Stage 3 cancer but don't have a clue

[Pebbles16]

Was diagnosed 10 months ago with stage 3 major organ cancer. Given a 3-6 month window. My decision was not to have treatment until I felt unwell. I still don't feel unwell. Still actually haven't told anyone (apart from DH) because I don't see the need yet. Still at stage 3. Being pushed to have chemo. I know this will make me feel unwell so I don't want to do it. Oncologist made me feel like I was being very selfish choosing my current comfort over potential cure (even though this this is the person that has consistently told me I would die soon, yes he has a marvellous beside manner!)
Don't know what I asking for. Support? Similar stories? Just a tad of hand holding?

I have recently been diagnosed with an aggressive cancer but don't know the stage yet as tests are being done to see if it's spread. The type I have responds well to chemo so I have started treatment and not had too many bad side effects so far. I didn't want to tell people as I was in shock and upset so dh contacted close family and friends for me - I can understand how you must be feeling I would definitely be asking more questions or seeking a second opinion so you are fully informed of all options

I totally understand not telling anyone. I'd be exactly the same.

So.. are you working thru a bucket list anyway? Why not? Bus might hit you tomorrow, after all.

My cancer was at stage 3 when dx but they thought it had been growing for about 2 years. It had started to spread when they finally dx it.

Chemo was shit, there is no denying it, but mine was 2 weekly and I had a pump to carry around. I managed to continue to work throughout, and in a break between cycles we took DD to Disneyland Paris.

5 years on I've just been discharged from oncology altogether.

I agree with pps that you need to talk it through with a different professional to find out what your prognosis is either way. But I don't blame you not wanting to tell anyone. (I didn't want to, so my bloody mother told everyone)

OP, would you consider taking part in a clinical trial, if there are any nearby?

A friend-of-a-friend was diagnosed with a very aggressive, stage 4 cancer.

He chose to take part in a clinical trial for a new treatment, based on immuno-therapy.

It worked. He is now cancer-free.

Might be worth a thought.

You can't really compare different stage 3 cancers. The treatments and prognoses are entirely different depending on the primary cancer. (Stage IV cancers are not always incurable either - testicular cancer and certain lymphomas can be cured even at stage IV).

If there is a reasonable chance that the treatment will lead to cure and you are otherwise healthy, I can understand why your oncologist would be encouraging you to have treatment.

Having said this, they should respect your decision whilst ensuring that you are fully informed.

Definitely worth going for a second opinion .

If you have children .... Fight! Take every drug available ..

I need my mum, I ache for my mum, my life has changed,

I just want my mum!

All I know about cancer and doctors is it can kill and they can be wrong. My nana had cancer twice. The second time she was given 3-12 months to live. She died in 2 1/2 and if iirc wasn't offered any treatment. She'd had enough.

You sound a lot younger and full of desire to live but scared. How will you feel if you do nothing and at your next check up its terminal? Will you still feel you've chosen correctly? I'm really sorry if I'm upsetting you. I just want you to think something different maybe.

Ok, information is power. If you look up your tumour site via your local NHS then you'll see the local protocol for treatment in your area. Once you've got that, you can research the typical response rates. Also have a look to see if there are any clinical trials in your type of cancer too.

Depending on many factors, including how well you are right now, will give a picture of how you are likely to fare.

But don't make the decision to not make a decision. Make an informed choice.

FWIW I worked in a tumour site with good cure rates if caught early but quite poor if there were secondaries. The new biological therapies meant that patients who responded, had their tumours shrunk so much they could be surgically removed and they are now cancer free. The same patients on the older therapies, or who didn't respond, absolutely wouldn't have made it. Stage III doesn't have to be a death sentence, and "chemo" covers a huge range of drugs, some with almost none of the ones you'd typically associate with cancer.

Very best of luck with your choices. Don't die of the fear of making one.

My mother died of cancer 20 yrs ago, at 67. I have no idea of whether, at diagnosis, it could have been cured because she decided to have no treatment and tell no-one. She retreated into herself and her home, eventually dying after some months, in great pain and leaving us all with forever questions. We only know she had cancer as the PM told us so. It was totally her decision, and I immediately understood why she had decided on no treatment - but I wish we had known just so we could have said some stuff that needed saying and ensured she was pain free as far as possible. We don't believe she was. What is most upsetting is the thought that she didn't trust us to respect her decision.
I hope whatever your decision you are surrounded by people you can trust to respect it.

Back at the time, I thought well maybe if I didn't have young children I too would make the same decision, to go for a shorter time rather than extending it in a hospital bed. Twenty years on, and the young children are grown, and I know I would grab any chance I could, I'd grab it with both hands and swing a leg up over the side for extra grip.

What a horrible situation for you Pebbles

Many Stage 3 cancers are not curable and clearly your oncologist has told you that yours is one of them. But you have already lived longer than expected and are feeling well - what to do?

My suggestion - as a palliative care doctor but not knowing anything about you or your cancer or your oncologist - is that not wanting to have any treatment until you feel ill is quite a common choice. Your oncologist doesn't seem to have given you good reasons why this is a bad idea beyond 'chemo is good' - good reasons might be for example being well enough to have the treatment now or avoiding complications. However these can't be guaranteed. You might just make yourself feel shit now as well as feeling shit later.

Perhaps you and this oncologist just don't click - you've lost a bit of faith since the prognosis (which are very tricky things and usually wrong) was so wrong and so find it hard to trust their advice. And of course doctors do tend to think that having treatment is good - it's what they are trained in. I find doctors often really struggle with patients who don't want to do what they suggest.

So my suggestion would be that you ask for a second opinion. This is a totally normal thing to do in oncology and no-one will be in the least surprised. You can ask all your questions about prognosis and chemo or not, what is the point of chemo, how harsh will it be etc etc to someone else and see what you think. And you might find you click better with the new person too.

So much helpful advice ,I'm sorry that my contribution was so bald .

pot you say If you look up your tumour site via your local NHS I wonder if you could explain what you mean as I'd like to understand .

*OP, would you consider taking part in a clinical trial, if there are any nearby?

A friend-of-a-friend was diagnosed with a very aggressive, stage 4 cancer.

He chose to take part in a clinical trial for a new treatment, based on immuno-therapy.

It worked. He is now cancer-free.

Might be worth a thought.*

Just to say that immuno-oncology trials are only just starting for a very tiny number of cancers, and usually you can only enrol if all other treatment options have been exhausted. But maybe worth finding out and see it it applies.
(I make immuno-oncology therapies; there have been some real successes! But it doesn't work for everyone).

Okay For the third time (bloody app is not friendly). Thank you all for your responses and sorry for radio silence. To be honest I almost asked MN to take it down because, apart from DH, I told no one and then was having "opinions". Have been battling with app to give you proper responses but it's impossible so I'll do my best.
Yes total I am your mum. I am sorry and I know I'm rubbish. I am terrified of telling my parents. How can you do this? Not a clue.
jinkx I would love to but I really can't. Sorry, hope you understand.
lijkk yes! People continue to be FB commenty about how exciting our life is! It's not really. I should get off FB
These are particular mentions but thank you every one for your comments. I actually really need to speak to someone IRL (I am the ridiculous person who said "no, I don't need any help. I'll be fine". Yep! What do I know?

Pebbles, sorry you're going through this, and I hope you find someone IRL to speak to. Meanwhile there are lots of hands to hold on MN, if it helps. Not that we always know the right thing to say, but we mean well.

So sorry OP

If I may...the Dr who posted shared a very valid point regarding treatment being offered now whilst you're feeling well. Unfortunately for my Mother who sadly passed away a few months ago, she wasn't strong enough to have any sort of treatments and thus was taken over by the Cancer.
It was heartbreaking to watch, especially at such a fast pace. None of us fully understood what was happening or how quickly it would go so there were conversations that never happened which will forever haunt me and my siblings. We were all so afraid to admit what we knew was happening and I will regret that until the day I die.

I wish you all the luck in the world.

All I wish to say is good luck with whatever you decide. Your body your decision . All my prayers are with you.

I was just going down this road, this time last year. I took the radio and the chemo and it appears to have worked.

I am not going to tell you what to do, but like you I dreaded everyone knowing. I only told my siblings and my mother, told them that they could tell who they felt they needed to tell but on the clear understanding that no one was to ring me. One aunt did and I hung up on her.

I live in a small town and only told a small handful of people, to those that I did tell, I told them they were one of a very chosen few and that I had only told a handful of people and that if I heard it back I would be able to work out where it came from.

I managed to keep it quiet for six months.

What I am trying to say to you is, once the genie is out of the bottle you still have control if you ensure that there are no leaks and basically low level threaten people. (the end justifies the means)

Good luck with whatever you choose to do.

I actually really need to speak to someone IRL

you do my dear, I was a bit worried that the many opinions you will get on here would mess with your head a bit, and I really hopes they helped

sending all love and strength, and you will always get a good ear on here when you are a bit clearer

Having watched the FB updates of an old friend who went through chemo and didn't really benefit in terms of life expectancy, I can understand why you don't want it. But what worries me is that you don't seem to have the information you need, and that your oncologist doesn't really seem to be communicating with you. As others have said, maybe it'd be worth trying another doctor or speaking to a specialist nurse.