First scan result

FormerMember over 5 years ago

1 reply
36 subscribers
1845 views

Hi everyone

Thank you for all your messages on my last post when I had been advised the tumour had gone. (By specialist nurse over the phone 9 days ahead of appointment with Oncologist)

I attended the appointment yesterday and it went ok. The Oncologist was annoyed the nurse had given me the result over the phone so I felt like I'd got the nurse into trouble!

He would not confirm I was in remission even when pressed but said there was no evidence of disease. He said he was looking for a cure and that takes 5 years!

The enlarged lymph node - he does not know exactly why this is or whether it's cancerous or not. Its the same one that was enlarged on the MRI that diagnosed me. I've to have a further MRI end of October with result given 12th December. He didn't recommend removal of the lymph node as it is very deep in the pelvis and a large operation through already badly scarred tissue (from the radiation)

Oh it goes on and on......

Please can I ask, if you still had enlarged lymph nodes at 3 month scan how long did it take for them to go?

Also, is MRI standard after the 3 month MRI scan - I thought it was CT.

Thank you

FormerMember over 5 years ago

I did think it unusual that the nurse gave you the scan results over the phone. I hope you’re still feeling happy with your results even though the communication has been a little dis-jointed.

So your tumor has gone and you have an enlarged lymph node? no mention of another biopsy so this is really good news. My understanding is NED is the more commonly used term for remission. That’s what my oncologist tells me. He uses the term NED in conversation and all my follow-up paperwork says remission. We need to remain NED for 5 years to achieve cure.

I had enlarged nodes prior to treatment. At the time they couldn’t tell me if this was due to cancer or inflammation caused by infection. They treated my nodes with radiation to be on the safe side. At my 6 week check they were still enlarged but after my 12 week scan he couldn’t feel anything. As I’m sure your oncologist has explained there will be a lot of inflammation internally so this is the likely reason for your node enlargement.

Scan protocol does vary between hospitals. I had an MRI and CT scan 12 weeks post treatment. I continue to have these scans but on an annual basis. In a nutshell the MRI checks the tissues and membranes around the tumor site and the CT scan checks for any spread.

I would flag and ask why you haven’t had a CT scan. Also 12th December seems an awfully long time to wait for scan results. In my experience it’s usually approx a two week wait and that’s bad enough!

If you’d like to gain another professional view you could always email the Macmillan AC surgeon.

Hope you’re feeling well and work is going okay.

Sarah x

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