Advice on after treatment.

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Hello
Please excuse the long winded post....I am male, 52 and I was diagnosed with OC last Febuary (22), underwent the usual procedures to ascertain if i would be suitable for chemo and surgery ect....I was stage 3 so was suitable.
All procedures went as well as expected and I'm still in recovery mode.
However...I was told on many occasions througout my journey once all procedures were complete I would get for the first year 12 week check ups, I was also told this on my very last chemo session by my oncologist as I had some burning questions I needed answers on. Being told throughout my journey that I had a 20% chance of this being a success, clearly check ups are important....

As of yet I have had zero contact from oncology for any follow-up appointment and I am now 20 weeks post chemo.

My question is, has anyone else experiencing the same as me? Are you being regularly checked, monitored, tests, scans ect?  I have no idea if I am cancer free, have never been told i'm cancer free and the last time I questioned this was told "Fingers crossed you are and we just have to assume you are"

Any advice, help or pointers would be very much appreciated.
Thank you.

  • HI, my partner had chemo surgery chemo and finished in Sept 22, no further scans as was told they dont do them unless they have a reason too they just say they got all the eye can see, they will never say cancer free, they dont use them words.  He has had a few stretches where they do a dilation to stretch the throat and the camera goes down also but that it, any "follow ups" have been us going to the hospital for a chat and nothing done or the last on was a phone call, ridiculous!  I feel there is no aftercare at all..

    HOpefully you get an appointment soon at least, ring them and see.

  • Thanks for sharing and I hope your partner is doing well? 

    Have they had any post surgical appointment yet? I had one at 6 weeks and nothing since. 

    Kindest regards and best wishes to you both. 

  • The other problem i have is i want to go away on holiday this year to Italy, however all insurance company's ask that one question Are you Cancer Free? Yes or No......no option to say "I have no idea?'!!!!!

  • As far as insurance goes if you are not having treatment and no further treatment is planned you ca answer truthfully as far as you know you are cancer free.

    I have been cancer free (since my surgery) for 3,281 days but still nee to declare I have had cancer.

    Counting the days, making every day count.

    Brent

  • Thanks very much. Keep counting! 

  • Thank you he is doing well so far, he has a blockage and waiting to see what that is which is worrying but otherwise pretty good.  He had the 6 weeks post op appointment, he had chemo again for 8 rounds after op and then it was a few face to face appointments just asking how he was, the last was just a phone call no scans tho

  • Also we went on holiday in November and we got insurance ok, they ask are you on any medication you just have to declare what you are taking, it didnt cost us much not like you ear people saying it costs hundreds more, it didnt.  Just fill it in honestly with all your medication, my partner is only on creon he had nothing else tho.

  • I too hope to get away - to Spain.  I have done an insurance check with various providers.  The cheapest quote for a single trip of two weeks was £2700.  So it depends how much you want to go

  • Hi, I had my surgery in 2020 and the follow up has been pretty good, I didn’t see the oncologist again after the surgery just the consultant. I’ve had to have three stretches because sometimes the scar tissue can become a bit hard and inflexible. They are not happy with giving follow up scans, I insisted on having one last year for my peace of mind. When you have been touched by cancer it’s always at the back of your mind and having a scan goes part of the way to ease those fears. You do need regular blood tests to check your vitamin and B12 levels, as this surgery can effect these. If you have a nurse specialist contact them and ask when are you going to be seen.