Treatment Decisions

Hi,

I had small bowel cancer 10 years ago with 3 lymph nodes involved. I had a right hemi colectomy and offered adjuvant treatment exactly what your husband has been offered. I made the decision to take it as a belt and braces approach. I’m still here 10 years on. Unfortunately it has re appeared however, the positive I take from it is the treatment has given me another 10 years and hopefully more as don’t plan on going anywhere just yet. 

Hi Georgia L. Yes it’s a personal decision and a tough one. My friend had gone through breast cancer and she advised me to throw everything I was offered at my cancer so I did. There are a lot of side effects with Capox but that’s not to say that your husband will struggle with it - there are lots of meds to help with any side effects and his quality of life might not be affected too significantly. I managed to still go out for daily walks and work part time in an office during my chemo - I do still suffer from neuropathy in my feet which is annoying but something I can live with. PattyK’s hubby is having Capox at the minute so hopefully she’ll pop in too.

Personally I felt that if the cancer returned then I knew I’d done everything I could to prevent that and wouldn’t be thinking ‘if only I’d had the chemo…….’ Would he be having 4 cycles? He could give it a try and if he felt he was struggling then the dosage could be reduced or he could choose to stop altogether? 

It’s good to hear that your hubby is recovering well from the op. Unfortunately cancer can seem to take over both your lives but I hope you’re still able to get out and meet up with friends for coffee and cake  - it’s important to look after you as well as the patient

Take care

Karen x

Hi Georgia!

I really do get what you're going through because my husband and I are in the same boat as you. His cancer came back in May this year after going in for the operation to have the tumour removed in January this year (2022).  We were absolutely devastated about it all considering the surgeon and her team did their damnest to get rid of it all obviously some of these little micro cells they talk about `escaped` and were able to form again. Th surgeon when we met with her again in June was just as upset as we were because she was convinced, they got it all and everything round about it was clear (the clear margin thing they talk about). This time surgery has not been an option because where it has come back it's more or less came back in the same place in his bowel lining, but it is where it is it would be difficult to get to with surgery so chemotherapy it has had to be, and Jay (my husband) is up for anything they want to throw at us to get it. The cancer we have been told has metastasied slight which means it may not be curable but manageable. He has been going through the cycles of Oxaliplatin by infusion at day clinic once during his cycle and then the Capecitabine tablets 10 a day (5 in the morning and 5 at night) for 14 days then gets 7 days rest without any treatment or meds at all. He also has type 2 diabetes so is fighting on two fronts. He has tolerated the chemotherapy treatment well (you were asking about this) the only real side effect he has is the neuropathy (tingling in the fingers and toes similar to pins and needles) and he can't deal with the cold in the first days of his cycle so going into the fridge taking ice drinks etc things like that can be out and drinks need to be room temperature. They started Jay on low dose Capecitabine which was 4 and 4 and because he was tolerating it well upped it to 5 and 5. I think they started him on low dose Oxipalatin too but upped that on his 3rd cycle too. 

All his tests throughout his chemo have come back negative. His blood tests throughout the chemo treatment have come back normal and his liver and kidney functions are good too. We thought he may have needed a stent fitted to his kidneys, but this won't be necessary now as his telephone consultation with the urologist was decided that since he was passing urine ok and taking in plenty of fluid, he was to continue just doing what he was doing. His blood sugar levels for his diabetes have reduced also. The surgeon didn't take to kindly when he told her that his blood sugar levels had not been monitored since leaving hospital in January after the operation and I think she went on and read the riot act with our GP because apparently while he was in getting his operation, they were monitoring his blood sugars every other day and his blood sugars were sky high. So, this led to him getting put on an extra diabetes tablet Forxiga which he takes along with his Metformin and seemingly both tablets are doing their job and there has been a considerable reduction in his blood sugar. He has lost weight too at the start of his treatment he was 143kg and is now down to 133kg which they are happy with because he is a `big chunky bloke` The only thing is we have a CT scan this Thursday. As he has had 3 cycles of chemo treatment, I take they get a scan just to see how its progressing and then gets assessed to see if anymore chemo is needed or if something else can be done. Mentally Jay is not good as you could imagine he finds this a bit `all consuming` at times and I think its just the thought of suddenly having to take all these tablets. The scan to is getting him slightly keyed up because it was a CT that confirmed the cancer had returned and this is when they find things you didn't know were there. At the end of the day though it is a personal thing as Karen062 says but it was a `no brainer` for us and we just decided to go with it. Take Care and my best wishes to you both. 

Vicky x

I get the sleeping thing Georgia! I had this too only I was sleeping ok, but it was getting up to face the day ahead that got me. I still feel like this somedays, but you get through it. Before he got his original diagnosis, I was really `low` I could hardly eat anything without physically trying to throw up and just kept thinking the worst. When he got his initial diagnosis in July 2021, and that they said it had been there but hadn't spread and was treatable, I started to feel 100 times better but then felt I was back to square one in May this year when they said the cancer had come back and here we are, fighting again. Just hoping this treatment will give us some form of result. Take Care. 

Vicky x

Hi Georgia

I had a left Hemicolectomy in May '19. which showed clear margins after Op. & no Lymph nodes affected. However, my biopsies did mention EMVI (Extra mural veinous invasion,) affecting veins in localised site. However, at my first meeting with Oncologist, she was adamant that I did not need any adjuvant chemotherapy - & talked about all the dire side effects of chemo. & the very small percentage rates & advantages involved. Obviously I was pleased not to need Chemo. & I trusted her decision. However, I was also a little worried, & my daughter also. She happened to be visiting her private GP & mentioned this to him. His answer was 'If that was me, I would demand the Chemo.'

I decided not to; trusting the Oncologist's judgement & expertise. However, at a follow up CT scan in March '20, two small Lung Nodules were diagnosed - & then I was offered Chemo to shrink them, prior to a Lung Ablation. I was offered Oxyplatin infusion & Capecitabine Tabs.for 6 mths. I declined the infusion, (for personal reasons,) & just took the Tabs. for 5 mths....which showed shrinkage of nodules. In Oct '20, I had the Lung Ablation treatment, & so far, follow up scans have been clear. I had no side effects from Capecitabine, until the 5th month.

Based on my personal experience, & with hindsight, I would have opted for some form of Chemo. as a back up/ possible preventative (following surgery,)...to avoid other procedures down the line.

Yes, it's a very difficult & personal decision, & I wish you both well in your decision.

Marianne x

Thank you - it really does help to feel you are not going completely bonkers with the worry - the emotion is just such a rollercoaster as you say you get some time when you can sort of feel a little more normal and then you get to dreading the next appointment just in case - hope the treatment brings the results for you - you take care too xx 

Thank you all for your messages it really helps to have folks out there that are going through the same and your responses have given us food for thought in thinking of the right way forward - generally we have a really positive approach to things but I guess Cancer tries even the most resilient souls - thank you again so much xxx 

Hi @Georgia L

I’m coming at this from a slightly different perspective (different cancer) but I did have a recurrence 9 months after treatment, though I’d had no evidence of disease at my scan. If I could have done anything to prevent that recurrence by having additional treatment I would have taken it, and known I’d done all I could. I would have thrown everything at it to reduce my risk, even by a small amount. Just my opinion, having actually been through a recurrence. 

I often see people in cancer groups of all sorts talking about recurrence as if it’s something easy and straightforward, but it can be more difficult to treat, as mine was, and it can be a whole new ball game. I was on 3 monthly checks, but it still came back. It seems like you have your preferred option, so I wish you the best with that.

Sarah xx

Thank you Sarah, your reply gives much food for thought - we are still weighing up the pros and cons and all the responses here will help us arrive at the right decision for us - such a special community on here - thank you again and wishing you well and hope you are coping as best you can xxx 

Thank you-I’m doing ok overall now but it was a tough path to follow! I thought at my first diagnosis that scans picked up everything, but soon learned they can’t and microscopic cells which aren’t seen can grow again, in my case very quickly. I didn’t even have any lymphnode involvement. I don’t intend to scare you, but just wanted to say what it can be like when someone has a recurrence. This community is very special in that you can read lots of different stories to help inform your decision, which is very helpful.

Sarah xx