Advice from an Oncologist After a Cancer Diagnosis

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When I came across an article with advice written by an oncologist for patients, I thought about his advice carefully.

Illustration of a woman with curly brown hair.

I’ve always been a voracious reader, and since being diagnosed with follicular lymphoma, I’ve found myself reading more articles about cancer.So, an article from an oncologist about the advice he gave to his mother after she was diagnosed with cancer caught my eye.

I have a few things to say about his advice. In one way, I wish I had seen this before I was diagnosed. In another way, I’m glad I hadn’t because I don’t know that I’d have been able to deal with some of it.

His first piece of advice was to get a formal diagnosis because cancer is often diagnosed via tests looking for something else entirely, and that, according to an article he referenced, more than 4 out of 5 people who were referred for biopsies don’t actually have cancer. In a way, this is what happened to me — my doctor ordered a CT scan, looking for blood clots as a possible explanation for my high heart rate, and found lymphoma instead. This was confirmed via a biopsy taken looking for a different type of cancer the day before. As far as his advice goes, however, I’d much rather get a biopsy that rules out cancer than skip the biopsy because cancer is statistically unlikely. It scares me that people might skip the biopsy because cancer is relatively unlikely.

Next, he suggested finding out how urgent the need for treatment is via additional tests. I understand this one, and yet, with all the issues that impact health care in this country, it simply may not be possible. I know people who waited days, weeks, even months to get additional testing, during which time their cancer progressed to a point where treatment was less effective. Not everyone has the knowledge, the access to specialists, or the insurance (or money) to seek additional tests that may not impact treatment anyway.

His third suggestion was to choose your online sources carefully. I’m all for this one. The internet is rife with sites that claim to be scientifically based that aren’t. Some are based on anecdotal reports, some on misinformation; some are outright scams, using people’s fear to get their money. Be careful in what sources you trust. If you’re wondering, major medical centers, universities, and non-profit organizations devoted to cancer research are good places to start. 

Take notes is his next item. This is another one I’m all for; I took a friend to my first oncology appointment, and I also recorded it on my phone. I’ve never gone back and listened to the recording.But even after nearly four years after, I keep it anyway, just in case. In case of what, I’m not sure, but just in case.

Then he suggested a second opinion from another oncologist, something that even he admitted might be a problem. Different types of cancer need to be treated with different urgency, and again, financial and insurance issues can limit access to second opinions. The same goes for his next suggestion: to get a second opinion from a pathologist. For an oncologist, finding a second pathologist would, I think, be reasonably simple.For those of us not in medical professions, it would be difficult.Even more than a second opinion from an oncologist, it’sunlikely to be covered by insurance.

When I was first diagnosed, I went looking for questions I should ask my oncologist, and steps I should take. If I’d found this article then, it’s likely it would have added significantly to my stress level. Some of these, especially the second opinions, I’d have been almost incapable of doing, and not just for financial reasons; mentally and emotionally, I don’t know that I’d have been able to do it at all. And yet, when a friend’s husband was diagnosed with cancer, he did all these things because that’s the way he thinks.

That’s the problem with absolutes like this article, which presents everything as “must do” items. For the author, these were things he had to do — and more, they were things he knew how to do, things he could easily access. There are people who are going to agree with him and follow his advice completely. There are other people who will agree, but not be able to do all these things. For them, seeing this list presented by an oncologist could cause significant stress, especially if their own medical team makes different recommendations.

Take all advice — even from professionals — with a grain of salt. Everyone’s situation is different, and what is necessary for one person may be unnecessary, or even impossible, for others. Seek expert advice but question it. And above all, do whatever works for you.

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