Effing cancer is an effing effer, frankly

[GT3Manthey]

zbc said:

Heard last night that an old friend had just come out of surgery following what is probably a Glioblastoma. She seemed positive but after Googling it I'm not. Waiting to hear the confirmation but it seems almost certain. She fainted on holiday a few weeks ago and was kept in hospital for some tests. When she got home she had more tests and now an operation. Early 50s and a single mother with a young child. Cancer can eff off

So sorry to hear this

[Adrian E]

Sorry to hear this - same type as Tom Parker of The Wanted, who has been raising awareness whilst promoting their farewell tour. It seems the palliative care he's receiving is because it was already Stage 4. A lot will depend on how advanced it is, but essentially the outlook isn't great in terms of life expectancy as it's quick to spread (and to get there will involve debilitating treatment). If it's been caught really early or turns out to be a different type then the outlook is better. Mate from school had surgery some years ago for a brain tumour, plus radio and chemotherapy, and is about to start treatment again as it's started to grow again. He's had a good few years with his young family in between.

Edited by Adrian E on Friday 24th September 09:04

[zbc]

Adrian E said:

Sorry to hear this - same type as Tom Parker of The Wanted, who has been raising awareness whilst promoting their farewell tour. It seems the palliative care he's receiving is because it was already Stage 4. A lot will depend on how advanced it is, but essentially the outlook isn't great in terms of life expectancy as it's quick to spread (and to get there will involve debilitating treatment). If it's been caught really early or turns out to be a different type then the outlook is better. Mate from school had surgery some years ago for a brain tumour, plus radio and chemotherapy, and is about to start treatment again as it's started to grow again. He's had a good few years with his young family in between.

Edited by Adrian E on Friday 24th September 09:04

Thanks Adrian (and GT3), I hadn't made the connection to Tom Parker which is weird as my daughter has just bought tickets for the tour. Someone in our village also had a brain tumour at a young age and made a few years but as you say if the diagnosis is correct the outlook isn't great. We're just trying to think of practical ways we can help at the moment but she'd a couple of hours away from us so it isn't obvious.

[loafer123]

It does depend on the nature of the tumour.

This is a fascinating listen;

https://www.bbc.co.uk/programmes/b09ws5pd

And the follow up;

https://www.bbc.co.uk/programmes/m0008k32

[gazza285]

I have been informed over the weekend that my sister has breast cancer, and it has spread to several lymph nodes. She is now waiting for test results to determine the extent of the spread. I am at a loss of what to do next.

[GT3Manthey]

gazza285 said:

I have been informed over the weekend that my sister has breast cancer, and it has spread to several lymph nodes. She is now waiting for test results to determine the extent of the spread. I am at a loss of what to do next.

So sorry to hear your news.

Lots of here will no doubt come along to offer advice etc .

All I can say right now is my thoughts are with you and your sister

[loafer123]

gazza285 said:

I have been informed over the weekend that my sister has breast cancer, and it has spread to several lymph nodes. She is now waiting for test results to determine the extent of the spread. I am at a loss of what to do next.

All you can do is support her, but still be her brother.

My sister is having an operation to remove a (hopefully) small brain tumour this week.

I said she only had it because she wants a new exciting scar and a new hat.

I think that normal banter is what she wanted, judging by her response.

[Adrian E]

gazza285 said:

I have been informed over the weekend that my sister has breast cancer, and it has spread to several lymph nodes. She is now waiting for test results to determine the extent of the spread. I am at a loss of what to do next.

Sorry to hear this :/

My advice would be to try and stay as calm as you can manage, but be prepared that the news could go either way and that what your sister is most likely to need is a brother she can rely on to do whatever it is that she needs - be that practical support, someone to scream at, a shoulder to cry on, someone to have a laugh and a joke with.....you'll know your sister best and the kind of person she is without cancer in her life.

Unfortunately when I was in the position of looking for that sort of support from my sister, she felt unable to offer it due to her mental health fragility. It meant I barely spoke to her over an 18 month period, as I couldn't deal with her blubbing and feeling sorry for herself, when it was me looking at surgery x3 and chemo x2! That has been difficult to deal with now I'm 'fixed'.

There is always hope that any spread is caught early enough that it is treatable/potentially curable. Having lymph nodes involved alone doesn't mean it has spread, but it's likely to have found its way to somewhere else in the body assuming the breast cancer has been there long enough to take root. If you hear 'stage 4' mentioned then it's management rather than cure, in the eyes of the consultants.

If you hear anything that sounds like doubt around the prognosis, make sure she has been offered a PET-CT scan. There aren't many centres nationally that can do it (I was lucky that the trust I was cared for by has a working relationship with the local university cancer research centre, which has the facilities to do PET-CT). I've found vanilla CT scans not very effective in my case - the last one I had suggested I had a lung tumour, but the PET-CT proved that it wasn't cancer, but did find the 2 tumours on my liver that came out 8 weeks ago! MRIs are used for individual organs to investigate in more depth.

I hope the news is positive

[Adrian E]

Some good news in my treatment/recovery - latest blood test results (2 months-ish after 2nd liver section) show the lowest CEA (a blood protein marker associated with bowel cancer) I've ever had since diagnosis 20 months ago. It has a long tail off, so the fact it's now down to virtually 'normal' levels is genuinely encouraging next blood test, along with the 'delight' of a colonoscopy and CT scan, to look forward to in December......

[N7GTX]

Congrats

[GT3Manthey]

Old work colleague of mine’s funeral today .

52 was diagnosed 3 years ago this month .
Despite a long battle and private treatment he passed 2 weeks back .

RIP

Edited by GT3Manthey on Wednesday 20th October 08:32

[Mojooo]

Colleague of mine went off work 3-4 weeks ago with back pain. Has been diagnosed with aggressive spine cancer and been given 3-12 weeks.

One of those things that is quite hard to to sink in, Especially the fact that there is not even a chance of treatment.

[GT3Manthey]

Mojooo said:

Colleague of mine went off work 3-4 weeks ago with back pain. Has been diagnosed with aggressive spine cancer and been given 3-12 weeks.

One of those things that is quite hard to to sink in, Especially the fact that there is not even a chance of treatment.

That’s terrible news . One of those things you can’t ever think will happen or legislate for . Sorry to hear the news .
If still working I’m assuming not an older person ?

Sorry to hear this .

[Mojooo]

I think she is somewhere between 48 and 53ish.

[GT3Manthey]

Mojooo said:

I think she is somewhere between 48 and 53ish.

Terrible news no bloody age .

[condor]

New to this thread, and will take the time to read it through from the beginning.

I've been diagnosed with throat cancer - large hypopharyngeal tumour with level2/3 lymph nodes. Out of the many tests, I had a CT scan over a month ago which showed no shadows on my lungs. That was good, meant I would get treatment. The surgeons are now wanting me to have a full body PET CT scan at Mt. Vernon, which is about 50 miles away, that will delay my possible treatment by approx 3 weeks or so. Will then be Christmas, so perhaps I won't get treatment after all.
Is there a good argument for me to say I want treatment now, not wait for result of a PET CT scan? I am to see the surgeon and support team tomorrow to discuss it. Meanwhile in the post comes an appointment letter for similar discussion booked for 14/12. so I sort of think it's a done deal on their behalf.

Hoping someone has an answer for me. Thank-you for reading.

[Adrian E]

condor said:

New to this thread, and will take the time to read it through from the beginning.

I've been diagnosed with throat cancer - large hypopharyngeal tumour with level2/3 lymph nodes. Out of the many tests, I had a CT scan over a month ago which showed no shadows on my lungs. That was good, meant I would get treatment. The surgeons are now wanting me to have a full body PET CT scan at Mt. Vernon, which is about 50 miles away, that will delay my possible treatment by approx 3 weeks or so. Will then be Christmas, so perhaps I won't get treatment after all.
Is there a good argument for me to say I want treatment now, not wait for result of a PET CT scan? I am to see the surgeon and support team tomorrow to discuss it. Meanwhile in the post comes an appointment letter for similar discussion booked for 14/12. so I sort of think it's a done deal on their behalf.

Hoping someone has an answer for me. Thank-you for reading.

Hi Condor

Sorry to hear your news - hopefully tomorrow will give you some reassurance regarding next steps.

In terms of a PET scan, it is well worth having. There aren't that many centres in the UK (I was 'lucky' that my local trust is in a university city with a cancer research centre with the ability to do PET scans) so travelling isn't uncommon - I've had 2 of the buggers. It will give the MDT folk far more detail on your prognosis, as any other activity outside your throat tumour will show up bright and clear on a PET scan, due to the radioactive sugars they inject into your bloodstream. Be aware that you usually have to fast beforehand and stay away from people for a few hours after (they'll send details on this) so may need to consider how you get there etc.

Best outcome is there's no spread and they move forward with surgical options ASAP.

I had metastases in my liver, but they weren't identified until after my bowel operation, which showed lymph nodes involved in the histology. PET scan confirmed they were metabolically active in my liver, so that's when the treatment ramped up a couple of notches.

Hope you get some positive news tomorrow

[N7GTX]

I think the PET scan is worth having done. It will be the most accurate way of seeing the tumour and will help plan your treatment. If it was a very aggressive cancer I'm sure the team would be getting you in asap.

When I was starting my treatment there was a delay of around 3 months and I got frustrated thinking the cancer was growing fast. It wasn't of course.

A good friend was having treatment for throat cancer at the same time so we did our courses at the same time. He has had his ups and downs with it but he's still going strong some 6 years on. And the silly bugger still smokes his roll ups....

[condor]

Thanks for your replies. They've made me feel a bit better
I thought the extra PET CT scan was a delaying tactic so they wouldn't need to treat me after all, perhaps that's not so. Since I started being looked at in October, each time they do something like massage neck to feel for tumour or take biopsies - the situation gets a lot worse. My throat is mostly completely closed, I'm taking steroids now that gives me a small time to take some water. I've lost 20kgs in weight in the last couple of months too.
There doesn't seem to be any urgency about the team, no blood tests, and the neck lump had grown a cm in one week the last time I was see. No idea how much bigger it is now - but is easy to see.

[GT3Manthey]

condor said:

Thanks for your replies. They've made me feel a bit better
I thought the extra PET CT scan was a delaying tactic so they wouldn't need to treat me after all, perhaps that's not so. Since I started being looked at in October, each time they do something like massage neck to feel for tumour or take biopsies - the situation gets a lot worse. My throat is mostly completely closed, I'm taking steroids now that gives me a small time to take some water. I've lost 20kgs in weight in the last couple of months too.
There doesn't seem to be any urgency about the team, no blood tests, and the neck lump had grown a cm in one week the last time I was see. No idea how much bigger it is now - but is easy to see.

Good luck condor & keep us posted .

All the best