Is it Time to Find a New Oncologist?

As I type this tonight–about two months from my one-year No Evidence of Disease remission anniversary–I find the thought almost comical: Why would I switch oncologists now? After all, I’ve already endured 12 rounds of chemo on my current doctor’s watch, put up with his idiosyncratic bedside manner, his maddening lack of clarity and availability, some mistakes in treatment and his Groundhog Day-like inability to remember the details of my case between visits.

After reading that last sentence, perhaps you’re wondering why I stuck with him in the first place. Well, the answer is largely because the hospital was conveniently located minutes from my house and my oncologist was supposed to be administering chemotherapy according to the marching orders of a highly respected lymphoma doctor at the University of Chicago who provided my second opinion and course of treatment. That doctor assured me that chemotherapy is chemotherapy no matter where you get it, and it seemed a lot smarter to get it five minutes from my house than to brave rush hour traffic to-and-from Hyde Park once a week for chemo sessions or checkups.

But I’m assuming that while the ABVD chemotherapy poisons are the same everywhere, the level of care from your oncologist can differ greatly from practice to practice. And in that department, my oncologist could surely use some…practice.

So what was the straw that broke the camel’s back? It happened earlier today. My wife and I had recently been chatting about how I am due for another PET or CT scan, as my oncologist had said he wanted me to get one every three months for the first year. For each of these scans, we have had to call his office to see if he still wanted me to get one and had to connect with him in order to get the scan ordered. (Is this normal? Or is the office supposed to call you to schedule your scans? I have no frame of reference for this beyond my dentist and my eye doctor, who always call or send a postcard when I’m due for some maintenance. Fellow cancer patients and caregivers: what has been your experience?)

Completing these scans is always a stressful experience for me–both because I hate getting stuck with needles and also because I always have a fear in the back of my mind that the scan won’t be clear and I’ll need more chemo or radiation or some other form of cancer-fighting torture. At the appointments to get the results of my three-month and six-month scans, it was clear that my oncologist had not even looked at the results before entering the room, which left my wife and I quivering in fear as he read them over in our presence. After the first scan, there was some ambiguity in my throat that required me to go back to the ENT who originally diagnosed my cancer. But my doc hadn’t seen this before I was in the room, so we got to watch him process it and ask me questions about my general health before he told us what was going on. It was terrible.

After my six-month scan, he reacted incredibly positively to the completely clear scan as he read it for the first time in front of us…because he thought this was my first scan after remission. When I complained about having to drink a disgusting contrast liquid before the scan, he told me that they didn’t need an abdominal scan because my lymphoma was in my neck, so I wouldn’t have to do that for any future scans. That’s nice, but we still got charged for the unnecessary abdominal scan that was clearly ordered because he wasn’t paying enough attention and didn’t bother to examine the details of my case.

But the back-breaking straw came today, when my wife once again called his office to find out if he still wanted me to get a nine-month scan and to get it scheduled. The office left a voicemail saying that we were supposed to have come back for a checkup after two months (which was never suggested to us on our last visit and had not previously been the protocol) and that my doc wanted me to get a scan of my chest, abdomen and pelvis.

Even casual readers of my cancer adventure will remember that my cancer presented as an enlarged lymph node in my neck. SO WHY IS HE NOW REQUESTING A SCAN OF EVERY LOCATION EXCEPT THE PLACE WHERE THE CANCER WAS?

I’m sorry. I’ll calm down. And turn off caps lock.

A quick scan of his waiting room tells me that he sees a lot of patients and that some of his patients probably have lymphoma. But I also know that I am probably one of the only ones who is under 35 and therefore perhaps a little more memorable than a lot of the older cancer patients he sees. But even if he couldn’t exactly remember the details of my case, shouldn’t he look at my chart a bit more carefully before ordering incredibly expensive scans that are meant to ensure that the cancer hasn’t returned?

So this is why I kind of want a new oncologist now. But I’m not sure that’s even an option for me. Do oncologists take on patients who are in remission and just come in for tuneup scans?

In the 17 months since Lumpy first entered my life, I have tried to be a resource for anyone who is dealing with similar health issues. I’ve tried to meticulously catalog my experiences in the hopes that it could bring comfort or knowledge or solidarity to others who find themselves fighting their own Lumpy.

But tonight I find myself somewhat frustrated and in need of advice. If you are reading this and have any experience with professional medicine or cancer treatment, I would love your feedback. Leave a comment or send me a message (roundingthirty at gmail dot com), and I would be very grateful for your insights.

Despite my frustration, I remain in good health–although perhaps gaining a bit too much pregnancy weight in solidarity with my pregnant wife–and richly blessed beyond measure. My oncologist and his staff did take good care of me throughout my treatment, but this latest development just feels like a logical breaking point, if it’s possible to switch to another doctor. Regardless of any of this, I feel so sure that all of the experiences that came from my cancer battle were oddly dressed blessings from God that fit perfectly into His plan and have prepared me for new and exciting challenges to come. Thank you for reading this and for all of your support!

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7 thoughts on “Is it Time to Find a New Oncologist?

  1. nobody June 15, 2016 / 10:56 pm

    It is NEVER too late to switch oncologists, even if you’re in remission. This is just a lack of care on his part. I would certainly look around to see what’s available. I’m so sorry you’re going through this unnecessary stress and wish you all of the luck in the world.

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  2. Katie June 16, 2016 / 7:14 am

    If you had a good experience with the UofC doctor why don’t you go there. The appointments aren’t as frequent now and it may be worth an occasional drive to feel like you are getting good care. Plus she isn’t entirely unfamiliar with your case.

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  3. laceypaulsen June 16, 2016 / 7:19 am

    Definitely time to get a new oncologist! What a terrible experience; you definitely don’t need any additional, unneeded stress in times when you’re already naturally going to have anxiety about results, etc. and unfortunately, as you already know, you’re going to continue to have an ongoing relationship as you return for annual scans. Plus, you’re paying this guy tons of money that he clearly isn’t earning. Why give him more business? If he’s not even aware of your case, it seems like you don’t have much to lose starting over with someone else.

    Can you go back to the second opinion oncologist you went to? Now that your appointments are fewer and farther between (yay!) the drive might not matter as much? Sorry to hear you’re dealing with all of this on top of the normal crappiness that comes with having had cancer. Glad you have a new baby to look forward to but my opinion is you should definitely switch oncologists to cut out this extra frustration!

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  4. Christi June 16, 2016 / 11:53 am

    Matt! Switch it up and follow your prayerful heart on this. I’m having a cancer scare and I cannot tell you how grateful I am for your writing! My first CT with contrast felt familiar- bc of you. Headed for an MRI or laparoscopy and a colonoscopy next week lest it happens sooner, etc! Prayers all around- love to you guys!

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  5. Johanna June 19, 2016 / 5:18 am

    Personally I haven’t had a PET/CT scan since the one that declared me cancer free. I finally plucked up the courage to ask my oncologist about this at my 6 month check up as from my understanding, I needed scans to actually know that I was okay. She told me that because ABVD is actually quite a successful treatment, they find it’d do more harm than good to have PET scans every 3 months as its just putting me through unnecessary radiation which could in turn cause another cancer. They will scan be if I present any odd symptoms though; like over tiredness, dramatic weight loss, and of course if I develop a dreaded lump. But so long as I don’t have any symptoms, I don’t have to go for scans. I guess it also saves them money too, as over in the UK healthcare if free at point of use (funded through taxes) over here as opposed to having to pay for your own healthcare in the US. That may be a reason why you get scans and I don’t, but also like I said your oncologist could just be putting you through unnecessary scans that are costing YOU money and could actually do more harm than good.

    I’d have a work with another oncologist. Possibly the one you got a second opinion from, if you can. He seems to be a lot better than that idiot. — I’m lucky enough that my doctor does remember me. But then again I am an 18 year old patient in a sea of 80 year olds, not that that seems to have helped your doctor. However my treatment plan was arranged by another hospital that specialise in child and young adult cancer cases, so like yours she more just follows orders than she makes them in my case.

    Liked by 1 person

  6. Melissa July 20, 2016 / 11:37 pm

    I’d write the Dr. a letter explaining my concerns about your Dr/patient relationship (or just print out and mail your blog!). I often learn a lot from kindly confronting people who confuse me! If that doesn’t make you feel secure, for sure move on. Regardless, I just wanted you to know I’ll be praying tonight for you and your fight to be cancer-free–

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