 

Initial treatment was a radical hysterectomy, followed by concurrent chemo and radiation.   When my case was considered by a Tumor Board, one of the doctors  had recommended that I have additional chemo after the concurrent. I asked my medcal oncologist about this and she said that there was no evidence ithat more chemo would be useful. She said there are no studies of this particular cancer  and that what I was getting  was standard of care for an advanced cervical cancer. She placed a lot of emphasis on "evidence based medicine". 

I agree that evidence based medicine is a good thing, but it seemed to me that if you followed her reasoning to its logical conclusion, it would result in no treatment at all for me since there is no "evidence" (in the sense of published studies) at all about this  specific cancer. So I opted for a second opinion. My insurance is an HMO with its own doctors and they wouldn't pay for a second opinion outside the close network, so I paid for it myself . 

I asked a neighbor, who was a doctor at OHSU, our local medical school, if he could ask around about who to go to for this second opinion and he found out who was considered the "go to" doctor at the school/ hospital for rare gynecologic cancers. I saw her. She and the OHSU pathologist had a slightly different diagnosis--endometrial cancer spread to the cervix, rather than cervical spread to endometrium., also they found an addtional  malignant lymph node. The doctos aid she cocurred there were no published studies of this cancer iin either cervix or encometrium , but she had some clinical experience with it and she thought additional chemo with carboplatin and a taxane would be helpful. With this info, I went back to my HMO doctor and thankfully she was flexible and agreed to do thiis treatenent, noting that I was aware of my "dismal prognosis". My  reasoning was that I wanted to throw everything I could at this thing, up front.

So that's probably more than you want to know about gynecologic cancers, but I wanted to tell you my ecperience and my reasoning in advocating for treatment

Dismal prognosis notwithstanding, I'm here today, 6 years + out from treatment and NED.  (BTW, my lung cancer was discovered early in a routine surveillance) I encourage people who are not entirely convinced that the treament recommended for them is the best thing to seek a second opinion if you can. I'd  definitely do it if I had any concerns about my lung cancer treatment.  I think we need to be as well informed as we can be about our illnesses and comfortable that we're getting the best care we can get.

Bridget O