Follow up care.

[Leon1978]

Can someone please help, went for first check up after operation and told they would not do ct scan as I look fine. Can some one tell me what follow up care I should get for the first 5 years after junction cancer

[haward]

Morning Leon

Not doing a scan is fairly normal. They say that if the cancer comes back you'll have symptoms (even if you didn't have them first time). Some teams will do an endoscopy on an annual basis but most don't.

One thing you might consider asking for is a blood test to check for iron, zinc, Vit D and Vit B12 levels.

Haward

[sms80]

Like Howard, I have had no scans just 6 monthly check ups, now coming up to 5 years. I found that strange at first, especially when my husband, who had bowel cancer, received annual CTC scans. I weight is checked and a quick check of tummy and around neck. Annual blood tests are also done and one stool sample was checked after about 18 months. Think positive!

[brucemillar]

I understand the the entire after this surgery is now open to individual/ local authority preferences rather than a set procedure?

Scanxiety is a known trauma that does none of us any favours. I was scanned regularly as I had recurring issues caused by my surgically inflicted hypoglycemia and collapse. I did not like it one bit. Each scan drives an irrational fear that they will find the cancer has returned. In my last scan my fears were justified when I was called back for a one to one visit and told "it is back and inoperable" My poor wife was almost destroyed. For the first time since it all began she wilted. I never, ever wish to witness her suffer like that again and resolved then never to have her with me at thee meetings whatever the outcome.

It took several weeks and further PET scans and an Ultrasonic Endoscopy to confirm that 'recurrence' was a false alarm. That was several weeks of hell and being moved to Palliative Care.

As Haward so rightly says, we would know. I looked well and felt well. When I was first diagnosed I looked ill and felt ill.

I opt now for no scans, but do have six monthly blood tests and a visit with my Oncologist.

[Danko]

Yes, I was surprised that my only post op scan was immediately after the op to check nothing nasty was still lingering. I am now 5 years post op and have just had six monthly checks which from now on will be annual. As mentioned above, my oncologist just feels certain areas and asks me how I feel. They don't even weigh me now. What is reassuring is that I am seen by the surgeon who gave me the bad news initially and carried out my op. There is a continuity which does provide comfort. I agree with Bruce's point about scanxiety. What awful trauma to go through.

Cheers

Martin

[Hidden]

The trend is to tailor the follow-ups for the individual patient and according to whether you are having difficulty with pain, diet, digestion or whatever, rather than doing things on a standard basis. But this does vary as well from hospital to hospital. Feasibly, there sometimes might be a trial in place that dictates that there might be a scan. So I think you are probably not going to find a direct answer to your question about a standard uniform procedure.

There is a logic in not doing scans automatically. Feeling well is a good sign of progress.