Stage 4

[Sh-x]

I was diagnosed stage 4, 4 weeks ago. Not suitable for primary surgery, referred for chemotherapy but still waiting for an appointment to see a consultant. I just feel that by the time I begin treatment i will of lost all my confidence

[lorraine71-Australia]

SH-x, This is only the beginning of your journey don't be afraid, I was also not suitable for surgery at fist then had chemo then surgery, It has been hard at times over the last 3 years but we keep fighting on. There are ladies on this site who have reached NED and are living happy and fruitful life's we are all so different and our journey is ours, so I hope with all my heart yours will have a happy ending ...Best Wishes Lorrainexx

[Sh-x in reply to lorraine71-Australia]

Thank you so much for your encouragement. I just seem to of fallen apart this last week as finding the waiting difficult. I am going to give myself a good shake and get my fighting spirit back. Hopefully get some treatment soon.

I feel I need to hear stories like yours as I made the mistake of googling too much.

Cheers Shona

[lorraine71-Australia in reply to Sh-x]

SH-x DO not google just come on to this site and ask for advice and encouragement from the ladies , but remember to then always talk to your oncologist about any advice you get. Cheers Lorraine xx

[Lyndy]

Hi Sh-x

You must be reeling...I certainly remember that period of time after diagnosis and before treatment started as just the worst! You don't need to be brave...I think of it more as 'undergoing treatment ' wasn't my choice not what I wanted but necessary.

My other tip would be ask for help...tell the oncology nurse if you are scared or unsure...ask someone to accompany you...ask the doctors to explain stuff and ask for cups of tea at regular intervals! Whatever you need to get through.

In my case it was not half as bad as I imagined. Take care xxx

[Biscuitqueen]

The waiting was the worst part but I haven't even been on this forum for a long time and already you hear so many accounts of women not being suitable for surgery. My Mum was one of them! Chemo comes along and reduces the disease enough for it to be operated on. Stay strong and don't lose hope x

[LesleyGreengran]

4 weeks? That's far too long. Can you make some phone calls and hurry things along? Can your GP do anything about making them hurry up. There should be a patient advisory service. It used to be called PALS but should be on your local NHS website. Maybe you could phone them, now.

[January-2016-UK]

I agree with Lesley, four weeks is far too long to wait. Please make some phone calls, starting perhaps whoever told you were unsuitable for primary surgery. You may have the PA details on your letter and ask where you were referred to and their contact details. Then phone them. It's not unknown to "slip through the net" so to speak. Please don't assume that someone is handling it. It seems odd I know when it's such an important matter, but mistakes do happen. It may not be even the hospital, they may have written to you already but the letter has been lost in the post.

As regarding not being suitable for primary surgery, nor was I as the tumour was considered too large. But I'm pleased to tell you that the chemo shrank the tumour sufficiently, I had the surgery, and then chemo again afterwards.

Waiting is difficult, once you know the plan you will feel more positive.

All the best!

[Sh-x]

Thankyou all

After getting copy of notes from my Dr of MDT meeting where my case was discussed at beginning of March it transpires that the Prof that I was referred to for chemotherapy was not copied into this. After calling his secretary this morning she agreed this was the case although strangely she did have information on the meeting. She was not very helpful and only said she would bring the matter to the Professors attention.

I was pissed off before but REALLY pissed off now. It would appear even my GP has not followed up my concerns over last 2 weeks with regard delay.

As if things weren't bad enough.😪.

[January-2016-UK in reply to Sh-x]

His secretary was probably able to look you up on her computer which is how I suspect she could find the information about the MDT meeting. Ring her back on Monday and ask her when you can expect to hear about your appointment, so you can keep tabs on things. Tell her that the last thing you want is to drop of the radar again.

It's added stress that you could well do without but it's so important. If you've not heard by the time she indicates then chase again. Personally, I'd concentrate on getting the appointment first rather than spend energy on the complaints procedures, although you may well want to do that later.

[chrissapam]

I thought that too but eventually it worked out....do think its important that you hassle for your onc. appointment though...contact the hospital complaint service if necessary...4 weeks in your situation is too long. An alternative is to go to a/e and demand to see some once you are actually doing something you will feel better...if still ill. Your GP should be helping create a fuss too....or, if you really brave your MP. Do keep posting.....love Chris

[Annr5h]

Hi Shona, they always tend to do chemo first then do the op half way through chemo. I believe they get better results this way, that's what my oncologist told me. I too was stage 4 and have NED now, so keep your chin up and you'll be fine xxx

[thesilent1]

Hi Shona, welcome to our forum, as you've already experienced, we are all very friendly and willing to reassure and advise. I too suggest you follow up that call to the secretary, you need tyo bve seen. Good luck. Ann. Xx

[Hidden]

Hi there I am sorry you have got a diagnosis but welcome to the site. I would ring the hospital Oncology just in case they have forgotten you, So that is one thing on your to do list for Monday. You wont lose confidence just patience, I wouldnt have as much patience as you and I would have been on to the hospital long ago.

[caf132]

Hang in there Sh-x. We all react differently to chemo. There is no reason that you cannot beat this beast!! You may be the one who responds perfectly!! Keep up the positive attitude as this will go a long way in your outcome. If you think you can do this your immune system is more likely to respond favorably. you are one with your body.

Keep us posted!!

Xx Carol