Treatment Decisions

Hi Fiona - I hope your hubby is recovering well post op - its an emotional rollercoaster isn't it? and sadly there is not a huge amount of reputable study information regarding the amount of lymph nodes and recurrence rates in specific groups. My hubby decided in the end not to proceed with chemo for now - there may come a time if it does come back when he will need it anyway but he has decided to cross that bridge when and if it happens. My hubby felt that as there were no guarantees that Chemo would make a difference and he is considered low risk there was  no clear  right or wrong treatment paths for him and it did take a lot of thought for him to reach this decision.  Along the way he has asked for my thoughts but it was hard for me to feel that I should sway him for the roughly 10% benefit in his case, which in any event wasn't a given, so I guess between us we came to the same decision.  I found I hardly slept during the weeks trying to decide if Chemo was a right treatment path for him or not, constantly waking up thinking of the percentage gain and for him was it worth it.   Another factor in my hubbies case was that he does have some other underlying health issues so that was a factor too.   Our oncologist and consultant have been wonderful and in fact we had several meetings with his oncologist to talk it through so hopefully you are well supported.  My hubby is now 9 weeks post op and due to his decision will have a good monitoring programme, but even that doesn't given guarantees of catching something early but its the best we have got and he is already booked for another scan in January with blood tests for CEA Markers etc.   For now we have moved on from the decision as there is only so much thinking you can do, so for now we are enjoying each moment and keeping positive that he has a 75% curative prospect for his condition so we are slowly learning to live in the here and now.  I hope you and hubby are able to find your own path through, its so hard I know as everyone's journey is so individual and treatment decisions are complex - for us right now we will never know if a different course will make a difference we are just finding peace for now in our journey along the way.  Wishing you and your hubby all the best for continued recovery x 

Hi Fiona, you write that you are in the exact same position as Georgia. However,  the  numbers she quotes for the effects of chemo probably do not apply to your husband, because he had a higher number of positive lymph nodes.  If the expected benefit of chemo plays a role in your decision, ask his oncologist about information that is specific to your husband’s situation.  
I hope you come to a decision that works for you both. 

What I meant was that we were in the same position I.e. surgery then possible chemo and not the actual treatment. I’m sure the oncologist will give us all the information we need next week.

Thank you so much for your reply. I know we have a very difficult decision to make, I’m sure the oncologist will be able to put our minds at rest. Like you, it’s difficult to sit back but it’s hubby’s decision either way and I will go with whatever he wants. He has handled the whole situation magnificently so far, a lot better than me but we have been through worse in our 30 years of marriage. Wishing you and your hubby well on his continued recovery xx

Hi Georgia, hubby went to see the oncologist today. He too has decided not to go with the chemo. They gave it only a 5-10% chance of it giving any benefit which was not enough for us given the range of side effects. It was a difficult decision but one we both came to. They will monitor him closely but if we have to go down the same route again in the future then we will have to decide again. Wishing you both all the very best for the future x

Hi Fiona C!

Each to their own, but my husband was not even offered adjuvant chemotherapy after his operation in January. I would have preferred him to get it and did ask if he would need any more - `mop up` I believe they call it gets rid of anything still lurking around, I think. We were told no because they got it all and if it's not necessary, they don't do it. Well 4 months down the line he had a follow up with his surgeon and she took bloods from him and a few weeks later we got a letter to say that his CEA markers had risen and he had to go for a CT scan. Well, we found out in June that his cancer had come back, and I still maintain if he got the adjuvant chemo we may not be where we are now, and I am quite bitter and angry at that. He went through 4 cycles of CAPOX which unfortunately didn't work for him he infact had a spread to his pelvis. Now they are going to try him on 5FU and see how that goes. As I say it's peoples own decision in regard to this. He will be started on a low dose to see how he tolerates it we're hoping this will do something if not cure it, maybe contain it for a while I see it as something being done other than being left with nothing at all. My best wishes to you. 

Vicky x

Hi Fiona, I was giving even less Stats. than those you have mentioned, & was not offered Chemo in the first instance, following a left Hemicolectomy (May '19.) despite EMVI. One year later, in March '20, I was diagnosed with 2 cancerous lung nodules - & then needed Chemo to shrink them, prior to a Lung Ablation.

I was offered Capox....Oxyplatin & Capecitabine Tabs. However, I refused the infusion of Oxy. owing to being a practising artist, & fearful of neuropathy, (which is a common side effect,) & I told my Oncologist that quality of life was more important to me, than quantity of years. I told her that I would only take the oral Capecitabine Tabs. She was quite taken aback at first, but agreed.

I took these for 5 months, with no side effects, until she upped the dosage (as I was doing so well on them,) but then I developed Palmar Plantar in my hands & feet - which was uncomfortable, but relatively minor, & then I was taken off them.

However, the Tabs. alone allowed shrinkage, & I was able to have a Lung Ablation. Since then, I have been cancer free.

We all have the right to determine our own medication.

Best of luck.

Marianne x

Hi FionaC -  It sounds like you have a good team around you as they are on the case regarding monitoring - and like you we feel we are taking it one step at a time and trying to let future be just that! - I know it will be hard not to worry when the monitoring takes place but I feel for me it would be the same in any scenario, hubby already has his first monitoring scan planned for the new year.   For me I was still thinking about the decision for a wee while after talking to our Consultant and Oncologist but now a few weeks on the feeling has reduced and we are just getting on living in the present - lol or trying to lol! - My hubby too has been amazing - lol I think I do the worrying for him - praps a little too much sometimes as I feel I may be a tad over protective lol! - all our journeys are so different and its certainly a comfort to have so many wonderful people on here being supportive - no matter which paths we all choose to take - you and hubby take care and wishing you both well and a peaceful festive period - lol - we fully intend to enjoy lol xx 

I am on just capecitabine for T3 no lymph nodes. It was the hardest decision to make and friends/family were not much help to he honest as everyone seems split for or against. The second oncologist I saw said reseach does show a statistically significant advantage to taking chemo for my kind of cancer. I am 53 and no other medical conditions.  While the statistics do seems small I thought I can easily be that 1% that benefits. I thought of an analogy, I have green eyes wheras both my parents were blue eyed. The chances of that are about 1%....we can all be that 1% at some point in our lives.The side effects sounded very scary, but the reality is for me slight queasiness like sea sickness but very mild and red hands...I am over half way though the chemo now.  The care is very good while you are on chemo, blood tests for me every 3 weeks and if they see any reason to stop due to side effects they will or adjust the dose etc. There is no right or wrong decision but once you make a decision one way or the other I think your brain can calm down a bit.