Chemo Decision

Hi Deb,

My husband had his operation in Oct last year and we faced the same dilemma, in fact we had a start date for his post-op flot, we talked ALOT about the best course of action, in the end we decided not to go ahead, his bloods showed 'no detectable cancer cells' and by the end of his pre-op flot he was suffering some nasty side effects, for us it was a real concern that more chemo would be too risky. I think the option of trying post-op chemo to see how you cope with it may be an option for you, whatever you decide, good luck and best wishes for the future. XX

Hi Deb, sorry for your dilemma but it has to be your decision. Although I don't think your oncologist is just putting you off, it's about weighing up any benefit versus destroying your immune system. I had no treatment prior to surgery or afterwards, I was T3 N2 M0 staging and 5 out of 9 lymph nodes were positive. Here I am 3 years and 5 months post surgery and doing ok, but as I said the choice is yours. Good luck with whatever you decide, kind regards Frank.

Hi Deb,

I had exactly the same dilemma except with ECX, i chose to go ahead, albeit on an agreed reduced dose due to the toxicity i had with pre op chemo. So far so good as i go into the final week of my first cycle. I just had that niggling "what if" keep working away at me, at least now i can say i gave it all to everything offered....my choice, everyone is diff, good luck with your choices.

R.

Thanks for your replies all, much appreciated.

I feel the dilemma is being taken away from me somewhat because of COVID-19. I was due to see my immunologist next week but yesterday the hospital called me to say I should not attend due to the COVID-19 situation. I fall into the 'at risk' category according to Boris Johnson i.e. I have the flu jab, although I'm not sure where I stand cancer wise as my surgery was 2 months ago and my last chemo was December so I don't know whether I'm at increased risk again because of how recent my chemo/surgery was. 

Whichever way I look at it, as much as my logic tells me I should be going ahead with the chemo to give me the best possible chance, I can't ignore what's going on in the world currently. I spoke with my CNS yesterday whose words were 'you have to think whether you want to fill your body with poison if it's not absolutely necessary'. Those words are ringing loudly in my ears at the moment. 

Hello,

I am going ahead with my full planned treatment programme (had the third of four three-weekly chemoT yesterday and an addition infusion of Magnesium stuff) and the first of twenty-five daily radioT.  I have to travel (driving as long as I am able - If I can't I will have to revise decision about contiuing - because otherwise it's two walks and two buses about 17 miles, 2 hours!).  My oncologist seemed pretty decisive about carrying on with the treatment, in spite of the risks of this damned plague.  I'm happy to carry on, pending any further developments.  She is arranging for a District Nurse to come to my home inject me with some extra stuff for days 5-10(?) of this current chemoT cycle.  I'm "bad with needles" (a wuss I'm afraid) and my husband has sight problems and couldn';t do it for me.  (Mind you, why I couldn't pop in to the chemoT suite next to the radioT suite and have them do it before/after my chemo I don't understand.  I feel a bit guilty about taking a District Nurse's tme for thos home calls when they are so overloaded with the plague.)

On the topic of "at risk" definitions I think have read in one of the NHS Covid-19 docs that people on chemo or having had it in the "last three months"  (please check this for yourself!, I can't find it at the moment) are considered at risk). 

Good luck.  I'm happy with my decsion about carrying on with treatment pro tem, but of course each patient is unique. (For what it's worth I have oesphageal, T2M0N0). I hope you feel comfortable with whatever you decide.

All the best to everyone.

I don't feel comfortable with any of it! 

But I have chronic immune deficiency so my situation is slightly different. During my pre surgery chemo my immune levels plummeted drastically and I had to double the dosage of my immune treatment, which still didn't bring my levels back up that much. 

My oncologist said she wouldn't be recommending further chemo anyway even if I wasn't immune deficient and there was no COVID-19. I've been told that the cancer responded really, really well to the initial chemo - nothing in lymph nodes, no vascular spread, clear margins,superficial tumour. I was told yesterday that as my final staging was so low and my tumour ended up only being superficial they could have actually removed it endoscopically without the need for the Ivor Lewis surgery but they couldn't tell the exact status of the tumour after the initial chemo until they opened me up (CT scan doesn't show in enough detail). 

Was T2N0M0 your staging at diagnosis? If so, what was your post surgery staging? 

My staging was T2N0M0 at diagnosis and T1bN0M0 post op. The tumour at surgery was just a thickening of the oesophageal wall.

I started post op chemo but after 2 days fell so I’ll I was admitted for 10 days and they said as the chemo had nearly killed me they didn’t recommend any more. That was six years ago next month.

Interesting.  My tumor is more substantial (the original endoscopist showed me a pic. - not what I wanted to see!), but I am not suitable for surgery (74 and a bit paunchy and general unfit).  Anyway, in view of the surgeons lurid description of the surgery I am actually relieved not to have to make that choice.

Great to read that all went well with you, and I hope it continues.

All the best to everyone