Anatomy of a Second Opinion

My HMO authorized a second opinion for my thyroid cancer two and a half months ago.  I went through my copies of my medical records and discovered many gaps, so I went about the business of contacting three different medical centers in an effort to fill them. I was about 90% successful. One of them I had to request twice before they sent me anything and part of what I needed they said they did not have, which I know is wrong. The other said they would respond to my request in five days. It took twenty-eight. My authorization runs out in two weeks. I can’t wait around any longer. Last week I faxed over 110 pages of medical records, per their request, and wait for them to call me, hoping I can still get in.

In the interim, I spent inordinate amounts of time scrutinizing the imaging tests that came to me on white-labeled CDs. I looked at pictures of malignant lymph nodes and compared them to my images. I calculated L/S ratios. I watched my last node biopsy, thinking, incredulously, “That lymph node looks totally benign!”

In June, I saw my primary care physician because my heart palpitations became terrible; I woke up more than a few times gasping for air and I suddenly can’t breath while I am working out. Dr. Overinvolved instructed me to never be afraid to make an appointment if I feel I have become hyperthyroid. That’s what I thought was occurring, so I went, and it was an awful, terrible, no-good appointment for reasons that will get their own blog post. My EKG is normal. My echo is normal. I started having panic attacks at the gym when I climb stairs and I don’t know what to do to make them stop.

Over Memorial Day weekend, my endo’s office called me to reschedule my three-month follow up. She only works one day a week and has decided to switch her one day from Tuesday to Wednesday. So now I am having a four month follow-up. My respect for her and any sense of trust I have in her expertise has dwindled further.

I had my blood drawn at the three-month mark anyway and my numbers are exactly the same. She has no comment in the interim, so I have to wait until late July to hear what she wants to do. I know what I want to do, and hope that the second opinion will agree with me.  There are two choices I find acceptable. Scan me. Or put me on yearly follow-up. I’m taking my life back.

If I fail to make the HMO’s deadline, I will go see Dr. Overinvolved and pay cash. He will tell me to take my life back; I know exactly how he thinks about thyroid cancer and there’s no question he will agree with me…and that’s why I would prefer to see someone else for that unbiased perspective!

I miss him. He is that safe person in my head, despite what he did. I have not yet found a way to reconcile what happened. I’ve read more books on the topic of transference and sexual abuse by health/helping professionals and it’s clear that when these things happen, the patient being wonderful or special has nothing to do with it. We are merely a vehicle and it’s all about them and their unmet needs. I keep trying to tell myself this, but I need the romanticism of the story to keep myself going. There was no one else, nothing else good to come from this and I need it to have a purpose. Without that storyline, I’m not sure how I would cope. Perhaps I would cope better.

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In Violation of the Geneva Convention…

The other night, I had a nightmare that I was going to be restrained by my neck and I kept yelling, “You can’t! I had surgery! I had cancer! That’s illegal! It’s in violation of the Geneva Convention!” and I woke up with a start, gasping and quivering in fear.  “The Geneva Convention.” I mumbled to myself.”In violation…”

What’s in violation of the Geneva Convention, dear reader?  Torture.

I have doubts and questions and fears about my follow up, about the ever present tiny Tg and my recently doubled TgAb, the massive reliance on ultrasound. I previously instructed myself to put it on the shelf and not look at it again until June. Pending those results, I would then seek a second opinion if I continued to feel uncomfortable. Some days I can do this, and others I cannot. Seeking that second opinion right now feels premature, and there’s the loaded question of who I would get it from.

Dr. Overinvolved is one of the few people I listen to and believe when he gives me his opinion. Part of the issue is I don’t trust my doctors. Him, I do, and I do because he’s real; his over involvement helped me in a myriad of ways. He was in my corner and I knew it. No one else did that for me. There’s also the dark-ish side of his over involvement and those intense emotions between us. Transference never dies. Not to mention, he is not the most well-qualified specialist I could consult with. But I trust him and he knows the history, including why I find this so upsetting (hint: it’s not depression). That may be more important to me than the actual medical situation.

I also have other less than noble reasons for considering him. I want him to know how this has turned out. He said I was cured and that mets were theoretically impossible. That’s not what the blood work says. None of this hurts him no matter how over involved he may or may not have been. It is still my life being sullied by this and that will not change if he learns of this turn of events.

The alternative is to consult with someone I do not know who is infinitely more qualified. The trust issues could remain, or it might settle them down if this opinion is in agreement with the current one. However, my trust issues go much deeper than my PTSD from the original surgery and treatment. I was at another medical center prior to this one, and it is that medical center that instilled the doubt that has laid out this course I have been on for the last six years. Is it wise, then, to throw another new ingredient into the mix?  I like the idea of seeing Dr. Overinvolved because he’s not a new ingredient.  I like the idea of seeing someone brand new because there is much less bias involved.  I must be clear; I do not believe my treatment by Dr. Overinvolved was compromised.  I think he made some claims he should not have, but everything else he did was right on.

The torture, then, is not knowing what to do, who to turn to, and who to believe in as much as it is being in this position in the first place. I remain partially submerged under layers of questions and doubts about the clinical course not taken with my next move not at all clear.

Am I Going to Let This Number Run My Life?

This morning was my six month follow up for thyroid cancer.  I go every six months because I have detectable tumor marker: Tg (thyroglobulin) and TgAB (antithyroglobulin antibodies). Because I am TgAb positive, the Tg is not a reliable indicator, so the TgAB is used as a surrogate tumor marker.  Mine had been on the decline and then steadied itself around 2.1  Until now. It’s more than doubled so now I am on a three-month follow up schedule.

I have known that the number doubled for a couple of weeks and I have been trying to live my life as “an indeterminate responder” for nearly six years. It’s wrecked me because that very brief time where I had cancer and was in treatment was so traumatic I am in fear of living it again. Everything from not being supported by family and friends, to Dr. Overinvolved and his rapidly cycling moods and actions, my inability to plan or see a future for myself, to the mistreatment I experienced in the hospital, to my loss of feeling safe with doctors and in this world; and that sense of knowing, to quote Virginia Woolf, “It is possible to die.”  This little number continues to wreck me and leave me unsteady every hour of every day. It is at the center of my depression, that I know for a fact.

How can I plan a future with this hanging over my head?  I am watching myself crash into the wall in slow motion and this could go on for YEARS before anything shows up on imaging and something can be done about it.

From an educated patient’s point of view, I fail to see how knowing I have this little number is contributing positively to my care. They won’t explore it further; I haven’t been scanned since I had RAI in 2009 and the ultrasound has not shown anything suspicious in six years. I cannot come up a medical reason as to why knowing this number and using it to continue to declare me NOT free of disease is doing anything but lining the pockets of my medical center. This means more appointments, more blood work, and more payments from my HMO.

Is it all just a money grab that has nothing to do with treating cancer?  I tend to think so at my most rational, thoughtful moments. But I cannot get out from under the anxiety and the fear of going through what I already went through even though the losses already happened and are permanent.

I am not sure what to do.  I will go back in three months. But after that…all bets are off. Just test my TSH and leave me alone. That’s the road I would prefer to take.