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Beating Bowel Cancer Community

Life with bowel cancer

terri m

Poorly differentiated cells.. Poor prognosis??

Hi everyone... I read yesterday that poorly differentiated cancer( grade 3).. Is fast growing, and a poor prognosis... I am grade 3.. I have been soo despondent, has oncologist stopped my oxy after 4 cycles, although I am completing 8 cycles of capecitibine.. I will have a scan after chemotheraphy ends, But have to wait a year for the next one😏. My concern is I thought i would be high risk, and be scanned more frequent.. Are there any of you with poorly differentiated cells with positive outcomes?.. I have been so miserable today.. My hubbie says he cant do nothing right.🤔.. Love to you all. :x::x::x::x:

Scardycat

@terri m . I had poorly differentiated cells, 11 affected lymph nodes and vascular involvement none of which bodes well. But my three year scan last year was still clear.

terri m
Quote from @Scardycat:
@terri m . I had poorly differentiated cells, 11 affected lymph nodes and vascular involvement none of which bodes well. But my three year scan last year was still clear.

Hi @Scardycat .. Thats so good to hear... Thanks for reply xx lots of love cxx

DianeS

Hi @terri m I also had poorly differentiated cells and was told my cancer was aggressive. I’m almost two years clear, and pray very hard at each scan I have. Stay hopeful and positive. I try not to think about the stats etc, each one of us has our own individual cancer, no two are the same. There are lots of positive stories on the forum, which will hopefully help you when you feel down. We all have those days, so sending you a big hug and hoping tomorrow is a better day 😁😁 :x::x::x::x:

Baxter2

Hi @terri m

I also had poorly differentiated cells and 16 out of 18 nodes involved. My cancer did make a quick return after my initial diagnosis and surgery but I'm hopeful things are 'under control' at the moment. I also had vascular invasion. im happy to be on chemo indefinitely for this reason.

I'm choosing to think positively (mostly! 😉) and find it very reassuring to read @Scardycat's encouraging comments! I've never had a clear scan and probably never will but I remain hopeful of living a fair bit longer feeling pretty well!

Lots of love,

K💚💛💜💙❤️

ch7091

Hi @terri m, I think we all have things about our diagnosis that frighten us. I had 13 lymph nodes involved, which really scared me at first as most people seem to just have a few. I kept looking at things online about this many lymph nodes which scared me silly. But, your cancer has all been removed and it hadn't metastasized when it was found, and now it's been actively treated so no reason to think it should pop up anywhere else now. When I was feeling low, someone suggested to me that I just allowed myself half a hour set aside twice a day to worry. I was to push aside anything that scared me, until it came to my worry time. It really worked for me after a week, and now I can rarely be bothered to worry when it gets to my designated time. Ive just finished my 4th cycle of chemo and I feel like im living a decent life again thanks to this advice.

It might be worth trying?

Good luck,
Jodie :x::x:

Lizalou

Hi @terri m

I am only 'moderately differentiated ' but can understand your worries. As the others say, you are having the full, up-to-date, recommended chemo and have no other complications so the chances are you will be fine (I wasn't advised oxalyplatin so you are ahead of me)

You could discuss your concerns about the scan frequency and ask for an early scan if necessary. My nurse and surgeon took my concerns seriously and I managed to wangle a 3 year scan recently, against local guidelines. Failing that, you could pay privately (may need to sacrifice a holiday or something but may be worth it for peace of mind)

Best wishes :x::x:

terri m

Hi @dianaS. @Baxter2 and @ch7091 . Thank you for all your reassuring advice..some days we all have those dark moments, and yesterday was one of mine.. You are all doing so well.. Love & hugs :x::x::x:

terri m
Quote from @Lizalou:
Hi @terri m

I am only 'moderately differentiated ' but can understand your worries. As the others say, you are having the full, up-to-date, recommended chemo and have no other complications so the chances are you will be fine (I wasn't advised oxalyplatin so you are ahead of me)

You could discuss your concerns about the scan frequency and ask for an early scan if necessary. My nurse and surgeon took my concerns seriously and I managed to wangle a 3 year scan recently, against local guidelines. Failing that, you could pay privately (may need to sacrifice a holiday or something but may be worth it for peace of mind)

Best wishes

Thaks @Lizalou .. I did mention more frequent scans but my oncologist didn't seem keen.. I may ask about a private scan.. My nurse said that the CEA was a good indicator. But iI'm not so sure. Hope you are doing okay. ❤️❣️:x::x::x:

Lizalou

Hi @terri m

Actually if your CEA is a good indicator and is being done regularly, that is very reassuring . As I understand, it works well for most (75%?)being a good early indicator that something might be brewing. But for people like me it will never go up (unless I develop an entirely different tumour) so no reassurance at all.

Thank you, my CT scan was fine!

:x::x:

sophia

Hi @terri m the other thing to bare in mind is that sometimes poorly differentiated cells can indicate a high mutation burden and may make you msi high or mmr deficient. If that is the case there is an immunotherapy option. It’s not available on the nhs but for people who have this status where chemo isn’t working it’s a very serious option to consider and something to discuss with your oncologist. Only a very small percentage of patients have this status so no guarantees at all but something to establish as it’s a possible other path to consider. :x::x:

terri m
Quote from @Lizalou:
Hi @terri m

Actually if your CEA is a good indicator and is being done regularly, that is very reassuring . As I understand, it works well for most (75%?)being a good early indicator that something might be brewing. But for people like me it will never go up (unless I develop an entirely different tumour) so no reassurance at all.

Thank you, my CT scan was fine!

Great news your scan was fine @Lizalou .. My CEA is done every 3 weeks. And been the same throughout. Thats good to know tc. :x::x::x:

terri m
Quote from @sophia:
Hi @terri m the other thing to bare in mind is that sometimes poorly differentiated cells can indicate a high mutation burden and may make you msi high or mmr deficient. If that is the case there is an immunotherapy option. It’s not available on the nhs but for people who have this status where chemo isn’t working it’s a very serious option to consider and something to discuss with your oncologist. Only a very small percentage of patients have this status so no guarantees at all but something to establish as it’s a possible other path to consider.

Thank you @sophia.. I am almost certain I had these tests done after surgery. Nay ask next time though . :x::x::x:

GD62

Hi @terri m I'm a right bloody mongrel with mixed poorly and moderately differentiated cells and KRAS positive and just in uncharted territory. It's all a matter of wait and see, but just carry on at work, day at a time, monitoring the forum , clinical reports and websites to get some insight into progress or lack thereof. It's all a bit of an uncertain lottery xxx :)

terri m
Quote from @GD62:
Hi @terri m I'm a right bloody mongrel with mixed poorly and moderately differentiated cells and KRAS positive and just in uncharted territory. It's all a matter of wait and see, but just carry on at work, day at a time, monitoring the forum , clinical reports and websites to get some insight into progress or lack thereof. It's all a bit of an uncertain lottery xxx

Hi @GD62 .. You are right. It is like an uncertain lottery... Hope your not missing venice too much... I am off on a,much needed break to dartmouth in Devon end of month.. We need nice places & faces to look forward too👍:x::x: