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Beating bowel cancer together

Stage 4 bowel cancer

You can find information about advanced bowel cancer on our website, including our Treating advanced bowel cancer booklet. You can also join our Living with stage 4 bowel cancer Facebook group.

michelle19

Peri nodule

Hi all, I'm a newbie here,so looking for some positive experiences. I was diagnosed last July with stage 4 bowel cancer. I had a bowel resection in Aug, followed by 3 months mop up chemo. The only spread I had, was 1 microscopic peritoneal dot, which was resected with the bowel. Fast forward to June this year, my routine bloods showed that cea had shot up to 99 from 2.3. Had emergency ct scan, MRI, ultrasound and a pet scan showed a lesion in my liver and one peri nodule. My question is has anyone cleared peri mets with chemo as I've been referred to Basingstoke for hipec, but am likely to be refused as its not widespread enough. Thank you in advance. :x:

Leaguefan

@michelle19
Sorry this has happened but I find the stories in this section heartwarming and so positive.
It does seem strange though that being referred you will be be rejected because you are “not ill enough”?
I will however admit ignorance regarding this area and that the treatment may be different to what would seem logical.
Whatever happens, I wish you a very successful outcome.

Regards

Keith AKA Leaguefan.

Liz Blakelands

@michelle19
Hi and welcome to the forum which I hope you find friendly and helpful. I'm really sorry that you have had a re-occurance.

I don't have experience of peri mets and chemo but I'm sure some-one will be along who has. Re the referral to Basingstoke, I'm sure there must be a reasonable chance that they will take you .

Just wanted to welcome you to the forum. Please keep in touch and let us know how you get on.

All the best, Liz :x::x:

Lirio345

Good morning @michelle19, a very warm welcome to the forum from me as well, although I am so sorry to hear what has been going on with the recurrence.

I have read that chemo can be very effective in obliterating peritoneal (and liver) mets in some folk and also sometimes radiotherapy is used to great effect. I wonder if you are on FB? There is an excellent, well informed group that comes under the BCUK umbrella, I strongly recommend you join! It is called ‘Living with Stage 4 Bowel Cancer - UK’.

www.facebook.com/groups/713535052312333

I think there is a good chance that Basingstoke will turn you down (which can be seen as a positive?) but you will be on their ‘radar’ if you needed them in the future. HIPEC is a huge surgery for one peritoneal met and I imagine they will advise that other much less invasive but successful treatments are advisable at this stage.

Stay in touch and take very good care, Kim :x::x::x:

Jane39

Another warm welcome from me @michelle19
I can't add anything but just wanted to say hi but also sorry that this has happened.
Take care,
Jane :x:

rosa123

Hi @michelle19 really sorry to hear about this spread. But good news that your team are on it. Hopefully they can blast it with chemo while it's small. Peri mets used to be a pretty doom and gloom situation but I think things have changed a lot over the years. Are you on the Living with Stage 4 bowel cancer Facebook group? There are people on there who have got to NED after having peri mets :x::x:

michelle19
Quote from @Leaguefan:
@michelle19
Sorry this has happened but I find the stories in this section heartwarming and so positive.
It does seem strange though that being referred you will be be rejected because you are “not ill enough”?
I will however admit ignorance regarding this area and that the treatment may be different to what would seem logical.
Whatever happens, I wish you a very successful outcome.

Regards

Keith AKA Leaguefan.

Thank you so much for your reply. Hopefully I'll have a plan soon. :x:

michelle19
Quote from @rosa123:
Hi @michelle19 really sorry to hear about this spread. But good news that your team are on it. Hopefully they can blast it with chemo while it's small. Peri mets used to be a pretty doom and gloom situation but I think things have changed a lot over the years. Are you on the Living with Stage 4 bowel cancer Facebook group? There are people on there who have got to NED after having peri mets

Hi, thank you for your reply

Quote from @rosa123:
Hi @michelle19 really sorry to hear about this spread. But good news that your team are on it. Hopefully they can blast it with chemo while it's small. Peri mets used to be a pretty doom and gloom situation but I think things have changed a lot over the years. Are you on the Living with Stage 4 bowel cancer Facebook group? There are people on there who have got to NED after having peri mets

Hi, thank you for your reply. Yes I'm on the fb group, which I've found very useful. I made the mistake of asking Dr. Google and it was doom and gloom. Fingers crossed chemo will get to work on it and they may decide to do surgery. :x::x:

michelle19
Quote from @Lirio345:
Good morning @michelle19, a very warm welcome to the forum from me as well, although I am so sorry to hear what has been going on with the recurrence.

I have read that chemo can be very effective in obliterating peritoneal (and liver) mets in some folk and also sometimes radiotherapy is used to great effect. I wonder if you are on FB? There is an excellent, well informed group that comes under the BCUK umbrella, I strongly recommend you join! It is called ‘Living with Stage 4 Bowel Cancer - UK’.

www.facebook.com/groups/713535052312333

I think there is a good chance that Basingstoke will turn you down (which can be seen as a positive?) but you will be on their ‘radar’ if you needed them in the future. HIPEC is a huge surgery for one peritoneal met and I imagine they will advise that other much less invasive but successful treatments are advisable at this stage.

Stay in touch and take very good care, Kim

Hi Kim, thank you for your reply. Yes the consultant said that Basingstoke normally deal with extensive spread and they have strict criteria, so I'm not expecting to be accepted. He did say I was treatable though, so that's a good thing. It's the waiting for a plan that's the hardest bit. I am on the fb page, thanks and it is very helpful. :x::x::x:

michelle19
Quote from @Jane39:
Another warm welcome from me @michelle19
I can't add anything but just wanted to say hi but also sorry that this has happened.
Take care,
Jane

Thank you so much. :x::x::x:

michelle19
Quote from @Jane39:
Another warm welcome from me @michelle19
I can't add anything but just wanted to say hi but also sorry that this has happened.
Take care,
Jane

Thanks so much Jane. :x::x::x:

michelle19
Quote from @Liz Blakelands:
@michelle19
Hi and welcome to the forum which I hope you find friendly and helpful. I'm really sorry that you have had a re-occurance.

I don't have experience of peri mets and chemo but I'm sure some-one will be along who has. Re the referral to Basingstoke, I'm sure there must be a reasonable chance that they will take you .

Just wanted to welcome you to the forum. Please keep in touch and let us know how you get on.

All the best, Liz

Thank you Liz for the warm welcome. It's much appreciated :x::x::x:

mountainwoman

Hi @michelle19,
I have had HIPEC at Basingstoke twice. The second time was for a very small recurrance (about 1.5cm) which they described as a "lump". They decided to do the second surgery to remove the lump and check there was nothing else cancerous growing. So sometimes they do operate even if the area is small. It is good you are on their radar. Sometimes they suggest chemotherapy before surgery but they are experts and will advise the best course of action.
Take care :x: