Oesophageal Patients Association
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Treegirl

Hi anyone got any advise hubby diagnosed in February after many tests treatment finally started in April 5weeks chemo and radiotherapy with op to follow treatment done hubby now picking up and eating a little however after a ct scan as shown inflamed lymph nodes we have been told that the op may no longer be an option for him Dr didn't have all the information for us so now we have to wait til next Tuesday to find out obviously we're worried sick anyone got any advise for us hubby is T3N1M0 thanks

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That does sound hard Treegirl . I don't know what to say really except that I understand that CT scans are less revealing /don't give the clear picture that we might think they do .

I've always understood that it's not until they do the op ,remove nodes and tumour and have them tested that a much clearer picture can be given .

There are variations in treatment between countries and hospitals .Whereabouts are you ?

Take each day as it comes ,remember that quoted outcomes are based on averages and that it can't be predicted how an individual will fare .

Keep in touch ,let us know how Tuesday goes .

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Thank you for your kind reply we're in Wales I'm just hoping that they will do the op otherwise I be looking for a surgeon who will but don't know where to start I've heard about different treatment but don't know much about them when I look online so much comes up take care Treegirl

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Hi again .I so feel for you .There's practically nothing worse than waiting for a meeting to get or discuss results .Leaves you in limbo .

At least when you have results you can plan ,know where you are ,move forward .Even if it's getting your head round bad news ,still better ( I think ) to being in limbo .

The positive news is the M0 which means it hasn't spread to other parts of the body .

I wonder why they are suggesting that they might not operate ? Could it be the position of the tumour ? Wrapped round something ?

I think I had 3 x 3 lots of chemo ( each " lot" consisting of a day of infusions at hospital followed by 21 days of chemo tablets at home ) before the op and the same after .

Stay with us here Treegirl and if we can't answer questions we can at least hold your hand .

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Hi we've been told today that hubby has to have a biopsy on lymph nodes before op going ahead but we've also asked for a meeting with our surgeon in the hope that he'll operate anyway

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I'm so sorry that you have more tests, more waiting and uncertainty ahead of you .

Have they said how many nodes they want to biopsy and why it's necessary to establish lymph node involvement before they can decide to operate ?

I do hope that you can meet with the surgeon soon and get some more info.

love and strength to you both x

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Hi they want to do a biopsy on 2 enlarged lymph nodes to make sure they not cancerous even though hubby had pet scan just before chemo and radiotherapy started

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I really wish I were more knowledgeable and knew what to say . I wonder if they're investigating how effective the chemo and radiation have been ? Do they suspect that the lymph nodes have become enlarged during the treatment ? But I think scans can be deceptive and show inflamation where there is none .

Also ,in my case ,I know the scan after my chemo showed no reduction in size of tumour but they said that could be due to sort of scar tissue where the chemo had killed off cells and wasn't necessarily evidence that chemo hadn't worked .

Be pushy about seeing the surgeon and maybe the consultant ? You need to understand what and why things are being done ,and how the results of the tests will inform the medics .eg what will make them decide to go ahead and operate and what would make them decide not to ??

Thinking of you .

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Hi seen the surgeon today he's told us hubby has to have biopsy if it's positive then no op if negative then will go ahead apparently it's 2 lymph nodes that he says were slightly enlarged to begin with we asked why we weren't told he said because they didn't think they'd be are problem but are now even more enlarged and it's possible cancer has spread even though all scans and test had said that it hadn't and the fact that it would have spread during hubby having chemo all very confusing

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That does seem very confusing !

Why don't you start a new thread with a title something like

Not sure if hubby will have op ,confusing results .Any advice ?

might attract more replies .

I'm frankly puzzled .

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Maybe your surgeons are putting a possibly pessimistic picture to you in case of a genuinely poor result from the CT scan. I think that was the case with my husband but they did finally decide to operate. That was eary 2012 and he's fine now at the age of 83.

Thinking of you and hoping for a good outcome.

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Hi the waiting game is horrible but needed so they can have a big meeting about him and plan treatment. Is your husband physically fit with no heart lung problems? They take everything into consideration. CT scans not always reliable.i had inflammed lymph nodes 1 yr post scan but had been getting over a chest infection and after 2 more scans they had decreased. You can have a second opinion if you are not happy.

Best wishes

Debbie

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Post op

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Yeah hubby for and well has no other medical condition apart from this

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After radiotherapy two years ago,my good lady felt much much better after it even though one oncologist told us it wasn't possible and that chemo was the only way,

My wifes health improved a lot and gave her more precious time after shrinking the tumour,having said that, she had 5 days of intensive treatment as opposed to the usual 10 days that would have been prescribed for her particular cancer, the chemo was very intensive and the side effects awful for her, radiotherapy proved less invasive and more tolerable for her to endure, lots of luck to you both ....

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