Result confusion

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I was treated for squamous cell oesophagal cancer. I had 4 rounds of cisplatin and 5FU, two of which were alongside 25 sessions of radiotherapy. I then waited 3 months for the results.

Saw the oncologist yesterday and she advised that the tumour has 'significantly reduced'. I queried what this meant and she said this is what the report says and that in medical terms this a good result. She previously showed me the scans but didn't have them available to show me yesterday which I thought was peculiar. She gave me no other information and couldnt understand why I asked whether it was half the original size, a quarter of the size or what. She said that she didn't know if the residual lump contained active cancer cells, inactive cancer cells or was dead scar tissue, therefore they wouldn't treat the remaining lump. Anybody know why they don't test residual lumps? It seems a little late to wait for the lump to grow before they do anything. The only symptom I had of my cancer was the slow closure of my throat. My throat is still closed now and I feed through a RIG so I will not see any symptoms of a decline in my health which is worrying.

I have read on other threads about the lack of aftercare and I really feel I've been left high and dry after all the hard work. Please don't get me wrong, I am happy it has 'significantly reduced' but now I have even more questions.

As for opening my throat, they can't do a stent as it would be too high and cause huge discomfort. But dilation is a possibility. Has anyone any experience of dilation and do they work?

My heads a bit all over the place so sorry for the waffle.

Thanks

Mel

sistermoon over 1 year ago

Hi Mellabs

Hello Mel, I'm sorry to hear that you feel that your appointment has left you with unanswered questions. My advice would be to contact your CNS and tell her your concerns and questions. I am sure that she will liaise with your Consultant and will be able to reassure you. Another option is to contact the helpline and speak to a nurse - this is the link to contact https://www.macmillan.org.uk/about-us/contact-us

I hope you get some answers soon.

A x

jayceeh5 over 1 year ago

Hi Mel

My husband had an oesophagectomy in 2009 and then in late 2021 he developed a stricture where the scar tissue had thickened (in part due to medication he was taking - the consultant discovered this after the second lot of biopsies) and he had problems swallowing.

He had to have dilations every six weeks and we blended his food (exactly what I was having just blitzed so the nutrition was the same), the dilations definitely made a difference and then when he stopped taking one of his tablets things got much better and now he eats normally again.

I know dilations don’t work as well for everyone but, given that you can’t have a stent, I think it would be worth a try as long as the radio treatment hasn’t left too much scarring.

I would have dozens of questions after what you were told, did you see your usual oncologist or was it someone different? The vagueness of the answers isn’t helpful so you need to go back to the team and ask for more clarity. It’s really good that the tumour has reduced in size but you need to know what happens next and what your options are.

I hope you get the support you need and you didn’t waffle at all!

J x

Mellabs over 1 year ago in reply to jayceeh5

Thank you J.

I've had a busy few days.

I have met with the surgical team and this would be a complete last resort as they advised, if the remaining cells are cancerous and I opted for surgery it would be a full oesophageal removal as well as voice box and upper gullet. I'd be left with a stoma and that's if I pulled through the surgery. This came as a shock to me as I didn't realise it was up to my voicebox.

Then I had a call from my CNS confirming that they can do a stent. Its a biliary stent as opposed to a normal oesophagal stent, but for my case this should work. I am on the waiting list for this referral now. Should the stent be successful then at least I can have a cup of tea.

As for the remaining tumour, my oncologist has agreed to a PET Scan in 3 months as opposed to a CT which will hopefully yield some results.

I am waiting to speak to gastroenterology about the dilation but wonder if this could be tried at the same time as the stent as I'll be unconscious.

It shows that sometimes it pays to make waves and ask lots of questions.

Take care

Mel

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