Don't worry about the questions - ask away!! That's what this forum is all about.
Yes my pre-op chemo was very effective in reducing the size of the tumour (I'm not sure of the exact post-chemo staging but was told at the time that my tumour was "particularly sensitive" to the chemo).
I had a scan between ending the pre-op chemo and two weeks before the op itself - in my case they found something new in my bowel area which was a massive worry for me at the time but it turned out to be a harmless polyp (which they told me it would 99.9% be)...I'll never forget the day I had that particular procedure (called a flexible stigmoidoscopy, not pleasant at all) it was on the 23rd June 2016, which was my wife's birthday and also the day of the Brexit vote!! The things that stick in your mind eh....
If your husband has been offered surgery after the chemo then that in itself is positive, it sounds like the treatment path is a curative one and they know what they are doing so I would not worry unduly about the gap between chemo and the op ...
It was 4 x 2 week cycles of FLOT, a CT scan, then the operation and then another 2 x 2 week cycles of FLOT afterwards. I not 100% sure but I think this is the current standard treatment.
Sounds about right. I think my last chemo is 4x2 FLOT though. Operation is on 30/12
cumbrialad is absolutely right, that's a mistake in my message. I had 4 x 2 week cycles of FLOT after my operation
Thank you so much for replying to me. My husband just has a small op next Friday. I think they called it laparoscopic staging. He has his first appointment with the oncologist the following Wednesday to discuss chemo. So fingers crossed the laparoscopic staging is ok then he can have chemo then the operation. He is staged at T2 so hopefully this operation doesn’t find anything else. They have discussed the op with us and said he can either go straight for it or have chemotherapy first. I think we have decided to go for the chemo then the op to get the best out of this. I just want things to move forward now as every day just drags and it’s crippling our mental health which I expect every one of you can understand. Thank you so much everyone. You feel so alone but hearing from you all is helping xx
Hi Judy, my husband was diagnosed with terminal OC in July 2008 and only offered palliative chemo (ECX), he started treatment in August and by January everything changed. The chemo was so effective he was able to have surgery - that eventually happened in June 2009, 11 months after diagnosis. I know this is quite rare but results vary so dramatically and the pre op treatment could make things much easier post surgery. Scans should happen fairly regularly throughout treatment so you will hopefully know what’s happening. Don’t worry about asking questions, it’s a frightening time for you and there are lots of good people here who will try to help you through it.
I should have added that he is now 10 years post op and living a normal life, keep positive!
Best wishes to you both from another Judy
Oh wow. That news must have been shattering to receive but to then get amazing news that the chemo worked is amazing.
Robert is T2N0M0 at the moment and we just want the chemo to start but they think it won’t be until after Christmas now. But can I just say receiving these messages from you all is definitely liking our spirits. Our life has been crushed with this news but these positive messages are helping us so much. I pray we can get this cancer out of my husbands body I live and breathe my husband and thinking I could end up without him is just unbearable.
Thank you so much for telling me about your husbands journey xxxxx
It is a long and thorough Journey, everyone is diff...just be positive, keep asking questions and good luck...
here is my pathway to date. :-)
Just read your post. You have already had some top advice delivered by so many great people in the same position.
We were no different and asked the same question. We were concerned about that wait. I was T1b and was always given the option to go straight to surgery esp if I had bad effects from the chemo. Is your husband due to have FLOT or ECX? If its 3 cycles its probably the latter. Chemo can destroy cells to the point that no cancer is detected at pathology. The true story is not revealed until the oesoph is taken out though.
My staging didnt change but then again my tumour couldnt be seen on any scan. My onc told me the difference between stages is literally micrometres.
Completely your decision but as someone said above the chemo mops up any seeds that might be floating about and that does give you a level of confidence that you've done all you can when you go for surgery.
I went for pre op chemo but not post. If I'd had node involvement it would have been a different story.
Ask your oncologist what the latest data is or what results they are getting locally?
It took a month to the day from my diagnosis to starting chemo. It was the longest month of my life but things moved pretty quickly after that.
Thank you so much for your reply. My husband was diagnosed on the 31st October but he’s had no treatment at all yet which is worrying.
Can I please also ask is all the oesophagus removes because we’ve spoken to two different consultants and they’ve said different things. The first said he would cut a bit out and yet the other said it’s all coming out. So we just don’t know what’s going on.
Thank you again for replying
It is a worrying time. Do you know where the tumour is? Mine was on the junction of oesoph and stomach so I lost half my oesoph and a third of my stomach.
Do you know if the tumour is adeno or squamous? The latter can occur higher up so will need more taking out.
You don't mention your treatment centre but when you meet the surgeons or oncs, write your qs down and the answers. Ask for diagrams if appropriate.
I dont know if this helps but before my chemo I started to take turmeric with manuka honey. It was v soothing for reflux and there was some research done in Ireland that shows turmeric reduces OC in mice.
It seems to be quite normal for there to be a gap between diagnosis and treatment starting - some say it’s to give the patient time to adjust and others say it’s a matter of how busy the chemo suite/department is. I was always in the “stamp your feet the loudest” camp when it came to anything being done although we were quite fortunate in that, generally, everything flowed smoothly without long waits. I know it varies tremendously depending on the hospital so it would be good to try to keep in close contact with at least someone from the team (our Senior Upper GI nurse was wonderful and always ready to help in any way possible) so that you feel reassured about what is happening. Ignorance is definitely not bliss - ask as many questions of the team as you need to, they are used to it and they have all the experience.
My husband had a full oesophagectomy but you have to get clarification about what your husband will need, conflicting reports will only add to your stress, it takes time to get everything clearer but keep persevering, you’ll get there.
Best wishes. Judy
you are right ignorance is definitely not bliss when it comes to this. I’ve left a message on her answerphone and I’m going to ask her what operation he is having as it’s conflicting and we feel like we don’t know anything. We also find it very difficult to understand the consultant due to his accent.
We are at Luton and Dunstable hospital and although the gi nurse is wonderful we are so scared that he is being forgotten about. They talk about the two week action but he’s always been over that.
His first endoscopy was on the 10th August and his notes were not looked at apparently and they only read his notes in October. So we don’t have any faith and we are so scared.
I really do need to thank you all though because hearing from you really does help. I feel so alone with this and my husband is my only family. I just want him to survive this. He has the laparoscopic staging on Friday but pet and ct shows it hasn’t spread YET.
Sorry for sounding so desperate
can you give me your info on your blog please. I read it last night but I can’t find it now and I’d love to show my husband your journey and photos. thank you
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