Post op appointment

Hi Diamond.  Good to hear you have finished your treatment I suppose it’s scary when you feel you’ve been cast adrift   I am just waiting to start brachytherapy but I’ve already received a letter saying I will only have a telephone checkup in September. When I saw the oncologist last week she asked me  if I wanted telephone or face to face appointment.  I said f2f as at 75 and going deaf I struggle to hear very well on the phone.  

I am stage 1b grade 3 and my oncologist said I was going to have 5 sessions of radiotherapy but I don’t really need it as it was have a adverse affect on my Crohn’s disease so I have to go with the experts  Did you have any side affects with the brachytherapy?  

The nurse sounds lovely so try to stay in touch with her   

Best wishes  Maureen xx

Hi Poppy123.Thankyou for replying yes I do feel a bit scared of it coming back but must think positive.

Its good you had the choice of f2f or telephone call.Hope brachytherapy goes well for you it’s not painful and doesn’t take long.The only side affect I had was a bit of tiredness and a few bowel issues but I’m fine now.Sorry to hear you have Crohns too.

Yes the nurse was lovely and I will definitely contact her if I have any problems.

All the best for your treatment.

Julie xx

Hi Diamond, welcome to the group, and well done for getting through all the tests, waiting, surgery and brachy! I can see that the consultant expressed herself in a not ideal way, but basically it’s quite usual for some with your grade and stage to be put on patient-led follow-up. I’m grade 1 stage 2, finished my treatment almost 4 weeks ago, and am due for my post treatment check up in a couple of weeks’ time. I will then be put on patient-led follow up which I’m totally happy about. If I do have any concerns I’ll still be able to access my CNS. I hear you that you’re anxious, and appreciate that what the oncologist said wasn’t ideal, but this kind of follow up is pretty standard for our grade and stage. I’m happy to move on as being cancer free without trips back to the hospital and internals.

Hi Diamond and a welcome from me to the group. Over the years I've notice significant differences in Healthcare Trusts patient Your Consultant seems to have adopted the same off-hand manner many exhibit, not reassuring for us, the patient.

I myself always had quarterly face to face check-ups with internals.(I'm with Lincolnshire Health Trust)

Many ladies here just had their op, adjuvant treatment and then no further follow-up which surprises me. I'm not over keen on the Patient Led Follow-up but it does seem to be normal practice. I noticed  something about it on the board in the waiting room.

I would definitely take the nurse up on her offer to see you in 3 months time. That would give you an opportunity to chat and if you felt there were any problems they should be able to find a gynae Doctor around. 

If you've got any worries you want to talk about just fire away and we'll try to help.

Sending hugs, Barb xx

Hi

i agree with you Barb - there seem to be so many different follow-up procedures, when you would think there would be more of a norm.   I have quarterly face-to-face check ups (was it you who coined the phrase “face-to-fanny”?!) with an internal, and I also have an annual CT.  I believe this will happen for three years.  I did query the safety of annual CTs and was told there is absolutely no concern there, but some places just can’t afford to offer it.  It all seems a bit of a postcode lottery…

However I think that all trusts will respond quickly if we register any concerns and that it’s important to do that, however trivial we feel it might be.  I’ve never had a CNS because I was diagnosed in the middle of covid, but the team have said just to phone them if I’m anxious and they will see me.  I’m sure that would be the same in all areas.

Pippa xxx

Hi MarmiteFan59 Thankyou for your reply I’m feeling more positive now that it seems to be the norm just that I didn’t know what to expect,but joining this group has helped.

Hi MrsBJH Thankyou for replying yes I will definitely be seeing the nurse in 3 months time just to put my mind at rest.