PET scan results

[Antrobus2021]

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?

[Palpman]

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 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.

[sassassas]

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 ❤️

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

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 [e-mail] 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

[Hidden]

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

[Antrobus2021 in reply to Hidden]

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

[Hidden 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 in reply to Hidden]

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

X

[Hidden 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 in reply to Hidden]

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

[Hidden 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 in reply to Hidden]

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

X

[Hidden 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

[Hidden in reply to Antrobus2021]

Hi Rob, hope your ok. How’s everything going? Just let you know, got my radiotherapy today at 6, Salford Royal. Getting a bit nervous now and very worried what I’ll feel like afterwards. Thinking of you and sending love. Pam xxxx

[Antrobus2021 in reply to Hidden]

Hi Pam

Hope everything went well with your radiotherapy and no adverse side effects. I am doing ok, went for x-rays yesterday and an ultra sound scan to try find out why my leg is swollen and painful. ultrasound showed two blood clots so back on the blood thinning injections for a month. these things keep us on our toes.

Sending you big hugs Rob x

[Hidden]

Hi Rob, thanks for your reply, it’s always nice to hear from you. So sorry about your blood clot’s, always something isn’t there. Well, it was very difficult last night, 6pm in the evening job, two half hour sessions and one 15 minute. I found it really traumatic, the mask was unbearable, pressing down on my head, I had to ask for it to be removed for a minute or two. I was scared and having a panic attack. We shouldn’t have to go through this Rob. Just glad when home and in bed. No after effects at the moment. Take care Rob and speak soon. Sending love and best wishes. Pam xxxx

[Antrobus2021 in reply to Hidden]

Hi Pam

Really sorry to hear that you found the treatment traumatic but pleased that you got through it and with no apparent side effects. We both have an inner strength so when the chips are down we come back stronger although may not appear so at the time.

Hopefully you are feeling much more relaxed being in your own bed and in familiar surroundings.

Keep smiling, as suits you and makes people wonder what's going on.

Sending love and best wishes to you too.

Rob

x

[Hidden in reply to Antrobus2021]

Thanks Rob, hope treatment goes well for you, when is your next consultation and plan Rob. It helps to relax, something I’m not very good at! Best wishes Pam xxxx

[Antrobus2021 in reply to Hidden]

I have a video consultation with my consultant on 15 December, hopefully all the x-rays I had carried out yesterday are fine. Hopefully treatment will commence end of month.

Like you I am not too good at relaxing as always on the go and as still using crutches to get around unable to do much cooking which is a passion of mine.

All the best and keep me updated.

Rob

x

[Hidden in reply to Antrobus2021]

Yes I hope you start treatment Rob. I've had to adapt to finding things to do around the house with not walking and cycling, been reading, bit of baking not that good though! And of course a couch potato! Speak soon love Pam xxx

[Hidden]

Hi Rob, been a while. How are you. What a shock about Ollie, it’s taken us all back hasn’t it. Can’t get my head around it, such a shock. I’m back at Christie’s next week, cancer not spread any further in brain. You take care and keep in touch. Sending love xxxx

[Antrobus2021 in reply to Hidden]

Hi Pam

I am ok thanks apart from a dull ache and pain in my leg, so upping my pain relief. Yes it was a shock about Ollie and so sad.

Pleased to know that your cancer has not spread any further in your brain, so how are you keeping?

Rob x

[Tike3]

Hello Antro

Long time since we messaged, how you doing? 4 month's in fact! You keep me strong so been missing that!

Take care

Pam

[Antrobus2021 in reply to Tike3]

Hi Pam

Good to hear from you. I am OK some bad days mostly good. Was in hospital 4 days a few weeks ago with DVT and raised white blood cells bug recovered from that . Had a ct scan Friday on chest to check what is happening as new lesion found on sternum. Trounle with this illness is you can't take anything for granted.

Hope you are ok znd goings going to plan for you.

Rob

X

[Tike3 in reply to Antrobus2021]

Hi Rob

So happy you have more good days than bad, that makes such a difference. So sorry about the DVT have they treated it. Hope CT scan ok, let me know Rob.

When will you get results for sternum Rob, I had a spot on top vertebrae but radiotherapy has resolved that.

My chemotherapy which I last had 18 March only two more sessions to go out of four had to be postponed due to immunotherapy I had last September causing ulcerative colitis, apparently it's a side effect but can last for weeks or months like it did with me. So had to go in Christie's to be treated, completely dehydrated with losing so much fluid. In two weeks over Easter, home now with 30 tablets a day!!

I'm very worried that chemotherapy won't have same effectiveness now with going 5 weeks without last 2.

Got telephone consultation on Wednesday so hoping says I can start it again.

Got brain scan in a couple of weeks, last one 3 months ago showed tiny spot of cancer that didn't show on CT scan.

Your right Rob we can't take anything for granted, we always say don't we, that we're fighters!

Sorry rambling on!

Keep in touch

Pam