Relatives and friends

Judyg

Husband just diagnosed

Hi, my husband, aged 59, has just been diagnosed and we are both reeling at the moment. He has Lynch Syndrome, which meant an increased risk of bowel cancer, and he was having colonoscopies every 2 years which were supposed to be preventive.

2 years ago they found a large polyp which was removed - there were several follow-up visits but these only looked at the lower bowel. This time we went along for his colonoscopy and they said they had found a large ulcerated cancerous tumour in the upper bowel, and also another small tumour. We are now waiting for him to have a CT scan - he has had a blood test and was supposed to hear back on Friday when he would have the scan but has not heard so now we are waiting to hear on Monday.

They said that if it was operable they would probably remove the whole bowel, but if it wasn't operable he would be "passed to oncology to manage". He is convinced this means he is going to die (his dad died of this aged 39) and is in absolute panic. I'm also very upset and sure that I'm saying the wrong things although I'm trying to be strong for him. He had not had any symptoms that he had noticed. Can anyone give me any advice about the right things to say, and whether it would be a good idea for him to get anti-anxiety meds of some type while we are waiting to find out what the prognosis is? Many thanks for listening.

Tiffany

Hi @Judyg. So sorry that you find yourself here but welcome to the forum. No wonder your hubby is reeling in shock.....how awful for him having lost his dad to this so young.

First thing is first....take a big deep breath! I know it's easy for me say but you need to take things day by day right now and not let your imagination run wild. Do not Google...it won't help!

Secondly wait until you find out exactly what is what. You say if it is operable then they would remove the bowel....this sounds like good news. I assume the aim would be curative in this situation?

Lastly try to keep things positive if possible. I focused my energy on ensuring my hubby was as healthy as possible running up to his treatment. He was unfortunately inoperable and had to endure some very hefty chemo for six months. I started cooking everything from fresh and tried to get hubby as strong and healthy as possible. This entailed a lot of trial and error.....supplements, alternative therapies, lots of green food, limiting sugar, meat and dairy and making him exercise every day. We also spent quality time with friends and family and even took a couple of special trips on our own. All this kept things ticking along and gave us something to look forward to. Don't get me wrong it was hard...some cancellations along the way. It's lonely being the wife sometimes but that's what The forum is for.

Got lots of advice if you want more and I'm sure everyone else will come along over the next few days and say hi.

Click on my name to see our story......it's a positive one. My hubby is now showing no evidence of disease after being told he was incurable and inoperable!

There are others on here with positive stories too. Wishing you all the best.

Tiffany

Judyg

Hi @Tiffany, many thanks for the lovely reply. I have read your story which is inspiring. Glad to hear that your hubby is now doing so well. I'm trying to take things day by day, as you say, and not let my imagination run wild, but it isn't easy.

We have decided not to do any Googling about the actual cancer, treatments etc (although we do already know some things about it from 20 years of colonoscopies), but I have now looked at the bits about depression/anxiety on the Macmillan and Cancer Research sites, which both say it's a good idea to see a doctor if this is a problem, so if the level of anxiety continues I'll mention that to my husband.

Yes, if they do remove the bowel I believe that would be to cure it, although it was a bit of a blur when they spoke to us, but they did say they wouldn't do this if it had spread. Waiting to find out whether it has spread and what comes next is hard. So far I've only spoken to other relatives where I'm trying not to worry them more than necessary and to put it as positively as possible, but obviously I'm worried myself.

Thanks again,
Judy

GD62

Hello @Judyg

I'm so sorry to hear about your hubby's diagnosis, but as @Tiffany stated that if they can operate then that is a good sign. That said, if there have been two yearly colonoscopies and given it takes five to eight years for a poly to get to cancerous stage, then let's hope and I'm certain they are more likely to have got it an early staging.

The worst thing is awaiting CT, MRI and PET scans outcomes and the MDT meeting to give a treatment plan can take a couple of weeks. So try not to panic and keep busy. Hope all goes well stay positive.

Hugs and positive healing thoughts :x::x::x::x:

Judyg

Hi @GD62, thanks very much for your message. We are trying not to speculate too much but obviously hoping it is an early stage. Thanks for the positive healing thoughts. :x::x:

Baxter2

Hi @Judyg and a very warm welcome to the forum from me too!

I’d echo what @Tiffany and @GD62 have said....all great insight and advice. This period at the beginning is probably one of the worst. We’re all right beside you!

Sending all my very best wishes,

K💚💙💜💛❤️

Judyg

Many thanks @Baxter2 He has his CT scan tomorrow, so we are hoping to find something out soon. :x::x:

Baxter2

Hope all goes well with the scan and you get results quickly @Judyg

Will you let us know how he gets on?

Take care,

K💚💙💜💛❤️

Judyg

Thanks so much for the replies, @Baxter2 and @HH79. He has now had a CT scan and has an appointment in a few days' time, so then we will find out more. It's very up and down at the moment - we have had a nice couple of days where we have been out a lot in the sunshine. love to both of you too. :x::x:

Judyg

Just coming back to say that we saw the surgeon, and it is operable - they are planning to remove about 75% of the bowel (not all of it as suggested initially) and connecting the bit that's left up to the rectum (not sure if I have worded this right), so hopefully he will not need a stoma. Apparently it will be a massive operation and could take about 7 hours as they are hoping to do keyhole surgery. Anyway, we are both pleased that they are going ahead with surgery, which should be in early June. Thanks for all the support. :x::x:

GD62

Hi @Judyg that all sounds positive that they can operate, keep on keeping on, todays weather has been great and went to a big car boot sale to buy tat stuff for my xmas church fare in December stall and we bought and planted loads after going to the garden centre. I'm stage four and just try to make the best of my situation.

I think it's great you now have a plan and you can get a little holiday before the operation even if it's a weekend away.

Hugs and positive healing thoughts :x::x::x:

Judyg

Hi @GD62, we have indeed booked a weekend away before the op, so that is something to look forward to. Yes, the weather was lovely today, we went to a steam engine event (my husband's hobby!)

Sorry to hear you are stage four. I'm glad you had a good day today with the car boot sale and buying and planting. Hugs and positive thoughts to you too. :x::x:

GD62

hi @Judyg choo choooh........... was he a Casey Jones fan probably before his time black and white TV series in the 60s and 70;s aboard the Canon Ball Express.... lolx

Catlover

That is good news @Judyg. It is a huge shock when the news first hits you but you have been given some excellent advice on this wonderful forum. We are about 5 months down the line from the operation and coping with our new life. It has been a rollercoaster, to say the least, but we are getting there. Enjoy the rest of the weekend. Any more steam rallies to visit?
:x::x:

belinda66
Quote from @GD62:
hi @Judyg choo choooh........... was he a Casey Jones fan probably before his time black and white TV series in the 60s and 70;s aboard the Canon Ball Express.... lolx

Ah, yes dear old Casey Jones steamin' and a-rolling.

Judyg

Hi @GD62 and @belinda66 , no, he wasn't a fan of Casey Jones - must admit I don't remember the series although I was a kid in the 60s! :x::x::x:

Judyg

@Catlover , yes, it does come as a huge shock for all of us. Glad to hear you are getting there, but I can already see what you mean about it being a rollercoaster. Hope you have a good bank holiday - I'm actually working but will get another day off for it. :x::x:

Catlover

@Judyg - don’t work too hard! :x::x:

Judyg
Quote from @Catlover:
@Judyg - don’t work too hard!

I didn't! :x:

Catlover

Good😍