When and how to seek a second opinion

Kedahnya

Curious as to how many of you have gotten second opinions on diagnosis or treatment plans and such and if there was a big difference in what the second opinion said. Also do you have to go back to your primary care to be referred else where for the second opinion or contact your insurance company to be sure they will pay for one.

To give a shortened version of what's going on in my situation: I am 42 with a previous history of renal cell carcinoma I live in a fairly small town that only has a medical clinic that is branched off of the hospital that's half an hour away which is where my primary care dr referred me to because they also have a new cancer institute (less than 2 years old) that staffs the oncologist and is where they do pet scans, chemo and radiation treatments among other things and also the general surgeon he referred me to (they don't have a breast surgeon at the hospital at all). After meeting with the tumor board the oncologist and general surgeon said I needed to have an echo, mri of the brain (because of headaches and nausea) and a petscan before moving forward. Get those results back and the petscan showed something on my occipital bone which could be the breast cancer has spread. They discussed putting in a port and also doing a biopsy on the sentinel lymph node and after meeting with the tumor board again referred me to a neurosurgeon in St. Louis which is about 2 hours away.

The issues I am having are I still haven't been able to get an appointment scheduled in St. Louis because first they called me last Friday because the general surgeons referral wasn't completely clear on why I was to be seen and he was in surgery all day so they would have to wait til Monday to get a hold of him. Then I got a call yesterday because they hadn't received copies of the petscan so they had gotten back in touch with the surgeons nurse and are waiting on that. I like to read all of the test results, imaging results and doctor summaries on line just to double check things and make sure what I heard was actually what the doctor said or meant. Tonight I was reading the one from my oncologist from last week and there are things in there that are not accurate some are little things like it has me as married instead of widowed, an active drinker (I have maybe 2 drinks in a month if that haven't had any since my daughters wedding in November), that my father had lacrimal gland cancer and has passed away ( he had a benign brain tumor in '87 but is still very much alive) but the most concerning for me is in the assessment part it shows my cancer as being ER/PR positive and HER2 negative when they should all be positive (I double checked her earlier assessment along with the biopsy report and the surgeons report)

I have always had faith that my doctors were on top of things and not sure if I'm having doubts now because of the waiting and anxiety and maybe reading too much into things or what. Sorry it turned out longer than I meant but I appreciate anyone that read the entire thing and would love to hear your thoughts or advice.

rdeesides

I think it all depends on what type of insurance you have. I have a PPO so I am able to just call any doctor and set up an appointment myself, assuming they take my insurance. The hard part is figuring out who to get a second opinion with. You could see who is on your plan nearby and then do research on those people.

Rebeka

Anonymous

My second opinion at MD Anderson (3 hours away from me in Phoenix) took about 3 weeks to get scheduled after my initial dx. They have a good link on their website for making second opinion appointments, so it helped-it was very comprehensive. Trying to gather CDs of my scans and copies of everything else that MD needed to review before I came for my appt seemed to take the most time. So while you're waiting for the call back, perhaps consider gathering all your records (usually they need them on DVDs) so that you can overnight them when they ask for them.

I too would be troubled that your medical team got so many things wrong in your records. Sloppy carelessness is the last thing we need when working with doctors who are helping us treat b.c. It almost sounds like they used another patient's record by mistake.

Consider making an unscheduled visit to your doctor's office. It's harder to ignore someone who is standing in front of them asking for something.

Claire in AZ

Anonymous

My second opinion at MD Anderson (3 hours away from me in Phoenix) took about 3 weeks to get scheduled after my initial dx. They have a good link on their website for making second opinion appointments, so it helped-it was very comprehensive. Trying to gather CDs of my scans and copies of everything else that MD needed to review before I came for my appt seemed to take the most time. So while you're waiting for the call back, perhaps consider gathering all your records (usually they need them on DVDs) so that you can overnight them when they ask for them.

I too would be troubled that your medical team got so many things wrong in your records. Sloppy carelessness is the last thing we need when working with doctors who are helping us treat b.c. It almost sounds like they used another patient's record by mistake.

Consider making an unscheduled visit to your doctor's office. It's harder to ignore someone who is standing in front of them asking for something.

Claire in AZ

Kedahnya

Thank you for your replies. I just got off the phone with my insurance company asking about if I needed to get a referral or check anything before contacting the hospital I would like to be seen at for a second opinion but I’m not sure they were understanding me correctly because they said the hospital was not in the network but I was seen in both January for a lung ct and then in February to see my pulmonary doctor and they were both covered and paid. Going to call the hospital directly and speak to them and see what they say here in a few. A friend of my Moms had her breast surgery done there and recommended them and that’s where my kidney surgeon is located at also so even though it’s farther away I’m more familiar with it and their cancer facility. It is also in the MD Anderson Cancer Network which was recommended by my uncle who has had two brain tumors removed at MD Anderson in Houston. I also already have all of the imaging on dvds from the first mammogram to the brain mri and petscan in case my kidney wanted to see them when I go back in April

Kedahnya

I finally got most of it straightened out hopefully just really frustrated at the moment. The neurosurgeon in St. Louis called earlier and could get me in this afternoon but then once they started getting more information they realized they don’t accept my insurance so basically a week and a half of waiting for nothing. 🙁 was able to find out Ellis Fischel in Columbia will take my insurance and got the breast surgeon appointment set up this next week and possibly the neurosurgeon and oncologist as well for the second opinion if they can get all the reports in time. My doctors office was supposed to have sent them almost 2 weeks ago but so far nothing so heading to the office now to see if showing up in person helps like you said. Hope everyone is having a good day and having some nice weather like we are here.