Husband Just Diagnosed

Hi ellen93

Welcome to the forum !

So sorry your husband is having to face this situation !

I view the PET scan a bit differently ! But I can completely see your point from your position . My mum had a CT scan at diagnosis and her spread was so obvious there was no PET scan required ! So that’s another way of looking at it  ! There was no doubt in their minds or clarity required as it was self evident ! However for what people report here some CT scans have better imaging than others ! The machine my mum used in the last few years is much more sophisticated than the start of her journey ! So there can be factors like that where another machine can add a different perspective! The first CT machines the tumours needed to be over 5mm , laterally they were able to watch a lung met grow from 2mm ! A grain of rice really !

The other reason I view the PET scan differently is they always gave her one just before she made it to surgery !

I could very well be an area they require more information on but hopefully more to rule out than in !

The surgeons like as much information as possible from as many angles when they are looking at surgery ! They put them up in theatre I think ! 
More clarity required but definitely not something obvious to them so still a lot of hope there !

Just my ramblings but hopefully nothing they can’t take care of !

Horrible time waiting for all the scan information to come through ! We are here to support you both !

Take care ,

Court 

Hi ellen,

I'm the wife of a newly diagnosed chap, who is recovering in hospital. He was Stage 2 and had a PET scan. I guessed it was to prepare for the surgery. He had so many appointments beforehand our feet didn't touch the ground. I think I am worrying more now with more time to think!!!! Good luck to you both. xxxx

Hi Ellen

I've had x2 PET scans as part of my treatment - they offer much more reassurance ref the presence of metabolically active tumours where there is any doubt. CT scans are like a scan by satellite from orbit - they're good at seeing limited detail over a broad area, but MRIs of individual organs, or a PET scan, will give a more targeted picture and confirm or otherwise whether they are looking at all the areas they should.

I had a 6" section of bowel removed but they'd seen 'cysts' on my liver at scans prior to that surgery, which turned out to be x4 metastatic tumours following PET scan.  It's belt and braces to do the PET scan - they don't offer it for everyone, but it will give the best possible information ahead of treatment.

Hi Everybody..I'm sorry I'm just learning to use this forum so apologies if I'm responding all the wrong way....thank you for all your reassuring words..I guess you just can't second guess it in that only the MDT really know why they want the PET scan..I rang the consultants secretary on Monday as we still haven't had a call for the PET scan..she doesn't know my hubby's case of course but tried to reassure me that PET scans have to be done at St Thomas in London as our local hospital doesn't have one and that it would have been referred as urgent but we just have to wait..she told me most bowel cancers are slow growing so a few weeks won't really make a difference in the scheme of things but it's just the knowledge its there and could be spreading..its just feels so urgent to us so hard to accept...my hubby thankfully is reasonably well with just a few trips to toilet a day and some discomfort in his lower abdomen but we are vigilant about signs of any blockage..he is eating like a horse and moderately exercising so I'm.hoping that will prepare him for any treatment once it starts...I did want to ask one thing....he had the colonoscopy 4 weeks ago but they could not go any further than his sigmoid due to growth causing significant narrowing..they took 12 biopsies in that area but has got some tenderness in his upper abdomen..do you think its linked to any residue effects from the colonoscopy? We are worried its his liver..any thoughts would be welcome..

Hi Ellen,

My husband wasn't blocked by the cancer, but his bowels didn't seem the same after the colonoscopy. Since the operation we are learning that the bowel does not like being tampered with. But maybe you should get it checked out..

We also had to wait a couple of weeks for a PET scan. We were told there was a back log due to Covid! Also be prepared for them finding other things wrong with you picked up on the scans. Its like having an MOT.

Hi Ellen

In my experience with my health authority it took a good week from MDT for the request for the PET scan to make it to the booking team, and for them to then call me to make the appointment, despite it in theory being just a few clicks to do.  I was similarly stressed out by the delay (and this was on top of delays in booking my CT scan that preceded it).

If the request has gone to St Thomas's then it shouldn't be taking too long for them to get in touch.  I'd give it a couple of days and maybe call or e-mail your Macmillan nurse. They may be able to chase, if they think it's taking too long, or give you a contact number for the PET scan booking folk to make sure they've received the request and when you can expect an appointment.

On the subject of PET, I'd try and get a morning one, as from memory you have to fast from the night before until after the procedure.  The scan itself is another CT scan - the difference is the injection of the radioactive sugars which takes about an hour to circulate the bloodstream before the scan.  For me I was asked to lay on a bed and not engage my brain in any way, so no phone or book so as to avoid stimulating your brain. You also then need to stay away from people, particularly young and anyone trying to conceive, for several hours afterwards until the dose has passed through the system. It used to be overnight, but they seem to have changed it between my x2 PET scans to just a few hours. St Thomas's may have their own procedure, but being a London hospital and depending on how you intend to get there it's worth being aware of.

Upper abdominal pain - could that just be waste backing up in his bowel due to the obstruction lower down? Presume he's taking softeners to help everything pass?

I had some discomfort in the chest around the time of my original diagnosis, which I put down to stress more than anything else, although my early scans showed my spleen was enlarged (which can happen as a result of a bowel blockage) so it may have been that. My spleen is normal again now.  Despite having large wedges of my liver removed since I don't think I could ever hand on heart say any discomfort was directly from my liver - the nearest pain receptors from the liver are in the shoulder, as I found out after my first liver resection when 25% of it was removed and that's where the pain appeared as the drugs wore off!

I know it's tough to deal with - I found through counselling that my best coping strategy was to try not to worry about known unknowns, but to focus on goals over the next 2 weeks that I had control over. Everyone is different and you and your husband may deal with things differently depending on your personalities.

Thank you to all the positive words of reassurance and encouragement...it really helps to hear of other people's stories and waits for tests and results...I'm 57 so I think the way they deal with cancer is so different now as when I was younger they seemed to rush you in to hospital and operate straight away so I think I need to train my brain to remember things are very different now...I also didn't have many positive experiences of cancer survival when I was younger so the word is so frightening to me but I am beginning to see just from this forum alone that the treatments are amazing and it's not always bad...I just want to be so strong and positive for my hubby...I think I am doing that OK and this forum keeps me sane as I can get any niggle fears thrashed out by listening to others...thank you all again...

Hi Ellen, 

I know exactly what you mean about bad cancer experiences. I am a little older than you (76) and until 14 years ago had no good experiences of cancer. My husband was diagnosed at age 60 with throat cancer, exactly what had killed my grandad 50 years earlier. But 50 years ago there was no radiotherapy, no feeding by tubes, etc. It was hard, but my husband came through that experience, learning to speak with a speech valve as he lost his larynx.

He now faces a new battle with bowel cancer. I myself had womb cancer 4 years ago, and was amazed by the marvellous machines they have these days. Scans are a reasonably new thing. None of that when I was pregnant!! They really do help to plan surgery.

I think cancer is very different these days, due to earlier diagnosis and new treatments. xx.

HI Everybody...so Tony has a PET scan booked for Saturday at St Thomas Hospital in London so overall only a week since it was requested so we are pretty happy with that...the next MDT is Wednesday 17th November so we are very much hoping we will know more after then..we've had a few rocky days worrying the cancer is spreading all the time and thinking the worst but now we have the scan appointment we feel a bit closer to know what we are dealing with and feel slightly more fatalistic about what is to come...I read a story today about a lady who was told her partners bowel cancer was inoperable...this has worried me as is this often the case

Hope it goes well tomorrow ellen93. That’s pretty quick !

Scans are so challenging. I spent may nights trying to interpret the missing information. As you only get small bits of information. In that regard I prefer the American approach as I like to understand the details .

That was unfortunate you read that story . It can cause doubts to arise at this stage in the process . If that should ever happen they would try and downsize the tumour with treatment first . In fact I am convinced there has been recent research as I see a shift in using this approach. Changes like that normally follow long term research which shows better long term survival stats . Once the tumour is downsize if possible they can get better margins . My mum’s tumours disappeared. Treatment has turned inoperable to operable twice .

You are only human and it used to happen to me . It took me a long time to read others situations and it not to trigger a response. 

Hope all goes well tomorrow.

Court