new diagnosis

[Confused6]

Hi all, I've just had the results of a recent PET scan. The cancer nurse phoned and told me it was 81% positive for lung cancer. She said they are suggesting I go for 5 sessions of Radiotherapy. I have an appointment to go see consultant on 11th August. I was just wondering if anyone else has been given results like this before as I thought it would have been a clear you have it or you are clear. I also have emphysema so they do not want to do a lung biopsy. I phoned my GP surgery to see if i could get an appointment to talk things over with someone there but doctor said I was not needing to see anyone to talk things over with i had just got myself in a state and wouldn't give me an appointment. can anyone on here help.

[Hidden]

So sorry for you diagnosis Confused6.

The hospital Cancer Care Team should contact you regarding the talking over of things. I hope you will hear from them very soon, if not give the hospital a call and let them know you need to talk with someone, about the procedure, your concerns, counselling etc.

My very best wishes to you.

[Hidden]

Couple of links for you here:

england.nhs.uk/cancer/livin...

nhs.uk/service-search/other...

+ there should be contact telephone numbers on any letters you receive from the hospital. As for a copy of letters etc.

[Confused6 in reply to Hidden]

Thank you so much for your replys. I live in Scotland I probably should have said but the links you sent me have led me to the Scottish site so I will have a look on it and see what I can find out.

[2greys]

Hi Confused6, Welcome to the forum.

Yes, I have had the same Radiological diagnosis via a PET scan, I was not given a percentage but the tone of the consultant was very "forceful", extremely blunt and to the point. "You have lung cancer". Just like you I have Emphysema.

After failing the fitness for surgery test and being told I had a 60% chance of mortality with surgery, I turned it down and elected Radiotherapy. I was also told they would not do a biopsy as it would cause more damage than good. The next step was a consultation with the Oncologist, who explained the procedure and I would be given 5 doses (they call the doses fractions) with SABR (Stereotactic Ablative Radiotherapy) some times called SBRT. This new treatment has two narrow beams moderately powerful beams that cross over, targeted precisely at the site of the tumour to produce a high powered dose.

The first appointment will be a CT scan at which they will stick (glue) four small metal reflectors one on your chest high up, one lower down just below the base of your sternum and one each side of your chest. The CT scan is then performed and then they remove each reflector after tattooing a "small" dot where they were. This enables them to map out the tumour in relation to those tattoos for the treatment. At the same time they will sort out a precise head rest using separate pieces, this will be used to make a custom molded head support for when you have the treatment, which might take a week or two. The tattoos are permanent for the rest of your life but they really are just small dots.

Then comes the treatment, the treatment machine called a Linac (Linear Accelerator) will be housed in a building, sometimes below ground level, sometimes in a special radioactive shielded building, usually called a "Bunker".

You will be asked to change into a gown that you remove before you lie on a hard table with your personal custom headrest they will push and pull your body about to get you in the best position, with your arms out over the top of your head like with a PET/CT scan. They will then call out numbers, a lot of numbers that you should ignore as this is for them to calibrate the machine precisely. The lying on the hard table staying absolutely still is the hardest part of the procedure. There is no pain or even a sensation.

The staff will then leave you on your own, but fear not they have a camera monitoring you all the time and an intercom system. The machine will start and the procedure starts with it doing a preliminary scan and then perform the radiation treatment. You will hear some high pitched whirring sounds, again like a CT scanner. The actual "zapping" itself is measured in seconds.

When I had my treatment each of the 5 sessions had a rest day between so mine was on Mon, Wed, Fri, Mon and finally Wed.

I hope that has clarified things for you. If you have any further questions just ask and I will try to answer them. I had my treatment 27 months ago and the tumour has shrunk to a third of it's size and continues to be stable, in remission. I could have to go through it all again soon, as I have another fast growing nodule on the other side of my lungs now, waiting for another PET scan presently. I have no compunctions with doing it all again.

cancerresearchuk.org/about-...

[Confused6 in reply to 2greys]

Thanks for taking the time to provide me with all the information. The nurse did tell me today it was SBRT treatment I would be having although I didn't remember the letters til you wrote it. She also told me surgery was out of the question. You have certainly reassured me. I am so sorry to hear you have another nodule growing and wish you all the best when it comes time for your treatment. You must be a very special type of person to take the time to reassure a complete stranger. I can't thank you enough x

[2greys in reply to Confused6]

You are more than welcome, I can still remember, quite vividly, the day that I was diagnosed, extremely traumatic to be told that it I had a year, maybe two to live without treatment. They told me there were several options to be treated, surgery being the primary option.

The time wasted with the fitness for surgery test and the followup consultation with the surgeon who told me that surgery would more than likely kill me. All a completely undesirable experience, probably the scariest time of my life, worse than being diagnosed with severe Emphysema.

Afterwards you will be monitored for 5 years. You should have a CT scan and followup consultation every 3 months for the first year. After that, if successful, it will be reduced to every 6 months and perhaps, like me, you will only have alternate X-Ray and CT scans 6 months apart. 5 years from treatment, hopefully, you will get the all clear and be declared cancer free.

Keep a positive mind, It helps with the success of the treatment and with the recovery process. Keep exercising both before and after your treatment. In fact I actually managed to go to work all through my treatment. As I have previously said any questions, just ask. I wish you the very best of luck.

[Damon1864 Volunteer]

So sorry to hear this but really hope the radiotherapy goes well sending you lots of loving thoughts have a good night and take care 😊 Bernadette xx xx 🌈

[Confused6 in reply to Damon1864]

Thanks for your kind thoughts. I'm sure I'll rest a lot easier tonight after the lovely replies and help I've had from everyone ❤️

[HungryHufflepuff]

I'm sorry to know about your diagnosis but even more sorry to know about the awful way you were treated by and spoken to by your doctor. It's appalling and uncaring and shows a total lack of empathy. Wishing you all the best for your treatment.

[Confused6 in reply to HungryHufflepuff]

Thank you so much for your reply. I was truly shocked myself at the GPs attitude. I know at this time they are busy but I also have heard they are encouraging you to get in touch if you feel you are not coping. Lucky for me I found this page.

[Lemon7]

I just want to wish you well. Your doctor's conduct was not what you expect from someone caring for the physical and mental well being of others. I hope future care will be better. Best wishes to you

[Izb1]

Hi Confused and welcome to the site. I am so sorry to hear your news and the appalling treatment from your gp. The reply from 2grays should reassure you as to your treatment, he has been through so much and has a great wealth of knowledge and shows that this can be beaten. I wish you all the very best , please keep us updated. Irene x

[watergazer]

Hi and welcome Sorry to hear of your diagnosis especially during these times when it's difficult to get hold of a doctor . 2 greys has given you a lot of information which I'm sure will help you and give you positivity that it's not all doom and gloom. Take care x Anita

[lesley2]

I don't often post, but these comments have really shown the kindness of strangers and I am so very grateful I found this site as it helps so many of us.

[Chestyblocked]

Good Luck with the Treatment G.P.s can be so arrogant and I’m sure they have no idea how their patients feel Thinking of you ❤️

[Exocist]

Hi.

Shocking display from hospital. .not sure if rules are.different in Scotland.

In birmingham, they would not tell me or my father over phone. So we arrived at hos. Told bad news. And offered Counselling.

Be safe. Godbless. And I will light a candle for you at Church.!!!

Exorcist.

[Confused6 in reply to Exocist]

I'm not sure of rules either. I'm hoping to find out a bit more when I go in on 11th August. I think things are kind of messed up at moment due to virus. It was cancer nurse who phoned though. She had been in at the appointment with consultant and gave me her card and told me to phone anytime. I think she was a bit taken aback when I told her about my GP as she had advised me to give them a phone.

[Susan1200]

I want to wish 🌠you all the very best,hopefully not to much of a long wait.

I personally think it's disgusting how you were spoken too ,so uncaring it's just not right .

I shall be praying 🙏for you .

[Nicholatracy]

Wishing you love and lots of prayers. 🐞

[christina1947]

Poor you of course you are going to be in a state and all the more reason you need to talk with with a GP you have some questions. 81% is not 100 sure you may need medication for your so called state (anxiety) Get back on the phone you deserve better treatment Take care xxx

[Confused6]

Thanks to everyone who replied to my post. Have had a couple of days now to get used with diagnosis and thanks to you great people am feeling a lot better inside myself and I think at the moment that is the main thing. Wishing each one of you well and sending heartfelt thanks to you all xxx