Stage 4 bowel cancer

m2

How to get surgery/therapies privately? Please help

From my experience so far, is it fair to say that there is a procedure that all oncologists have to follow under NHS? That is to try out all 3 lines of chemotherapy to stabilise/shrink the tumours before considering surgery or other form of therapies?

I am currently in this catch 22 situation, tried all 3 lines of chemotherapy with no shrinkage but worse off, went to see trial drugs doctor in Oxford suggested by my oncologist, what they could offer is phase 1 general trial where they assess dosage & side effects, as if I have plenty of time to be lab 🐭! Then he went on to tell me how low the success rate is & how strict the candidate selection is, what a waste of time!

Because my tumours are not stabilised, my oncologist will not consider surgery or other therapies, which means basically I am sitting here waiting to die. He told me to talk to my palliative care nurse about pain management & hospice care. Initially I thought that's it & I have most of my affairs in order.

However, after giving it more thoughts, perhaps I should look into having surgery/other therapies done privately, at least it may extend my life even though it may not cure me. I have no clue how to go about doing so, maybe some of you could share your experience & point me in the right direction, thank you.

I will be seeing my GP this Friday, do I need him (or my oncologist, seeing him on 22/6) to refer me to a private clinic? It is extremely frustrating to know that there are effective ways to get rid of the tumours but it cannot be done because it will not eliminate all the cancer.

WendySue

Hello @m2 I am sorry that you are in this situation which is similar to mine. I have been advised that my 5FU weekly treatment is to sto

WendySue

Sorry @m2 pressed send by accident! To continue from last post my current treatment is not working and have been given choice of Lonsurf or trials. My oncologist has said he would support private referral for second opinion so am also considering this option. I have previously gone to the Christie for second opinion although expensive and did not get any new advice in my case.
Will be interested to hear what you decide to do.
:x::x:

Baxter2

Hi @m2

I'm so sorry you are in this position of wondering what's next. I think it would be useful to consider a private second opinion to explore your options. Your GP can refer you and you should be able to get an appointment quite quickly I think. I'm not sure where you are in the UK but perhaps explore what's around you in terms of specialist cancer care. The Christie in Manchester and The Beatson in Glasgow are two of the best I believe but there are many other centres which will be excellent too.

I hope whatever happens, you feel well supported by healthcare professionals as well as friends and family.

Sending you hugs and all my very best wishes,

K💜💙💛💚❤️

Tiffany

My advice, given your location, would be to make an appointment to go to The LOC in Harley Street. You could pay for a second opinion and then see what they say. I hope that this doesn't come across as rude or personal as I have no idea of your private situation but I should point out that once you go private you may have to pay for everything including scans, drugs, appointments, procedures and so on. I think that the cost of doing this would potentially run into the tens or even hundreds of thousands. It can't hurt to have an initial appointment and see what they can offer you though. Good luck xxx

www.theloc.com

HH79

Hi @m2 think you are under Oxford. You could try 2nd opinion Christie your GP does that, that’s NHS or try Jamie Murphy at Imperial London. Avastin worth exploring that’s £1500 per cycle lots of love :x::x:

m2

Thank you all for your suggestions & comments. It is very disheartening when I am told by my GP that, realistically it is the end of the road, what I should focus now is palliative care, even though I am extremely reluctant to give up.

HH79

Hi @m2 do look into Avastin! :x::x::x:

Jaap

Not sure what type your bowel cancer is m2..besides avastin there is keytruda. Not exactly sure what bowel cancer patients keytruda works for..but I'm sure @david watt could help us on that one.

david watt

Only msi high which is about 5 to 10%, but I would expect they would have already tested for that.

angepange

I have pm d you the name of someone you should seek an opinion from :x::x:

m2

Thank you for your input, I think my condition may be more complicated than I thought.

Bear G

Hi @m2
Really sorry to hear that. I do think it’s wirth asking again for a referral to another specialist oncologist, just to be sure you’ve got all your questions answered.
Big hugs
Bear
:x::x: