Hi everyone we’ve got an appointment with the oncologist tomorrow to discuss whether or not to have the 4 cycles of FLOT. My husband was staged as T4a N1 or 2 and M0 and it was touch and go whether he could have the surgery. We were told because the tumour was so large and bulky he’d go for a trial dissection and really they were clear there was a significant chance they couldn’t operate. Fortunately they could and did 8 weeks ago. We’ve been told the margins were clear but not as large as they would have liked (scored 2 on a scale of 1-3!) and at the post op meeting with the surgeon we were told they recommended more chemo but only 50% of people have it. To be honest the surgeon was generally a bit negative, said they couldn’t say whether the chemo will actually do anything and implied that the cancer will probably come back anyway!
So we’ve got to try and decide what’s best to do given the usual impact of the surgery of significant weight loss, dumping syndrome, only just starting to eat again etc. so husband isn’t too taken with the idea of chemo and another load of side effects. However we know it might zap things floating around!
We’d welcome people’s thoughts and ideas
Thanks
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Tighan
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Wait to see what your oncologist thinks tomorrow before you make a decision, it's his or her specialism after all. I didn't have post op chemo because the first round seemed to have done its job but different circumstances (T2, N0, M0) and when they took it out the consultant was convinced that they'd got it all. You need the full picture from the oncologist before deciding though I can fully understand your husband's reluctance to go through FLOT again.
I was pretty much the same 'stage' as your husband and opted to have everything they would throw at me, regardless of the short term unpleasantness. This did include post op chemo. My tumor was 13cm in length, they got good margins and were positive after surgery, but I was still keen to do what I could to mop up any stray cancerous cells.
However, I was 41 with a young family so wanted to buy every extra year that I could. Different circumstances may have made me think differently.
Whatever you and your husband decide will be the right decision for you.
in some countries they don’t do chemo post IL unless there is proof of disease. Other locales do it automatically. Keeping in mind the more you have the more resistant cells can become to chemo. Conversely the view you have chemo is you go for the cure now.
I would have thought scans and blood tests for tumour markers could guide you in a couple more months.
Hi Tighan,Just read your profile and I would recommend that your husband think seriously about having the chemo.
I am currently 1 and a half years post Ivor Lewis surgery. Because of a cancer cell showing up in the pathology report, it was recommended that I have 12 rounds of "mop up" chemo. I'm not gonna lie, it was bloody tough going and I hated every second
Monday when I was due for another dose.
Was so miserable, my oncologist said we could stop treatment after 9 rounds and that most patients don't go the full distance.
That was in August 2022. I reakon it took a good 6 months to finally feel like my old self. Hopefully the next scan will show no further spread, fingers crossed anyway. I have lost about 23 kgs during this journey with lots of funny little things happening to my body, obviously due to the new reconstruction of my innards! I guess everyone is different, but I reakon while there is life there is hope. Don't give up.
Good luck and best wisheswith whatever you decide to do.
I agree with the advice given above. I am close to three years post-surgery (T3) and had both pre- and post-op FLOT. The latter was tough, there is no pretending otherwise, but it was what my oncology team advised.
Something to ask your oncologist tomorrow is what alternative/s there is/are. In my case, my tumour was HER2+, so I also had a year's worth of Ogivry (Trastuzumab) to help with the mopping up. My oncologist later admitted that, because of the Ogivry, I probably didn't really need the FLOT as well, but at the time we didn't know whether my scheme would cover this drug, or for how long.
hi ..I had FLOT chemo before and post 4 rounds on both ..coming up to 3 and half years ago ..unfortunately I found out last September that it has returned and now inoperable..oncology told me that if I hadn’t had the post FLOT I wouldn’t of lasted this long ..but. Do chat with others who had similar cancer and never did the post chemo and are still clear ..so it’s a difficult decision,I personally gave it my best shot,but it hasn’t worked…I started capox chemo last November I’ve had 6 more rounds..and it’s a killer..worse than FLOT for side affects..but after cycle 3 had a CT scan and it had shrunk from. 1.4mm to 1.1mm..I’ve said I need a break so not glad chemo for 2 months today ..and going for my latest CT scan results today so fingers crossed..I’m a big fan of mountain hiking ..and have done snowdon few weeks back for the 8th time plus another 4 summits ..so you can recover..so try and keep fit whenever you can ..I find it keeps you positive and ready to face anymore treatments..the decision is totally yours ,only you know if you can take it ..but I’d say give it your best shot at survival..good luck and keep us posted
good news yesterday..condition is stable..no movement,so go away and enjoy life ..and we’ll review you again in 2 months time ,unless you develop new symptoms..😊😊😊🙌🏻 hope your well
aww, that’s great news. Take the advice and enjoy your life.
As for me, yes I’m good at the moment apart from horrendous dumping syndrome episodes which knock me out for a few hours. Other than that,like you, enjoying life x
it’s seems something we have to live with..I can have 4 maybe 5 days without dumping then get it twice a day every day for weeks..we still here tho 🙏🏻 take care
hi ..it’s called dumping syndrome..best google it as I’m not great at explaining things ..but basically for me anyway..happens for various reasons but caffeine, or any sugar mainly the body sucks all the water from every where to digest it ..makes you go lighter headed ,feel sick sometimes bad diarrhoea..and even pass out for a short while..then when you get back to normal in about an hour your dehydrated as obvs you body has used up all the available liquid inside …I can go a week without any thing ..but then ‘dump’ 3 times a day ..it’s cause your food and drink ‘dumps’ into your intestines as we don’t have a stomach now to digest everything..as I say I’m not the best at explaining things and don’t know the medical terms so check out online ..good luck
Hi - great news that your husband had the surgery. I was T4a N1 but chemo shrunk it for surgery - that was nearly 8yrs ago - I only managed one chemo session after due to severe sickness and a hospital stay but I’m so glad I managed one lot - it’s a very long slow journey and one you need to take one day at a time - keep thinking positive and stay strong - all the very best
Thanks to everyone for the replies. We had a helpful discussion today and the oncologist explained the margins of the tumour were clear but only by a millimetre so there could have been microcells that were missed. He told us the surgeons removed 40 lymph nodes but only 3 were cancerous (so only one more than we already knew about). He said the post op FLOT is belt and braces and could have a small benefit. Apparently the tumour did shrink a little bit (3 on a scale of 1-5) so hopefully the chemo will kill anything floating around 🤞
My husband mentioned that his toes are basically numb so they’re going to keep an eye on this and will stop the chemo if this gets worse. The oncologist said we could look at acupuncture as a way of reducing some of the side effects particularly nausea and fatigue so we’re going to try this. Just wondered if anyone else has had acupuncture?
good morning. Always a difficult decision and you must be guided by your med team. I believe long term survival rates are much better if post op FLOT chemo taken - ask your oncologist. I am now 5 years post Ivor Lewis. Adjuvant chemo is no fun but it is doable and he can reassure himself that it increases the chances of a curative route for the future - again ask the oncologist. For me it’s a no brainer. Good luck to you both.
Quick update - he’s done 2 rounds but now stopped ( decision made by oncologist) as peripheral neuropathy in feet was getting worse and can’t risk walking problems. We’re pleased he’s managed 2 and relieved it’s ended! Feels like the right decision for us x
Good on your guy for going with the “belt/braces”. In our world it’s all about probabilities, not certainties (except the eventual one, of course) so each of us has to balance risk/reward in our own way. I’m just now 5 yrs post IL (FLOT4 + rad; no post chemo) and peripheral neuropathy is one of those gifts that chemo just keeps on giving. Hands and feet, with varying intensity that seems to be whimsical—no obvious external or internal trigger other than extreme cold. Acupuncture did not work for me, but it has for others and I’d suggest try it. It’s one of those rare creatures that’s zero risk/high possible reward. Walk couple miles/day, regular gym for weights helps keep a status quo. As for hyperactive mucous membranes I dunno. Can’t imagine needles in nose. My long-term solution: lots of tissue. Live gently, love fully, be amazed by small things.
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