For people having an ileostomy or colostomy or living with a stoma. Support each...
A support group for patients with Lynch syndrome (also known as Hereditary Non-polyposis...
That's super helpful, thanks so much Court - I'm keen to get as knowledgeable as possible about this - I don't like feeling in the dark. What is MSI? Can they track CEA meaningfully before they rescan?
Thanks so much again xx
Its not reliable in some patients but good for others . All surgical decisions are made from scans but they track it . My mum still gets hers done . Other things like inflammation can influence it but last year hers went up so they added another scan just to be sure . Turned out to be fine . It has some benefits though .
I will look out some information on MSS and MSI . They are part of histology .
Take care ,
Thanks so much again Court. I was able to ask the doc today about the protein marker - they will check this but will need to see what his baseline is 1st. They will also be RAS testing to see if he can have panitumumab. He will have a liver MRI soon & an oncology appt likely to be 3 weeks on from his recent op with the expectation that chemo would start 3 weeks later which sounds reasonable in terms of timing I think. He is not managing to focus on the positive possibilities yet though & our 12 year old (who I have talked to about it very carefully but who is perfectly smart enough to see or sense what I'm not saying) is really struggling. It is going to be a hard road.
Great you managed to have a chat . Sometimes if it’s been unplanned surgery it sometimes gets lost in more pressing issues .
The timescales sound good too and they certainly need the recovery time .
I can understand with such a blow it’s hard to think in positive terms . Thankfully chemo is independent of emotions and hopefully he will be able to see his CEA going down and give him a much needed boost . Very early days for you both .
Maybe focusing on elements he can control like surgical recovery , nutrition and exercise might give him a path forward . Some good information on diet and exercise on the forum just now .
Your child sounds very smart indeed and I agree that they can interpret what is omitted at times . However you sound very wise and well thought out despite what your going through and I would trust your judgements in trying to reduce the fear as much as is possible and get the support around .
It does ease off once you know the plan . You even get into a routine . My parents came to live with me for six months when chemo started as my dad had taken a stroke two weeks before my mum was picked up on a bowel screen . My boys were 9 and 7 at the time and somehow it started to piece together . I actually felt scared when it finished .
How are you coping ?
How are you holding up ? Thinking of you both .
Hi Court - thanks so much again for all of this, this is so helpful. I think things are settling a bit here and we are mostly just focusing on recovery from his surgery now whilst checking the next pts are lined up - which they are. I think knowing that there is nothing else which can be done right now is kind of helpful. Although I'm using this time to get better informed. Also working out wh I should go back to work - am currently off following surgery to remove a benign brain tumour last month which I had thought was our big family health issue but that looks pretty straightforward no And I have managed to insert random emojis which I can't delete...!
The emoji’s have a life of their own around here . Thought this link might be of interest. Let’s you see some other ways of treating bowel cancer that has spread . Currently under review in the UK but might give you all a little insight and hope that over and above chemo there are other treatment approaches. L x
Thanks so much Court - I hadn't found that site but there are some really useful explanations on there which I will read up on before our first oncology appt. I have found some super useful academic articles too - will head to the copy shop next week to print them all off. What I then have to work out is how to ask all the questions I want to ask whilst not pissing off the oncology consultant...
I was really sorry to read about your own health issues too . Hope that’s improving for you . Sounds very traumatic in itself .
Ha . We always keep the team on board where possible . But to be honest the have always answered honestly from their clinical point of view and I think they know they have a pretty informed audience what with Dr Google being on board !
Hope you all have a restful weekend.
take care ,
Mark has a Pet scan and the camera (sorry can’t remember the name, we call it bum camera) this weekend. mri is on 12th and meeting with oncologist on 14th.
what questions should I ask. Is there anything I can do to make sure he gets the best treatments. How do I know if what they say is the best treatment for Mark. Bearing in mind he was told before surgery 18 months ago what was on his liver was nothing but now it’s grown!
also I’ve joined Facebook groups and I’m realising stage 4 cancer if you do manage to survive, you life becomes constantly on chemo and scans. I just don’t know how Mark could cope with this. I know lots of amazing people say they life day by day but the whole thing sounds so hard. Marks going to be soooo miserable
We found it helpful to know what segments in the liver were affected and roughly the size . You are getting informed and knowledge is the best way to keep your finger on the pulse . To be really honest I have found that my mum’s team want the best for her too. But you will see that it lines up with what other oncologist are doing.
At the very beginning it did feel as though the future had a new shape and the NHS was featuring heavily . My mum must be near her 30 th scan but she has just graduated to one a year and has only taken her ten years to get there . The first few years were intense with treatment . After that there was years and years of only scanning for my mum . You won’t believe this is possible right now but after a while , although it’s part of your life you find ways to bring in some balance . If treatments permit that can stretch out for a subgroup Of patients . Some will have one recurrence and no further issues to deal with . My mum has had two recurrences but over ten years there has been a lot of great living too .
All the very best with the scans and I hope they have a great treatment plan lined up to sort this out once and for all .
Thank you xx
Also just 5FU with leucovorin, as that is what I had.
JOjo I really sympathise, although think we are one step along in a bad way. We had my husbands 1st oncology appt on Tues which was awful. It included results from MRI scan on liver which showed too many to count small lesions throughout every liver lobe. He would need a miraculous response to chemo to get anywhere near operable status & I know from my now extensive reading that with his original tumour on the right side, this is even more unlikely. I had read up on treatments too and there is a more aggressive regime which I asked about to give him the slightly greater chance of getting to an op. I think the oncologist was v annoyed I was asking so much. He didn't advise the going for broke approach as it would mean he would run out of possible drugs they could use sooner - advises accepting palliative route only to keep him as well as poss for as long as poss. But he also said the time he would have wouldn't be any different whether he went the aggressive 1st or palliative route which doesn't make any sense. I think in the end he just wanted us to leave. He was pressing us for a decision but this is huge. We didn't feel able to make it on the spot so he won't line up a chemo start point until we have (takes 3 weeks apparently) & have to go back to clinic next week. Meanwhile I am in the process of organising private 2nd opinions with an oncologist and a liver specialist (prob next Thurs - after the next onc. clinic unfortunately) . I'm not really expecting different answers but am hoping for better info & explanations & more humanity. 2nd opinion may be tricky though as I had asked whether they were checking for RAS, BRAF & MSI & they were doing the first 2 - but turns out they haven't - only just requested them now so the decisions are without knowing any features of his cancer. We are both devastated. Our children are 17 and 12. I don't know how we will get through this xx
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