Hi
My husband is almost two years post curative intent treatment /surgery for stage 2 OC .He isn’t on a trial and was told monitoring scans would only be offered if new symptoms occurred .
However he’s had two CT scans since his treatment ended due to acid reflux and eating issues .We have attended an appointment at the hospital today because the most recent scan on New Years Eve (to assess if he needed a dilation) has flagged up the slight growth of a tiny nodule on his kidney. This was was noticed way back over two years ago on his first pre treatment scan and disregarded as insignificant ( A lung nodule flagged up at the same time too but that mysteriously disappeared and no one has been able to explain why ? ) …So the urology dept is now involved and he will be offered a CT scan every six months to monitor any growth .(if any)
No one seems overly concerned at this stage , the consultant has suggested it may stem back to an accident 40 years ago when my husband sustained a ‘nick ‘ to his kidney and it’s been ‘aggravated’ by the chemo. Nevertheless the urologist has deemed it significant enough to warrant monitoring so we will trust his judgment , hope for the best and ‘ go with the flow ‘ for now .
What I can’t understand though is why some Upper GI departments can’t offer their OC patients post treatment scans unless new symptoms present ..but other departments can ? ( I understand this may not be the case regionally ) ..It just doesn’t seem right especially when we were told by my husband’s consultant two years ago that OC is a tricky and unpredictable cancer due to the close proximity to other internal organs , and the after care package would be extensive , so I would’ve expected regular post treatment monitoring scans to be offered as an essential part of that after care package .I mean how can you see what’s going on inside a body unless you have a proper look? ..Sometimes symptoms don’t show until later stages either !
I have asked the question in the past and I get the impression most of the staff don’t agree with it ..So is it just lack of funding ?
Fortunately the scans have shown everything is looking good regarding the OC surgical site and he doesn’t need a dilation ( He just needs to chew his food more ! ) but we’re now back on the hospital treadmill with the kidney nodule ( whatever it is ? ) .and I wouldn’t even dream of complaining as we are so grateful for everything his medical team have done for him and for their commitment and thoroughness throughout this whole rollercoaster of an experience . They saved his life !!
Making the most of everyday and counting our blessings …for now .
J x
I am pleased for you and your husband that treatment has been effective. And fingers crossed you continue to receive good news.
Picking up your question on follow up scans and apparent regional discrepancy.
I have copied and pasted from the NICE guideline on gastro-oesophageal cancer the section on follow up after treatment with curative intent. These are only guidelines and each MDT will use discretion.
I assume there are very good Clinical reasons why follow up is symptom driven (egs the unpredictability of the pattern of recurrence, the limits of detection of the imaging equipment). But I don’t know. It’s a question for your MDT.
NICE Guideline section on follow up is this:-
For people who have no symptoms or evidence of residual disease after treatment for oesophago‑gastric cancer with curative intent:
provide information about the symptoms of recurrent disease, and what to do if they develop these symptoms
offer rapid access to the oesophago-gastric multidisciplinary team for review, if symptoms develop. [2018]
For people who have no symptoms or evidence of residual disease after treatment for oesophago‑gastric cancer with curative intent, do not offer:
routine clinical follow-up solely for the detection of recurrent disease
routine radiological surveillance solely for the detection of recurrent disease. [2018]
Thanks Rosie. I found this interesting. Best wishes, Julie
Thanks for posting those NICE guidelines. I have often wondered about the same questions raised by the original post.
In our case, my wife had curative treatment for primary OC, but developed secondary cancer about two and half years later - which she then died from, a year later.
I have since been tormented by the following two questions:
To my recollection, we were never really given any advice about what kinds of symptoms we should be keeping an eye out for. In the event, the symptom which my wife developed was a bad cough. I actually thought nothing of it, but we eventually chased it up with our specialist nurses - and the appalling outcome is as I've described above. So I am left with a couple of 'what ifs.'
Do you mind if I ask what type of cancer she had in the end and if it was related to the original diagnosis of OC or was it a new primary cancer?
She died of secondary OC (i.e. OC which had metastisised elsewhere.) By the time investigations were done, she had developed two new tumours, both of which were declared inoperable.
I'm so very sorry to hear what happened to you and your wife. I've been accepted onto the SARONG trial which is being carried out to see if more regular screening post op and chemotherapy makes positive outcomes more likely.
Thank you. What's happened to my wife and I is just appalling. But I am trying to cope.
I had not heard of the SARONG trial, but it sounds like a very worthwhile and sensible endeavour. I hope it leads to productive changes, and better outcomes in the future.
Best wishes.
I’m sincerely so sorry for the loss of your wife to this dreadful disease .
I lost my Dad in August to metastatic cancer .His primary wasn’t found .I have lots of ‘ what if ‘ moments too .
I think the whole experience with Dad has left me ultra sensitive to my husbands current situation and I’m questioning everything at the moment .
My husband will now have six monthly scans on his kidney and he’s now back on six monthly monitoring for the oesophageal cancer he had two years ago .
Best wishes J
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