Here we go again !

Hi HazG

Think I may be able to identify with your issues. My husband has just found out his bowel cancer is back after having the operation to remove it all back in January. He got a blood test at his follow up appointment back in May and we went away happy as `pigs in sh***` because she told us he was recovering really well and everything was fine. Little did we know though a couple of weeks later a letter would come through the letterbox that was about to bring our world crashing down again. The blood test had shown his CEA markers had gone up and they wanted him to go for the CT scan that had been scheduled for later this year and was being brought forward. Don't know how high the markers had risen she didn't actually say. Well we got sent for at the hospital 2 weeks ago and she dropped the `bombshell` that the cancer had come back. It's back in his stomach lining and showing up slightly I think she said in his pelvic area. Since then I have what you could call been on `autopilot` I just cannot function through the day or focus on anything else but this. Where the cancer is this time they can't operate but don't know if that means they won't be able to operate at all. She said the cancer though is `slow growing` I did pick that up I don't think I heard anything else after that though I was trying to listen but think my head was away in outer space somewhere. We see the oncologist this coming Thursday to hopefully get a new treatment plan in place and really it can't come quick enough waiting for this has been like an eternity. He also has type 2 diabetes and the blood test also showed that his blood sugar levels has shot right up too so our GP has prescribed an additional tablet for him to take along with his Metformin. We're starting to eat sensibly again too in a hope this will help because when he came out of hospital after his op and recovering at home he was eating just about everything and anything. The ironic thing is that my husband is the one that seems to be holding everything together and its him that has the cancer. I'm just a mess. We just pray that they have picked up this latest cancer early as they did with his last one and can do something to either get it under control so it doesn't go anywhere else and can contain it to a stage where it's finally gone or something that will kill any potential cancer cells looming. Best Wishes to you Haz

Vicky xx

Hu vicky thank you for replying, I'm sorry to hear about your husband its so stressful isn't it.

Did he have chemo after his surgery ? 

I'm a bit of a complicated case I had emergency surgery in 2019 for sepsis and a perforated bowel I ended up with an ileostomy minus half my large bowel us a mucus fistula aswell which I hated from day one, I was in icu on life support for a month and in icu for three months I was then moved to rehab hospital.

All was well took me a good year to recover then 2020 I noticed a lump growing by my mucus fistula contacted stoma nurse she wasn't concerned so it was left then we went into lock down I desperately tried to get someone to look at it finally I managed to get hold of a stoma nurse came out to my home to look at it she was very concerned contacted my surgeon and gp,I was seen the following week after biopsy and scans and av flexible  sigmoid it was confirmed cancer in my sigmoid colon it was removed 2021 I then went through 5 cycles of chemo,had two clear scans now this.its never ending.

Good luck to your husband x

Hi Haz!

Yes it is VERY STRESSFUL!! No my husband didn't have chemo or radiotherapy after his operation. He had chemoradiation (radiotherapy sessions and chemo in tablet form) before surgery to shrink down the tumour which it did and they were able to operate on schedule. The tumour ironically had been lying dormant for 3 to 4 years beforehand and the symptoms just began to surface at the end of 2020 and he was officially diagnosed last July after a series of scans etc. He wears a permanent stoma bag as well now too. I asked his oncologist when we met up in February this year at his follow up appointment if he would need anymore chemo or radiotherapy and he told us no. He said along the words of `If there is nothing needing done at the present time, they don't start or do anything`. I just wonder now if they did give him extra chemo or radiotherapy treatment it may have picked up these stray microscopic cells they say can get away and are hard to detect. We see the oncologist again this Thursday as I said I just hope there is going to be a good management plan in place for him. 

Vicky x

Well I am holding out on the holiday front for you that the plan won’t be derailed .

Its distressing and I can only say if it is a met it’s is not obvious and hopefully not raging through your body . My mum’s pet scans have only ever picked up what’s on the CT scan . However over the years there has been the odd person who has had a small met pickup on a PET scan not obvious on a CT scan . Quickly dealt with .

However I have also come across a few people who have been scanned all over serval times and for some unknown reason have a higher CEA level . One man I communicate with sits really high but nothing has shown for years . No one knows why .

It is very hard dealing the with all the uncertainty and life changing circumstances with your sister . You are allowed time to let this emotion surface and hopefully get into a better place with the scanning too .

One thing for sure you need your holiday and it took time for us to get brave but once we did it all cancer appointments etc were structured around life where possible not the other way around as it had been in the early days .

Here is you need to chat .

Court 

Thank you court 

I'm not giving up hope and today I have my positive hat on, I'm hoping it's just a blip and my levels have a mind of their own.

I did the worse possible thing and Googled where usual spread is liver and lungs then I seen yoh have to have an endoscopy to take a biopsy of the lung well that put my right in overvdrive  one thing I've always dreaded is that down the throat !!

Anyway let's not go there. I'm just wondering why they do ct scans if they are not showing up any signs of spread  and when they told me they were NED it wasn't correct.  I keep holding to the fact that I had one 6 weeks ago and it was clear surely nothing could have grown in that time.

Xxx

Hi ,

I don’t think they do very many lung biopsies . More if it was a primary tumour to find out what it is . They used to be concerned about needle tracking . My mum only ever had a Ct /pet scan and they just watched her scans . After two years they decided it was growing at a rate suspicious of cancer and removed the whole thing . No biopsy involved .

Hope that puts that helps .

You sound in much better spirits today .

A clear CT six weeks ago is always welcomed news . My mum had a run of them and after several months it popped back down again .

Take care ,

Court