Follow up appointments or patient led ones options after no treatment required

 mollysue sounds like you have had positive results? Huge relief I hope, although I can hear you are anxious to believe that it could all be over.  I opted for patient led follow up just because I am quite phobic about drs etc and I certainly don't want any internal checks unless they are absolutely crucial. However, this might end up having to change if my Lynch test results return as positive. Noone can make this decision for you, however I would personally believe you could benefit from the hospital appointments for follow ups if you feel at all anxious, that way you are handing decisions to the experts and you can still.call your CNS if you have concerns in between appointments. 

I hope you have been able to enjoy some relief. X

Thankyou  I'm very fortunate indeeed

yes it was all good no further treatment required but but sure how I feel about patient led but sounds like alot of ladies  take this option 

I'll see what dr advised  on my follow up apt  just wanted to see what others think of patient led  thx 

That is wonderful news for you Mollysue.

You must be so relieved.

I’m so pleased for you!  That is the best possible news.

My hospital offers regular checks - every three months for the first two years, then every six months, and I have an annual CT scan.  I think all hospitals have their own protocols though, and if you opt for the patient led pathway you can be assured that they will listen to any concerns you might have, and see you quickly if necessary.  Sometimes it’s just nice to try to move forward without always waiting for the next appointment.

You must feel very relieved today, although probably exhausted from all the waiting.  Try to relax and do gentle things that make you happy.

Pippa xx

Great news mollysue,

I have 12 weekly check ups for the first 2 years.

Its about a 30 minute appointment and includes general chat about how things are going, ask about any symptoms that could mean recurrence, then its a quick check of abdomen (checking for any lumps, swollen lymph nodes etc) Finally a quick speculum to look inside and an internal.

The physical exam takes around 5 minutes and is reassuring as they can see or feel if it is back. I am not sure about patient led as without the examination, it could come back and not show symptoms for a while. If it did come back then finding out sooner would be better. 

2 years after the end of treatment I will then move to patient led and will get the odd letter or call to ask how I am. I was told that if it recurs then the most likely time is within the first couple of years so am happy with this arrangement and it is reassuring for me. 

Jane

Hi Mollysue that’s brilliant news. I think people should go for whatever feels comfortable for them if they have the choice. In your case I suspect you would find it very stressful not to have a drs follow up! I didn’t have further treatment but see my oncologist every 3 months for a CT scan and an examination. Whichever way you choose to go I’m certain that if you have any problems you will have a contact number to call if necessary. In the meantime time for celebration!

Linda 

Brilliant news, you must be so relieved. Personally, I'd go with your consultant but that's just my opinion. Have a great weekend x

Hi mollysue 

Great news for you! Best wishes going forward.

A x

Hi Mollysue, so pleased to hear that you don't require further treatment. I was put onto the patient initiative follow up plan after my hysterectomy, basically I have no follow ups at all, I just call my CNS if I have any problems, I have a booklet which explains any symptoms that I should look out for. I have had to call them and they got me an appointment with the consultant within two weeks, the problem I had turned out to be nothing to worry about, but they did send me for an MRI straight away which was reassuring. They did also ask me if I was happy to stay on the plan, which I was. The plan is for 5 years and then I'll be discharged, they also send me a yearly letter with any symptoms to watch out for. 

At first I wasn't sure about the plan, but I don't remember being given another option at the time, but it has worked well for me, I know I'll be seen straight away if need be.. 

so I'll see what they suggest when I go back for follow up