Looking for some answers about adenoc... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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Looking for some answers about adenocarcinoma at a young age...

Nickyc1805
Nickyc1805

I have been diagnosed with multi focal adenocarcinoma of the lungs after multiple chest infections in the past.

I am completely broken and confused, not to mention because I am completely fit and well. I have just had a baby five months ago!

This diagnosis has completely blindsided me. I am currently awaiting CT scan results to see if the cancer is anywhere else whilst also praying it is an EFGR mutation as this is the only gene test we are waiting on.

The oncologist said 18-24 months on the phone to me today and at 30 years old I am terrified. I don’t want to leave my husband and my baby. I am just reaching out for something to help me not to focus on this horrible thing that is keeping me awake at 2am!

15 Replies
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Hi, well I’ll start by saying I don’t go on this site very often now but I’m so glad I did this morning. I’m saddened to read any post but from such a young lady with a young baby, what should be the most amazing time for you, a new chapter in your life.

I was diagnosed in April 2015 with stage 4 adeno carcinoma. TTF1 positive and later tested ALK positive. I was forty seven at the time, it was a week before my sons 9th birthday. I like you was given 12/18 months to live. But here I am over 5 years on still on maintenance chemotherapy ( all be it postponed due to Covid19) 😬which has kept everything at bay whilst still having all the new targeted therapies

‘ in the bag’ as my oncologist says, should we need them.

I could go on but I know at this time there is only so much you can take in. I was given my live expectancy by one doctor only to be told by my current oncologist, That is a statistic, you are not, you are a human being and everyone is an individual. I’m not even going to say try and stay positive because it’s such a shock and you need to cry, say why me, it is an absolute bitch, but stay hopeful. 🙏 Christine xx

Hi Christine,

Thank you so much for replying. As you can imagine it’s all consuming at the moment and I just want to get to the stage where I am like you, and so many others I’ve read about on this site, managing but still here!

The waiting is the hardest part and at the moment I feel so helpless. I just want to know the answers so I know what’s facing me and so I can put my phone down and stop googling the varying possibilities!

I just have to have hope that my age and fitness is on my side xxx

Hi, there’s all different stages shock, grieving, anger etc and you have to go through these. It’s ok to feel all of these. I delve back into them all at times, but on the whole life’s good. I even forget about it at times.

I’m sure with the Covid 19 situation it’s even harder getting info, appointments etc, I was given a lung cancer nurse, and rang her many times with queries. Make a nuisance of your self if you need too. I really can’t complain. I’m very happy with my oncologist and nursing staff so I think myself lucky there. Take care. Xx

I have just had some good news that the CT scan came back clear!!

So now I’ve got my fingers and toes crossed for the EGFR mutation.

Thank you so much for talking xx

Fab news. 👍xx

Please may I ask, who was your doctor and where were you treated? Xx

Excellent news- hope you're celebrating. Like you I was shocked when I was diagnosed as I was fit, never smoker and had no idea that people could develop lung cancer (especially adenocarcinoma) after multiple chest infections - I was initially misdiagnosed as uncontrolled asthma but had repeated chest infections in the years before. Mine turned out to be mucinous adenocarcinoma and a 7cm tumour and half my left lung were removed - that was in Jan 2011 and I was at work and swimming 3 months later. At the time EGFR was the only targeted mutation - now there are many. I didn't test positive for that.

As others have said, medics should be much more cautious about quoting statistics that are always based on historic data, include everyone, people with other conditions, older patients with more damaged lungs (from smoking or exposure to other carcinogens). None of us are a statistic and one size rarely fits anyone so be your own statistic and person :)

I've been involved in lung cancer research since 2014 and wish I could broadcast how many treatments have developed in every mode in that time especially for non small cell lung cancer, how research has discovered so much more about lung cancer how combinations of newer treatments and changed technology in examining the human genome and genetic testing have been a game changer and all before immunotherapy came along giving even more a better outcome.

One aspect you describe is what so many of us find hard - used to knowing/controlling aspects of our life and we have to sit and wait but it's very necessary in this case as the wrong treatments can harm - so patience is a quality we all have to learn - although difficult. :(

I'm delighted that your scan has come back clear - as you say very worrying - but not impossible - here's to a second chance to grab life especially with a young family and live each day the best you can.... hopefully if you are awake at 2am in future it will be due to your baby and not being terrified about a diagnosis.... good luck.

RoyCastleHelpline
RoyCastleHelplineAdministrator

Hello Nickyc1805,

Welcome to the forum, I am so sorry to hear of your recent diagnosis this must have been a terrible shock for you and your family, especially having such a young baby. It is totally understandable how anxious you must feel but please know that you are not alone. There are many on the forum who have been where you are just now and as you can already see from the replies they are willing to give you support and share their stories. As Mrscancer has said your lung cancer specialist nurse will be of great support, they work with the team whose care you are under and will be able to answer any questions.

There are a number of booklets on our website from diagnosis, treatments and living with lung cancer. These can be found on this link:

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

We have a booklet which explains targeted therapies which includes EGFR mutation, link below

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

If you are looking things up online the best advice only to view the sites that are accurate based on evidence based practice, research and information, such as:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

Maggie's centers can advise on practical, social, emotional and financial support, normally you could pop in for a chat, however due to Covid-19 this is not possible at the moment but they are still taking phone calls on 0300 123 1801 and there web site with your nearest center and their information can be found on this link:

maggies.org/

There are many inspirational stories on our website that may encourage you through this difficult time which can be found on this link: roycastle.org/campaigns/

There is some additional information for those with cancer during Covid-19, from a group of charities called 'One cancer voice' which you may find useful: roycastle.org/covid-19/info...

roycastle.org/covid-19/info...

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

Kind regards

The Roy Castle Support Team

There are at least 3 Facebook groups that I’m aware of for young adults with cancer. The first one I list is lung cancer specific. The others are young adults with different cancers. These were shared with me by a young woman I know who was also diagnosed with EGFR positive lung cancer at age 30. That was 6 years ago.

facebook.com/groups/YASlung...

facebook.com/stupidcancer/

facebook.com/dearjackfounda...

Nickyc1805
Nickyc1805
in reply to Denzie

Thank you for this. What lung cancer were you diagnosed with? X

Denzie
Denzie
in reply to Nickyc1805

Mine is adenocarcinoma but mutation testing was not standard of care when I was diagnosed. That was late 2010.

So very sorry to hear this. It is a horrible shock at any age but can understand how much harder again it must be to receive such news at 30 years of age and just having had a baby.

Glad to hear it has not spread further than your lungs and that you are otherwise fit and healthy, as that definitely helps. Hope you find you do have the EGFR mutation and can have targeted therapy.

The advice you have been given on this forum is really good and there are a lot of people who have far outlived their prognoses. My own was 3 to 9 months in February 2016.

I appreciate you must be in total shock at present but hope a plan of action for treatment is put in place soon.

Sending you, your husband and baby my best wishes, hope and love 💕 xx

Thank you so much for this message. I have seen you post on other discussions so have been following your story.

At the moment I hate this stage of “limbo” that we’re in, waiting for the results of the EGFR test to determine which treatment route to go down. The more I read the more hopeful I feel that I will be able to control this thing!

The waiting is tough. I hate the waits for scan results too. No wonder it is referred to as ‘scanxiety’! Hope you find out whether you have the mutation very soon. I suspect you will feel at least a little better once you know what treatment is planned. I have tried to do what I can to help myself by trying to eat a reasonably healthy diet (with a few treats of course!😊), exercise within my physical limitations and, although not possible to access at present, I have found some complementary therapies beneficial from a wellbeing perspective. I think we feel better for taking what control we can in a situation over which we have little. You have the best possible incentive with having your baby of course.

Glad you are feeling more hopeful in light of the reading you have been doing. xx

Hi Nicky

I can totally relate to your post; the waiting on results, the anxiety, the fear, shock etc. I was diagnosed in November aged 48, no typical symptoms and a never smoker - it was a mucinous adenocarcinoma (48mm) and I had a lower left Lobectomy in December. I consider myself ‘lucky’ as it was picked up by chance when I had a scan after a heart arrhythmia. I was completely shocked when I got a call to say my heart was fine but there was a lesion on my lung that needed to be investigated - they told me the risk of it being cancer was low but unfortunately after a month of tests and waiting, it was confirmed.

I’m glad you now know that there is no further spread, I remember the dread of my CT, PET, biopsy and brain MRI results. (and I’m already dreading the results of the 6 month CT I’m due to have at the end of June).

I wish you all the best with whatever treatment plan is decided. This site is great, and also the CRUK site - I found it really helped to speak to others going through something similar, as well as for practical advice.

Ruth x

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