Stage 4 bowel cancer

Jon

2nd opinion for chemo

I have too many colorectal-origin metastases on my liver for it to currently be operable, and radiology has been counted out for similar reasons. So chemo is the one way forward unless / until these lesions can be reduced in size or number. Folfox is the initial chemo regime I have been started on, with further ones down the line if needed. My question relates to the getting of a second opinion on my treatment plan. I lot of people are saying it's not worth the bother: the options in my position are relatively few, NICE guidelines relatively up to date and prescriptive, my consultant oncologist very good and a real expert in bowel cancer, and the programme already includes a couple of relatively recently approved techniques. Has anyone here had relatively recent experience of a comparable position where they *did* get a second opinion? Was it worth it? And in particular, any recommendations as to who, or how you identified the best person to turn to?

Jon

I should add that I) I have already had the primary tumour remove, and with it most of my upper colon, in an emergency operation two months ago; and II) I have no doubt I will seek a second opinion from a liver surgeon after my 3-month CT as it seems to me there are much more shades of opinion and differing techniques with regard to surgery than there are, in a case such as mine, with regard to chemo and initial targeted therapies, etc.

Lexi

Hi @Jon whilst I can not help you with the second half of your query I know lots of wonderful formees who will be along very soon that will, but I would like to say that my hubby also not operable liver metasis and not suitable for radiotherapy has had eight metasis removed in the last eight months of our journey! So I wish you lots of luck with your treatment plan all the best Jan

Bear G

Hi @Jon
Welcome to the forum, I hope you find this a helpful and supportive place.

I’m sorry to hear of your diagnosis but can reassure you that you’re not alone.

It’s good you seem to be restricting your searching to reputable sites like this one and NICE. However, one thing I’ve learned over the past 5 years since my stage 4 diagnosis is that the stats they all use aren’t predictors of our individual treatment success. Lots of us are getting results far in excess of any of the trials and are surviving well beyond expectations.

I haven’t had to resort to a second opinion but quite a few on here have and I’m sure will be able to help answer your questions.

I can however say that I had multiple mets at diagnosis (3 in liver and 8 in lungs) and these were successfully treated by chemo alone, in my case Folfiri plus Avastin. I hope this helps to give you hope in your treatment.

(If you click on our names you’ll see our stories)

Big hugs
Bear
:x::x:

Jon

Thank you, @bear. My mets are only on my liver but there are 15 of them or so, and in all areas -- does that make us roughly even stevens??. And yes, I may be wrong but it seems the Stage IV bowel cancer stats that drive prognoses given at present are at least 10 more years old, and thus don't include more recent developments. Also in the UK they only seem to exist for one region! Where they compare roughly with those for the States, which again based on figures gathered some time ago, suggest 6-8 per cent (from memory) survive 5 years -- which is low, but not vanishingly so (I'm an optimist). And within that I can't find anything -- perhaps I haven't looked hard enough -- to see how such rates may increase (or not) with sufferers who were already younger or in good health. That's my current understanding anyway, and it helps me in the conclusion 'I'm not a stat!'

Jon

@Lexi, thank you too. I love stories like this! Seems to me its often when we get down to what, 8/10 or so, depending on location etc, that surgery may become practicable. So only 5 to zap!!! Go get em, chemo.

Bear G

Hi @Jon
As you say ‘you are not a stat’! The stats available are fairly out of date and mush everyone together regardless or age or state of health. They don’t predict how you’ll do.
They are useful to show that the survival trends are continually increasing and to compare broadly between countries and even units. But all they do for an individual is to help a doctor make an educated guess as to how long you’ll live.
Fingers crossed for a fab response to your chemo!
:x::x:

Susie15

Hi @Jon
I've sought a second opinion re my treatment and found it really useful. The second opinion was the same as the first but it reassured me that the treatment plan recommended was indeed the best way forward. As a stage 4 patient having palliative treatment its really important to me and my family that we leave no stone unturned re treatment and that we've explored all avenues.
Good luck with your treatment
Sue

mem

Hi and a warm welcome from me too @Jon,
Sorry to hear about your diagnosis but glad you have found us. It is great to read you are already in the throws of treatment and I will also be keeping my fingers tightly crossed for a great response for you.
I’ve personally never sought a second opinion ‘yet’ but would never say never. It can never hurt having a different pair of eyes looking at your situation. As well as the fab bear G have a read of @El Ivan’s profile; he is our liver-lord and has also sent the stats packing with a swift kick to the posterior.
When I was diagnosed, I had a secondary liver blob which was approx 10cm. And in time, after a fab response to chemo ( Capox), I had 68%ish of my liver resected along with my gall bladder for good measure (two for one perhaps 😉). I personally don’t seek out stats, they serve zero purpose to my treatment and to me living the best way I can with bowel cancer.
All the best with the chemo (and second opinion if you choose) and if ok, please keep us posted with how you are getting on.
Lots of love :x::x:

Jon

@mem, @bear. This is lovely -- all these five year-ers. My tribe!! @Susie15 -- can I ask, who did you go to and how did you find them? (Out of general interest, it seems the Royal Marsden for example are accepting referrals, ie before the treatment plan beings, but are turning away second opinions.)

El Ivan

Hi @Jon , a warm welcome from me too. You’ve had some good advice from others already but if you’re looking for a second opinion with regard liver surgery try Prof Peter Lodge in Leeds. He’s sorted me out a fair few times with regard liver surgeries. If you need contact details drop me a message and I’ll dig out his secretary’s email address. I do know that he has recently been able to offer hope to a couple of patients who had originally been told there was no surgery available. As per the wonderful @mem and @Bear G I also haven’t needed to seek a second opinion yet but wouldn’t hesitate to do so if needed.
Best of luck and keep on keeping on. 😃👍

scruffysheep

Hi@Jon, I had a right hemicolectomy Dec17 then 12 cycles of Folfox as mop up chemo.
Unfortunately between that ending and seeing my oncologist I developed 10 mets in my liver and 4 peritoneal lymph nodes.
After 6 cycles of Folfiri it was stable but the next scan, 2 weeks ago showed that 2 in the liver had grown. My oncologist has referred me to The Royal Marsdon, to see what they think/look at trials which I may be suitable for. I’m waiting to hear from them.
He has said there are 2 more types of chemo ( something beginning with M, but I can’t remember off hand what it was called then Lonsurf ) which I could have but as I’m so well at present he recommended the trials/second opinion before he went down that route.

Susie15

@Jon I got a second opinion from Christies and royal free on different matters. My gp did one referral and oncologist did another. It's not a big deal or a lot of work for health professionals to do the referral. If you're thinking about having treatment at another hospital, consider how you will get to and from there especially when you're not feeling great. Hope this helps
Sue

Jon

@scruffysheep you remind me of the kind of complications that may lie ahead. All power to your elbow and glad you are feeling ok just now. It's odd to be so very ill and to sometimes feel so absolutely fine -- but I'm not complaining! @Susie15 thanks -- most helpful. @El Ivan that's particularly useful actually. I'm so-so about a second opinion at this stage but as the 3 month scan approaches I will be really, really keen to be in touch with surgeons who might have something extra to throw in. I will add his name to my list. I'm sure I can find contact details online. Chemo day 4 for me now, not too bad except for a chest pressure thing which checked out fine but involved 4am in AandE!

Seashells

Hi @Jon I had 6 cycles of Folfox post bowel surgery then liver surgery and then 6 more cycles to mop up. It does seem the normal treatment regime although some people start with Irinotican and Cetux if you are KRAS wild type (see my profile for further details). I did see Dr Daniel Krell in Harley Street privately when my liver tumours and some lung tumours appeared recently just to reassure myself that the treatment was correct and he confirmed that is exactly what he would have done. I also went to Christies about clinical trials and they also confirmed that my treatment programme was appropriate.

The trouble is all our cancers are different and respond differently. Oncologists can only rely on what normally happens - I am clearly "special" because my current treatment doesn't seem to be working although others are on it for years.

Hope the 3 month scan puts your mind at rest. :x:

determinedjoan

Oh no! Soo soz about 4am trip to A& E - nightmare !
Glad all ok. Take care & keep well.
V best of luck with everything :x:

Jon

thanks @determinedjoan. Well such is life with these things -- did feel properly checked out (don't always feel that in A&E and sent home told to watch out for repeat at next cycle but confident it wasn't cardiac -- so that's the main thing.