PET scan results: I have been told the... - The Roy Castle Lu...

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PET scan results

Antrobus2021 profile image

I have been told the multi-discipline team are reviewing the results this week and that I will receive a phone call to discuss next stage. I had expected to be called in to discuss a treatment plan , so worried that outcome will not be positive. Has anyone else had a similar experience or is this usual?

13 Replies

Hi Antrobus. My wife has a 4 cm tumour in her top lobe with a lymph node affected as well.

She has been for a PET scan two weeks ago and last week she had a biopsy.

Tomorrow she has a MRI scan.

To date she has no idea of what she has or what treatment she will undergo.

So it seems that things progress differently depending on the hospital.

I'll be following this post to hear what the others have to say. Stay safe.

Antrobus2021 profile image
Antrobus2021 in reply to Palpman

Hi Palpman

I hope all goes well with your wife’s MRI scan and that she gets answers and a positive outcome.

It is the not knowing I think is the worseand I agree that treatment options vary with different hospital trusts.

My best wishes go to you both.

Hi Antrobus - its such a worry isn't it. Yes, we've had phone calls sometimes rather than scheduled meetings so I don't think this is too unusual, especially in these covid times. It does mean there will be no delays trying to organise the doctor's availability. It might be worth seeing if you can get a time slot for the call (try your nurse or the dr's admin team) so you know when it will be and can make sure you're in a quiet place (our most memorable phone call - when the consultant rang to tell us that the biopsy was cancer - came out of the blue and our kids were around).

Please don't think that a phone call means worse news. There are treatment options and they will be working out what is best for you, then a phone call means you'll be able to discuss it as soon as possible.

Please let us know how you get on. Thinking of you this week ❤️

Hi Antrobus2021

It is understandable your worry and anxiety, waiting and not knowing what is happening next.

For any diagnosis, usually they do a PET scan and follow this with a biopsy. If you have not had a biopsy then this may be something they will arrange with you and can be done over the telephone.

Most hospitals are trying to get back to normal and have a face to face meeting.

Biopsy results can take up to 3 weeks, initially they can determine if it is cancer and what type of cancer. The extended test, which takes a bit longer, hence up to 3 weeks, is where they test for what cell mutation or proteins are present which may provide new treatment options of immunotherapy or targeted therapies.

This link is to one of our information books, and although it is titled 'managing your lung cancer diagnosis', even if you do not know your diagnosis, it provides useful information on the process of things.

roycastle.org/app/uploads/2...

From biopsy results, treatment options usually start within 2 weeks.

This link takes you to our booklets on the different treatment options:

roycastle.org/help-and-supp...

If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

You ok Rob, not heard from you, I always feel better when I know you’re ok. Sending love Pam xxxx

Antrobus2021 profile image
Antrobus2021 in reply to Loimie

Hi Pam

I am ok thanks, I thought I had replied to you but will check my sent items and resend. I hope you are feeling less anxious, you are always the first to provide uplifting responses to others on this site, so it is a worry when you are down as that is not like you at all.

I have my first meeting tomorrow with my Consultant Oncologist and not sure what to expect. The Respiratory consultant called me with the result of my PET scan confirming stage 4cancer in my left lung, cancer in my right hip (which must have been the cause of the fracture) and cancer in my chest which is new. He also mentioned treatment would be chemo.

I live in Lincolnshire and it appears that immunotherapy is not an option, although I will ask the question, also about possible trials. like you i am a fighter but I want and need to know I have the full facts and treatment options to help me.

Please let me know how you get on with Dr Summer. Always thinking of you.

Rob

Loimie profile image
Loimie in reply to Antrobus2021

Hi Rob, thanks for getting back to me, I'm sorry if I mither you but get worried when I haven't heard from you. Sometimes the messages on here don't send unless it's me doing something wrong. Glad your appointment is tomorrow, mine is, to see Dr Summer about brain scan result and where we go from here. Won't be very uplifting to you and others for a while! I'm not sure why some patients are suitable for immunotherapy and others not. They test the cancer for some kind of marker to see if your suitable. My brother in law has advanced prostate cancer and he can only have chemo. Yes, trials, they take our blood for trial don't they. Did I mention an article on news and online about cancer vaccine for advanced Lung, prostate and ovarian. Trials at Christie and London Royal. Looking very promising and could be rolled out in 18 months, I'm going to mention it to Dr Summer. We'll fight this Rob and get all the facts on how we can beat it. Sending love Pam xxx

Antrobus2021 profile image
Antrobus2021 in reply to Loimie

Hi Pam you don't mither me quite the contrary as you always raise my spirits.

You sound more upbeat which is great and I hope all goes well with Dr Summer tomorrow. You seem to have a lot of faith in her so sure she has your interest at heart and will do her best for you.

My appt has been cancelled rearranged for Monday afternoon. I did ask about immunotherapy and it is an option if applicable.

I understand my appt will be fact finding and advised on treatment options and possible side effects. Told will be further 4-6 weeks before treatment can begin if chemo or 8 weeks if radiotherapy. Just wish is could start immediately as the waiting is the worst ( sorry being self indulgen). I am sure you know what I mean .

Keep.me updated as always lovely to heaf from you and we all gain by the support on this site.

Rob

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Loimie profile image
Loimie in reply to Antrobus2021

Hi Rob, yes, feel a bit better today, been putting some bulbs in garden, daffodils and crocus! Takes my mind off it when I’m in garden, but not really the weather for it. It’s a shame your appointment been cancelled, another wait for you. Yes I do have a lot of faith in Dr Summer, she said she will always be honest with me, worried about that! who’s your consultant Rob? That’s good that immunotherapy may be an option. Your not self indulgent, we’re all like that, just want to get things going don’t we. Let me know how you get on and keep in touch. Sending love and best wishes. Pam xxxx

Antrobus2021 profile image
Antrobus2021 in reply to Loimie

Hi Pam

I think we have to try to distract our minds 2hen we are feeling low, which inevitably is going to happen. Planting bulbs is a good idea as gets you out in the fresh air and exercising as well.

I felt like some fresh air too today, so went to a local garden centre for brunch and then to buy family Christmas cards, usually good selection but very poor and many empty spaces, came back with a kettle but no cards! Then found had charged us twice for kettle - typical.

My consultant has a posh sounding name

Dr Aurora Sanz Torres.

All the best for tomorrow and keep smiling Pam , it suits you.

Rob

Loimie profile image
Loimie in reply to Antrobus2021

Hi Rob, sounds like you’ve had a good day, apart from being charged twice for kettle! You should go back with receipt, brunch as well, that’s nice, not been out to eat for a while. Got my Christmas cards from charity shop at Christie, quite nice, and same price as shops. What a posh name your consultant has, sounds Italian or something. I let you know how I get on, if it’s bad news, if you don’t here from me, I’ll be hiding under the covers! Sending love Rob. Pam xxxx

Antrobus2021 profile image
Antrobus2021 in reply to Loimie

That’s more like the regular Pam. Sure you won’t need to be hiding under the covers either.

Let me know how things go.

Always here for you.

Rob

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Loimie profile image
Loimie in reply to Antrobus2021

Will do Rob, I’ll message you when I’m home. Thanks for always being here for me, it’s much appreciated. Pam xxxx

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