Post surgery and cancer in Apacil lymph node - awaiting Chemo

Hi Janey,

Welcome to the group (that no one wants to be in). I'm sorry to hear what you going through, sounds like you've already been through a tough time with surgery. But take courage - the R0 is really important. Surgically getting everything is a big win. As my lovely surgeon calls it - a 'reset'. 

I have Stage 4 colon cancer. My experience on scans is - they've always done PET scans on me to look for distant metastasis. The PET scan is not as detailed as a CT or MRI but will show 'flares' which may be cancer or inflamation. If there is a 'flare' they've investigated further with MRI/CT/colonoscopy etc as needed...for example I had zero symptoms last year but a PET showed a 'flare' in the pelvic area, so they then did a MRI and found the trouble. Just to add, in terms of timing of PET - because infection shows on a PET, my surgeons have always waited if there is any infection before scanning. Also they said to me besides infection, its generally difficult to interpret a PET post-op...they've always waited at least 8 weeks before doing a PET post operatively, often longer. To give you idea, my first surgery the sequence was - PET + CT + MRI + colonscopy, then sugery, then 6 months chemo, with PET & CT at 6 month mark. 

I know distant metstasis is a real worry, but do know liver metastasis is really not a foregone conclusion. Despite me being Stage 4 in the 6 years since my diagnosis I have never had anything in my liver. I have had small mets in my lung - which were 'easily sorted' with ablation (literally an overnight stay in hospital).  So despite recurrences, I'm still ticking along & enjoying life. Lastly, you must remember the fact that you are generally in good health is also a big plus point. 

My last thought, I know its very hard, but over the years I've tried to focus on the small everyday good things - I tell myself to 'bank' those, like a walk on a crisp morning. Wishing you all the very best 

Hello - What courage!

I find it so difficult to deal with unknown - just my personality. This journey will be as long and as hard as that makes it, but the facts are facts and I must try not to let my imagination elaborate on them.

You are doing so very well and that's a real boost of encouragement I need.

I have a CT scan booked for December 10th, with follow up with MRI if anything suspicious is found. I have been through the experience of asking about PET scans with my husband ( who was diagnosed with Malignant Melanoma in 2018, but had successful biological therapy and is still here !) They always seem reluctant, quoting the false positives of the results, but i understand that this is the gold standard for stage 4. So your treatment has been excellent, which must give you confidence.

At the moment even the most beautiful things have such a feeling of overwhelming sadness. But I must be strong. I have always considered every day to be lovely. Even the wet, dark and stormy ones. I appreciate all I have, and have never thought with this diagnosis 'why me'. If it has to be someone, then why not me.....

Much Love, Janey XX

Doing a virtual salute this side. :-)  Your wonderful life attitude will stand you in good stead!

Your commment on not saying 'why me' totally resonates - my thinking was good and bad stuff happens in life. Thats just the way it is. We don't object when we have good stuff in our lives...we don't say "oh no, thats too many good things, too much happiness, enough already!" - so when i get a shovel of bad stuff, how can I complain. (Especialy given in my 52 years on this planet I think I've had a motherload of good things!)

Snap. How funny, I also have my scans on the 10th Dec. Will send you some warm thoughts while I'm lying in my MRI tunnel. 

xx

I will think positive thoughts for you, too.

If you don't mind disclosing, what treatment did you receive and at what hospital? I ask as I am still awaiting DPD results to confirm I can have CAPOX and I am MMR proficient - ruling out immunotherapy, as it stands at the moment. I may have to consider a second opinion if stage 4 is confirmed, and would like very informed and most up to date advice. No idea how and where to go for that.

Its rainy here, but its sunny in my heart

XX

Hi Janey

Sure - I had Folfox for 6 months in 2020 after my first surgery.

At the moment I'm on Raltitrexed & Irinotecan for 3 months. Just to say, it is an unusal combination - they usually give Irinotecan with 5FU, but I am unusual I can't tolerate 5FU...I get bradycardia. So thus the Ralitrexed. 

I happen to have health insurance so am private - my Oncologist is at Leaders in Ocology Care (LOC) Harley Street, London. I can't remember this forum's rules - but don't think i can say Dr's names? But do have a look at their website if you interested, the oncologists list their type of cancer speciality. 

I also went to the Royal Marsden Private section two years ago when I wanted another opinion (you can just self refer)....was pretty slow getting an appointment (well slower than the LOC) but the Professor of Oncology I saw was very attentive and I thought gave thoughtful input. 

Sorry, don't know if thats of any use. In case helpful - I have sought second opinions many times - on surgery decision and chemotherapy, and I've always been glad I did, even if they said exactly the same thing it gave me greater confidence. So, for me personally it was a good thing.

Dripping here too! But I have a good book so happiness. ;-)

xx

Hello - thank you for sharing that with me. I am intending to ask my oncologist what other treatments may become available to me if the CAPOX isn't successful. Should get my first CEA results next week - dreading them really as every piece of news seems bad. I don't have private health care, but am more than willing to self fund second opinions. The Christie in Manchester is probably nearest for us - and has such a good reputation.

I am doing a lot of reading too.

What is your book? Just completed Alison Weir's The Cardinal, and begun Paradise Now, a Biog of Karl Lagerfeld. Been a supporter of this enormous talent for years, such a multi faceted character and so gifted....bit of a fan you could say! X

If its any consolation - I can't have two of the main chemo drugs (Oxaliplatin & 5FU) so was getting nervous whether we going to run out of options...my Oncologist said to me don't worry there are options.  Feel for you, it is tough waiting for results, one tries not to pre-empt, pre-think but its hard. All the best for next week.

I forgot about the Christie, I actually also went to see a surgeon in their Private section (you can self refer) when I was first diagnosed. Not sure what their waiting times are now, but back then they were quicker than the Royal Marsden Private.

Oh cool, interesting. I'm reading 'Great Art Explained' by James Payne. Apparently it started as a series of videos on various art pieces, and now he's done a book. Good stuff. 

xx