Feeling frustrated

Hello Jools63

I am sorry to see that your cancer has shown further spread. It must be a worrying time for you and I hope that you do not have to wait too long to have your appointment with the oncologist to discuss your options. 

I can understand your frustration at being told previously that no mop up chemotherapy was needed and then finding it has spread again. 

It sounds like they are considering offering some chemo this time. Maybe think about preparing for the appointment and making a few notes of questions to ask. You could then maybe ask why chemo wasn't offered before and express your concern that it may have prevented this progression. 

I am glad you feel a little better for getting it off your chest, rant away when you feel the need- it's better out than in. 

I hope your appointment gives you the answers you need

Jane

Hello Jools

First of all, you have my sympathy and I definitely identify with your frustration. 

I am in exactly the same situation as yourself, even the date and time line is the same!  I had surgery on my liver (as a result of secondary bowel cancer)  last August with a quick recovery followed by a period of relative stability. I had an MRI scan in late December and had to wait 6 weeks for the results. It had spread again in the liver in a different place and chemo was recommended - again.  I have recently had another scan to find out if it has spread anywhere else and on tenterhooks awaiting for those results. Meanwhile I am currently on chemo to try and shrink the new lesions.

I am learning to live with this new life, but it is hard work and can be mentally exhausting.

Thanks Jane. I appreciate your response. I’ve now got a date to see the oncologist! It’s 9th May, so long enough to get my head on straight and prepare some questions. I’m back on my positive side.

Thanks for your responses Oldale. I can’t believe you had to wait 6 weeks for scan results. I couldn’t have coped with that! I phoned one of the stoma nurses and she gave me my results over the phon I’m incredibly grateful that they are prepared to do that. I am trying to compile some questions in readiness for my oncology appointment on 9th May. I have been told that they can’t see any spreadnywhere else, but don’t feel very confident about that. They’ve told me that on two previous occasions and been wrong. I really hope the chemo works well for you, and that your latest scan shows no rther spread.

That's good to hear and I always found it helpful to make a list otherwise my mind goes a bit blank when I get in there. Good luck

Do hope your appointment goes ok on 9th May and you are able to commence treatment, if you decide this is the best option.  I await further updates after the 9th May! Wishing you all the best.   

Thank you so much for your good wishes Oldale. I hope you get your scan results soon. I completely agree with you that it is mentally exhausting. The range of emotions from fear to anger and beyond! We try to stay positive, but it’s hard work sometimes. Take care of yourself.

Hi Jools63 

I replied on another thread but I think it’s very common not to give post op chemo . My mum’s oncologist stated that in a stage 4 setting they have options but like to use the options on visible disease on the scan or they could end up using up the chemotherapy options before it’s needed and he wanted to spread that out to be most effective when required . I have seen some oncologist give post op chemo but I think clinically they have a decision to make there . Use it now or save it . 

It was the second round of chemo and surgery that really did the job for my mum and has kept it clear for 12 years .

I also think it did a number on the micro disease for literally a decade before it resurfaced. I honestly don’t know the science but I think it also gave her immune system a chance to play a part in control too .

Take care ,

Court

PS but I agree it’s the most frustrating process ever !