Concerned about the need for a PET scan

[Dididi]

I have recently been diagnosed with a cancer of the bowel. Surgery for bowel resection was to have been done 3 days ago but was postponed the day before. A biopsy showed fairly low marker for bowel cancer but high for ‘something else’. The ‘something else’ as far as I have been told, is unknown. I’m now booked to have a PET in just over a week’s time. I’m guessing this will show where there is another cancer. I’m feeling devastated that this has occurred. I adjusted to the bowel cancer diagnosis but am absolutely terrified about further findings. Has anyone else here been through this set of circumstances and what transpired thereafter? Thank you to everyone who so kindly shares their situation. 

[LindaG]

Hi Dididi, my cancer was different to yours but a known the anxiety of waiting for the PET scan. At least you will know what you are dealing with from this scan. All I can advise is to stay close to your loved ones and don’t be afraid to ask for emotional help when you need it. Praying for you 🙏💕 LindaG 

[Dididi]

LindaG thank you for your prayers. I’m so thankful for the thoroughness of the doctors involved at this stage.

[Skiddles]

Hi,

Best thing is to ask the doc dealing with your case what they mean by 'something else' if you are unsure. That may alleviate some of your concerns and worry or not. When they said 'something else', did they make it clear they meant a cancer elsewhere or, literally, something else other than cancer?

If it is not cancer, they will perhaps take a watch and wait approach, but a PET scan will give a head to toe picture of what's happening and, if there is cancer anywhere, bowel or otherwise, it should pick it up.

When having a CT scan as part of an 18 month review for a small cancer I had removed from my saliva duct, it was noticed that I had a dilated pancreatic duct (which they thought was probably caused by a tumour) and an anomaly on my left lung. After a PET, it showed no cancer on the pancreas. I then had an endoscopic ultrasound (they had a good look around with a camera down my throat) and still found nothing. Told me to come back in 3-6 months and we'll do it again.

So it wasn't pancreatic cancer, but 'something else'. (Unfortunately, the PET also showed that the anomaly on my lung was probably cancer and a biopsy confirmed it. (The prognosis is good.))

So, it may be better than you're thinking rather than worse, but the only way to find out is to keep the lines of communication open with the medicos and ask plenty of questions. They are human, just like you and I, not Gods, and you have every right to know what they're thinking. Keep a piece of paper handy and scribble down anything you think of so you can be sure to ask when next you see your medicos. (Some of them don't mind your recording your appointments so you don't forget anything, but you can also take notes.)

Good luck with it all and hopefully, like my pancreas, it turns out to be 'something else'.

[sch]

Hi @Dididi 

How did the additional scan  for the "something else" go?

-s

[Skiddles]

From my last comment:

'I then had an endoscopic ultrasound (they had a good look around with a camera down my throat) and still found nothing. Told me to come back in 3-6 months and we'll do it again.'

They thought it was a tiny cancer hiding behind my pancreas. It wasn't. They found nothing. My GP seems to think that the dilated pancreatic duct (and pancreas) was a result of something that's happened, not something that's about to. (Possible a stone being passed.)

So something else was nothing else. At least nothing to do with cancer. I will be having another endoscopic ultrasound for them to recheck in a few months. In other words, what I'm saying is, get clear with your medicos what they think the 'something else' is in YOUR case. You may be worried for no reason. Or for the wrong ones.

If they were going to operate for cancer but cancelled because they decided there were not enough markers, I would be taking that as a positive for the moment. Have you a PET scan lined up? Have they said they are intending to 'watch and wait' (another CT in 3-6 months)?

Talk to the docs, make sure you know what they are thinking and their plan of action, ask about that PET if it is not already booked (are they intending to do one?) and then you'll know where you stand. Keep asking questions and try to keep positive.

Remember, you are part of the team that is working on this rather than separate from it. It should never be you and the doctors. You are all in it together. Make sure you know what they're thinking and they you. 😉

[Dididi]

sch - thank you for checking on me. The PET scan was done a bit over two weeks ago. Two days ago I phoned to enquire about the results because I had not been advised. I was very briefly informed that there is a cyst, probably benign, that had required to be looked at but that the bowel surgery will likely go ahead. This morning I received a voice message to the effect that the bowel surgery will go ahead in about a week and a half. The message indicated that I should phone the hospital early next week to confirm the date but not today because meetings would be taking place so it wouldn’t be very convenient. I’m hoping that when I phone on Monday I will be given a bit more information but I’m feeling quite optimistic at the moment. Still don’t know what the unknown ‘marker’ from the biopsy is but will ask about that on Monday. 

[Dididi]

Skiddles - thanks for the insights you have shared. I’m glad your scans have been able to alleviate some of your concerns. I feel that I’m in a similar situation although the bowel cancer is still there. The scans I have had did not show any further cancer. At colonoscopy the biopsies indicated bowel cancer and a high marker not usually associated with bowel cancer. One of the doctors I spoke with mentioned that it might be pancreas or liver so I have been extremely worried. As far as I have been able to find to date neither of these have been found. There was concern that an area in the oesophagus was under investigation but is now thought to be a cyst, probably benign. I will speak to the hospital on Monday but that may not be to a doctor! The bowel surgery is likely to go ahead during the week after next. I will just be glad to get it done. 

[Skiddles]

Not knowing can be mind-twisting. I know and understand! The wait between scans/tests and when you see the medicos for the results is the worst; bad sleep, anxiety, rushes of adrenaline. At least that has been my experience. Try not to let the mind go wild and try and stick with the facts you know. What you don't know, you don't know!

Stay positive, trying and ignore the 'demons' and good luck with it. You want to be focusing your energy on getting rid of the cancer and getting better right now rather than negative thoughts about what you don't know. Meditation can be helpful, as can deep breathing and relaxation. Whatever calms you, do it. If you are comfortable doing exercise, get into it. It will make it easier to sleep and the fitter you are when you go in for the operation, the better your chances and the quicker the healing post-op.

Wishing you all the best. 😉

[Dididi]

I’ve had the hemicolectomy and so fortunate that it was done laparoscopically. Hospital time was only 4 days so I’m happy to be home again. The cancer was also found in one lymph node so I will see an oncologist in a few weeks to discuss further treatment. At the moment I’m just very grateful to be recovering well.