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A massive decision! What would you do?

17 REPLIES 17
AliOG
Member

Re: A massive decision! What would you do?

Hi Flyingarcher,

 

The chemo is 6 rounds, one every three weeks so 18 weeks in total. Then there will be a month of recovery before I start rads. Work are going to forget what I look like and I might have forgotten how to work! I'm actually quite calm now that I've made the decision but the uncertainty has been very difficult to handle and I've swung wildly from one way to the other. Today I signed the consent forms, made an appointment with my hair dresser, told work, organised some support for my daughter and had two large glasses of wine. I feel better already! Good luck with the wait. Try and keep busy and don't dwell too much. Until they come back with the stats you won't know how you're going to feel so I wouldn't waste too much energy on it if you can help it - easier said than done, I know! Xx

Mishy18
Member

Re: A massive decision! What would you do?

Yes Flying archer those ads on television atm are everywhere scaring the hell out of my kids and family as I haven't started mine yet!! I have to say I know they have to campaign but come on what about us lot enjoying our soaps then ad time 🙂 I wonder if they thought they could be putting the fear of God into some people at home!!!! I haven't a choice like Annie it's definitely chemo as I can't have hormone treatment and anything to keep me here with my family I will do if it's offered Im 46 xxx
ann-m
Community Champion

Re: A massive decision! What would you do?

Sorry to hear you've got this uncertainty at the mo, flyingarcher.  

I don't think it's so much a plethora of cancer ads, rather that we notice it more when diagnosed. When I was first diagnosed, I felt the same way!

ann x

Flyingarcher
Member

Re: A massive decision! What would you do?

Thanks Ali.  I have a funny feeling that I will land in this grey area.  I got that impression too about the oncologists.  The new female consultant, admitedly in a rush and having hissed convos in corridor with registrar without having met me, was deffo 'no need to send for oncotype'.  Established male consultant, who came in to advise, was 'should have sent it before, I'm doing it now'.   I think I need to think about various options and talk it through with husband before we go.  I've got a bit of time because they can't do anything until next op has healed.  How long will your chemo take?  

 

Has anyone noticed the plethora of cancer ads on the tv at the moment.?  Seem to be on every intermission and I know this is purely me being selfish, it just makes it all seem more scary.  

AliOG
Member

Re: A massive decision! What would you do?

I've just come back from oncotype discusssion number 2 with oncologist number 2. I had a score of 20 so it's down to me to decide. Been driving myself mad with it but think I'm going ahead with chemo. Flyingarcher, when you do get your results back do be prepared for a range of opinions to hit you from all sides - and I'm talking just the medical profession! Female onc said do it without question. Male onc clearly thought the percentage improvement of having chemo wasn't worth it but didn't want to say so in so many words. The chemo nurses are brilliant though and seem to have their heads screwed on. Good luck with it all and keep us posted on surfer dude's progress xx

Sue C
Community Champion

Re: A massive decision! What would you do?

Hi flying archer

Yes was 45mm ( twice as big as they thought), good margins and clear lymph nodes. But grade 3 so chemo recommended x

ladybowler
Community Champion

Re: A massive decision! What would you do?

Flyingarcher

 

Oh I love your analogy to a teenage surfer dude it really made me smile 🙂 🙂

Flyingarcher
Member

Re: A massive decision! What would you do?

Thank you Annie and Sue.  It's good to be reassured and if the result comes back as chemo then that is what it shall be and it will be doable, not least because you know what is happening.   Feel like we've made progress though with the oncotype test being sent off.  If I'd never heard of it then I'd be all set for radiotherapy, just like they'd first suggested but they can't say 'we've decided to send this off' me come to terms with what that entails, read up about it, then 'we might not have sent it off because of protocol but it will be sent off' to 'oh don't know whether it needs sending off' in the space of three weeks and expect acceptance.  

 

i'd rather know that I've done everthing I need to to protect myself and my family.  Am very reassured, however, that Mr C is an easy going grade 2 kinda fellow.  Sort of a mildly annoying teenage surfer dude whose gatecrashed a party.  Interestingly, the surgeon emphasised how much bigger my tumour was - three times bigger than first thought, which made me wonder if then it would be instant chemo but the registrar said that size doesn't really matter (take that, surfer dude) and that you can have 5 cm tumours that don't need chemo.  It does all seem to be down to cell grading and lymph nodes.

Anniej
Community Champion

Re: A massive decision! What would you do?

FlyingArcher, so sorry you are in turmoil here. Can I assure you that the chemo hasn't been hell for me, and I'm 70! Not pleasant, and I wouldn't volunteer , but a 1000% better than I thought. The procedure is painless , and you are given every pill under the sun to manage side effects. If they haven't given it, you can phone and ask for it! Sickness, headaches, heartburn, dry skin, dry eyes??? I've had the first two , and all manageable. I'm on FEC-T which is a harsh regime. Trust your medical team. They'll get you through it. Good luck with your decision making, it is all very personal. 🍀 X

Sue C
Community Champion

Re: A massive decision! What would you do?

Hi flying archer

Its all the uncertainty at the start that causes the most anxiety.

I didn't need to think twice about chemo..... If it helped my chances in any way, then I just got on with it. I am 50.

But I just wanted to say that you describe chemo as being in hell. But I wanted to assure you that its not like that at all. Its very doable. I suffered with fatigue at times, but also felt very well at other times too. 

You will feel much better when your results are all in and you know what your treatment plan will be.

Best wishes xx

Flyingarcher
Member

Re: A massive decision! What would you do?

Just got back from my appointment.  Saw the registrar who seemed rather uncertain.  She did conform that cancer was grade 2 but the news that I'd been phoned and told the test had been sent for oncotype seemed to flumox her.  I said I had been told I met the markers.  She then went to wait for the consultant who was with his patients for an hour!   He eventually came to talk to me and I said if it came back as needing chemo, then that is what I would do.  I don't want chemo but feel I would rather have several months of hell and know it has been nuked than wonder 'what if'.   She showed me the results of the predict test but the ten year prediction was 78 women without chemo survive.  Ithat would only take me to 62.  If I was older now then I'd probavlly just settle for rads and hormones but I'm 52 and I do not want to be going through this again.   The rent rollercoaster has taught me that living with this anxiety and uncertainty is way worse than anything else.  

 

They've sent the test off and hopefully I will get the results in two weeks.

 This is hard.  Hugs to everyone.  I've stopped work today so I can rest and not be bruised for margin stuff on Thursday.

 

Meri
Member

Re: A massive decision! What would you do?

Hi there is an online tool designed by NHS to help us understand benefits of treatments.

 

NHS PREDICT

 

You just enter info on tumour size, nodes, hormone status etc

 

And then it gives you five year and ten year outcome on how much hormone therapy and chemo helps.

 

I found it really helped me understand difference these treatments can make.

 

🙂

 

Anniej
Community Champion

Re: A massive decision! What would you do?

My treatment was outlined to me, chemo, rads, Letrozole . My lymph nodes were involved so big belts and braces job. Never faltered for one minute in taking it all, and I am 70! Want to see those grandkids grow up.

 Did you think of asking the Onco what he would recommend if you were his daughter / sister / mother / beloved wife / partner? Whatever your decision you need to be able to live with it, and I wish you good luck. X

queenbee
Member

Re: A massive decision! What would you do?

Tough decision. Me personally would do anything to give myself a better chance. But you need to do what's best for you and your lifestyle. X
Nikki49
Member

Re: A massive decision! What would you do?

I've had chemo & out the other side. Not gonna lie chemo is tough & I reckon took me a year to fully recover from BUT I'd do it all again if it was told it improved my chances even if only by 2%
Best of luck whichever way you choose x
SandraSussex
Member

Re: A massive decision! What would you do?

Ok Ali!.....I'm out in the morning but will message you tomorrow afternoon!

Sandra xx
AliOG
Member

Re: A massive decision! What would you do?

Heh Sandra,

 

just logging on on now after a very emotional day. I'm in the same position as you. They've given me 8% improvement over 10 years if I have chemo plus Tamoxifen. Such a difficult decision and never wanted to be here. PM me if you want to talk tomorrow morning. Sounds like we're in parallel. Much love xx

 

SandraSussex
Member

A massive decision! What would you do?

Hi all!
I have just had a meeting with my oncologist! The choice of chemo or not! I will be having rads and letrozole! The percentage I was given over 10 years is 4% without chemo!

What would you do?
Sandra x