“Cancer” (or not): Hearing the News

It’s an extraordinary experience to be told, quite unexpectedly, that you have cancer – or in my case, maybe not. (Is a GIST cancer? That depends on who you speak to). I’ve learned a lot about the condition over the last eight months, including the terminology.

Gist - liferaft
Source – Life raft group ( https://liferaftgroup.org/gist-101/ )

It all began last July, when out of the blue I was struck by severe abdominal pain. Initially, this was diagnosed as diverticulitis (a bowel problem), and was prescribed antibiotics. This eased but did not end the pain, which revived again after I came off the medication.  After a few more visits to the GP, I was referred to a bowel specialist at Royal Surrey County Hospital for further examination by CT scan. He unambiguously confirmed the GP’s diagnosis, but “to confirm” that view, he scheduled the CT scan that had been requested. Then, things moved remarkably quickly.

The scan was done soon after, on a Wednesday afternoon. The next morning (Thursday), I had a letter from RSCH in the post. To get to me that quickly, the letter must have been posted almost immediately after the scan was completed.  The message was that the consultant wanted to see me, and had made an appointment to do so not in his own rooms at Royal Surrey, but at my local hospital in Haslemere, for the following Monday – just 3 working days after the scan.

That set off warning bells, especially as I had earlier heard my GP say that he could get the initial hospital appointment “under the 2 – week rule”, which I then discovered is applicable when there is any suspicion of cancer. I spent that weekend researching what I could learn about bowel cancer, and whether that could indeed be the problem affecting me. Instead, on meeting the consultant, I was quickly assured that there was nothing at all wrong with my bowels – but I did have a “GIST – or Gastrointestinal Stromal Tumour“.  This term was completely new to me, and initially, I did not pick up to much detail except for the ominous word, “tumour”. He showed me an image on his computer of the CT scan, noted that this was “large – larger than the liver, which is a large organ”, and said he would be discussing this with the MDT (multidisciplinary team) at RSCH, which would be meeting the next day (Tuesday) for referral to the stomach team. I was also told that the stomach clinic was usually held on a Wednesday, and that with luck, I might be squeezed into that the next day. Before leaving at the end of the consultation, I asked him to repeat the name of the condition (just to be sure), and I’d not misheard: GIST – gastrointestinal stromal TUMOUR, I walked home with my head spinning around thoughts of “cancer”, and broke the news to my partner (now husband) Raymond – and did a great deal of on-line research into the condition.

I did not in the end get into the regular Wednesday stomach outpatients’ clinic, but Instead, I had a phone call on the Thursday from a specialist nurse, to tell me that the stomach consultant wanted to see me outside his normal clinic on the following day, Friday.

So, together with Raymond, I attended  a meeting with the consultant and specialist nurse, to learn more. I’ll go into the details of this condition later, but I noted at the time that just like the bowel man earlier, he was careful not to refer to the tumour as “cancer”, but simply as a “tumour”. I asked him about the distinction. He insisted that GIST is not “cancer”, because it is “not necessarily malignant”. I replied that all the information on-line is on the cancer websites (I did not say, but knew, that the NHS treatment guidelines described it in the first few lines as a rare cancer). He conceded that it’s largely a mater of semantics, depending on how one chooses to define the broader category.  Others I have since spoken to or corresponded with in a GIST support group are emphatic: it is a specialist form of cancer, because it is potentially malignant. What is not disputed, is that it is not a carcinoma, which groups together most of the common cancers, but a sarcoma, which is much more rare. Most importantly for treatment, he confirmed what I had learned on – line. GIST does not respond to the usual cancer treatments of either chemotherapy or radiation. In stead, the only treatment is surgical removal, IF the tumour is not too large. For large tumours, which easily included mine, the first line of treatment is by a modern wonder drug (Imatinib), to shrink the tumour  until it is small enough for surgery to be viable.

But actually getting on this medication is not nearly as simple as seeing a GP, getting a prescription, taking it to a convenient pharmacy, and waiting for it to be handed over on the spot. After the initial diagnosis, there followed in quick succession further tests (an endoscopy with fine needle biopsy), a PET scan, and after confirmation of the nature and size of the thing (described in technical language as “massive”), a referral to a specialist stomach oncologist. He in turn listened to my description of the history and current symptoms, conducted his own physical  examinations – and pronounced that he was ready “to begin the paperwork”. Some weeks later, came a further appointment with yet another specialist nurse who carefully discussed with me the possible side – effects (some of which are nasty indeed), gave me precise instructions on how to take the stuff, and handed over an impressive collection of documents, information leaflets and cards, that made it clear that I now had V.I.P. status (“Very Important Patient”) at Royal Surrey, with assorted special privileges. Only then did she track down a doctor to write the prescription, She then took that direct to the specialist pharmacy St Luke’s, and left me to wait a substantial time for the medication.  By this time, I was beginning to wonder what awful side-effects could i expect once I started taking it? Would I turn green? Would I explode?

In fact, it turned out to be no big deal, There are some minor effects, but these are not important enough to impact my lifestyle in any significant way, or to warrant discussion here. A further PET scan one month into treatment, and a CT scan at the 3 month mark confirmed that there has indeed been good shrinkage. 3 months more, and last week I had one more CT scan, the crucial one at the end of the initially prescribed 6 month treatment cycle. It’s been a wild ride, but in fact I count myself 3 times fortunate, in the context of cancer.

  1. Unlike the more familiar cancers, I’m spared the hassle and troublesome side effects of conventional chemotherapy or radiation
  2. While I will at some stage have to go through surgery and all that entails, the massive size of my tumour has forced a delay, giving me time for mental adjustment to the idea.
  3. While on GIST, I’ve been spared the worst of the difficult side- effects that trouble so many of my fellow people with GIST.

As my doctor kept reminding me at my last appointment – I’m doing well, the medication is working, and my system is coping. For now, that’s all I need to know. Later (Monday morning), I’ll be seeing my oncologist, and should hear the result of last week’s scan. I will then know what happens next. Do I continue with a further cycle of Imatinib for further reduction – or will they start to prepare for surgery?

I’ll report back, after hearing the verdict.

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