probable pancreatic cancer diagnosis

I have just seen your post re: probable diagnosis of Pancreatic Cancer - I dont know anything about the possibility of going private but I thought I would write to help reassure you  -  I was diagnosed with Pancreatic Cancer end of June beginning of July 2019    I had the whipples procedure 2nd September 2019  chemo was started October 2019 and ended March 2020 -   I was given the brilliant news in June 2020  treatment(s) successful  all clear.   I hope this gives you and your husband a clearer idea of the timescale involved from scan to operation etc... and help you make a more positive decision regarding what lies ahead  -   its a long road and I am still on that road.  The aftermath of the treatments the mental strains etc dont  go away just because your given the wonderful news all clear, lots of adjustments need to be made and learnt.     I hope all goes well with everything private or NHS 

Best Wishes  Kindest Wishes

CatLyn

Hello NikiM

The advice which CatLyn has given you is great. She has outlined the Whipple procedure.

The Whipple is complex surgery and in Scotland the surgery is carried out in five (?) centres of excellence by very experienced surgeons. I'm not sure where they are but I live in Fife and my husband had the surgery at the Royal Infirmary in Edinburgh. I am not sure but I don't think that the Whipple is done anywhere privately in Scotland. However, you might be able to hurry the process on by having the PET scan done privately. This is what my husband did. You could ask your GP to refer him. I think that a month between diagnosis and Whipple would be about the usual time.

Squeaky

Thankyou CatLyn for your note, it was really appreciated. 

Hi Squeaky, my partner will go to Edinburgh Royal so it is good to know what you think of them. From my research there isn't a possibility of a PET scan privately in Scotland and it could possibly delay things if I tried to get this in England, where did your husband get his?. 

Thanks for your response....

HI NikiM 

Sorry for the delay in responding. Now that I think of it the scan my husband had was a CT scan which he had Spire.

The treatment at the Royal was excellent. Is your husband using Creon to help him digest food?

Squeaky

Hi 

Thanks for coming back to me, he has just started Creon, so getting used to it, he has had some indigestion with it, I imagine you need to get used to it. he has a PET scan this week I must confess to being terrified that it will show something the CT Scan didn't....

Hi

The reason I asked about Creon is that the Royal were a bit slow at prescribing it.

The Royal really do have a top team.

I hope all goes well with the PET scan.

Squeaky

Hi NikiM     just seen your latest about your husband has at last been started on Creon    I found that enzyme really upset me  cramping, terrible diarrhoea and feeling very unwell (besides the chemo and other meds)  I was frightened to eat   they changed Creon to Nutrizym 22 which (touch wood) hasn't caused the side effects of Creon    I was also told by my GI Nurse don't worry about taking too much enzyme in her opinion you can never have enough   Anyway I hope your husbands treatments and scans go well :)       Just thought I'd let you know there are alternative enzyme products should any side affects occur        Best Wishes/Luck   kind regards CatLyn    

Hello NikiM,

I'm on private care in London and that was the time frame I was given. Unfortunately the PET showed too much contact with the Portal vien and my EUS biopsy confirmed cancer, so they decided to do 6 session of Folfirinox first then Whipple... 2 sessions down, 4 to go.

Great news on your all clear. I’m following a similar path having just completed 8 cycles of chemo, forfirinax. I have 5 half weeks of 5 days a week of radiotherapy and chemo in tablet form to look forward to. At the end of this session is the possibility of surgery. So onwards and upwards! Best regards Brian.