General discussion

soph86

Research info

Hi all

I have started working with bowel cancer uk to do some writing on their research blog to discuss new research data coming out/new areas in which research is happening. Before I make a start I wanted to put it out to the forum to find out if there are any bits of info you would like some more information on. It doesn’t just have to be about areas of research. Maybe clinical trials? Explaining mutations? Etc also if there is anything that maybe you know now but struggled to get your head around or find the info for when you were first diagnosed?
All suggestions are very welcome. BCUK are keen to ensure the most relevant and requested info is covered.
Thanks

Soph :x:

soph86

Hi @GROBER thank you for this. I agree diet is probably a key area (although when we say processed foods I tend to think its more to do with chemicals put on things like fruit and veg. I am part of a facebook group of young bowel cancer sufferers, all healthy, athletic and with healthy diets, lots of vegetarians etc). I suspect it is multifactorial ie:-
- more travel to far away countries picking up parasites
- diet and chemicals sprayed on food
- the rise of electronics and wifi everywhere
- changes in gut microbiome
- overuse of plastic
- overuse of antibiotics

In reality there have been a lot of dramatic changes in human life that have been implemented without really thinking about the long term affects this might have on the individual. Are our brains too smart for our bodies to cope? I take your point though.

@Christine no problem at all. I would say for CEA or CA its not the number so much that I tend to focus on more the trend. For example my CEA does nothing, its always around 1 or 2. My CA19.9 when im healthiest is somewhere between 10-16. the number has historically fluctuated however I know something is wrong when I see it trend upwards more than three times in a row. Then I know something is growing somewhere. That's how it works for me but everyone is different.
Regarding PIPAC at the moment it is just for the abdomen. I know Deborah Alsina has recently met with Jamie Murphy at Imperial and he is looking to pull a blog piece together about the PIPAC trial and eligibility etc. at the moment only a handful of people in the UK have it so the data is very very new. It was promising in Germany where they have done it more extensively and now they are investigating it here. Very encouraging for peri mets patients though as sometimes our options can be limited. I will certainly look into trials on TIL and see what info/data is out there so thank you for this. For the complementary stuff this is a bit more difficult to write about as it is subjective and there is limited research out there but I can point you in the direction of some knowledgeable groups on facebook (but stress again please speak to your oncologist first, I would guess that they would not want your daughter to do any of this whilst she is on a clinical trial as it may disrupt and skew the data).

@SariDaffs thank you for this. really useful and something I can certainly ask the research blog team to look in to.

thank you again everyone. some really useful points here.

best wishes

Soph :x:

GROBER

Just one example of xenobiotics in the "environment" there are many other examples.
www.theguardian.com/...ic-air-planes-frequent-flyers-ill

This is in answer to the question as to why there appears to be an increase in bowel cancer in the young,and should be read in that context only.

angelj

Hi @soph86 thank you I appreciate what you are saying about some drugs being out of being patent and too cheap to clinically trial. Perhaps we should crowd fund our own trials! I would be interested to know if the groups you mention, thank you again :x:

soph86

Hi @angelj would be lovely but I think we’ll need lots of millions. Care oncology clinic are the closest to a clinical trial of off label drugs. Might be worth giving them a call and going to meet them. I’ll dm you the other groups as not sure if there’s a conflict posting here :x:

jandals

I would be interested in the disparity between what people are offered in terms of choice of chemotherapy/biological therapy/immunotherapy depending on postcode. Particularly in relation to Cetuximab but I know bowel cancer uk are looking into this too. Also what training do professionals get around communicating with patients and family/carers.... how much and what focus does communication training take (my guess it’s the angle of legal/statutory guidelines and managing expectations rather than coming from a person centred care - while still staying within that remit of not promising anything and being clear about risks etc... some are just so great at this and others abysmal...

soph86

Hi @jandals some really interesting points there. Thank you. I agree with what you have said. I’ve had a mixed bag with communication. My first hospital was horrendous. They had written me off (not a nice feeling for anyone but I was 31. No way I was ready to just give up!).

Will feed your points back. Thank you.
:x::x:

jandals

The other thing that kind of frightened me was the decision for one hospital not even to offer liver surgery as it does not appear in any of the scans anymore when another hospital where we went for second opinion said why bother operating on just the bowel when if it does reappear it will more likely be in the places where there were mets (sigmoid colon is the only place the cancer is now visible on scans) so why do bowel only when ‘the horse has bolted’. There seems a blanket policy in one hospital for not operating anywhere it doesn’t appear on scans and another hospital thinking it’s best practice to remove half the liver anyway...some research on that decision making process might be interesting (is it due to cost!?)

soph86

It’s a good point @jandals. One thing I am beginning to appreciate is treating metastatic cancer is incredibly subjective. For instance now in my situation I have an oncologist and a surgeon in one place thinking one thing is right and another disagreeing and saying to do something else. The reality is both are wrong and both are right. Any move in metastatic cancer has a positive but also a big potential negative. It’s all so unpredictable. Some oncologists believe that extensive surgery can trigger more mets in the healing tissue and long time of systemic treatment isn’t good. Others think surgery and a more aggressive approach may lead to a cure or longer remission times. I don’t think it’s down to cost as such it’s just down to the individual doctor and their theories and preferences. That’s why I think a second opinion is always useful but it’s good to have an oncologist you trust to ultimately ‘steer your ship’. Ideally we would all love a crystal ball so we could see the outcomes and go with the best option!!!
For metastatic cancer though, until a cure is found I think you will always get differences of opinions.
I will certainly take your points forward to the team though.
Thank you
:x:

jandals

Ah I see it’s such an awful gamble isn’t it... I don’t need a crystal ball but I wish the science was better to help us decide... one thing I do have experience of is working with people who use mental health services to evaluate services from a service user perspective. (Interviewers are service users and also lead on doing the analysis and writing recommendations) this might be interesting with a focus on how people experience the patient/professional relationship or access to the service and records etc and experience of treatment plans or certain ops or interventions for example...we then write a report based on the aspect of the service we evaluate and give recommendations which the providers complete action plans for (it is called user focused monitoring) sorry lots of ideas tonight - must go to sleep now!!

GROBER

Just apply Occams razor

Occam's razor (also Ockham's razor or Ocham's razor (Latin: novacula Occami); further known as the law of parsimony (Latin: lex parsimoniae)) is the problem-solving principle that essentially states that "simpler solutions are more likely to be correct than complex ones." When presented with competing hypotheses to solve a problem, one should select the solution with the fewest assumptions. The idea is attributed to English Franciscan friar William of Ockham (c. 1287–1347), a scholastic philosopher and theologian.

soph86

@GROBER I like this! Never really thought about applying this to cancer therapy but I think it probably works!

jandals

@GROBER I wish my brain could do simple - to me it’s not so straightforward you could argue either way it’s simpler to bin the cancer than to leave it to chance and keep thinking about it no?

Jomo9

@soph86 the research sounds like a great idea. I would be interested in hearing about the following:

1) How quickly cancers grow i.e. how long would it have taken for my grade 3 poorly differentiated 8cm tumour to grow?

2) What does MSI high status actually mean and what is the likelihood of having Lynch Syndrome. It is also interesting that Wales are now testing all Bowel Cancer patients.

3) A booklet that explains the types of tumour descriptions. I am still a little unsure about KRAS/NRAS/BRAF and PIK3CA and what this means for treatment.

4) What are the unusual side affects that could occur during or post treatment i.e. I have severe pain in all my joints which is not neuropathy.

5) And I am still puzzled as to why a GP has a different NHS computer system and cannot see hospital notes, blood test results etc. They rely on a letter after treatment which carries limited data and information. This means I am now having additional blood tests for my GP to diagnose my joint problems which seems a crazy way for the NHS to operate!

Thanks, Jo :x::x:

soph86

Hi @Jomo9 so sorry for the delay in coming back to you I’ve been away for a couple of days.

Thank you for these points raised. I will add them to my list. Super helpful for me and the team pulling the blog together.

One thing I have said to the charity is I think there must be a priority in pulling together a more up to date handbook explaining all the mutations. It’s becoming increasingly referenced and can leave a lot of patients feeling a bit in the dark or overwhelmed trying to get their heads around it.

Thanks again

Soph :x:

Jomo9

@soph86 Please can I also ask for you to raise the awareness of Lynch Syndrome and it’s four main genes. I have had genetic counselling as am highly likely to be diagnosed due to my initial tumour biopsy results. As 1 in 300 people have the mutation I think that more information would be particularly useful. It’s particularly pertinent when more young people are being diagnosed with bowel cancer. Thank you :x::x:

jeangenie

I was wondering what research is done into the after effects of chemotherapy. I had Xelox (oxaliplatin infusion and capecitabine tablets) and was told that the tingling effect on fingers and feet was probably permanent as it didn't go away between the last treatments. That isn't so - my fingers are fine and my feet are improving all the time - but how do they know anyway as they haven't got time to follow up chemotherapy patients.

Colin Oscar Pea

Effectiveness of the poo test. Unless the cancer is bleeding, it doesn't detect. There must be a better way.

soph86

Hi @Ada thank you for this. and @Colin Oscar Pea you will be pleased to hear there is a more accurate way of measuring poo samples in the pipeline (excuse the pun) which hopefully will see advances in this area of detection and diagnosis. Do check out the research blogs for any up to date info.

thanks all

jj

@soph86
Hi Soph86,
Like @Jomo9, I would like more information on Lynch Syndrome. My husband’s biopsy or blood test after colonoscopy came back saying Lynch Syndrome but after his surgery, the histology said only one marker was positive and more testing needed and he has been referred to the genetic centre in Liverpool. I have 2 sons and I would like to know why results and counselling etc for Lynch Syndrome takes about 3months?
Also how did they miss my husband’s tumour last year when he had CTscan for abdomen/pelvic and he was diagnosed with small intestinal obstruction? Did radiology miss this?
Thanks