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Stage 4 bowel cancer

kevinr

Back here with cleanish bowel but have cancerous peritoneum nodules - trying for HIPEC. Help!

Ok so hello everyone in Stage 4. I'll keep it shortish

Bowel tumour split ling March 17, emergency op to remove.

12 Folfox Adjuvant chemo until Oct 17 to help prevent recurrence, didn't work, :(, pains in abdomen returned, banged tables to bring scans forward from cancerversary

Got CT, then PET CT, then Laparoscopy in December/January - showed 3 small nodules in peritoneum and referred to Basingstoke for likely HIPEC by surgeon - they have links with Durham and she said 'the good news is' while referring to Basingstoke - excellent! No problem there then?

No spread through blood/lymphs - new cancer likely 'fell off and attached' from the original one.

But - Oncologist much less upbeat about surgery, it's 'experimental' currently on Folfiri which 'will not cure' , have scan after 6 and number 4 going in portacath now - yuk no sleep on the Dexa and sick as anyway

Oncologist wants another 6 after that. Bleeuuurgh...
.
Marvellous advice on Shine Facebook Group for young adults with cancer - I'm 48 so sneaked in at the back, suggested I go to GP for second opinion/referral to Christie/Imperial

Told Oncologist, she said go ahead through pursed lips. I'm not after another opinion as much as want to join 3 queues as I've heard Basingstoke is picky/takes Private first

Any advice welcome for my GP appointment on Friday and anything else you marvellous people can give?

Bear G

Hi @kevinr
I’m sorry to hear of your journey but glad that you’ve found us and hope you’ll find the forum to be a helpful and supportive place
I know Imperial has set up to take on people with more advanced disease than Basingstoke and are getting good results.
Definitely worth trying, fingers crossed!
Big hugs
Bear
:x::x:

kevinr

Hi @Bear G

Thanks for the kind words.

I found this place last year and with all due respect, passed on what I could but then got more involved with the Shine group with me being but a boy and whatnot ;). I'm already overwhelmed, as is my better half, with the responses so far, so will stick around to hopefully pass on my own experiences in the future.

All the best

HH79

Hi @kevinr! I’m Helen from Shine ;) still makes me cross your Onc calming HIPEC experimental!! There’s a few on here who’ve had it and when just Peri mets it’s on a curative path!! Good luck! Let us know how referrals go ..:x::x:

kevinr

Hi @HH79

I'm going mad, I've just replied saying you must be Helen from Shine and I have your brilliant advice all printed out for tomorrow but the reply is different Anyway Go Shinies!! ;D

Bridget55

Hi @kevinr. Feel free to ask any questions directly should you go down the Hipec route. :x:

kevinr

Thanks @Bridget55

I fully intend to, busy reading other stories right now so praying to come back with one of my own and maybe pass on helpful stuff in future. Love this place...

mountainwoman

Hi @kevinr.

I had CRS and HIPEC at Basingstoke last August. They are very experienced and very good at what they do! They do sometimes take a while to reply however- I think it took 7 weeks for my referral to go through and for them send me an appointment. The op. is big but fine-you would be well looked after.
I have since had 9 rounds of Folfox and have just had my end of chemo scan come back clear so all good for now :)
My advice would be if you get a choice of where to have Hipec go with the most experienced as it's a complex procedure(but definitely not experimental).....!
All the best.

kevinr

Love reading stuff like this! Way to go @mountainwoman !

kevinr

Well the GP appointment went ok I suppose. On other matters she is recommending me for DS1500 PIP as if the op isn’t actually offered then I may qualify. Still at work on OH referral but they are looking at Ill health retirement in case the diagnosis goes even further south.

She took the names of Christie and Imperial surgeons to support but did warn NHS referrals were rare.

I also have my - after 6 Folfiri - CT scan confirmed for 1 May so it’s been a while since scanxiety, welcome back, I think... her eyes lit up when I asked about private referrals but I mentioned them to ask cost, don’t have insurance, and the smile turned upside down. Many thousands apparently. Ho hum.

Thinking of contacting Imp/Christie direct when CT scan is in. Or now but don’t want a wait and see reply. Or maybe just to get on radar. So many questions sorry.

Head is full.

HH79

Hi @kevinr what bollocks about NHS referrals rare!!
So most established are Basingstoke & Christie. I went Christie 2nd opinion after too many times hearing people getting
a yes from others after a no from Basingstoke. Although Imperial closer, my Oxford team said we’ve long experience of sensible people at Basingstoke & Christie. That said, Jamie Murphy @imperial has amazing CV having worked both at Basingstoke & Mayo, USA. I know Basingstoke do a lot of Peri only mets so May get approval. I only know a couple who had hipec Basingstoke via NHS on forum, most went private insurance. Christie is purely cancer hospital and amazing. That’s only my experience though but f there’s one area that has obsessed me over last 18m is who has had hipec, from where and with what mets lol!!!! :x::x:

GD62

Hi @kevinr

Your head is full and that is natural. I know how you feel as the CRS and HIPEC costs about £70 to £80 grand, and I never took out private cover unfortunately, but don't feel that the NHS has short changed me.

Good that you at least will get PIP, as similarly to you I am meant to be en route to the local crematorium but still working in the NHS and my weekend job, was given six to nine months.

You will probably get maximum PIP don't know how walk just tell them worst case scenario as chemo can unexpectedly knock you for six especially with a secondary infection. NHS referral are not too rare as @Bear G said there are two more hospital doing CRS and HIPEC .

Anyway all the best :x::x::x:

kevinr

Thanks @HH79 you have been truly inspiring to me, I just read your posts and feel re energised. I must get my better half to join as I copy yours and other replies to her! She is fantastically optimistic so loves reading the drum banging ones.

@GD1962 again thank you and wow how much!! I would rather not qualify for PIP obviously but as Wayne Gretzky apparently said, I want to head to where the puck is going not where it is now - I had the secondary infection after round one of Folfiri after managing a whole Folfox without. Think I have enough to be going on with. The DWP have asked for my passport/driving license as I'm off their radar - Macmillan have never heard of this as I have given them my NI number and lived where I live forever. Ho hum

I can't thank everyone enough and if I can give even half back with experience/knowledge in the future that will go some way to payback.

jinnyp

Hi @kevinr I have just been awarded higher rate PIP which my Macmillan nurses applied for with DS1500 and had to send copies of driving licence and passport and a bill/appointment letter to confirm address and they said that it was standard for that type of application. I got awarded the higher rate for both and also now have a blue badge which they applied for although I feel a bit of a fraud having that! If your GP/Oncology nurses will do a DS1500 for you then I was told that it bypasses the assessments and the DWP don’t contact you.

I have 2 peri nodules and have been referred to Basingstoke but I also have multiple liver mets so they are looking at feasibility of resecting that before they consider HIPEC. I don’t have private insurance and my oncologist referred me a couple of months ago.

Keep banging the table and get as many referrals as you can - you have every right to explore all possibilities. Good luck!!
Jane :x::x::x:

Bear G

Just a thought on the HIPEC availability perception, I’m not surprised your GP thinks it’s a rare thing. This is still a relatively new technology and it’s not that long ago we had people on the forum who’s oncologists hadn’t heard of HIPEC!
This is definitely an area for persistence.
There are more and more centres doing this across the country and I know Imperial are actively looking for patients who aren’t accepted by Basingstoke as they have approval to treat more advanced cases.
Hope you get something sorted
:x::x:

HH79

Hi @kevinr do look at PIP...its good support. You complete the form based on your worse days eg whilst good days I get out etc, when I was on Folfoxiri some days stayed in, too ill. You don’t have to be declared. 12m or less etc for enhanced PIP rate for mobility & daily living. The D1500 is for 6mth issue ...I’ve been looking at my pensions and can get all as lump sum / tax free if less than 12m to live but whilst we never know (like anyone, not just cancer px!) I don’t want to sit in that box so I’ve just left it ...maybe look at another day or just cash it in but with the tax for early ill health ...oh the stuff we learn about!!!
Yes good luck! See I think you’re Peri mets and not elsewhere so Basingstoke good but do look at others for sure :x::x:

kevinr

Thanks @HH79 , @Bear G and @jinnyp again, I really do appreciate the level of support here, can't wait for Monday to get cracking!

I have a double appointment with GP on Tuesday as I over ran somewhat this week. She is so keen to help though and suggested I come back. Reception said no chance, I mentioned it was for a potential cancer operation to get me off the incurable list, that I was hoping to get referred for, and boom, all of a sudden there is a double appointment available almost immediately.
Amazing what flashing the big C card can do.;)

Oh and @HH79 I'm civil service and our offer for 'terminal' is 5 x pension lump sum, but there are also two tiers of enhanced early pension before that, one is not being able to work ,where you are, again and the higher tier for not being able to work, anywhere, again.

Depends what the Medical Advisor agrees to. The higher tier enhances your service to normal retirement age and lower gives you early pension, not enhanced but not actuarially reduced either.

Bear G

Great to hear your GP and her staff are being so supportive - spot on!

mountainwoman

Good to hear people are helping you.
I had my operation at Basingstoke on the NHS-it was never suggested I would have to go privately so I wouldn't worry about having to pay. Whilst we don't know all the details a small amount of spread in the peritoneum sounds like the sort of thing Basingstoke take on. The referral can be made much easier if your GP/surgeon can forward up to date scans etc. to them to review.
Take care.

kevinr
Quote from @mountainwoman:
Good to hear people are helping you.
I had my operation at Basingstoke on the NHS-it was never suggested I would have to go privately so I wouldn't worry about having to pay. Whilst we don't know all the details a small amount of spread in the peritoneum sounds like the sort of thing Basingstoke take on. The referral can be made much easier if your GP/surgeon can forward up to date scans etc. to them to review.
Take care.

Thanks @mountainwoman I should know soon as I have my next CT scan coming up. Great to hear you made it there, I was worried it was for the well off and uncomplicated only.

HH79

Hi @kevinr yes defo true the Peri spreads (and not too much of it) Basingstoke should ‘welcome’ so to speak...sorry I was mixing up thinking you hadn’t heard back from them or maybe it was your Onc reluctant to send. If for some reason Basingstoke won’t take you on then at least you’ve the other two to look at :x::x: