Incurable

To Ali, 

This is my story. 

Well appointment over. The first thing the oncologist said there is no cure and it’s all inoperable and it’s stage 4. Then he proceeded to say there would be no chemo as I had no symptoms he would wait 3 months to see if the tumours grow. Well you could have picked me up off the floor. I then told him with all due respect that’s not accurate what you have just said I am on pain killers for the tumour that’s in my sacrum/pelvis, I do have symptoms. Then he handed me a box of tissues I was quite incensed and told him it’s not tissues I needed as I was not crying. I told him that I required a team round me that have not written me off, and there heart and soul are in it . I told him my treatment was a discussion of which my views will be included. At that he said what’s your job mam I said I’m retired. He then said yes but what was you job before you retired. I was shocked why he would ask this! I replied I don’t think that’s relevant but know this I’m highly intelligent, why I said that I don’t know maybe because I felt he had written me off. Long story short I will now be getting targeted radiotherapy for five days to target the tumour in my sacrum/pelvis. Ct scan before and after and further conversation regarding chemotherapy. He’s not sure the tumours in my lungs are cancer at this stage ! There’s more but it would take to long to go through.  

Thank you Cath and I hope all goes well with you. I'm hoping chemotherapy keeps me going was told that any operation would be major and not advisable as may cause me too many problems.

Ali

Faloola - Am so sorry, sounds horrid. Maybe time to remind your consultant of the Care Act 2014?

Kettleson - heart goes out to you (with virtual hug) as incurable is massive to digest. Wishing you all the very best for whatever you feel is best for youself here on in

Thank you to you and everyone on here who have sent message of support. It was a massive day but my spirits are not dented. It’s only terminal when I’m not here xx

That's how I feel, I intend to take each day as it comes.

Big hugs coming your way. Don’t let the crappy cancer get you down. Just enjoy and embrace every moment xx

Best thing one day at a time. We all know that we are our own statistic. I made it 10 years after the crap  bowel cancer  invaded my space and according to statistics I had a 40% chance of making it to 5 years. Well here I am 10 years on. You’ve got this . We can battle together xx

There are many people using chemotherapy in a maintenance setting on their sixth and seventh year . Have a look on Bowel cancer U.K. forum and you will see evidence of this .

Best foot forward as my mum likes to say .

Court 

Hi. Court question. Yesterday as I said at first his plan was to give me no treatment as I had no symptoms then changed his mind on my pelvis because I have symptoms there however, he said for my abdomen as I have no symptoms, and lungs because they are not sure on them yet he didn’t feel chemo should start yet as he didn’t want to start it to early. He said he would scan me every 3 months to see if the tumours grow. So I asked him is it slow or fast growing and he said they don’t know. So my argument is I think I would rather start chemo when they are smaller than wait till they grow’!!! Have you ever heard of this approach?

Yes I have Faloola it is a recognised clinical approach favoured by some clinicians but others may actually start treatment right away . 
My mum has actually done one period of watch and wait for three months to clarify an area but Then started chemotherapy once they knew it was most definitely cancer .

Stages 1 to 3 have much more structured  protocol but in stage 4 it gets more into judgements and getting a feel of individual responses . It depends if you feel comfortable with this approach. 

We found it very helpful to hear how others would approach the same set of circumstances and the NHS allows you to have a second opinion at any point . This would allow you weigh up and assess what you think is a pathway you are on board with . My own belief in a stage four setting you can also be seeking windows of opportunity. 
Our helpline staff can talk this through with you on 0808 808 0000.

if you want to speak to a different oncologist you can get assistance to do this from your own GP or your actual oncologist will help you do this . It happens a lot and it’s not undermining their judgement it’s seeking more information. You might just want to know the actual chemotherapy options for your cell type etc .

What you do need to know is that this is the best pathway for you and be onboard with that . 

Gathering information and being informed sometimes helps you agree this is right for you in terms of quality of life or points you in a different direction .

My question in these circumstances is where is the window when treatment is most effective?  
Is that a question they can answer ? Or is this approach about maintaining quality of life without treatment for as long as possible? Some people like that approach . I am without judgements as it’s so individual . My mum selected the pathway that matched her approach to life . 
By the way you are an intelligent lady you are firing away with lots of questions .

Take care ,

Court