Oesophageal Patients Association

Watch and wait?

Hi

I've written at length previously about my case, but just to sum up, I had a total gasrectomy on April 4th for adenocarcinoma at the junction. Post op pathology indicated T3 N3 M0 (17 out of 19 nodes involved) and an R1 resection - margins clear apart from the circumferential margin. Not the best result I realise. Worse still, it was indicated that preop ECX had no effect on my tumour (despite my swallowing improving greatly)

Anyway, my regular oncologist was off long term sick and my locum told me I was incurable and prepared me for CX + herceptin starting next week. I must admit I was a little concerned by this as if the chemo had no effect pre op, why would it suddenly be effective post op, but I was keen to get started on the herceptin.

Last week I had a 3 month post op ct scan which has come back clear and met with my original oncologist yesterday. I have to say I really trust this doctor, much more so than the locum who I felt was not 100% confident in what he was talking about.

My oncologist has indicated that he doesn't want to start post op chemo for the following reasons: my scan was clear although there is an extremely high chance I have microscopic disease; I look and feel well, as healthy as I've ever been since my early 20s actually; the chemo had no effect before the op so he feels that he would just be giving me chemo "to make me feel better" rather to have any effect; he doesn't want to use up one of his main bullets too soon.

So, I've left the appointment yesterday feeling pretty uplifted (he's good at that!) with the plan to watch and wait. Contact him if (when?) I develop symptoms, and failing that meet with my surgeon in 3 months, scan early December before meeting with oncologist again mid December.

However, having slept on it last night I guess I'm pretty concerned and looking to see if anyone else has had an experience like this. One minute I'm uplifted that I'm getting the chance to get on with my life, the next I feel like I've been sent home because there's nothing they can do (he absolutely didn't indicate this to me but the mind works in funny ways I suppose).

One thing he did say was that he could offer me more frequent scans without a problem but the anxiety etc that I experience while going through this process isn't worth it and he is happy to listen to what my body is saying rather than constant scanning "just in case". If I feel any symptoms or concerns he will scan me within a fortnight of contacting them.

How does this sound to those of you who have been through similar journeys. Would anyone request anything different in my position?

Advice/experiences gratefully received.

4 Replies
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Hi there, I had Ivor Lewis big op in March 2016, my pre op chemo had no effect on my tumour although i could swallow better once i started treatment. I did have chemo after but only had two drugs ,as the red one injected in that makes your hair fall out wasn't needed. I was T1 N0 . I was told it was to mop up anything that could break off and travel. It was very hard on my body and had lots of side effects. I was then scanned and all clear. I then had a scan in March this year 1 year after that showed Lymph nodes up in my chest, they were all prepared to start chemo again and calling it secondary. I was shocked and asked to repeat scan in 6 weeks as i had had a chest infection. Anyway 2 scans later it seems it was an infection and lymph nodes have returned to new normal. I guess you go with what you want and what your body is telling you.

I have contact with my CSN and If I feel anything is wrong have to contact her for scan etc.

Good Luck

Debbie

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From my own experience I would say trust your surgeon, the one you know and trust- in my case, Prof Barr from Gloucester was an absolute star and indeed still is - I now see him annually and he is happy to take a call if I am concerned with anything (not that I have called him). I guess my point really is that YOU know best how you feel, what stresses push your buttons - if like me you feel good, your consultant is happy, then I say I don't need the constant reminders of scans to tell me what in my heart I know- that is I am as healthy now as I ever will be - at some time in the future I personally have no doubt that cancer will get me (as it did my parents) and as my brother and both sisters have had various forms I think mine is hereditary - but in the meantime I intend to enjoy as fulfilling a life as I can with my loved ones with as little medical intervention as possible. I hope this helps in some way but it is just my personal opinion :) best regards Ray

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I was told I will not be having any routine scans; the reason seemed to be if it comes back there is not a lot they can do. They will, of course, scan me if I have any symptoms, so that gives me the option of making up symptoms if I feel desperate for a scan somewhere down the line. At first I felt a bit panicky at the thought of no scans, but then I thought about the anxiety involved in waiting for results. I also spoke to somebody on a forum who can have regular scans but turns them down because of 'scanxiety'. I came round to the way of thinking that actually having no scans would make it easier to move on. I was quite happy about it then; ironically I have now been contacted about taking part in a clinical trial assessing the benefit of taking aspirin in preventing cancer returning. One of the benefits of taking part, they told me, is a scan after 5 years. I think this is a good comprise; I don't think I could stand the anxiety involved in a yearly scan, but one after 5 years I could manage.....

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Im having my Gasrectomy surgery Jan 3rd.2018. I'm really nervous. Ive not done well gaining weight. I'm at 118. So I'm worried abt As well as the surgery and recovery Anyone have any tips on what I should ask my Doctor on my last visit before my surg? Or any last min weight gain ideas? I cant hardly think straight. Like I keep starting to do different things and get side tracked. Ive still not got support from family. Which really sucks. I hate this but what can you do when your family is just not the type to be very helpful. I'm so stressed! Ive got to survive this!

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