Just diagnosed

HopefulWife

Shock bowel cancer diagnosis already spread to liver

Hello

I am posting here in hope of support, understanding & hope. I also hope to give that to others reading this. I am sorry to anyone reading this that it means you or a loved one are struggling with this hideous disease.

My husband is 36, he is young, active, physically fit, ideal weight, non smoker, non drinker with no family history of bowel cancer. Last September he ran a half marathon, January he went snowboarding, February he cycled 200 miles for charity. We thought he was very healthy, he had no health complaints or symptoms. 8 weeks ago after dinner he came out of the toilet worried there was a lot of blood (first time this happened) an hour later he went again & the toilet bowl again was full of blood. Thinking there was some sort of internal bleeding or rupture I told him to call 111, they told him to go to A&E. Whilst in A&E the same thing happened 3 more times, they took samples of the blood he passed as well as blood tests. We got no results from these to cause concern so he was sent home & told a gp call would be booked for him. 4 weeks later he had that gp call & let them know that he was still suffering. They booked a test for a flexible sigmoidoscopy. They told him they would test for chrons disease, ulcers, cancer but given his age & health not to be concerned he most likely had hemorrhoids.

The day of the appointment came and I almost didn't go with him as we were told not to worry but as I had a day off I went with him. The test was done and the doctor told us he discovered two tumours one of which was cancer. He himself was very surprised we were sent home straight away saying not to worry everything is treatable, bowel cancer isn't what it was 20 years ago & to go home & get ready to be called in for treatment it all seemed very strange.

We then got a call from the macmillan nurses explaining the process of the MDT meetings, we were told he needed a CT scan & MRI before they could book treatment & told the scans would be booked & we would get results the Tuesday after. The Tuesday after came & we received a call letting us know the cancer had most likely spread to the liver, there were 4 spots on the liver they wanted to investigate further. They said there were cancer cells in the blood stream around the tumour and they were sure the 4 spots on the liver were tumours as there's nothing else they could be. He's had to go back for a MRI of liver & a PET scan to tell if it's spread further.

I asked the nurse what this all means & she told me the tumours are not operable. She said the bowel tumour is contained in the bowel at present but they would not put someone through major surgery in my husbands condition with the cancer having spread. We now wait until Tuesday 18th for the results of the further MRI scan & PET scan. I asked what stage my husbands cancer is but she says they dont know as only determine stage once they disect a tumour after its removed. This doesn't sound right especially as saying its not operable so does that mean not removed?

Is anyone able to help me? The nurse did not fill me with any hope & all sounded quite negative. My husband has everything to live for we have a 4 year old this is all such a shock & seems a surreal way to discover you have two cancers. My questions are:

1) is his cancer automatically stage 4 cancer? Everything online indicates bowel cancer that spreads to liver is stage 4 & advanced

2) does not operable mean not treatable?

3) if the cancer has spread & is not operable does this mean it is terminal?

4) what happens now in terms of timescales

Please help if anyone can shed any understanding on this. He doesn't have a single symptom. Symptoms online are extreme pain, extreme exhaustion, loss of appetite, unexplained weight loss, feeling full after small meal, yellow skin, yellow eyes. He has none of this, he is still working long days, going for runs, walking our dog, playing with our 4 year old. This all seems mad..

Thank you in advance to anyone who reaches out to me. I really appreciate the support this group is able to bring.

HopefulWife

Thanks everyone. Finally some good news. The pet scan showed no further spreads other than liver and bowel. We are now awaiting a date to do a 3 month chemo course. They are hoping to shrink the tumours (7 on liver)and then review if liver surgery is an option after chemo. If all goes well they will then do 3 months more chemo then operate on bowel then 3 months more chemo. Finally feel like we can start our fight :)

charleyb

Great news!! :x::x::x:

determinedjoan

Delighted to read your post; v well done 👍 u guys. All the v best with chemo & surgery :x:

spannerkate

Hi @HopefulWife I just wanted to say hi and that I'm glad the meeting was positive today. When my boyfriend was diagnosed in December he had 30 tumours in his liver, and after 3 months of chemo there's only 3 (or maybe 4) left. So chemo really can work wonders! Do you know which type he will be having? Wishing you both all the best :x::x::x:

Lirio345

Really pleased that you have a plan @HopefulWife, take very good care and please stay in touch, Kim :x::x:

HopefulWife
Quote from @spannerkate:
Hi @HopefulWife I just wanted to say hi and that I'm glad the meeting was positive today. When my boyfriend was diagnosed in December he had 30 tumours in his liver, and after 3 months of chemo there's only 3 (or maybe 4) left. So chemo really can work wonders! Do you know which type he will be having? Wishing you both all the best

Wow what a success story that's amazing. He will be having oxaliplatin capecitabine (capox) :x::x:

spannerkate

@HopefulWife that's what Richard had too. He's been incredibly lucky so far. I hope it works wonders for your husband too :x::x::x:

greyhound gal

It’s always good to have a plan! :x::x:

mem

Yay! that is good news @HopefulWife. Bring on that treatment and here's hoping for some fab results.
Lots of love to you both :x::x:

terri m

Glad it was positive news @HopefulWife hoping treatment goes well for your dear husband.. Take care of you too xxx💖

GD62

Hello @HopefulWife sorry to read about your young family and great news spread is only to liver. There has been really great advances in liver treatment as had peritoneal and liver mets (3) gave me 6 months to live over two years ago. His fitness is a definite plus good luck God bless hugs :x::x::x:

Zara

Hi @HopefulWife just wanted to give you another positive story. My dad was diagnosed February 2017 with bowel spread to liver. He was initially told he had a few months but after mri and ct scans we saw the consultant who said the plan was 3 months chemo, bowel operation, liver operation and then possibly 3 months more chemo. Fast forward to today and he is currently stil having clear scans and shows no evidence of disease. I know it's so scary and feels like the end of the world but his team will have a plan in place. Just take it a day at a time. Sending you lots of love :x::x::x:

HopefulWife
Quote from @Zara:
Hi @HopefulWife just wanted to give you another positive story. My dad was diagnosed February 2017 with bowel spread to liver. He was initially told he had a few months but after mri and ct scans we saw the consultant who said the plan was 3 months chemo, bowel operation, liver operation and then possibly 3 months more chemo. Fast forward to today and he is currently stil having clear scans and shows no evidence of disease. I know it's so scary and feels like the end of the world but his team will have a plan in place. Just take it a day at a time. Sending you lots of love

Wow that's amazing thank you so much :x:

HopefulWife

Thank you for all the further support :x:

jj

@HopefulWife so pleased that the results show no further spread and a plan or treatment is in place. It’s the waiting for the results that really raises my BP and gives me sleepless nights. So now you can move forwards instead of waiting.
All the very best
Regards

HopefulWife

Thank you again everyone for your support. My husband started his treatment and has had 2 rounds of capox. He tolerated the first round very well & 2nd round not so well. He was due to have 3rd round Friday but it was cancelled as his ALT levels were 360 & should be 50. They are going to test him again next week to see if they can start him again next week. Please would you mind offering advice? We are still so new & naive on this journey. Please let me know if this is nothing to worry about and if there's any positivity we can draw from this other than him having my birthday weekend off chemo :)
Love & prayers to you all
:x::x:

Bear G

Hi @HopefulWife
Sorry to hear your husband’s third cycle has been postponed. It’s a frustrating thing to have happen but really isn’t anything to worry about.

Postponements and dose reductions are a routine part of chemo for most of us. If his team were particularly worried they’d have said something to him.

Probably the best advice is for him to rest a lot and lots of really nutritious food to help his body get in shape for his chemo.

Oh, and to do things that make you both laugh!

Hope that helps and that you have a lovely birthday.
Big hugs
Bear
:x::x:

GD62

Hello @HopefulWife sorry to read about delay in treatment but hope you’re sorted soon 🤗 hugs :x:

Lirio345

Hello @HopefulWife, sorry to hear about the delay in your husband receiving the third round of treatment but we do read of this a lot on this forum and there should be no effect on the efficacy of the chemo.
I would certainly try to embrace this unscheduled mini break and celebrate your birthday in style! Take very good care, Kim :x::x:

HopefulWife

Thank you feeling better now :x::x: