CT scan showing 'cysts' - any advice?

[LilyG]

Hi,

We have just had my husband's 1st CT scan since he has started chemotherapy (for those that don't know Trevor was diagnosed with Kidney Cancer almost 3 years ago, they removed his kidney along with the 18cm tumour but in April this year his pancreas had signs of 'pancreatitis' and 'cyst-like masses'...we were given the all-clear twice, then the xx told us otherwise, went through a further 6 weeks of tests and an operation that could not go ahead as the tumour had by now spread and eventually we found out that he had two tumours which weren't secondaries but new primaries and locally advanced pancreatic [1 tumour was 2cmx1cm and stable, the other was about 2cm in May, 4cmx3cm in June, 6cmx4cm in July and although the Consultant wouldn't say, he wouldn't deny it when I suggested that it seemed to be growing at a rate of 50% per month so let's say it was about 9cmx5cm when he started chemo]...there is a reason for this preamble).

Trevor's markers have always been low but the tumour sizable. He is tolerating Gemcap reasonably well and has some days that are better than others. Yesterday we were told that the results of the CT scan showed that the tumour had not grown but that there were 3 'cysts' behind the pancreas. The Doctor said that these were fluid-filled and could be as a result of pancreatitis (but T has had no symptoms and they are outside his pancreas...) or the chemotherapy or pseudocysts. The scan will be taken to the MDT but my fear is that all of this started out as 'pancreatitis' or 'cysts'.

Thanks,

L

[Juliana]

Hi Lily,

Sounds like you and Trevor have been put through the mill this past year.

The rate of growth with the pancreatic tumor sounds frightening, however the good news is it had not grown since the chemo was started, so it must be having some effect atleast. It is difficult to say what the new cysts are, and what exactly are they attached to if not on the pancreas itself. I know it's difficult for them to determine from a scan, but it doesn't leave the patient with much peice of mind when information is vague and non-commital.

My cancerous tumor was always regarded as a 'cyst' up until the moment it was removed, but by that time it was too late and had spread to my lymph glands. 2 3/4 years of 'it's just a cyst' - leaves a nasty taste in the mouth let me tell you.

Personally, I would treat them as suspect cancer growths until PROOVED otherwise. How they will proove this I don't know, other than monitor them via CT scan. Could they do an Endoscopy to view them is one question I suppose you could ask, the other possibility is a Laparoscopy - but this is more risky and they may not think it viable.

Atleast Trevor is not getting any new symptoms/pain from the new cysts, that's one thing atleast.

Keep us updated x

Juliana

[Nardobd]

Hi Lily

I think Juliana's experience shows us all that we can't be complacent and knowing how I worry about Ted (my hubby), I'm sure you're beside yourself right now.

There is a way in which they can tell what these cysts are - a PET scan. CT and PET are different because CT gives a picture of the soft tissue but PET scans are used to determine what's happening at a molecular level. The NHS aren't usually very keen to do PET scans because they are very expensive but I think with Trevor's history you should probably ask the consultant for one (by which I mean insist!).

Even if the MDT think that the cysts aren't anything to worry about, your peace of mind is important. Trevor can't concentrate on getting well and you can't concentrate on supporting him if, at the back of your minds, there's a "what if...". Personally, I think even the worst news possible is better than not knowing.

Good luck and keep us up to date with what's happening.

Kind regards

Nicki

[LilyG]

Thanks - we had the same thing in April...the same hospital said that there was 'evidence of pancreatitis' and Trevor had 2 endoscopies with biopsies and they looked directly at the tumours and he was given the all clear before they sent the scans to the xx. Before the xx, they did say at xx that the 2 masses that they could see were 'cyst-like' so I am well aware that my caution may result in some not so good news and I am not sure whether to push now or leave it until after Xmas. The thing that is bl**dy annoying is that Trevor was having 6-monthly scans anyway, so goodness knows what else they would have had to do to catch it quickly. XX said in hindsight there were anomalies in October evident but it is only with the benefit of viewing the April scan that the changes are clearly visible...XX did the 'routine' tests on 2 tumours (one being 4cm x 3cm) and it still came back clear and it was only the biopsy from the actual inoperable tumour that proved what it was but even if with evidence of a tumour(s) on the pancreas there was still 7 weeks to surgery and what would have been 12-weeks if we had gone NHS. Apologies for the rant but good for you Juliana that you seem to be beating the statistics.

L

[Juliana]

Hi Lily,

Trust me....the 'statistics' are biting at my heels on a daily basis. The cancer has already returned and spread to both my lungs, but so far - my quality of life has not been effected that much.

I'm always looking for a ways to improve my chances....it's tiring but I feel I need to do something other than rely on the orthodox route that unfortunately for me is not going to cure things.

All I can say is keep on to them, double check everything and get second opinions. If they are dragging their heels - or the wait for surgery seems unreasonable under the circumstances maybe contact PALS for advice: http://www.pals.nhs.uk/

Take care,

Juliana