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Hi Paly

That would be so good if you don't need major surgery, will keep fingers crossed for you for your next meeting.

My tumour is in the same location as yours and it started at 5cm which is quite small but it needs major surgery. The chemo did quite well attacking the tumour but guess it's still too big or it's position is awkward.

I'm prepared for the op on Jan ,5th as long as doctors strike doesn't move it again.

You have a lovely Christmas too and please post on here how you get on as I will too.

Best wishes

Dean

Hi, 

They found my husband's tumour on 30th December last year, CT and bloods taken same day, PET scan done 2 weeks later. Staging lap was end of January, then nothing until chemo started 8th March. Operation was 14th June, 2nd lot of FLOT Chemo started 8 weeks later. The operation is the hardest thing anyone can go through, but you get through it. The second bout of chemo is harder than the first due to a weaker body, but they will monitor you and you can drop the strength of the treatment. Speak to your clinical nurse specialists and dieticians, they will become your first port of call for pretty much everything. Try and keep your weight up for the operation as you will lose up to a stone post op. The fitter and stronger you can be in the lead up to the operation the quicker you will recover. Our hospital offered Pre-hab which was helpful. Make sure you have a good support system, but if you have a loved one who will be your carer, make sure they have a support system as well. New Year's Eve last year we didn't think he would be here for today, but he is. We are in the middle of chemo and radiotherapy at the moment due to spread, but they are hopeful. The cancer research site has helpful information which explains the staging (when you finally get it). It will be a T number, N number and M number. You want the M to be zero (no mets). everything T1-4a is operable, N is for the lymph nodes 1= 1-2 nodes, 2= 3-6 nodes and 3 = 7 or more. My husband was initially T3 N3 M0 after the operation they restaged him to T4a N2 (the chemo knocked some of them out) and M0. The wait for results is horrid, try not to google and don't look up life expectancy, our consultant said it is individual for every patient. It's a long road and definitely a marathon not a sprint, but enjoy the good times when they come, they are what will get you through. Hope this helps as I know a lot of replies were still early in their journey. 

Hi JayStevie,

As someone who is just starting their journey, it is posts like yours which I find the most helpful. I would like to print it and keep it in my treatment journal to refer back to. Thankyou very much for posting. 

Hi hope your husband is getting on ok now. I'm about to have my op after 4 rounds of FLOT. It sounds like it will be the hardest part of the journey but I'm staying positive. My diagnosis was T3 N1 M0 and no spread. Also the FLOT did attack the tumour quite well so I'm hopeful for a good outcome.

I'm fairly fit and healthy so in the best shape for op which is Jan 5th as long as doctors strike doesn't move it again

Wish your husband all the best and hope you are doing ok too because it's difficult for partners too. My wife has been my rock and I'm going to beat this

Best wishes

Dean

Hi CoolBlue

It is all very daunting to deal with the treatment plan. I have done 4 rounds of FLOT and now op is scheduled for Jan 5th so maybe a bit ahead of you. If I can help you in any way just ask. The main thing is just take each day as it comes and deal with whatever it throws at you as best you can. 

Always ask your specialist team for advice if you are concerned about anything as they are brilliant.

Good luck with everything

Dean

Hi Dean,

I would be interested to know, after one cycle of chemo, if the side effects I have had so far (and I have been pretty lucky with these) are pretty much what I should expect to have with cycles 2, 3 & 4? Do any new ones occur? Any changes to severity? As I said, I would be more than happy to merely have a repeat of my cycle #1 symptoms 

Hi Cool Blue

For me the first cycle was the worst but the pins and needles in hands and feet got more uncomfortable for rounds 2 and 3 so asked for strength to be reduced for the last round which they did and got over the last round much better.

Lack of taste was not nice either but that came back gradually. I did have a few rough days each round but it's normal and just something you have to get through.

The cancer team have been brilliant and if you have any concerns talk to them as they can advise on how to deal with any side effects.

It gets a bit easier after each round but it's never going to be pleasant as they are giving you very strong drugs.

Good luck with it all

Dean

Hi Dean

I had a phone call today from the endoscopy unit inviting me to have another look on 05/01/2024  to check if this EMR is a viable option ,apparently they inject dye around the tumour to see if it can be removed safely without the need for major surgery 

Im keeping everything crossed 

Good luck with your opp I’ll be thinking of you

Best wishes

Paly

Hi 

I had my Endoscopy today and the news wasn’t very good, it looks like I’m back to the original treatment plan (Chemotherapy,surgery,chemotherapy)the tumour is too far advanced to be removed endoscopily although it’s still relatively small 3cm’s

Now waiting for next mdt meeting next Thursday and probably oncology appointment 

Happy New year everyone 

Paly

Hi Paly,

That’s unfortunate. I think we were probably all rooting for you to be able to have the less invasive procedure. But at least you’re still getting the chance to have your tumour removed and make a full recovery. That’s the journey I’m on too. Half way through my first four cycles of FLOT with surgery looming sometime in March. Happy new year and the very best of luck to you in 2024