Bowel cancer treatment and side effects

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xcgb

Whether to have Chemo or not?

Hi again.

To recap, I am a 57 year old male and 3 weeks ago I had an anterior resection via robotic keyhole for a T3 N1 and all went very well.
I have just had a meeting with my specialist nurse and out of the 21 lymph nodes that were removed one pesky one had a cancer cell.
They are referring me to the oncology dept for a 3 month chemo session, which they say should be tolerable and I can still work etc
I know it's an impossible question but I don't really know whether to have it or not.
The oncology doctor will hopefully have more statistics to help me decide but does anyone know the percentage benefit of chemo against recurrence?
Thanks

Mark McC

Hi @xcgb

So I had a similar dilemma about a year ago. 4 rounds of chemo shrunk the tumour enough for the LAR to proceed, but 2 out of 11 lymph nodes showed cancer cells and the surgeon recommended 3 more months of chemo.

I was in a right quandary, especially having already been through 3 months of chemo. The oncologist said it was my decision, as in his experience half his patients went for it and half didn't, which I found a bit frustrating when I was looking for guidance.

I was told by the oncologist that as things stood, before the second 3 months of chemo, my survival rate was 80% and the additional chemo would push it up to around 82%. But, 80% or 82% of what ?

The survival rate calculation wasn’t explained to me, what it meant, how it was calculated, so afterwards I did some investigations of my own into statistics quoted. It turns out that if you’re talking about all stages of bowel cancer almost 80% survive their cancer for 1 year or more. With 5 year survival rates by stage ranging from 90% to 10%. These statistics are for net survival, which estimates the number of people who survive their cancer rather than calculating the number of people diagnosed with cancer who are still alive. In other words, it is the survival of cancer patients after taking into account that some people would have died from other causes if they had not had cancer. As far as I can tell they ignore age, class, health, other conditions, ethnicity etc

More details in this link. www.cancerresearchuk.org/...20100,for%205%20years%20or%20more

But these statistics are estimates and cannot be specific to any one individual. However none of that was explained and it was my decision whether to go for chemo or not, I wasn’t given any advice by the oncologist beyond the % calculation.

I actually hit an emotional low at this point and spoke to MacMillan for their steer. In summary they told me not to get too hung up on the stats and to read this article about survival rate statistics, and really how they should be taken with a pinch of salt - www.mwc.com.br/files/Gould_-_The_median_isnt_the_message.pdf

It was after that and speaking to my care nurse, where she said statistically it would help my long term survival chances, that I went for it. I went for it, as apart from her advise I didn’t want to regret anything later - I wanted to make sure I’d done everything I could do to give me the best chance of long term recovery.

So, when it comes to statistics it is confusing.

I hope you get some good practical advise and good luck whatever you decide to do.

Wegwe

*For those who do not wish to read about numbers: stop reading here*

My surgeon told me that as a rough estimate for all stage 3 colon (I know very little about rectal) cancer patients combined adjuvant chemo halves the probability of a recurrence, from about 50% to something like 25%. However, with T3N1 I believe you are low risk, so the risk without chemo would be lower for you and the effect of chemo could be smaller. Your oncologist will be able to give you a better estimate. My tumour was T2N1b; my oncologist indicated that chemo reduced the probability of recurrence by about 15% in my case.

xcgb

Mark
Thank you so much for taking the time to write this it's very helpful, and will be very useful to get a balanced view.
Hopefully it will help others in a similar situation as well.

xcgb
Quote from @Wegwe:
*For those who do not wish to read about numbers: stop reading here*

My surgeon told me that as a rough estimate for all stage 3 colon (I know very little about rectal) cancer patients combined adjuvant chemo halves the probability of a recurrence, from about 50% to something like 25%. However, with T3N1 I believe you are low risk, so the risk without chemo would be lower for you and the effect of chemo could be smaller. Your oncologist will be able to give you a better estimate. My tumour was T2N1b; my oncologist indicated that chemo reduced the probability of recurrence by about 15% in my case.

Wegwe
Thank you for this that's really helpful

freyaburmesejanet

My husband was in a very similar situation @xcgb , T3N1, just 2 affected nodes. We found it very difficult to pin the oncologist down as to what actual statistical gain chemo would bring. She talked about 30% when pushed very hard, but it was hard to find out what the 30% was of. She explained that since nearly all stage 3 people choose the chemo route there have not been studies on the survival rates of those who don’t. It was a very hard decision especially as the surgeon had been so pleased about how well she’d done with the clear margins and the large numbers of not affected nodes checked.

He opted for Capox chemo, which I was very pleased about because I love him so much and wanted him to seize every possible advantage. But, understanding the figures a bit better now and taking into account the rather rough time he had, if it was me, I’m not sure that I would. It would depend on so many things, how old I was, how fit I was in general, and would there be a loved one to help me if/when things got tough. Not at all as obvious as we had first thought.

xcgb
Quote from @freyaburmesejanet:
My husband was in a very similar situation @xcgb , T3N1, just 2 affected nodes. We found it very difficult to pin the oncologist down as to what actual statistical gain chemo would bring. She talked about 30% when pushed very hard, but it was hard to find out what the 30% was of. She explained that since nearly all stage 3 people choose the chemo route there have not been studies on the survival rates of those who don’t. It was a very hard decision especially as the surgeon had been so pleased about how well she’d done with the clear margins and the large numbers of not affected nodes checked.

He opted for Capox chemo, which I was very pleased about because I love him so much and wanted him to seize every possible advantage. But, understanding the figures a bit better now and taking into account the rather rough time he had, if it was me, I’m not sure that I would. It would depend on so many things, how old I was, how fit I was in general, and would there be a loved one to help me if/when things got tough. Not at all as obvious as we had first thought.

Thank you for that honest informative reply I will bear it in mind for sure!

Liz Blakelands

@xcgb To have chemo or not, it is a big decision. I was advised to have Capox for 6 months 4 years ago, T3N0M0, I was 62 at the time. I was advised to have it because a stray cancer cell may have got into circulation before or during my lower abdominal resection. I looked at lots of stats but most were actually on very low number of cases for the type and location of cancer I had.

I did decide to have the chemo and I have not regretted that decision. What made my mine up was I asked during the consultation with the oncologist ' If the cancer came back when was that likely to be'. The answer 'within 12 months' came straight back.
I thought if I don't have the chemo and it comes back, I would be devastated, if I had the chemo and it still comes back I know I did everything I could'.

I saw the chemo as a gamble, 6 months of not feeling so good hopefully in exchange for another 20 years.

The other thing to take into account is that chemo is being refined all the time so statistics are often overtaken by changes in regime before they are published.

Each persons decision is different, the important thing is that you are happy with your decision.

All the best
Liz :x::x:

xcgb
Quote from @Liz Blakelands:
@xcgb To have chemo or not, it is a big decision. I was advised to have Capox for 6 months 4 years ago, T3N0M0, I was 62 at the time. I was advised to have it because a stray cancer cell may have got into circulation before or during my lower abdominal resection. I looked at lots of stats but most were actually on very low number of cases for the type and location of cancer I had.

I did decide to have the chemo and I have not regretted that decision. What made my mine up was I asked during the consultation with the oncologist ' If the cancer came back when was that likely to be'. The answer 'within 12 months' came straight back.
I thought if I don't have the chemo and it comes back, I would be devastated, if I had the chemo and it still comes back I know I did everything I could'.

I saw the chemo as a gamble, 6 months of not feeling so good hopefully in exchange for another 20 years.

The other thing to take into account is that chemo is being refined all the time so statistics are often overtaken by changes in regime before they are published.

Each persons decision is different, the important thing is that you are happy with your decision.

All the best
Liz

Thanks Liz that's really helpful
Thanks for taking the time to reply

Jannine

Hi @xcgb I was also T3 N1 which was upgraded to T4 N1 after my right hemi operation with 1/45 lymph nodes testing positive. I always believe it’s better to regret doing something than not doing it so I opted for 3 months of chemo. I knew then I’d done everything I could to fight this terrible disease. There are good and bad days with chemo and you’ll get plenty of meds to help with side effects. You can always have your doses reduced if you struggle. If your work is flexible maybe try and arrange two or three days off work after the IV infusion, that’s what hit me the most and I found the tablets tolerable. Everyone reacts differently to chemo but the chemo nurses are excellent. I’m glad I did the chemo and I’m almost two and a half years cancer free and fingers crossed it stays that way. Good luck with your recovery and with whatever you decide to do about chemo. All the best :x:

xcgb

Janine
Thanks for the reply, I thought 1/21 was annoying but 1/45!

Your story is very helpful I agree with you and we do have an excellent oncology centre at my local hospital which does help.
All these replies will help me with good questions when I meet my oncologist n a couple of weeks

All the best

Quote from @Jannine:
Hi @xcgb I was also T3 N1 which was upgraded to T4 N1 after my right hemi operation with 1/45 lymph nodes testing positive. I always believe it’s better to regret doing something than not doing it so I opted for 3 months of chemo. I knew then I’d done everything I could to fight this terrible disease. There are good and bad days with chemo and you’ll get plenty of meds to help with side effects. You can always have your doses reduced if you struggle. If your work is flexible maybe try and arrange two or three days off work after the IV infusion, that’s what hit me the most and I found the tablets tolerable. Everyone reacts differently to chemo but the chemo nurses are excellent. I’m glad I did the chemo and I’m almost two and a half years cancer free and fingers crossed it stays that way. Good luck with your recovery and with whatever you decide to do about chemo. All the best

Rachel56

Hi there, I am just about to start Chemo (1st July). I am T2, N1b (2 out of 19 nodes removed). 3 month cycle for me. I agree with the stats already provided. My oncologist last week said I had a 90% chance of being alive in 5 years with Chemo. He wouldn’t commit to disease free survival rates but obviously something less than that. I am scared about Chemo but for me it was all about giving me the best possible chance of living. I have 2 boys, one at University, one in 6th form and I am 56. I recovered very well from my operation and hope that stands me in good stead for Chemo although not sure any correlation between the two. I am taking the view that I will try and work ( but agreed going down to 3 days from 5) and warned that I might not be up to it but will see how it goes. I don’t have a manual job. One day at a time. Good luck whatever you decide. As already said it is a personal decision.

Lirio345

Hi @xcgb, I just wanted to chip in one point really, which is when reading about chemo side effects on here the number of comments are skewed towards those having problems. It is quite unusual to hear from all of those with minimum or very manageable side effects. Just human nature. I wish you luck in your decision making, Kim :x::x:

xcgb
Quote from @Rachel56:
Hi there, I am just about to start Chemo (1st July). I am T2, N1b (2 out of 19 nodes removed). 3 month cycle for me. I agree with the stats already provided. My oncologist last week said I had a 90% chance of being alive in 5 years with Chemo. He wouldn’t commit to disease free survival rates but obviously something less than that. I am scared about Chemo but for me it was all about giving me the best possible chance of living. I have 2 boys, one at University, one in 6th form and I am 56. I recovered very well from my operation and hope that stands me in good stead for Chemo although not sure any correlation between the two. I am taking the view that I will try and work ( but agreed going down to 3 days from 5) and warned that I might not be up to it but will see how it goes. I don’t have a manual job. One day at a time. Good luck whatever you decide. As already said it is a personal decision.

Thanks Rachel that's helpful
Hope you get on well with it

Wegwe

I worked during Capox, but reduced hours (down to about 30% towards the end) and during the hours I did work I was less productive. Are you planning to work 3 full days and have 2 days off, @Rachel56? For me it worked better to work a lower number of hours five days/week, so I had time to go for walks/(slow) runs/exercise with oncological physiotherapist/swim (not in oxi weeks)/sit on the sofa and do nothing every day. I think that helped me during chemo, and contributed to faster recovery afterwards.

xcgb
Quote from @Lirio345:
Hi @xcgb, I just wanted to chip in one point really, which is when reading about chemo side effects on here the number of comments are skewed towards those having problems. It is quite unusual to hear from all of those with minimum or very manageable side effects. Just human nature. I wish you luck in your decision making, Kim

Kim
That is a very good point, thanks for making it. It's very easy to be scared reading people's problems on here, but all cases are unique.
Thank you

Rachel56

@Wegbe, Thankyou. Yes not going to do full days but thought doing something might be helpful. Thankyou Kim re:point about problems. Well noted. Take care all. :x::x::x:

Wegwe

@Rachel56 that was my idea, too. For me, having a few things continue as normal (or close to normal) was helpful. Hope it be works for you, too.

belinda66

@xcgb It's a difficult decision to make but the good thing is, you can choose to stop chemotherapy if it proves unbearable for you. Each individual reacts differently. For Stage 2, it's even more of a dilemna because the odds of it doing much good are very low but I still went ahead as many do in case there were any cancer cells in the vascular system - the pathologist had been unable to say whether there were any or not. I don't regret having chemo.

xcgb

Thanks Belinda that helps

Quote from @belinda66:
@xcgb It's a difficult decision to make but the good thing is, you can choose to stop chemotherapy if it proves unbearable for you. Each individual reacts differently. For Stage 2, it's even more of a dilemna because the odds of it doing much good are very low but I still went ahead as many do in case there were any cancer cells in the vascular system - the pathologist had been unable to say whether there were any or not. I don't regret having chemo.