PET Scans

My mum was always lined up for a PET scan as part of the referral process for specialist MDT meets . Perfectly normal and thorough. Then they had fresh scans to forward to the the specialists to review ! They have their own MDT meetings so like everything in place !

All sounds positive !

Court 

Hi Court

Many thanks for swift reply. Greatly appreciated.

That's cool. Glad it's the norm. 

Best wishes to you and your Mum

Nettie123

Cool news update re: recent PET scan.

Apparently my MRI results were sent to a liver specialist at Kings and he said they were 'undefined' so suggested the PET Scan after the 6th folfox cycle, instead of waiting until 12th as apparently they sometimes do down here (Kent).

Fantastic news - I have no visible cancer anywhere from head to thighs. Although the CT and MRI showed something in the liver, it is not cancer, so not an issue. I feel so lucky!

I'm off Folfox at present as had to stop for the PET Scan. Will find out at next oncology appointment (3rd Sept) if the final 3 months mop up is needed.  The MDT meeting suggested possibly not, but my oncologist was not present, hence he is going to inform me on 3rd. 

Part of me feels another couple of sessions would feel safer, but will go with his decision and rejoice either way!!

Such fantastic news ! Absolutely delighted for you ! You are in a great path to full recovery !

Enjoy !

Court 

Hi Court

Thank you for your reply and for the great support you give everyone.

Since receiving the PET Scan results I've been in a constant happy state!!

On September 3rd (our wedding anniversary - 44 years!) I had a telephone consultation with oncology and was told that, as the PET Scan result was so good, I can opt to either stop the mop up Chemo now (after only 3 months) or, if I feel safer, continue with the remaining 3 months.

It is excellent to have options, but also confusing! Folfox side effects have not been too bad and naturally I want the best survival chance in terms of Cancer not returning (Cancer was also in 7 out of 20 lymph nodes and surrounding tissue/viens).

I've opted to do another 2 cycles of Folfox. This will mean 8 out of the originally recommended 12. 

Do you / anyone you know, have any experience re: similar decisions? All advice welcome.

Many thanks,

Nettie123

So good to hear that Nettie123 it is so good to get a lift like that !

That sounds really reasonable to take a further two but also to balance that out ! My mum was initially told eight but only had six as they were happy to move it up a gear at that point ! We just went with the guidance knowing that there was so many variables and what my mum felt comfortable with . The robust scanning and CEA was a good peace of mind too ! 

Hope your off out enjoying yourself !

court 

Hi Court

Glad you thnk 8 sounds good. Yes, the follow up scanning is reasuring.

I've never asked my CEA results, but assume it's measured when they take the blood at Pre Chemo Clinic so thats cool.

Off to a local nature reserve today, taking the dog and family for a picnic.

Best wishes to you and your Mum.

Nettie123

https://www.thelancet.com/journals/lancet/article/PIIS1470-2045(18)30093-7/fulltext

If you are up for a read this is the research article in the Lancet. They looked to see if there was any benefit to do three months worth of chemo verse six months worth of chemo ! Think is why we are now seeing people being offered a shorter course on the forums for a specific group of patients !

I think there has always been some clinical judgments involved by the oncologists as there has always been a different amount of cycles depending where you live as there are so many variables!

My mum never really got an option but was happy to go with there advice! 

You have a couple of extra and know your doing the best you can !

Your in a great position currently and enjoy every minute ! You have worked so very hard to get to this point !

Take care ,

Court 

Many thanks for lovely message and interesting link. Wow...I found myself looking up several medical words and phrases, in order to follow it! Becoming used to this lately! Cool link. 

I've ploughed through BMJ odds and ends, forwarded to me by my late mother's partner (a retired army medic) - couldn't find anything relevant to 3 or 6 month trials etc, but I've recently read discovered info from: 'NICE' via the following weblink and some ncbi (US):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4980863/

https://www.nice.org.uk/guidance/ng151/evidence/c8-optimal-duration-of-adjuvant-chemotherapy-for-colorectal-cancer-pdf-253058083669 

The US (ncbi) link seems to suggest 8 cycles, rather than just six for Folfox, but others are saying 6. I feel that, as metabolisms are totally diverse - we are unique individuals, 6 weeks will work for some people and possibly 8 may be needed for other people. With this in mind, I've opted for 8, as I feel safer!!  Had Chemo today. Just one more cycle to go, then I'm free - yay!!

Macmillan have been brilliant with this Online Community support. The Macmillan nurses, attached to my Chemo unit, down in Kent, are excellent too. It is not always possible to speak with our allocated nurse, but normally 'someone' will phone back, if we have a query and always the response is cheerful, professional and reassuring, despite the fact that our unit is one Macmillan nurse down and demands are high.

Planning to do a Macmillan Coffee Morning this year - to hopefully raise some funds. May have to be an 'online version', but worth a go!!

Thank you once again. 

Nettie123

That was a very interesting readNettie123 . You know research drives these decisions but it’s the attention to each subgroup that is very interesting! Even between Different chemotherapy agents ! 
But it’s good to understand the frame of reference for their decisions . 
I have seen a lot of clinical trials for rectal cancer . Interestingly my friend is just about to start radiotherapy for breast cancer and was told she will now get a shorter intense dose as the research indicates it’s just as effective! We don’t get to know much about the stuff that goes on with the scientific community behind the scenes but it certainly drives the clinical practice.

I will bookmark this thread !

Very interesting and reassuring to know !

Over the last ten years you can see the oncologist tailoring chemotherapy to individual needs more and more !

Take care ,

Court