Thursday, October 7, 2010

Doom and Gloom --- The Pathology Report*


Histopathological image of papillary carcinoma of the thyroid gland obtained by a total thyroidectomy


* This post was written giving my reaction to the information at the time of receipt, but the pathology report has since been revised more positively, in case you feel alarmed. I have been told by the radiation oncologist that the pathology conclusions of the initial report are changed later in about 30% of cases.

Based on a biopsy which showed the presence of papillary cancer, the large size of the tumour, according to ultrasound studies, and of course my "age" my whole thyroid was removed quite precipitously. But most information is gained from the more complete pathology report for which you have to wait around a week to ten days.

As I said before, there are four types of thyroid cancer, with papillary being the most common and also being described as well differentiated which basically means slow growing and therefore mostly very curable.

One morning, very early, I was awoken from sleep by a telephone call from my primary care physician, whom I have had for 25 years now. The pathology report was available and it showed that there were two types of cancer. The second one was undifferentiated cells which means faster growing and therefore more aggressive and but he actually used the word anaplastic. Now I had read about all four types of thyroid cancer, but not the other three in detail so we had a reasonably unemotional conversation and he rang off.

Of course I was immediately on the computer, out on the internet searching. Imagine my total shock to discover that this very rare type of thyroid cancer is basically incurable, it often arises in conjunction with a more well differentiated cancer like papillary and most patients were dead by the end of the first year, the rest after two years.

I waited till my doctor's office opened and phoned. It was Friday and I knew he was at meetings that day, but hoped to get copy of the report from the staff. They were unable to find my chart so I made an appointment for the following Monday to see him.

The whole weekend I stewed about the situation. In many cases of anaplastic thyroid cancer, it is discovered first as a lump on the throat and they are often inoperable since, being so aggressive, they have already invaded the trachea and nearby areas.

Well the surgery was over in my case. The offending organ was gone. Was there a slim chance that the disease had been caught early enough and it hadn't had a chance to spread? The surgeon had said that he saw no obvious spread but it only needs a few cells to escape to get started elsewhere. Frankly the pathology report was very bad news indeed.

It turned out that my doctor had not seen the report when he telephoned me from his car, but he had been contacted by the surgeon who had read it and gave him a verbal report, telling him to inform me. He was the one who had used the word anaplastic to my doctor, while the report mentioned only areas of undifferentiated tissue. But as my doctor explained, it was six of one and half a dozen of the other, really, whether they used the word anaplastic or not. I already had a referral to a head and neck oncologist at the BC Cancer Agency and my doctor gave me a referral to the Thyroid Clinic at the major teaching hospital where I had had the thyroidectomy and the number of people involved in my treatment was now about increase.

There was a cancellation at the Thyroid Clinic so I went there within a few days, before I went to the BCCA. I was interviewed at length by a resident in Endocrinology about the history of my thyroid illness and he listened carefully but took no notes. We then met with the Endocrinologist and he asked the resident to present the case. I sat there and listened in amazement as he recounted completely wrong information. Did I correct him and make him look foolish? Did I let grossly inaccurate statements stand? I did correct one very important fact and just let the rest slide, hoping it wouldn't really matter in the long run. But I was really staggered by this fellow's confusion.

The Endocrinologist asked for the pathology report to be reviewed, but since the tumour was considered mostly papillary he ordered Radioactive Iodine treatment as the next step. But I said it had to wait till after a two week visit by my daughter and her family, which was imminent. In the meantime I would see the oncologist at BCCA and hope that all these fellows were on the same page.


Part one, Part two, Part three, Part four in the saga.



4 comments:

Carver said...

Hi JMB,

I am so glad that the pathology report has been revised to be more positive. I can relate to so much of this. I have had people on my "team" give me contradictory and inaccurate information at times and I've also had that debate about what to say. I usually don't say much but I always get copies of my pathology and radiology reports. Take care, Carver

Rositta said...

Almost exactly one year ago my DIL was diagnosed with thyroid cancer. She had the surgery and not all of the cancer was removed. It had wrapped itself around the vocal cords apparently. She waited until March of this year for the radioactive iodine treatment and is apparently now cancer free. I questioned why she had to wait such a long time for this treatment (Calgary) but didn't really get a good answer from them. I am glad that things worked out for you and can only imagine the horror of having inaccurate information. Take care...ciao

lgsquirrel said...

I think you have been very brave. I am so sorry that you had to go through this with the misdiagnosis on the cancer type and the lapses in your medical team.

Welshcakes Limoncello said...

Oh, jmb, how alarming for you! I was relieved to read that the report has been revised more positively. What happens now? Thinking of you in Sicily. xx