My dad’s diagnosis stage 3a adenocarc... - The Roy Castle Lu...

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My dad’s diagnosis stage 3a adenocarcinoma. Feel 💔

Jaynelovestravel profile image
9 Replies

My dad finally has his lung cancer diagnosis after two months of tests. It’s stage 3a adenocarcinoma. Waiting for the treatment plan with the oncologist to start quickly. I feel 💔 Symptoms were ignored by medics last year and someone saw a growth last June in his lung and never told us. I just hope we can get treatment quickly and there’s a positive path ahead. Any advice welcomed.

9 Replies
Danni54 profile image
Danni54

Hi. I am so sorry to hear about your Father and have loads of sympathy for you both. I have been in the same situation which is a bit worrying! Our hospital had my tumour on an Xray for 15 month's, also Adenocarcinoma in the top right lobe . I had told the Dr.s and Specialist's that something had changed and I felt really ill. I had stomach scan's and eventually an Xray which showed the tumour but nobody told me until I had pneumonia 15 month's after that first tumour Xray , was ambulanced into hospital where my wonderful Thoracic Consultant did a chest Xray , then came and asked me why I hadn't had anything done about the tumour and I asked " what tumour! " Thing's moved fairly quickly and I had endless scan's and a biopsy and then we had to travel 4 hour's to get to the hospital where I had a Lobectomy. Looking back I was actually quite calm but I think that I was in shock! The Lobectomy went well and I wondered whether your Father had been offered a Lobectomy ? I was lucky in that I had VATS Lobectomy so minimal scarring. I came home on the 5th day and didn't have Chemo or Radiation and was told that the Surgeon was sure that he had got all of it but no guarantees! Cheerful! I have an Xray every year to make sure that it hasn't come back etc.! The Lobectomy was 3 year's ago so I have 2 more yearly Xray's before I get the all clear....hopefully! Now! That's not right! I WILL get the all clear and your Father will get through this. He will have to behave for 3 or 4 month's if he does have the Lobectomy but I know other people who have had it done and they have their lives back. Unfortunately, I have 2 fractured vertebrae and a few health issues but please reassure him that cancer can be beatable and there are now amazing people who are working so hard to help us.

People here will tell you that I talk a lot but I'm here if you want to ask anything. We seem to have to push for treatment so please tell your Dad that he can always phone his Oncologists Secretary and ask for more information about treatment. Does he have a good G.P. because he could always speak to them and ask them to push for more information about his treatment options. You can always keep posting here because people here are truly amazing and the advice from the Administrator's is so good. There is encouragement for the friend's and family of people with cancer. You can , also, always speak to Macmillan Nurses who are also wonderful so, please, know that there is so much support everywhere for your Dad but also for you. Take care and let us know how you both get on. Very best wishes to your Dad and very best wishes and a big hug to you.

Danni x

Jaynelovestravel profile image
Jaynelovestravel in reply to Danni54

Hi Danni.

It’s just great to have people out there who can help as I don’t know who to talk to who would understand what we’re going through.

I’m my dad’s case there is a 7.5cm tumour in the lower right lung. It’s fortunately stayed in the lung apart from being in a couple of lymph nodes but it’s in an awkward place near his spine so surgery would be very tricky. That’s why they’re saying chemo and radiotherapy.

I’m just fuming that some medics and his GP found a tumour in a scan for his heart last June but didn’t tell us! We should have had a diagnosis last year if we’d have known. Everything seems to move so slowly on the NHS too. It feels frustrating and I just want treatment to start so we have some hope.

Danni54 profile image
Danni54 in reply to Jaynelovestravel

Hi Jayne. I'm so sorry to hear that your Dad's tumour is inoperable but I know people who have gone into remission after having had Chemo and Radiotherapy so please don't give up. I don't understand why, if the Radiographer's and Consultant's see something on an Xray or scan, they don't tell us or people who could investigate. There is something badly lacking in the medical profession. I have so much admiration for Nurses though because they have to pick up the pieces of the medical errors. Believe me , I understand your anger because I have been where your Dad is although I was ' lucky ' that my tumour was operable. I complained to the hospital and got nowhere! If I hadn't had pneumonia I don't know what would have happened or , rather, I do but I don't think about it!How is he coping ? Is he managing to stay positive? It's hard and people telling you to be positive can become really annoying but I do think that attitude does help though it's so much to come to terms with and the back and fore to hospital and the waiting is really tiring. Please tell your Dad that everybody here wishes him nothing but the best and the same for you. Please let us know how he gets on because ' speaking ' to people here should help both of you.

Very best wishes.....and a hug,

Danni x

Chanie profile image
Chanie

Hi Jayne, empathise with your dad and slow service. I was diagnosed just before Xmas with stage 3b and that was after months I'd asking GPs about my cough. However 4 months later after 10 sessions of strong radiotherapy and 4 cycles of chemo and immunotherapy, the latest scan is clear and even the large tumour at bottom of lung seems to have also disappeared. I am still coughing and now having scarring on lungs but the future prospects have improved so be positive about treatments and that even if there is no real cure, things to get better. Best wishes Chanie

Jaynelovestravel profile image
Jaynelovestravel

Oh, thank you so much for sharing your story as we do need hope at the moment and hearing peoples’ experiences really helps. So pleased that your treatment has been effective x

JanetteR57 profile image
JanetteR57

Sorry to read of your dad's delayed diagnosis and imagine you're all waiting to learn what treatments are possible Stage 3a is definitely treatable - stage 3 is the one most debated by clinicians as to what treatment to offer first - as many have a combination of chemotherapy, radiotherapy - some have surgery and some have targeted treatments and/or immunotherapy. I get that you feel let down at the moment - however many people have imaging irregularities and the pathway is actually to keep an eye on it (surveillance) but sounds as if this may not have been the case - the main thing now is to ensure the hospital give him the best care available. I had a 7cm tumour in my left upper lung found when I took myself off to A&E in the mid October after feeling really unwell - the chest x-ray clearly showed a 'lesion' in my left lung but it was ignored, misdiagnosed and mistreated as. uncontrolled asthma. Due to never smoking and this misdiagnosis no urgency was put on the CT scan when the scanner broke down so I waited over a month for a CT - but once the MDT (multidisciplinary team) meeting happened things moved quickly - I was sent for a PET scan then an appointment came through to see a thoracic surgeon about 10 days later but within days of the PET scan his secretary called me to say I had to go in first thin in the morning to a different hospital to see him. He told me the large mass had to be removed with half my lung and I had surgery in mid December. I learnt in the January it had been a 7cm adenocarcinoma. That was in 2010/2011! Things have changed a lot since then in terms of available treatments and knowledge about the many many different types of lung cancer and its mutations. I've met patients who've survived many years before the newer treatments were around and a couple who sadly passed away during the pandemic (not from their lung cancer) were 18 yrs out and 24 years out from their diagnosis and there are others like them.

Some who are unable to have surgery (which now in the UK is done for the majority via keyhole rather than open which I had) are able to have SABR (cyber knife) a type of precision radiotherapy -

There are many different types of radiotherapy used in lung cancer. As it's spread to his lymph nodes a systemic treatment approach will be used to 'zap' it from the rest of his body as surgery would only be a 'localised' treatment and not deal with the spread to his lymph nodes which is why they're saying that. however some stage 3 patients do go onto have surgery - there are many factors involved.

Sadly the pandemic has resulted in many delayed diagnoses due to the overlap of symptoms with many conditions, backlog, delays in getting referred via GPs, lab tests etc.

Many are diagnosed via emergency admission or 'incidental findings' when investigating other problems which sounds like your dad's situation.

The UK's major lung cancer charity is Roy Castle lung cancer foundation who support in many ways those affected by lung cancer - not just the patient - with clearly written regularly updated patient information, telephone help lines, online group calls, in person support groups and 'keep in touch' service.

The type of cancer he has is a type of non small lung cancer. Treatments vary considerably between types, stages and patient's health in a more 'targeted' way these days, even those with the same apparent type may be given different treatment if their tumour characteristics (from the biopsy) make him a candidate for certain treatments unavailable to those without such markers or characteristics.

Try not to google - generally information about lung cancer is outdated and inaccurate - the many treatments out there are varied - some are relatively new, some are 'old' but the agents or methods may be new and data is always years behind when reported... Don't give up - just hang on in there to help him ...

Good luck... roycastle.org/about-lung-ca...

Bow-19 profile image
Bow-19

It will be difficult. Try to take one day at a time. Roy Castle Lung Cancer Foundation has a nurse helpline, if you want someone to chat to. I find it useful to write a list of questions to take to my appointments so that I remember to ask them. I also make a note of the answers. A diary is good to log what is happening each day, otherwise I find that things can blur into one.

Also useful to see on the Roy Castle Lung Cancer Foundation Website if there are any Lung Cancer Support Groups nearby. I go to one and there are people with all stages of lung cancer , who are on different treatments plus a lung cancer nurse to ask questions to.

Also worth asking if your Dad has any mutations and if there are any clinical trials that might be appropriate.

I wish your Dad the best response to his treatment x

RoyCastleHelpline profile image
RoyCastleHelplinePartner

Dear Jaynelovestravel

So sorry to hear your dad has lung cancer and how distressing this must be for you all.

You have received some wonderful replies on the forum of which there is not much to add to. I have placed below some links for both information and support services that we offer.

This link will take you to our booklet on 'managing a lung cancer diagnosis' roycastle.org/app/uploads/2...

We have a range of information booklets on the different treatments and living with lung cancer which can all be found through this link: roycastle.org/help-and-supp...

You can register for any of our support services, from online group support to one to one support at: roycastle.org/help-and-supp...

We offer a one of patient grant of up to £150 and if you would like to apply for this for your dad you can fill in the online form through this link: roycastle.org/patient-grant...

Your dad should have a lung cancer nurse specialist allocated to him and if he does not have one this can be requested through his oncologist or GP.

Once you know his treatment plan, and if you would like to discuss anything you can email ask the nurse 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

Take care of yourself also, and if you are looking anything up on the internet, we would advise that you use the following websites: roycastle.org cancerresearchuk.org or macmillan.org.uk

Kind regards

The Roy Castle Support Team

Jaynelovestravel profile image
Jaynelovestravel in reply to RoyCastleHelpline

Thank you all so very much. I think we’re just shocked and waiting for the treatment plan after what has been some very long months indeed. I appreciate all the support.

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