Stage 2 chemo or no chemo, that is the question - and I can't work out the answer! Help please.

Hi , My friend who’d undergone breast cancer treatment a couple of years before my diagnosis told me to take everything I was offered so I did - including pre-op chemo as part of a clinical trial. The way I see it is that I have done everything in my power to prevent a reoccurrence and if there was one then I would have no regrets and no ‘what if’ or ‘if only’.

Have they told you which chemo you would be having? Oxaliplatin is the nasty one but people quite often have just capecitabine in tablet form if it’s for vascular invasion. It’s hard to predict the side effects of chemo as everyone reacts differently but there are a lot of pills and potions to combat them and you are monitored on a regular basis. If the side effects are causing you problems them sometimes a dosage reduction can make all the difference.

At the end of the day it is your decision and you can start and decide to stop at any time. I was ‘late’ starting chemo and the oncologist said she ‘wouldn’t be unduly worried’ if I decided not to have it. It was tough at times and I wish I’d spoken up earlier about my tingly feet as they feel permanently sunburnt now but I’m nearly 5 years clear now so no regrets.

When I was deliberating about taking part in the trial the oncologist told me that if I was her sister then she’d tell me to go for it so perhaps you could try that line on the consultant?

Hope you come to a decision that you’re happy with and we’re happy to support you either way

Take care

Karen x

Thanks so much for your response Kareno62,

I was of the same mind when I thought the benefit might be around 10% but since the nurse I spoke to said that figure was on the high side, I'm wavering now. The chemo would be 4 rounds of Capox so the IV plus tablet form. I know that's not a lot but it still feels 'big'. I spoke mostly to the Registrar and I did ask her if it was her mum (she was in her 30's) what would they do and she thought for a while and then said 'have the chemo'. This did sway me for a bit but then the nurse said in her experience most folk in my situation took chemo but most folk had higher risk factors ... plus of every 10 people getting chemo in my situation only 1 actually benefits. But this doesn't take into account the peace of mind and that point you made about feeling you'd done everything in your power to precvent a recurrence.  This might be the tipping point for me. Not the logical facts but actually feeling I've done everything possible.

 Focussing on the chemo itself,  all professionals have said because of my fitness and good health I shouldn't have too hard a time on chemo (but of course can't say for sure). I will ask about oral chemo only versus IV plus oral because that was mentioned by the first nurse I spoke to but the Registrar never mentioned it and I forgot as I got caught up in the 'will I, won't I debate.

Really appreciate your response, it's helped me tease things out a bit more. We'll see how the call goes today! I think I might say move forward with organising the chemo (they'd want to get started in next couple of weeks) but ask consultant to call me back asap so I can hear her take on things based on her experience before I make final decision - and I will ask a version of that question.

Wow, I just read your personal story, you've been through the mill and I was so pleased to read that you've had another 'all clear'. Great news xxx

Hi Lizzieannie

I was in the same situation as you two years ago, following a left hemicolectomy. Margins were good, no sign in Lymph Nodes; however, some EMVI...cells found in a nearby vein.

My Oncologist was adamant that I did not need follow up chemo...& went into all the horrendous side effects it could induce. She also said that it would only give a 5% chance of no recurrence....which I thought was very low...& so, I went along with her professional advice....obviously also, only too pleased not to have to endure chemo. However, my daughter at the time, was not so convinced, & actually asked her own GP...what would he do - & he said, 'have the chemo.' but I didn't.

A year later, in March '20...following a CT Scan, two small lung nodules were discovered - & so, a return to the same oncologist, who recommended 6 cycles of the same chemo you have been offered, to hopefully shrink the tumour mets..& then have a lung ablation procedure. Naturally, this time, I did have the chemo...though I requested only to have the tablet form, Capecitabine (but not the infusions,) as being an artist, I was fearful of developing neuropathy in my hands.

Fortunately, the tablets worked in shrinking the tumours; so, six months later, I was able to have the lung ablation. My last CT scan was in March this year...which I was delighted to hear was clear.

With hindsight, I would now have asked to have the chemo following surgery. I found the the tabs. very doable, though it is cumulative, & by the six month, I developed palmar plantar in my hands & feed...so, my oncologist stopped the meds. (I was to have 8 cycles.)

It's a very difficult decision, but, I wish you all the best in coming to it. Obviously, everybodys' experiences will be very different...as you've probably seen on this site...when seeing posts discussing chemo.

Best wishes

Marianne 26

Hi Marianne, thank you so much for your response and I am so glad you had a clear scan in March - phew! I am so glad the treatment has worked for you.

You are right though it is a very difficult decision and what happened to you is exactly what is playing around on my mind. How would I feel if the cancer reoccurred and I'd not thrown everything at it at this stage. The whole thing of an oral only option seems to have gotten missed so I'll raise that when I get the call today. Thanks for that.

I am swaying back towards having chemo and partly this is because of the possibility I'd be kicking myself if I hadn't and it came back but also been reassured and reminded each conversation I've had with doctor and nurses that if I do decide to go ahead I can stop at any time and I guess because of the slim margin of potential benefit that's even more important. We'll see after this next call.

Thanks again for taking the time to share your experience. It really does help.

All the best

lizzieannie

Update, had another chat with the doc and have decided to go with the chemo. 4 rounds of CAPOX likely starting in a fortnight. Because of the MSi High I have to take the IV and oral combination so if I can't tolerate the IV Oxaliplatin then there is no point in carrying on with the oral Capecitabine as it doesn't work on it's own with this type of tumour. If that ends up being the case then I'm fine with that - I'll still have done all I can. Kareno62 and Marianne26 your responses helped me so very many thanks for taking the time. 

Best wihes

Beth x

So glad that you reached the decision, & to me, it sounds like the right one for you. 4 cycles is a very short duration....Perhaps keep a diary, & write down every day any side effects you may experience....but remember, if you have any adverse ones, there is always someone to speak to on the phone. When I had my chemo tabs...I was given a red alert card of numbers to call at anytime, which I did on a couple of occasions...& they were very helpful.

Let us know how you get on, & the best of.....Marianne 26

It's a relief and I think that tells me it's the right decision for me. Good suggestion about keeping a diary I'll do that, and doc mentioned the red alert card. I can imagine it's very reassuring to have it. Thanks again and I will update on progress once I start. 

lizzieannie. Hi Beth. Yes I agree that it sounds like the right decision and Marianne26 has given you some great advice. I’m attaching a link to a post that we started with some top chemo tips. You will probably get some side effects to varying degrees but sometimes it’s reassuring to know that something is normal and not to be unduly worried about. The red alert number is also for reassurance not just emergencies.

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/bowel-colon-rectum-cancer-forum/221768/chemo-care-top-tips--

Hope you enjoy tour weekend now the decision has been made

Take care

Karen x

Those hints and tips are great, thanks so much for sharing the link and I definitely will be worried about side effects so some knowledge that they are 'normal' will really help me and I think I'll be keeping that red alert card very handy! Hope you have a good weekend too.

Best wishes

Beth 

Hi

Probably a bit late, but in 2019 I had a large tumour removed along with a hysterectomy where cancer had engulfed my uterus. I had 3months of Capecetabine even though there were clear margins. Sadly the cancer recurred on the cervical stump and I have just had a massive surgery to remove it (total pelvic exenteration).

I think you've made the right decision.