Newly diagnosed: Hello I have just... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Newly diagnosed

purpleorchid123 profile image

Hello

I have just been diagnosed with non small cell adeno carcinoma.. right lung .. I have a biopsy set for Monday and a meeting with the oncologist NHS on the 29th July.

this seems like a long time to wait ?? I have pain that I take pain killers for daily and worse at night

I have been told that it's treatable but not curable ... not sure what this will mean for me ??

many thanks

19 Replies
RoyCastleHelpline profile image
RoyCastleHelplineAdministrator

Dear purpleorchid123

Welcome to the forum and so sorry to hear you have lung cancer. It can be quite daunting given a cancer diagnosis and not knowing what will happen next for you.

This link will take you to our booklet on 'Managing your lung cancer diagnosis' from investigations, types of lung cancer and possible treatment options. On page 48 of the booklet there are a list of questions you may wish to ask at your consultation on the 29th July.

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

The biopsy itself usually takes around 2 weeks for the results and a bit longer if they are looking at any cell mutations that may be present that could offer you treatment options of Immunotherapy or Targeted Therapies.

It is not unusual to have an appointment a few weeks after your biopsy.

Once the biopsy results are in, this is discussed with the multi disciplinary team that consists of the Oncologist, Radiologist, Surgeon and lung cancer nurse specialist. They look at the treatment options that will provide the best outcome for you.

Like any cancer, if this is found in the very early stages, then surgery can often be a cure. Treatments can be given either by Radiotherapy, Chemotherapy, Immunotherapy or Targeted Therapies, they can reduce the size of the cancer and stop any cells spreading, can improve symptoms and prolong life.

If you are not having enough pain relief then please let your GP know, you should be allocated a lung cancer nurse specialist who will be a point of contact for you for support and advice, if you do not have one this can be requested by your GP or specialist.

Our website has many booklets from diagnosis, treatments and living with lung cancer and can be found here: roycastle.org/help-and-supp...

We have online support groups through zoom, if you find this would be helpful and you can register your interest through this link: roycastle.org/help-and-supp...

There are many inspiring stories of those with lung cancer under our campaign section which you can find here: roycastle.org/campaigns/lik...

You may find that you are in a rollercoaster of emotions, which can be quite intense and overwhelming, this is all normal for a cancer diagnosis, and make sure you have plenty support around you.

If you would like to discuss anything further you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200

Kind regards

Ask the Nurse

The Roy Castle Support Team

Hi I had much same diagnosis got the biopsy now on chemo and immuno therapy think the aim is to shrink and contain it hope all goes well for you x

Red58 profile image
Red58 in reply to Red58

Is pain in back and shoulder ?that were I been have pain. A

Red58 profile image
Red58 in reply to Red58

Been take cocodamol for it but defo speak cancer nurse good luck let us know how all goes x

hi Yes...it is .. I am realising that this is part of it ... does the pain go when you have therapy ???

thank you so much for your reply and I hope that your treatment goes well.. sending positive love to you x

Hi I still get pain you should speak oncologist when go for biopsy results I'm sure they will give you advice I'm just take cocodamol at moment let us know how you get on xxx

Thank you and I will do.. moving around and doing housework seems to help 😀

Hi I'm new to all this this forum fantastic so many people can reassure you as it was for me scarey not really understanding what go on you will always get help from one of fantastic people who are going through.or been through what we are x

Hi hope your feeling ok and try not to worry I'm very anxious person by nature but we have take this as it comes sending you my best x

Kayseez profile image
Kayseez in reply to Red58

Back and right shoulder is also where I have pain. I am on Pembrolizamab immunotherapy. Last two scans stable which is good but why the pain in shoulder and back. No one seems able to explain so far. I receive morphine but strangely this doesn't seem to work on this pain though it helps my breathing a lot. I have been taking Over the counter paracetamol and dihydrocodene which strangely does seem to help this pain but limiting as I have to be careful not to take too much paracetamol. Pain is in my right shoulder. I had a lower right lobectomy but this was long ago.Take care everyone.

so sorry to hear you re still getting pain ... I hope it settles for you.. thanks for your reply... sending love

Welcome to a forum that you probably never thought about before your current experience - this is probably the scariest time when you just start on this 'journey' when things are being investigated. Lung cancer treatments have changed beyond measure in the last few years and now many more patients are able to have treatments that specifically target aspects of their tumour that may be driving it (making it worse). To detect who may respond to which treatments require a range of tests that then take time in the laboratory to be analysed. Until the results of these investigations (imaging, biopsy, blood and others may be done) are in and gathered together to form a complete picture to be looked at by a multi disciplinary medical team, there is no point seeing the patient as the questions couldn't be answered... many many patients in the UK are diagnosed at late/advanced stage but newer treatments and treatment combinations have resulted in better outcomes for many. Treatments have also altered as a result of the covid pandemic so this may offer other options. Try not to 'google' as information is outdated and inaccurate - use trusted websites such as Roy Castle lung cancer foundation if you are curious as their information is regularly updated.... to answer your question, no it isn't a long time - especially in the pandemic which has caused pressure in the system at different places... hope this information helps... roycastle.org/about-lung-ca...

thanks for this Janettethis is really helpful... it is all so new to me and I am.learning as I go. my Cancer nurse specialists at the hospital are really busy and do nt always seem to have time to explain things... hope you are well xx

Red58 profile image
Red58 in reply to JanetteR57

Hi Janette I'm on.pembrolizumanb.permetrexed and carboplatin something show in my bloods so never got treatment this week sorry bit vague I'm a very anxious person she say to do toxinss and bone marrow they do bloods again next week to check its came down I'm quite worried well very worried have you any idea what could be going on thx

It was new to us at all when diagnosed - for me in January 2011 - and forums like this didn't exist and patient information was terribly negative - thank heavens all that has changed... I've been involved in lung cancer research since 2014 - and things have changed so much on every front. I've also been privileged to work with lung cancer patient advocates and partners in research who outlived their predicted prognosis by many many years when today's more 'modern' approach treatments were not around so don't give up..... and try and get on with life rather than spend every second worrying about the 'what if' - hopefully your team will know the 'what is' soon enough and you can discuss treatment plan... I never did have a Cancer nurse specialist - I didn't know they existed until several years after my treatment and heard others discussing them despite the recommendation that every lung cancer patient should have access to them... the new Roy Castle online sessions may help too or the nurse led helpline by them or Macmillan -as you're bound to have lots of questions... good luck.

Red58 profile image
Red58 in reply to JanetteR57

Hi Janette im on permetrexed carboplatin and pembrozlizumba something show bloods about toxins n bone marrow so didn't get treatment this week they do bloods again next week see if went down I'm very anxious at best times they don't explain it to great have you any idea what go on thankyo

Hi purpleorchid123

I hope your biopsy went well and was not too traumatic or painful.

I'm not sure how your doctor/s could have been so specific with the diagnosis and prognosis without the benefit of the biopsy results - what tests or scans have you already had that led them to these conclusions?

I see that the forum administrator and JanetteR57 have already given you a lot of information and suggestions which I know you will find very useful.

I suppose the old adage "there's no one size fits all" is quite apt when it comes to cancer treatment, what might be appropriate for one person may not be right for someone else.

In my case, a CT scan in 2019 for something enirely different picked up abnormalities in the lower lobe of my right lung, a subsequent PET scan confirmed it was most probably cancer. I had a biopsy procedure but they failed to remove enough tissue for analysis so the next step was a lobectomy.

The removed lobe was sent for analysis and testing and the results came back 5 or 6 weeks later - they told me I had 2 non small cell adenocarcinomas with the EGFR mutation Exon 19 deletion and I was followed up with 4 cycles of chemotherapy.

I was fortunate in that my cancer was caught at an early stage and had not spread to my lymph nodes or other organs.

I wish you well in your cancer journey - please do keep us informed of developments.

thank you and great to hear some good news stories

they ve diagnosed from my CT scan so far and also ..Cytology.. from the fluid they drew off ...

I need the specifics but guess I ll need to wait.. the Doctor who did the Biopsy felt that she had been successful so fingers crossed for analysis

wishing you well

😀

JanetteR57 profile image
JanetteR57 in reply to IanM1957

Sometimes they assess the images and other results and judge based on their experience but I agree - knowing the type without a biopsy is rare - I didn't have a biopsy but the large mass showed on my chest x-ray when I went to A&E and again on the CT and then on the PET scan. I looked at the internet when the letter came through to see a thoracic surgeon as I didn't know what one of those was! I was then called by his secretary a couple of days after the PET scan saying he had to see me first thing in the morning instead of my appointment the following week. He said they didn't know what was in my lung but it was large and had to be removed whatever it was together with half my left lung and then sent off to the lab for analysis to determine whether there would be any further treatment. He ended the consultation by saying until they found out otherwise, they were treating it as lung cancer which was the first time somebody had said that despite it being found in A&E 2 months earlier - it had been called a lesion, shadow, mass, uncontrolled asthma, inflammation. My surgery was 16/12/10 but I wasn't given the results until 13/1/11 my first follow up when I was told mucinous broncheoalveolar carcinoma - now reclassified by the IASLC as invasive mucinous adenocarcinoma (as it was 7cm) but BAC has gone into several categories. Clinicians are now used to seeing the predominant types for example, women never smokers seen to have rates of adenocarcinomas but generally they use a range of results but then the other investigations are used to confirm or rule out their initial thoughts.... piecing all the parts of the jigsaw so to speak... it's why getting a definitive diagnosis takes time... at the time of my treatment and diagnosis, the only mutation tested for which there was a targeted agent on clinical trial was EGFR which I didn't have (although a lot of female never smokers do have this) but I never did receive any more detail about mutations. That's one of the major changes in recent years where many patients are tested with against a gene panel. Mine hadn't spread to lymph but was in a position to be removed surgically - I was also told that chemotherapy didn't respond to the specific type I'd had but know that until the pandemic struck, that size tumour now would at least have a discussion about potential for chemotherapy after surgery. That's what I mean about things changing - combinations of different treatments, dose schedules, different types of surgery now available, who is clinically eligible for what based on so many other factors are all reasons why as you say 'one size doesn't fit all'.... good luck

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