My husband had his Ivor Lewis 6 weeks ago. Recovering well but yet weak and gets tired easily. He had the 4 FLOT chemo cycle prior to surgery which was very successful. At the time of surgery his tumour was reduced to 0. 7 mm. I understand was staged as T1aN0M0 After operation the surgeon said he is now cancer free.
After going through so much I am not sure whether we should do another 4 rounds of chemo. This I understand is the standard treatment protocol. Are we over treating? I am scared of the effects of post chemo on his already tired rundown body and it’s long term effects. Would appreciate feedback from others though I know each one has to decide for themselves, it can be a hard decision.
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RVNZ
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Yes yes yes yes yes yes !! Omg I just cannot stress enough the importance of following the Consultants advice and HAVE POST OP CHEMO! My husband was told at the outset that his protocol was Chemo , Op , Chemo . He was dreading it but in actual fact it wasn’t as bad as he thought . We have lost two dear friends fairly recently because they were either not offered or because they were told like us that “ the Cancer had gone “ didn’t feel the need to have anymore Chemo and it breaks my heart but in less than two years post op the Cancer returned and they died. The Consultant always said “why on earth wouldn’t you have that extra insurance?” You’ve been all through this major surgery a bit more just to give you insurance, it’s a ‘no brainer’ !!!
Each to their own decision but I cannot e why you wouldn’t after all you’ve suffered already just to make doubly sure
It’s hard when one has gone through so much already, one wonder how much more can he take. But on the other hand he is very fortunate his cancer was detected early and is treatable.
It is very true that the chemo and op and make you so bad, heaven knows how much my hubby went through, but oesophageal is so tricky as once it does spread it has all the key organs to choose from which makes it harder to combat. Being so early in detection can only be a plus. My husband's dad had the same thing in the 80's only he was diagnosed in the October and died in the Feb, once it gets hold, it is harder to get rid of. My own hubby lost his battle 3.5 years after diagnosis and needed 4 lots of chemo, the radio plus several ops. The key is to stay positive and have a reason to fight. You are right, the detection is also important, and he is in a good place with that. good luck.
Hi, I am 3 months post IL oesophagectomy. Similar staging and fortunate early detection.
I didn't have pre op chemo or radiation and was not offered post op, as the radical surgery for this staging was offered as curative surgery.
My understanding is that the tiny tumour cells were removed along with larger part of oesophaegus and stomach, lymph nodes. The CT and PET scans did confirm the staging and the MDT preference to do IL without chemo/radiation. Then what exactly the additional chemo is used for.
Please note I am writing from my own experience and perspective. If I have missed something please do enlighten.
The oncologist told us 4 weeks ago that since the pre/op chemo was very successful they would like to carry out the post op chemo too. My question is does he need it since his cancer is gone. It is dilemma for us as we want to take the best decision regarding his health. He is recovering very well after IL and I Am worried of the effects after chemo.
We are meeting the oncologist again next week, hopefully they can address some of our concerns. The chemo needs to be done within 12 weeks of operation.
Oh now I understand, you been advised by oncologist for post op chemo. In which case why shouldn't you not go for it. I have been through mill and still alive to type the tale. Chemo should be fine. Good luck with husbands recovery
I agree , if the Oncologist has highly recommended it as in my Tony’s case then surely it makes sense to listen to the ones with years of knowledge and experience?...remember he can always stop the Chemo if at anytime it becomes too much but at least some is better than thinking “I wish I’d listened “ . Good luck xx
My surgeon actually told me that the Ivor Lewis was recommended and after the surgery it was found there was no cancer. Bad side not much left good side no cancer
At this point I have been told by the surgeon the oncologist and radiologicist that surgery is the best option. Not ready to give in yet and exploring other options. Fortunate found very early. Will all posted. Next endoscopy May 24. Still working and getting in better shape. Have now cut sugar from diet.
I had similar views when my MDT preferr3d and recommended IL oesophagectomy as beat option in my treatment.
For me next 5 years will be testament for cancer survivor of not.
My understanding was that that the cells which showed cancer were immediate concern (adenocarcinoma at lower GE junction). Also the tissue on upper stomach lining and lower GE may be on similar pathway to change to cancer sooner or later.
When I was diagnosed nearly five years ago I decided to do everything that the consultants told me. The chemo may be awful but if the oncologist is advising that it is a good idea it is likely to be a good idea. You might be lucky and find the chemo is OK this time. Good luck. Haward
Yes Hayward , Tony was dreading it after the pre op Chemo and I L , but it fact he found it much less a struggle than imagined. All Trusts and patients tolerate different...go with your instincts .
Hi! This is exactly the same dilemma my husband and I faced. He also had 4 lots of FLOT, followed by surgery. The surgeon also said he had removed all the cancer. However, after much discussion and seeking a second oncology opinion, he decided to proceed with the second round of FLOT. The reason being that, whilst all the oesophageal cancer had been removed, there is always the risk that some rogue cancerous cells escaped during surgery, travelled in the system and took up residence elsewhere. Our philosophy was (and remains) that he has come this far, he might as well go the final furlong - a bit belt and braces. He, too, was very tired and weak after surgery but, having discussed it with the oncologist, the dose was reduced by 30% to 70%. I have to be honest and say that he's had worse side effects for the first 4 days after each session, but he's now had 2 - with only 2 left to go. You need to discuss this in detail with your husband's med team - we were told that not everyone manages to complete all 4 post op sessions. All I can say is that we wanted to hit this wretched disease with everything on offer! As my husband said - if it returns and he didn't do all that he could, he would regret it. At least he can now say that he gave it his best shot!
It's a personal decision and everyone is different. Whatever choice you make, I wish you all the best. Kate
I may try the surveillance route and do some more endoscopy. Lot of horrible stories about recovery. I need to work and make money to take of my family
Have you spoken to McMillan? Do you know or have you realised that when Cancer is involved then you get support in benefits? ... called PIP. It’s not ‘ means’ tested. I know you worry about your family like all do on here as did my husband who naively thought that he would go back to work within 2-3 months This IS major surgery the biggest on the NHS and it takes months and months to get over and if you don’t give your body time to heal then you will be off longer and longer and recovery will be delayed . Take one step at a time ...baby steps x
If the damage has started then it's wise to listen to MDT. What about second opinion. Please take on board the early diagnosis, for which many of us are fortunate to be offered curative surgeries.
Go for the chemo horrible as it may be. You may as well give your husband every possible chance and the post op chemo will hopefully kill off any possible rogue cells that may be in the system.
I had some of the drugs in the FLOT mix reduced post op and actually had fewer side effects with it than I had had pre op. I was only able to have three of the four doses because of another problem but I was told that even one session may help in the future.
I am now 3 months on from treatment and have just been signed off as cancer free. I feel incredibly lucky.
Hi I had the same dilemma as you and your husband. I decided to go ahead with the chemo after the operation. I had my first infusion and it made me really poorly so my consultant decided to take me off all chemo and just let me recover. My advice is to do what your consultant advices at least then you know you've given everything your best shot. This is a very personal decision and one only you can make.
Hi definitely give it a go. I had op 2 years ago and had chemo post op. I found it harder I was on ECX tho and I only had 2 drugs after instead of the three. I was told it was a mop up of anything that could break off in surgery and get into the blood. Yes our bodies have been through so much but once you get into the chemo swing it soon passes.
Hi. I went for post op chemo as they suggested it as a 'bibs and braces' approach despite a successful operation. It was very hard. Possibly because I'd lost weight but remained on the same dose as the pre op chemo. However I only managed two thirds of the course because I felt so ill, and the oncologist recommended I stop. Having two young children meant I should really go for it and give myself the best chance as I would have regretted not trying if it returned later. Good luck in whatever decision you make. Best wishes.
Well the surgeon who operated on my husband 6 years ago said that post-op chemo was poorly tolerated and he didn't have it. Maybe opinions have changed since then. Anyway, husband recovered well and is fine- now 83.
A very difficult question and really only one you can answer with the help of your oncologist.
Dave had pre chemo and was diagnosed T3 N2. Once he had the IL and had his histology, it was decided by the consultant he didn't need post chemo.
We were at the hospital having chemo with another gentleman who had pre and post chemo and the cancer returned within 10 months, dave is 16 months post op and doing quite well.
Hi RVNZ, personally I would speak with the oncologist and the surgeon. They will know the chances better than anyone. My hubby had intense chemo before , then the Ivor Lewis, but his tumour was on the Oesophagus and stomach where they join. This meant the tumour had to be cut on it's base line and there was nothing else that could be cut, making his chances for recurrence higher as they couldn't ensure every cell had been taken. He then had 8 weeks tube feeding whilst the silly join wouldn't heal, and about another 4 weeks to recover, then he started the chemo at the same intensity. A couple of months after the cancer returned and he required radiotherapy for 5 solid weeks. Personally if he had have been given this as an option at the beginning - although the chemo was agreed prior and after, the radio wasn't. We would have taken everything to hit it as hard as possible. Every case is so different to the next but have a really good chat with the team to see what is the best advice. Good luck.
1 am 2 years IL and still cancer free. Chemotherapy was very hard and left me with blood clots in my lower left leg. Thus I had to inject myself with Heparin for four months and have a filter put in via my groin before the op. My Surgeon and Oncologist ruled out any post op chemo and I cannot say I was sorry for that. That said I have been looked after monitored by Upper G I nurse and any concerns have been dealt with. The letter sent to me from my consultant states I am still cancer free. This arrived last week. very happy at78 and still doing okay.
We had to make the same decision but all studies and guidelines in the US say no chemo after surgery if no positive nodes and clear margins. My husband's tumor only had 2 foci, microscopic cells when removed and of 29 harvested nodes none were positive and all clear margins he was restaged at pathology downgraded to 1b. We went to Sloan Kettering in NY for a 2nd opinion and my husband was seen by an oncologist there with a PHD from Harvard University and he did not advise on chemo after surgery, there are absolutely no studies that suggest more chemo if no node involvement and clear margins. He said go live your life for you are cancer free. The protocol in US is chemo/radiation and surgery if not Stage IV. All the very best to you.
I have just completed my 2nd last post-op chemo block of 4 sessions. I am finding the post-op sessions more difficult than the pre-op, so much so that after a bad 2nd session I considered, very briefly, pulling out. This would have ben a major error on my part with 2 more to go on a chemo regime that highly recommends a post-op block of 4 sessions. In my case the tolerance for chemo is highly dependent on how sensible, or not, I manage my diet and medication.. More discussion with my hospital dietician is helping greatly and so far I now feel in more control. Thank god i did not terminate the remaining chemo sessions.
My husband is 4 years post Ivor Lewis. He ended up with sepsis with the pre-op chemo and was terribly ill. Got over the operation well. He obviously didn't want any further chemo. He is monitored well and remains cancer free. I think if you tolerate chemo then that's fine but there are many that don't.
I have just come back from an OPA meeting where the surgeon explained about chemotherapy, and said that all patients were different from each other both in relation to their cancer and in their reaction to chemotherapy. So there is not a black-and-white answer. The issue about chemotherapy is not clear cut in these cases which are diagnosed and treated very early.
I think it is one of those situations where you just have to trust the doctors, and take their advice. You do the best you can, as indeed the doctors do, and take your decisions for the best interest of the patient, including their quality of life, and then, if you can, look back with wisdom afterwards knowing that you made the best decision on the situation facing you at the time.
The other thing that he mentioned was Quality of Life issues after this surgery. Provided that patients survive for two years or more, most patients regain a reasonable quality of life after twelve months. Which does not means that you do not have 12 months of feeling awful some of the time, but the short term trauma does last for quite a lot longer and you have quite a lot more of that period to go through when you do feel unconfident about his progress. But it normally does get better and the general outcomes for patients diagnosed when the cancer is at the stage you quote are really very much better than average.
AlanM’s comment makes sense: with this cancer and it’s treatment options there’s no one best way. If docs you have reason to trust urge a post-op chemo round, worth considering.
Curious differences in treatment patterns UK-US. As Bobbie10 noted, for resectable oesophageal cancers many cancer centers in US now do 3 months FLOT-4 protocol, ~6 weeks daily radio+ specialized chemo, then minimally invasive surgery.
In the end, tho, what works best, gives good QOL can vary widely.
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