And, as many of you may have expected, it wasn't nearly as traumatic or gut wrenching as I was expecting from the big, huge, gigantic deal I was making it into beforehand.
Plus, I was really glad I did go, and it was very helpful on some different levels.
This post is especially for anyone who might be where I was a few weeks ago, all stressed out about getting a second opinion. Because hindsight is 20/20 and I'd like to share my 20/20 with you.
1) Making the appointment and getting ready.
- As I mentioned in an earlier post, making the appointment was spectacularly easy. I got the number from their website and called. They put me through to a scheduler who works only with the breast cancer department and she asked me a ton of questions and emailed me a 1) an information form to fill out, 2) driving and parking directions, and 3) a list of what they would need from me and tips about getting all of the things they asked for.
- I went to my regular hospital's site and printed out the records request form and the imaging study request form. Filled them out and faxed them in.
- For the pathology slides, as directed, I called my current hospital's pathology department to let them know Dana Farber would be requesting them. I have no idea what the rules are for pathology and HIPAA but this one didn't need to be in writing, or at least not in my writing.
- For the images, I actually added a list of all the studies I've had and the modality and dates because I'm weird that way, but I suspect the start and end dates would have been enough.
- For the reports I specified everything from the date of my first screening mammogram (which made sense mostly because I was at an age at diagnosis to have only had one screening mammogram prior to that, if I had had more I guess I would have just asked for the most recent clean one prior to diagnosis, but I'm not sure about that one), but the woman in records who called me back told me they could screen it down by area, so on the phone I asked for only the reports relating to my cancer. (As usual, everyone at my current hospital is pleasant, and that even goes for the people in patient records who I think don't work with patients every day. I don't know what they put in the water there, but some days I think I'd like to get some and pass it out liberally)
- The default for the medical records at my current hospital is printed on paper unless specified otherwise, so I asked for mine as PDFs on a CD. As a cancer patient, I've been there more times than I can count and I didn't want to have to pick up a flipping book and get that to Dana Farber, so electronic seemed like the way to go. Good thing, too, because what I got was over 300 pages on the PDF.
- I know I could have had them send them directly to Dana Farber, but I wanted to have a copy for myself, because I'm like that. And, since they were electronic, it was easy enough to email them (password protected) to Dana Farber from here. (I also could have had my current hospital send them to me instead of picking them up, but it's not like I'm not going there enough anyway so I picked them up before an appointment.)
- The trend now is for places to give patients electronic access to their own records and I know my current hospital is working on that, but it's not up and running yet. If you go somewhere that does, I imagine it would be even easier than all of this, so even better for you!
- I may have been able to just call oncology and ask them to put everything together for the second opinion, I'm not really sure about that. But then again it was only 2 faxes, a phone call, and picking up some CDs and I was set. Plus, I'm kind of a control freak and having something to coordinate helped me feel like I was at least doing something.
2) What I actually learned at the second opinion appointment.
- Well, the short answer is "nothing" which, when you think about it, is kind of everything.
- The oncologist I saw at Dana Farber was great and easy to talk with. She explained things clearly and nothing she told me was any different from what my regular oncologist had told me, which is good because if she had told me something completely different after all that care and treatment, that wouldn't have been very bad.
- She also told me that had I been at Dana Farber from the start they would have done exactly the same treatments as I had at my current hospital. That particular statement was like gold to me, because, as much as my team seemed to be up on the latest and talking to me about recent studies and reports, as much as I've read NCCN guidelines, as much as I've compared my treatment to other women's with similar diagnoses, I still really needed to know that I hadn't doomed myself to this end by not making a different choice when this whole thing started.
- She gave me the report from Dana Farber's pathologists and explained it, and also said they agreed with my previous reports. And, since there are just enough stories online about people who were told they had one thing until they got a second opinion and were told something else, usually with a side of, "that saved my live, thank God for [wherever the went for the second opinion]," that was also good to have confirmed.
- She also spoke highly of my plastic surgeon who had worked with her before going to my current hospital, and spoke highly of my radiation oncologist and told me if I was her patient she would still be happy to set up radiation treatments for me there to make it an easier drive, which I took as a vote of confidence. So that was encouraging, especially given that my reconstruction is mostly done and I have all that radiation under my belt. At this point it would not be encouraging to hear thinly veiled shock that I let those people treat me--unsolicited praise is much, much better.
- She looked at the clinical trials Dana Farber has open now and told me there wasn't anything she would recommend for me, but that the list changes regularly and also if a treatment failed, then there were trials I might be interested in.
- She said there was some question about whether an aromatase inhibitor (a different kind of endocrine therapy that could help starve my cancer from it's estrogen receptors) would work for me since the tamoxifen failed, something about the cancer possibly having estrogen receptors but not being much dependent on the estrogen, but she agreed that she would also recommend that as a first step.
- She reiterated that there were some good things about my cancer, in a stage IV kind of way, but that the quick recurrence was the not so good sign.
- Even though she didn't have anything completely different to tell me, it was helpful to hear her explain the same things from a different viewpoint. Plus, I'm sure it also helped that I was a lot more settled mentally by the time the second opinion rolled around--for that reason alone it was helpful to get a refresher discussion on where I stand.
3) Managing the "Cheating Heart" thing
- Ok, that was actually much, much easier than I thought it would be.
- I mentioned it to my current oncologist during my appointment before the second opinion.
- I put my current oncologist's contact information along with my primary on the Dana Farber "doctors to send information to" (or whatever the wording was) form so she could be in the loop with whatever Dana Farber did and thought.
- And, you know those stories of people who get second opinions and it's totally not a big deal and the two oncologists talk to each other and consult or otherwise share information like professional adults with the patient's good outcome as the goal? Totally true. I was expecting the Dana Farber doctor to send a written report or something, but (without me bringing it up), she told me she was going to call my current doctor and talk with her about it the next day. When I spoke with my current doctor afterwards, my current doctor mentioned that she was playing phone tag with the Dana Farber doctor and talked with me about the appointment.
- So, yeah, not a big deal at all.
So, with all of that under my belt, I feel a lot better and I'm glad I did it. I'm now tapped in to Dana Farber and can check in with them as needed and make appointments for peripheral services there if I feel the need. If at some point I want to switch my care, I easily can, but for now, their affirmation of my treatment and my own comfort where I am is helpful.
And my advice to other cancer patients? Getting a second opinion really isn't as hard as I thought it would be and, just like they say, it gave me a lot of peace of mind (after I got over the extreme stress leading up to it, of course!). Do I wish I never had any reason to walk into Dana Farber? I know that goes without saying. But since that doesn't seem to be the case, I'm glad I went ahead and did it.
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