I am new here and if I see something that relates to my situation I click on it and read the posts - was just about to reply and the post I was looking at was 4 years ago, the one above it - 3 years ago??
Is there anyway to search for recent posts?
Also, I had esophageal cancer and had the esophagectomy done by Ivor-Lewis method but when you search for that nothing comes up -- I guess oesophageal is the same thing but an overseas, London maybe?, name?
Sorry, lots of questions, possibly for a volunteer for the site?
I wanted to post something myself but am confused as to where to post it so that people can see it and I imagine that they wouldn't see it if it were in with 5 year old posts.
Thank you to anyone who can answer some or all of my questions.
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9 years ago July 2nd - 9 year survivor! Not at all as I was 9 years ago but I assume that that is pretty much with everyone, no?
I had my surgery done at M.D. Anderson in Houston, TX. Supposedly the best cancer center in the U.S. of A. My oncologist knew someone there and asked for a recommendation for a surgeon for esophagectomy - they do them all the time there.
My beef was, is and always will be that the M.I.E. (Minimally Invasive Surgery) was not presented to me, explained to me, etc. -- whether or not the procedure was for me or not -- I later saw on their site, in their pamphlets etc. It's the patient's choice! We have MIE and traditional open surgery - it is always the patient's choice.
Come to find out - my surgeon did not know how to do the MIE - did not believe in the MIE, etc. - that shouldn't have mattered.
I am sorry Dave C. - you asked me two questions and I am giving you a chunk of things that I feel.... you will find out - if I continue with this site, that I can go on and on and on...
I am 12 years out, my surgery was part MIE on the lower part and full on the top.
Full MIE was tried in the UK a few years ago but most have gone back to full surgery as more likely to be more successful and no more harmful to patients.
We don't have a choice on the UK as most consultants operate the same but some are better than others.
Count yourself lucky as only small percentage of patients get to surgery and even then it not always successful.
Please do ask any questions, have you checked out opa.org.uk
Wow! Part MIE and part open? I never heard of that.
As far as considering myself lucky - believe me - I do every single day. I know that so many aren't even candidates for surgery and then what? They have to just wait.. counting days... I mean that would be awful... I feel for those people and realize that there are several of them out there.
I just visited the site you pointed out- an overseas sight I see. We have those here as well - one is ECAN.org (Esophageal Cancer Action Network).
I am so glad to see these kind of organizations getting the word out - when I was diagnosed - I had never heard of it!
Cancer is just so Evil.
My brother, just 66 years old, passed away Jan. 19th of this year. He had lung cancer.
I thought I would be prepared - but, when the time came - needless to say, I was not. You just can not be prepared to lose anyone you love. Or anyone period.
Some how when Cancer is involved it makes it worse.
Hi there!! The responses you've received to your query should be emailed to you! Then you can respond to them and keep scrolling. That way you should get the most recent posts.
In my experience - having only been a member for the past 6 months since my husband received his diagnosis - I find it helps me most when I post something, ask for advice or have a query. Then I get lots of responses from loads of lovely people who share their experiences. I've never actually searched for something specific. As you rightly say, some posts are out of date and medical treatment moves on very quickly - not to mention the fact that everyone is different and treatment and after care varies depending on where you live. This site includes people from all over the world, and I have found it an invaluable source of support, advice and encouragement.
Keep posting and you'll get lots of responses!! All the best, Kate
Thanks Kate. It is working already. Since my post I have received the emails that you speak of and they are right here and I am responding to them right now.
Thanks again and the best thoughts go out for your husband. Hang in there!
Hi, I was trying to find a facebook group with no luck. In the end I rang th OPA and asked. They talked me through signing up with facebook. I the got the opportunity to post a ?. I get emails re new posts and have found it works well. Very old posts do come up sometimes though so just watch when they were posted
It’s a British site, so British spelling—and other differences you’ll notice.
Your experience at MD Anderson good example of need for self-advocacy. MI Ivor Lewis becoming standard even 9 years ago. So congratulations on surviving an open IL—and making it this well, this far.
You mention “...not at all as I was.” but no details. What is/are most challenging?
I had MI IL procedure at Mass General early February, following 3 months FLOT-4 chemo protocol and 6 weeks radiation/oral chemo. Pathology all clean; now challenge is to regain weight, muscle.
Hi docLocke... do you mean you had your procedure THIS past February??? How do you feel over all?
I will tell you something about the open procedure - you can count on a Very Long Recovery. 6 months after surgery I still couldn't pick up a bottle of laundry detergent, I couldn't open our blinds, I couldn't do a lot of things for what seemed like an eternity. Very weak.
What I meant by "not at all as I was"... I was a strong girl, healthy. Of course, I don't expect to go back to the way I was after such a major surgery but it sure would be nice. I am 5'5" and weighed approx. 130-135, which is about the range for that height, or so they say..lol.
Now, I do my best to stay at least 120-125, I am sure that is with everyone - if you don't eat as much you just aren't going to gain the weight.
The most troublesome is my scar - the front incision that goes from one side to the other. It has been sore from day one and is still tender after 9 (nine) years. Some times I get like stabbing pains but they don't last long.
You may ask if I have seen a doctor about this, yes, of course - they too are baffled about such pain.
Also, getting a bit off course here, I have like two "things" round in shape protruding from the scar area which my PC doc says are hernias. In past MRI's etc. the notes have said there is a hernia. So, I know that is completely another subject.
As I told someone on here earlier - you have to be careful with me because I can go on and on...
I still say good on you for tough recovery work. Within 10-15 lbs of pre-op weight is not bad, esp. in case of open surgery. Persistent pain in scar area might have to do with ribs and sternum adjustments during surgery? Hernia I’d think worth tracking down...?
Right—10 weeks ago; feeling good. I was fortunate: in good shape, worked out hard during 8 weeks between radiation and surgery. But still: 1 week in hospital on IV fluids, then after release 5 days clear liquids = 30 lb weight loss, mostly muscle, 185 to 155. Now eating everything, constant small meals. At the gym 3x a week. It’s slow but I’m grateful.
Also fortunate w/ surgeon: David Rattner at Mass Gen one of pioneers of MI.
I posted more details than anyone wants in a blog. Let me know if u want a look.
I am curious - u said 8 weeks between radiation and surgery - is that standard? As I recall - it was much less than that for me and then later came to find out that the chemo and radiation is still working in your body and maybe that is why they give the body a break? I don't know - seems to me I had more questions after everything was said and done -- now, isn't that unfortunate? However, in any blog I have seen - regardless of circumstances it always seemed that the people writing the posts were saying that patients such as our selves should go through the whole deal (consisting of chemo -radiation and then surgery)l I guess it boils down to the fact that if just 1 is left behind = big problem - fast multipliers - Evil!
From what I've read, surgical window after radiation is 6-9 weeks. The protocol I was on (FLOT-4) was reported last spring--all chemo/radiation pre-surgery (I was first at MassGen) because chemo tough to tolerate after surgery. But curious that stories of chemo split pre- and post-surgery fairly common on this site.
I got the email you sent but no attachment with it referring to a blog?
I had ask about the wait time for surgery after treatment because I was told something way different - I mean 6-9 weeks - that is like 1 1/2 months to almost 3 months plus???
So, if that were the case and people were told they only had to wait 3 - 4 weeks, not enough time has passed to have radiation and chemo do its thing.
Am I right on that? This message is pretty much for everyone but I don't know how to do it that way.
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