Effing cancer is an effing effer, frankly

[sas62]

Had a CT scan 3 weeks ago, 18 months after bowel cancer op.

I'm not due my next regular consultant's appointment for another 5 months or so.

After the prior CT scan, I rang the colorectal nurses after a couple of weeks and they fed back over the phone that everything was OK.

This time I again phoned the nurse (last Thursday) and left a message asking if the result was available. I didn't get a call back.

Yesterday I got a letter for an appointment with the consultant in just under 2 weeks.

I'm a bit worried that an unscheduled consultant appointment has been arranged - presumably to give the CT scan result. Unless I'm missing something it's hardly likely to be good news?

Wondering whether to ring the colorectal nurses for more info but not sure they would/could give out any additional detail by phone?

[motco]

PostHeads123 said:

A question I have is why after cancer treatment in the post treatment scans why don't they scan the head? My dad originally had lung cancer was treated for that given the all clear after that he was given full body scans what we didn't know at the time was that didn't include the head, apparently not scanning head is standard procedure. His lung cancer metastases to the brain, first we knew of it was he crashed his car, that same week he had a scan earlier and given all clear, only after the crash did they scan the head though and extent of the metastases was found he had no chance by then. Lung cancer is well known to metastase to brain if it been caught earlier he might have had a chance.

Edited by PostHeads123 on Thursday 6th June 11:42

I have wondered this too. Breast cancer can metastasise to the brain as well and no head scan is done in that case either. I suppose it might be something to do with radiation dosage. I know there is some concern that the x-rays might raise the risk of tumours. One of a number of reports

[Stan the Bat]

sas62 said:

Had a CT scan 3 weeks ago, 18 months after bowel cancer op.

I'm not due my next regular consultant's appointment for another 5 months or so.

After the prior CT scan, I rang the colorectal nurses after a couple of weeks and they fed back over the phone that everything was OK.

This time I again phoned the nurse (last Thursday) and left a message asking if the result was available. I didn't get a call back.

Yesterday I got a letter for an appointment with the consultant in just under 2 weeks.

I'm a bit worried that an unscheduled consultant appointment has been arranged - presumably to give the CT scan result. Unless I'm missing something it's hardly likely to be good news?

Wondering whether to ring the colorectal nurses for more info but not sure they would/could give out any additional detail by phone?

If they have already told you it's ok , I would assume it is.
They always called me in to give any type of results.(i.e. good or bad)

Bowel cancer same as you.

Make sure they give you a colonoscopy every two years.

[sas62]

Stan the Bat said:

sas62 said:

Had a CT scan 3 weeks ago, 18 months after bowel cancer op.

I'm not due my next regular consultant's appointment for another 5 months or so.

After the prior CT scan, I rang the colorectal nurses after a couple of weeks and they fed back over the phone that everything was OK.

This time I again phoned the nurse (last Thursday) and left a message asking if the result was available. I didn't get a call back.

Yesterday I got a letter for an appointment with the consultant in just under 2 weeks.

I'm a bit worried that an unscheduled consultant appointment has been arranged - presumably to give the CT scan result. Unless I'm missing something it's hardly likely to be good news?

Wondering whether to ring the colorectal nurses for more info but not sure they would/could give out any additional detail by phone?

If they have already told you it's ok , I would assume it is.
They always called me in to give any type of results.(i.e. good or bad)

Bowel cancer same as you.

Make sure they give you a colonoscopy every two years.

They haven't given me any information on this scan.

For the prior scan they were happy to tell me over the phone.

My last colonoscopy was a couple of months ago and that was ok so I'm probably worrying over nothing.

Thanks for the info.

[Stan the Bat]

If you had a colonoscopy a few months ago then I would almost certainly think everything is ok.

Bowel cancer is usually very slow to progress.

Did you have the CT just a few months after the colonoscopy---any idea why ?

Sorry if I have misunderstood.

[sas62]

Stan the Bat said:

If you had a colonoscopy a few months ago then I would almost certainly think everything is ok.

Bowel cancer is usually very slow to progress.

Did you have the CT just a few months after the colonoscopy---any idea why ?

Sorry if I have misunderstood.

The appointments seem a bit disconnected. Having checked my calendar, the most recent colonoscopy was quite a lot earlier than I remembered.

Initial op (Anterior resection) Sept 2017
Stoma reversal Jan 2018
CT Scan April 2018 - results given by phone.
Colonoscopy Mid Sept 2018 (the protocol seems to be 1 year and 4 years after operation)
Consultant appointment Late Sep 2018
Consultant appointment April 2019
CT Scan May 2019

And now just received an unplanned consultant appointment for mid June.

[elise2000]

Hi all

Has anyone any experience with AML? Mum was diagnosed a couple of months ago and is undergoing treatment.

Thanks

[Biggles111]

elise2000 said:

Hi all

Has anyone any experience with AML? Mum was diagnosed a couple of months ago and is undergoing treatment.

Thanks

Sorry to hear this, it is a tough one but survival rates are improving. Take it a day at a time at first - the picture becomes clearer over time, especially once they have completed analysis (cytogenetics) on the bone marrow sample to identify the particular mutations - this often means a really targeted treatment plan can be used.

I was diagnosed May 2014 and have just got past my 5th anniversary. I had heavy chemo for 4 months, unfortunately relapsed a year later but then had further treatment and since then am good.

Diagnosis is often the hardest part as the symptoms (frequent infections, night sweats, bruising) are fairly general. Once you're in the system the NHS does kick in very well for such serious conditions. How old is your mum and what sort of treatment is she having?

http://www.Bloodwise.org.uk are a good resource for you and your mum, I have quite a lot to do with them.

I see you're in the SW - I am based in S Devon and was treated in Torbay and Derriford. Do PM me if I can help you or your mum in any further way, happy to answer absolutely any questions.

Best wishes,
Brett

Edited by Biggles111 on Friday 7th June 15:20

[Stan the Bat]

sas62 said:

Stan the Bat said:

If you had a colonoscopy a few months ago then I would almost certainly think everything is ok.

Bowel cancer is usually very slow to progress.

Did you have the CT just a few months after the colonoscopy---any idea why ?

Sorry if I have misunderstood.

The appointments seem a bit disconnected. Having checked my calendar, the most recent colonoscopy was quite a lot earlier than I remembered.

Initial op (Anterior resection) Sept 2017
Stoma reversal Jan 2018
CT Scan April 2018 - results given by phone.
Colonoscopy Mid Sept 2018 (the protocol seems to be 1 year and 4 years after operation)
Consultant appointment Late Sep 2018
Consultant appointment April 2019
CT Scan May 2019

And now just received an unplanned consultant appointment for mid June.

I am having colonoscopies every alternate year with CT scans in the intervening years.

[elise2000]

Biggles111 said:

Sorry to hear this, it is a tough one but survival rates are improving. Take it a day at a time at first - the picture becomes clearer over time, especially once they have completed analysis (cytogenetics) on the bone marrow sample to identify the particular mutations - this often means a really targeted treatment plan can be used.

I was diagnosed May 2014 and have just got past my 5th anniversary. I had heavy chemo for 4 months, unfortunately relapsed a year later but then had further treatment and since then am good.

Diagnosis is often the hardest part as the symptoms (frequent infections, night sweats, bruising) are fairly general. Once you're in the system the NHS does kick in very well for such serious conditions. How old is your mum and what sort of treatment is she having?

http://www.Bloodwise.org.uk are a good resource for you and your mum, I have quite a lot to do with them.

I see you're in the SW - I am based in S Devon and was treated in Torbay and Derriford. Do PM me if I can help you or your mum in any further way, happy to answer absolutely any questions.

Best wishes,
Brett

Edited by Biggles111 on Friday 7th June 15:20

Hi

Thanks very much for this. Nice to hear of people getting through these things.

She’s in her 70s and being treated in Bristol. The NHS staff have been fantastic. Communication is a bit iffy at times, but apart from that it’s been an excellent service.

She’s had 1 round of chemo. 2nd one delayed a week due to a broken fridge... then delayed a further week as they want to do a biopsy on something they’ve spotted in her abdomen. They’ve know about this for over a month though, so hoping it’s nothing serious.

Glad to hear your treatment went well and you’re out the other side.

[Biggles111]

elise2000 said:

Hi

Thanks very much for this. Nice to hear of people getting through these things.

She’s in her 70s and being treated in Bristol. The NHS staff have been fantastic. Communication is a bit iffy at times, but apart from that it’s been an excellent service.

She’s had 1 round of chemo. 2nd one delayed a week due to a broken fridge... then delayed a further week as they want to do a biopsy on something they’ve spotted in her abdomen. They’ve know about this for over a month though, so hoping it’s nothing serious.

Glad to hear your treatment went well and you’re out the other side.

No problem. As you have probably seen, the treatment really wipes you out, so between treatment cycles your mum may need some help. We live near my parents, I expected to be looking after them, but it worked out the other way!

Hope things go ok, and do shout out if I can help.

[ecsrobin]

I hope this is the correct place to post having read a few pages I thought I’d try and be a bit selfish and gain some advice from those on here.

In April I dropped my dad off to hospital for a gastroscopy, I thought nothing of it but on collecting him it turned out the camera couldn’t go much further as the bowel was obstructed with a tumour.

3 days later he was rushed to hospital and looked like he was close to dying, tubes everywear a swollen stomach and lots of pain. He was sleeping for most of the day and could hardly talk (gone was the very fit man in his 60’s to a wreck of bone and skin that now hangs off him) eventually they fitted a stoma and after 2/3 weeks he was released.

He started going for walks, joined me for a car show and generally things were looking positive despite what had just happened and what we knew. He even started going back to work for a few hours a day.There had been concerns about spots on the liver so a few scans and were standing by for the results. For me I processed that as it had spread, everyone else took that as just an old liver.

The past few weeks dad has been getting pain all round the body, feeling weak and generally stopped being active and stopped going to work again as it was too much. Sadly last week the news come in that it had indeed spread to the liver and his cancer was stage 4. Everyone was shocked however for me I felt I already knew that.

3 days later his first session of chemo started (last week), the plan is 3 months of chemo and remove the bowel tumour (nothing can be done for the liver I’m told) and then possibly some more chemo.

A meeting this week that I was unaware of until it had passed had them reviewing my dads condition the outcome of which is that he’s too weak to move to the stronger chemo as planned - he was even falling asleep at the meeting his body is exhausted. They will review him and take scans every 12 weeks, my sister was at the meeting and asked the question of life expectancy but my dad broke down and said he did not wish to know.

Now I’m not an emotional kind of guy however I also know I’m probably due a derailment any time soon but it got me thinking to the point that if that’s even being discussed then the outlook is slim, my mind says I would be happy if he saw to the end of the year but speaking to my sister it’s always like it’s probably tomorrow. When I speak to my dad it’s “feeling a bit painful but ok” so I never truly get a gauge of what’s happening.

The bit I struggle with is how my mum will cope if/when he goes, she no longer drives works only a couple of days a week and still a few years off retirement age it really does keep me worried. I want to sit her down and discuss financial plans so she can live whilst he’s still here but I think even broaching the subject may cause a bit of a breakdown.

And so that’s the story of the last 3 months in our family!

[AJB88]

ecsrobin said:

I hope this is the correct place to post having read a few pages I thought I’d try and be a bit selfish and gain some advice from those on here.

In April I dropped my dad off to hospital for a gastroscopy, I thought nothing of it but on collecting him it turned out the camera couldn’t go much further as the bowel was obstructed with a tumour.

3 days later he was rushed to hospital and looked like he was close to dying, tubes everywear a swollen stomach and lots of pain. He was sleeping for most of the day and could hardly talk (gone was the very fit man in his 60’s to a wreck of bone and skin that now hangs off him) eventually they fitted a stoma and after 2/3 weeks he was released.

He started going for walks, joined me for a car show and generally things were looking positive despite what had just happened and what we knew. He even started going back to work for a few hours a day.There had been concerns about spots on the liver so a few scans and were standing by for the results. For me I processed that as it had spread, everyone else took that as just an old liver.

The past few weeks dad has been getting pain all round the body, feeling weak and generally stopped being active and stopped going to work again as it was too much. Sadly last week the news come in that it had indeed spread to the liver and his cancer was stage 4. Everyone was shocked however for me I felt I already knew that.

3 days later his first session of chemo started (last week), the plan is 3 months of chemo and remove the bowel tumour (nothing can be done for the liver I’m told) and then possibly some more chemo.

A meeting this week that I was unaware of until it had passed had them reviewing my dads condition the outcome of which is that he’s too weak to move to the stronger chemo as planned - he was even falling asleep at the meeting his body is exhausted. They will review him and take scans every 12 weeks, my sister was at the meeting and asked the question of life expectancy but my dad broke down and said he did not wish to know.

Now I’m not an emotional kind of guy however I also know I’m probably due a derailment any time soon but it got me thinking to the point that if that’s even being discussed then the outlook is slim, my mind says I would be happy if he saw to the end of the year but speaking to my sister it’s always like it’s probably tomorrow. When I speak to my dad it’s “feeling a bit painful but ok” so I never truly get a gauge of what’s happening.

The bit I struggle with is how my mum will cope if/when he goes, she no longer drives works only a couple of days a week and still a few years off retirement age it really does keep me worried. I want to sit her down and discuss financial plans so she can live whilst he’s still here but I think even broaching the subject may cause a bit of a breakdown.

And so that’s the story of the last 3 months in our family!

Very sorry to hear that! My dad (aged 54) had NET cancer of pancreas which spread to liver, he lasted 14 months in the end, most of them months were okish apart from tiredness due to chemo etc but the last month was awful, he basically became a baby again and then wouldn't wake up at all.

The only thing you can really do is make them as comfortable as possible. I know they aren't what you want to hear really!

[ali_kat]

ecsrobin said:

Sorry about your Dad

I’m sat in NGH hand holding my Aunt as we had the call at 7am this morning. I’m hoping what the Cons told me then about expectancy will help you.

Basically she told me that at this stage if they see changes in days, it’s days, in hours it’s hours and so on; there is no real way they can predict however as patients are individuals and some can rally just as easily.

[Ynox]

ecsrobin said:

I hope this is the correct place to post having read a few pages I thought I’d try and be a bit selfish and gain some advice from those on here.

In April I dropped my dad off to hospital for a gastroscopy, I thought nothing of it but on collecting him it turned out the camera couldn’t go much further as the bowel was obstructed with a tumour.

3 days later he was rushed to hospital and looked like he was close to dying, tubes everywear a swollen stomach and lots of pain. He was sleeping for most of the day and could hardly talk (gone was the very fit man in his 60’s to a wreck of bone and skin that now hangs off him) eventually they fitted a stoma and after 2/3 weeks he was released.

He started going for walks, joined me for a car show and generally things were looking positive despite what had just happened and what we knew. He even started going back to work for a few hours a day.There had been concerns about spots on the liver so a few scans and were standing by for the results. For me I processed that as it had spread, everyone else took that as just an old liver.

The past few weeks dad has been getting pain all round the body, feeling weak and generally stopped being active and stopped going to work again as it was too much. Sadly last week the news come in that it had indeed spread to the liver and his cancer was stage 4. Everyone was shocked however for me I felt I already knew that.

3 days later his first session of chemo started (last week), the plan is 3 months of chemo and remove the bowel tumour (nothing can be done for the liver I’m told) and then possibly some more chemo.

A meeting this week that I was unaware of until it had passed had them reviewing my dads condition the outcome of which is that he’s too weak to move to the stronger chemo as planned - he was even falling asleep at the meeting his body is exhausted. They will review him and take scans every 12 weeks, my sister was at the meeting and asked the question of life expectancy but my dad broke down and said he did not wish to know.

Now I’m not an emotional kind of guy however I also know I’m probably due a derailment any time soon but it got me thinking to the point that if that’s even being discussed then the outlook is slim, my mind says I would be happy if he saw to the end of the year but speaking to my sister it’s always like it’s probably tomorrow. When I speak to my dad it’s “feeling a bit painful but ok” so I never truly get a gauge of what’s happening.

The bit I struggle with is how my mum will cope if/when he goes, she no longer drives works only a couple of days a week and still a few years off retirement age it really does keep me worried. I want to sit her down and discuss financial plans so she can live whilst he’s still here but I think even broaching the subject may cause a bit of a breakdown.

And so that’s the story of the last 3 months in our family!

Know how this feels. I think we're getting to the end of the journey for my mum (Bowel cancer diagnosis nearly a year ago, now spread to liver and lungs). I got told to urgently drive to my folks' on Friday (cue driving like a bat out of hell down the M4 in Friday arvo traffic). My mum is pretty much just sleeping now and has gone downhill fast in the last 2 weeks. I just hope the nightmare is going to be over soon and we can pick our lives up.

Cancer is a fking st.

[ecsrobin]

Thank you all for the kind words. So I woke today to messages from the whole family, Dad requesting the hedge cut. Everyone else saying he’s not well

He’s pretty much bed ridden now I’m told so going to pop in tomorrow or Wednesday. I still find it hard not knowing how long as I’ve been volunteering and then at work for the past 15 days. Any of that I could have dropped immediately if required but from what I’ve been told today I’ve probably missed the best of him.

[ali_kat]

Don’t think like that, it will haunt you

It’s not fair, but there is no way you could have known!

Trust me, that’s what I’ve done with Mum & I’m doing now with her sister (who ‘rallied’ yesterday)

Go & see him & make the most of your visit

Ax

[anonymous-user]

ali_kat said:

Go & see him & make the most of your visit

Absolutely this.

[ecsrobin]

I’ve seen him today and he’s looking well. I also cut his hedge as he insisted on it so although it’s not time with him it’s made him happy - he even got me using the shears after I cut through the cable with the hedge trimmer so we will call that a good day

[anonymous-user]

ecsrobin said:

I’ve seen him today and he’s looking well. I also cut his hedge as he insisted on it so although it’s not time with him it’s made him happy - he even got me using the shears after I cut through the cable with the hedge trimmer so we will call that a good day

nice - and good on him for making sure you finished the hedge off! Cutting through the hedge trimmer cable as a way of getting out of half the job!