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Gary12345

Absolutely devastated no response to treatment

Hey everyone πŸ–. Very very disappointed in news .My dad did 3 months of chemo and 6weeks radiation and went to see the surgeon today the surgeon said the tumor has grown significantly and only said more chemo . Honest I feel numb like iduno . Has this every happened to anyone b4 ?

GD62Z

Hello @Garry12345 so sorry to read this news. Hope they have a new plan soon,. :(

Gary12345
Quote from @Meg:
Aw that must be a hard bit of information to get your head round @Gary12345 , are they going to continue with the same chemo or change it ?

Hey @Meg honestly I haven't clue it was only the surgeon he seen today so just have to wait and see .

Gary12345
Quote from @GD62Z:
Hello @Garry12345 so sorry to read this news. Hope they have a new plan soon,.

Hey @GD62Z I know its such a kick in the teeth . Ya I really hope so

Meg

Hopefully they will come up with something that will reassure you :x:

louise28

it may be worth lookingat a second opinion @Gary12345 is there just a primary tumour or is there spread to other organs...if just pelvis, pelvic exenteration may be an option.

Gary12345
Quote from @louise28:
it may be worth lookingat a second opinion @Gary12345 is there just a primary tumour or is there spread to other organs...if just pelvis, pelvic exenteration may be an option.

@louise28 Thanks for the advice Louise I will definitely look into that . The surgeon said my Dad doesn't look good to even have surgery and he said their be not point in doing surgery unless he could get all the tumor out .I don't think it spread they didnt say it did .

louise28

i would push anyway. Surgeons and medics sometimes differ in opinion

ijp30

Hi @Gary12345, that must be very hard news to process. After going through a gruelling regime to then be told no response to treatment must be incredibly difficult emotionally.

Treatment can sometimes be a bit of trial and error, they need to try a few things before they find the regime that does work for an individual. I've definitely read posts on here from people saying their first line treatment didn't work but they had a good response to their second line treatment. Do you know what chemo your dad was given as a first line? Folfox?

Good news that it hasn't spread though. That's a big plus.

Gary12345
Quote from @ijp30:
Hi @Gary12345, that must be very hard news to process. After going through a gruelling regime to then be told no response to treatment must be incredibly difficult emotionally.

Treatment can sometimes be a bit of trial and error, they need to try a few things before they find the regime that does work for an individual. I've definitely read posts on here from people saying their first line treatment didn't work but they had a good response to their second line treatment. Do you know what chemo your dad was given as a first line? Folfox?

Good news that it hasn't spread though. That's a big plus.

Hey @ijp30 Ya its the exact opposite of what I thought would happen. As shocked as am I know theirs literally no point being too down about it cause that won't change anything. He was on a strong chemo folfoxiri for 3months .

Gary12345
Quote from @louise28:
i would push anyway. Surgeons and medics sometimes differ in opinion

@louise28 when people get second opinion is that more of a private health care thing ? Cause my Dad only has a medical card .

louise28

hi @Gary12345 It isn't. I had a medical card and am a public patient. I am paying for the second opinion though at the Marsden in London. This is about 500 or so pounds, but I have been told by my GP that if they did offer treatment that wasn't availabe in Ireland, or was being refused here, then I would be able to get it paid for whether I'm public or not.

I believe anyone is entitled to a second opinion though, so you might want to be referred to another hospital or surgeon in IReland. Whereabouts are you? You could ask your nurse specialist about this or you could ask advice from the Irish Cancer SOciety and see what they suggest.

:x::x::x:

Gary12345
Quote from @louise28:
hi @Gary12345 It isn't. I had a medical card and am a public patient. I am paying for the second opinion though at the Marsden in London. This is about 500 or so pounds, but I have been told by my GP that if they did offer treatment that wasn't availabe in Ireland, or was being refused here, then I would be able to get it paid for whether I'm public or not.

I believe anyone is entitled to a second opinion though, so you might want to be referred to another hospital or surgeon in IReland. Whereabouts are you? You could ask your nurse specialist about this or you could ask advice from the Irish Cancer SOciety and see what they suggest.

@louise28 We are based in Galway Ballinasloe. Welll thats good news i didn't think a medical card was as strong as that .
Did you have to do your own research into your second opinion ?

louise28

No worries, I'm tagging @Frances Styles because her husband and her are (i think) also in Galway, in case she has advice.

No, all patients can have a second opinion. It would be a good idea to look at a colorectal surgeon maybe in Dublin or any specialist centre. I went to my GP and she asked my oncologist to refer me. She suggested a few people that I might contact but her advice was to go to a major international centre like Basingstoke, Christie or London.... I did a bit of googling but tbh, nothing major!

:x::x:

Gary12345
Quote from @louise28:
No worries, I'm tagging @Frances Styles because her husband and her are (i think) also in Galway, in case she has advice.

No, all patients can have a second opinion. It would be a good idea to look at a colorectal surgeon maybe in Dublin or any specialist centre. I went to my GP and she asked my oncologist to refer me. She suggested a few people that I might contact but her advice was to go to a major international centre like Basingstoke, Christie or London.... I did a bit of googling but tbh, nothing major!

Thanks very much @louise28 very much appreciated πŸ˜ŠπŸ‘.....I hope your treatment goes well πŸ‘

Frances Styles

@Gary12345, we're in Galway too. We discussed a second surgical opinion last week with my husband's oncologist and he is happy to refer. My husband was turned down for surgery at the Mater in Dublin, our oncologist still believes we should look at surgical options and is suggesting SIRT in the future. If he hadn't been keen to help we would have gone to our GP to get a referral. We've a bit of a wait as we want to see the chemo is working first, but I think when the time comes we'll look at the UK centres of excellence. Thanks for the tag @louise28, hope you're good too. Love Frances :x::x:

Gary12345
Quote from @Frances Styles:
@Gary12345, we're in Galway too. We discussed a second surgical opinion last week with my husband's oncologist and he is happy to refer. My husband was turned down for surgery at the Mater in Dublin, our oncologist still believes we should look at surgical options and is suggesting SIRT in the future. If he hadn't been keen to help we would have gone to our GP to get a referral. We've a bit of a wait as we want to see the chemo is working first, but I think when the time comes we'll look at the UK centres of excellence. Thanks for the tag @louise28, hope you're good too. Love Frances

Hey πŸ‘‹@Frances Styles. I hope you and husband is doing good best wishes with his treatment πŸ‘.....Ya the thing is I wanted him to get a surgeon up in Dublin from the start and not that I don't have faith in the surgeon in ballinasloe .But I just know the surgeons in Dublin would be better experienced in my opinion ..... Do you think if surgery was ever a possibility you can switch to a Dublin surgeon?...And would that change his oncologist team to Dublin ?

Frances Styles

@Gary12345, you can definitely ask for a referral to Dublin, there are some top surgeons there. It wouldn't change your Oncologist, unless you want a second opinion from an oncologist too. If you're happy with the Oncologist I'd stick with them as it's local and easier for your Dad and his appointments. Love Frances :x::x::x:

Gary12345

Ya think I will ask for a referral for the surgeon if surgery can be done please God πŸ™....I think it makes sense if the opportunity was there .....And is it the GP you ask for a Surgeon referral or the Oncologist? ....See i have sisters too and I don't want them thinking I'm just being a know it all and disruptive to things . But I want the most experienced hands if surgery is a option. ❀

Frances Styles

@Gary12345, we asked our oncologist and he's supportive of a second opinion, so that would be my start point. If he's not supportive, I'd go to our GP who is great. I'm sure they won't think you're being disruptive, you just want what's best. Do you know what chemo your Dad will be changing to next? There are many stories where a change of chemo has been a game changer, I hope the same for your Dad. He's very lucky to have you supporting him and seeking the very best chance for him, love Frances :x::x:

Gary12345
Quote from @Frances Styles:
@Gary12345, we asked our oncologist and he's supportive of a second opinion, so that would be my start point. If he's not supportive, I'd go to our GP who is great. I'm sure they won't think you're being disruptive, you just want what's best. Do you know what chemo your Dad will be changing to next? There are many stories where a change of chemo has been a game changer, I hope the same for your Dad. He's very lucky to have you supporting him and seeking the very best chance for him, love Frances

@Frances Styles Ya hope soo . I'm not sure whats the next step I think the surgeon said theirs a meeting this Friday and didn't say much after that........Ya I've seen some very inspirational posts and outcomes on this and that gets me and others out of despairing moments to kip the fight up πŸ‘ŠπŸ’ͺ And to stay optimisticπŸ‘....Thanks very much Same to you Frances ❀. And wishing your husband all the best πŸ‘