So about that second opinion...

As I mentioned previously, I did get a second opinion at Dana Farber Cancer Institute.

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.

My Cheating Heart

Paul Klee, The Sick Heart

The other day I made an appointment for a second opinion with Dana Farber for when my biopsy results are in.  I know getting a second opinion is a common and accepted practice that is expected for serious diagnoses like stage IV cancer. But still, I can't stop feeling like I'm cheating on my oncologist.

I know in my heart (my cheating heart) that this is a smart move. The right move. It's what cancer patients are supposed to do. And I'm certainly not sneaking around about it.  But it still feels stressful.

Part of the stress is just plain logistics. Now that I have the appointment, I need to get reports sent, slides sent, images from the tons and tons of scans I've had burned to CD and picked up to bring with me. There are forms to fill out, insurance to see about, and a drive into the city with traffic and parking hassles.

Part of the stress is the unknown.  I'm comfortable where I get my care and I know how to do it.  I know where to go, what to expect, who to go to when I have a question or concern, and how to go to them.  This new place?  All new. And that makes me feel like a 6 year old dropped off in a room full of strangers (ok, this happened to me a lot growing up, and I was never good at it, so this may just be my issue here, but there you have it).

Now, to be fair, Dana Farber is good at managing the logistics and unknown. I spoke for 45 minutes with a scheduler in the Breast Cancer department. She talked me through everything and immediately emailed me a set of documents with parking and directions, a list of what to get with tips on how to get them, and told me she was here to help and to never hesitate to reach out to her if I had questions. But still.

(Although actually, the really nice woman I spoke to about the appointment, also sort of irked me a bit--she kept telling me things like "Ok, first I want you to breathe--we have great doctors who help people with bone mets live for decades.  You're going to be fine." And I was thinking: I-already-am-breathing-and-my-own-oncologist-also-told-me-bone-mets-were-often-very-treatable-and-you-have-no-idea-if-I'm-going-to-be-fine-and-I-resent-being-treated-like-I-was-only-told-to-go-home-and-die-except-for-you-guys-because-I-wasn't-told-that-at-all-and-I'm-still-a-long-way-from-giving-up!  Yeah, I know she was actually being compassionate and comforting and my thinking was completely uncalled for.  I think cancer makes me a little high strung.)

And I'm sure part of the stress is just human nature and a natural sense of loyalty, even if it spreads beyond reasonable places for loyalty and into business transactions this way. It's maybe not appropriate here, but it's part of who I am and the kind of person I try to be in other settings.

But, unfortunately, I think my really big stress with getting a second opinion right now is once I get my second opinion, do I stay where I am or should I transfer my care? 

Now, before you even say it, I know I'm getting ahead of myself here. First I need to get the stuff and go to the appointment, then I need to think about the information, see how I feel, talk with my husband, do a gut check, etc., etc., then I can make a decision based on actual facts.

But there's just so much unknown! The future is yet to come and I don't have a crystal ball anywhere. I don't know if the care would be better one place or another--not just the treatment, but the care that goes with it. If I stay or go, would I regret it? What if one oncologist ended up doing something that worked better than what the other would do? What if a clinical trial at one place would end up working better for me than one at the other? Goodness knows, I can always find something to worry about no matter what I do.

One factor involved in this is, I like my oncologist and her nurse practitioner.  I am very happy with the care I've received, they are both smart and compassionate, and very on top of things.  My oncologist is up to date with research and studies and has good ideas and good solutions for the things that have come up so far. And she and her nurse practitioner are comfortable to talk with. I don't know what to expect at Dana Farber and, even after I have my appointment, if they are lovely and compassionate, I will still wonder if there may be a difference between attentiveness as a new second opinion and attentiveness as an established patient. Because even when I know things, there's still so much left over not to know. And you probably see what I mean about being good at finding things to worry about!

Another factor is, the place I've gotten my care so far isn't a dud hospital by any means. It's regionally well regarded in cancer care and nationally ranked in other specialties, including one I use. And, the place I go to did multispecialty consultive care before it was cool--it's really nice to have all my doctors on the same page without having to do the work myself. But, on the other hand, Dana Farber is a national leader. They do a ton of research, and are staffed by national experts who deal only with breast cancer. And they have a ton of programs and peripheral things to help the "whole person" dealing with cancer. They even have a conference call metastatic cancer support group--how perfect would that be?

If I'm being honest with myself (and I'm trying to be), there's another shallowish thing about Dana Farber that is really tempting me: Dana Farber doesn't have to explain itself.  Well, I mean of course they do, every place does, but what I mean is, lots of people who care about me seem to feel responsible for making sure I'm making good decisions. They want to make sure I'm getting good care, which is nice. Now, the people who have actually gone to appointments and know people who have gotten care where I do don't question me, and the questions are pretty much what you would ask about any cancer care.  But I feel like, people would be less likely to ask the questions about Dana Farber's recommendations for me. Because, come on, it's freaking Dana Farber! So that would be convenient.

And, of course, besides the "end of discussion" possibilities behind the "it's freaking Dana Farber!" thing, there's a part of me that understands that the fact that I can even write, "It's freaking Dana Farber" and have it mean something says a lot about the place itself and its reputation.  Which is something I need to think about. Not that I would necessarily get different treatment at Dana Farber for my not-that-rare kind of cancer than I would at other well run cancer centers, but I would be foolish not to consider what that reputation is built on.

So now I wait.  I wait for my biopsy results and my appointment with my oncologist.  Wait for my other appointment with a Dana Farber oncologist. Wait to see how it all goes and wait for some kind of sign to tell me what to do.  Then (possibly) wait for treatment to begin and wait to see if it works.

But as I write this, I'm thinking of one other thing, the last thing, which is that choosing between one local location or another for excellent care with a reasonable chance of decent outcomes, covered by my insurance, accessed with my working car on safe and well maintained highways, gone through with the support of supportive family and friends, and begun after a wait for results and appointments were I still feel petty good and am able to walk around while I wait (with a little help from Tylenol which we are able to afford), has got to be a pretty good problem to have. Yeah, I would give it all up for no cancer, but on the other hand, being a little grateful for having such choices probably wouldn't hurt me a bit.