exon 19 deletion mutations of epidermal growth factor receptor

[IanM1957]

Hi all,

This is my first post on this forum, please be gentle with me!

Is anyone familiar with this genetic mutation which is sometimes seen in non-small cell lung cancers?

The last 4 months have been a roller-coaster ride for me ever since a tumour with satellite nodules were spotted in the lower lobe of my right lung whilst I was having an abdominal CT scan; it was subsequently confirmed as cancer by a PET-CT scan, I was referred to a thoracic surgeon who decided the best course of action was to remove the lower lobe.

I had a full thoracotomy and lobectomy 6 weeks ago and today I met an oncologist to discuss the results and the planned treatment and was told that the cancer is/was an adenocarcinoma but it was "unusual" in the sense that it had developed from a mutation of the epidermal growth factor receptor.

The plan of action is to give me a chemotherapy mix of Vinorelbine and Carboplatin - four 8 hour sessions, one session every three weeks, to kill off any cancer cells that might remain but are too small to show on CT or PET-CT scans.

I went into the appointment full of good intentions to ask lots of questions and take notes but, in reality, I failed - the appointment was delayed by 90 minutes and I was so stressed by the time I eventually got to see the oncologist that I forgot to ask the questions I intended to.

Any advice/comments will be gratefully received.

Sorry for the long, rambling post.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear IanM1957

Welcome to the forum where you will find lots of support and encouragement.

Hope you have recovered well from your surgery. It is understandable the emotional impact this has on yourself and family and friends. Feel free to post any questions on the forum or to the EGFR support group which I have detailed below.

If you want the description of the exon 19 deletion EGFR this link explains is fairly well:

mc.vanderbilt.edu/ckm/gl/mu...

You may find this online support forum of benefit to you, it is dedicated to those with the epidermal growth factor reception mutation (EGFR) egfrcancer.org/about-egfr/

It explains diagnosis, treatments available and is an excellent place to find support from those who are living with EGFR lung cancer. This quote is from their website:

'Our community of survivors and caregivers benefit from sharing knowledge and connecting with others who are experiencing similar journeys.'

Macmillan support have some good information on your combination treatment of Vinorelbine and carboplatin:

macmillan.org.uk/informatio...

This link is to our information booklet on chemotherapy: roycastle.org/app/uploads/2...

You should have been allocated a lung cancer nurse specialist who can support and guide you through what is happening next, if you do not have one, this can be requested by your Oncologist or GP.

If you wish to discuss anything you can either email us at [e-mail] or call our Freephone nurse led helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team

[IanM1957 in reply to RoyCastleHelpline]

Thank you so much for this information and the links, it will be very useful in helping me to understand and come to terms with my diagnosis.

[Bow-19]

There is also an EGFR Facebook group for people in the U.K. who have the mutation that you have. It’s definitely worth joining that to get support from people in the same situation. I have an ALK mutation and use the ALK UK and Worldwide pages to give and get support. Wishing you all the best x

[IanM1957 in reply to Bow-19]

Thank you Bow-19

[Bow-19 in reply to IanM1957]

Just found the link to their website egfrpositive.org.uk

[Bow-19 in reply to Bow-19]

egfrpositive.org.uk

[IanM1957 in reply to Bow-19]

Thanks Bow-19

[JanetteR57]

Welcome to the forum Ian and hopefully you're recovering from your surgery. I note you mention the medical terms but wonder whether you are clear what they are? A full thoracotomy is the method of surgery (i.e. open not keyhole) and the purpose of it was the lobectomy - removal of a lobe of one lung. Adenocarcinoma (a type of non small cell lung cancer) is not rare as far as I understand - I think it's the most common type and EGFR mutations within adenocarcinoma is most often seen in female never smokers as far as I have gleaned from various lung cancer conferences. There are many abnormalities within the genome and yours with an exon deletion is one of several different types. Some people have EGFR mutations, others ALK, others ROS1, others KRAS and others none of these. The TracerX/lung matrix trial has different treatments/agents for some of these mutations but most of these are now 'targetable'. There are many of us without such mutations so have fewer treatment options. I had adenocarcinoma and Thoracotomy/lobectomy in Dec 2010. Which lung was yours in? If the right lung, there are 3 lobes and in the left lung, there are 2. Mine was my upper left lobe and my mucinous adenocarcinoma was 7cm. I had no idea at the time of my surgery how few patients are eligible for surgery so feel blessed to have had it and still working/travelling/swimming all this time on which from what I'd read on the internet and in patient literature at the time seemed impossible. I'm pleased to say that in the intervening years I've met patients who have survived 20+ years when some of the new treatments were unavailable so keep your hope. There is good clear information available on Roy Castle lung cancer foundation website in plain English (regularly updated by clinicians and reviewed by a patient panel for clarity) on the different types - you have non small cell, treatments and explanations about lung surgery, chemotherapy, radiotherapy and immunotherapy. Hopefully these will answer some of your many questions and there are also suggested questions to ask your medical team. Lung cancer now is a highly personalised service - dependent on the biology of the tumour, the genomic characteristics of the patient and any other conditions/fitness - all of which need finding out to determine the optimum treatment. Good luck with your recovery and hope you get some answers soon. At the time of my treatment I just wanted to run a mile from the hospital and couldn't wait for the appointments to reduce so was back at work within a few months and swimming. However in the last 5 years I've become very involved in the lung cancer research area and attend various conferences/committees and wish the general public (and GPs) could see the major advances being made in understanding of the various lung cancer types and treatments. Immunotherapy being one of the latest ones (if people are clinically eligible) alongside less invasive surgery for some, different types of radiotherapy including SABR/cyberknife and above all, combination therapies using different modes to attack the cancer on several fronts. You could always ask your surgeon for the oncologist's secretary's phone number or a cancer nurse specialist if you have questions after your appointment rather than waiting and fretting unnecessarily until your next one. best wishes.

[IanM1957 in reply to JanetteR57]

Hi Janette,

Thank you for your long reply and for all the information.

I had the lower lobe of my right lung removed; the surgeon had intended to use the VATS procedure but, as I have recently been diagnosed with cirrhosis of the liver and my liver is swollen, he decided to go with a full open thoracotomy to give himself more room to manoeuvre his instruments without inadvertently disturbing the liver.

I, too, have read that EGFR mutations are most common in female non smokers with adenocarcinoma so I don't know why I have it!

I'm scheduled to have a thorax/abdomen/pelvis CT scan in a couple of days followed by an Oncology appointment so I'm hoping to get more information about any remaining tumours and the plans for on-going chemotherapy and follow-ups.

Thanks once again for your advice and best wishes.

[JanetteR57]

Hope it was useful. Understand the reasons for your open rather than keyhole surgery. hope you get some clear answers and treatment plans soon. At the time of my diagnosis I was told my type was rare so I did a bit of online research into the specific type I had and found scientific papers citing it is most common in South Asian women never smokers so like you I'm a little mystified (especially as I have a blood group more common in South Asian populations!) but 'most common' mean 'impossible'. Good luck with your continued recovery - hopefully you'll be back on your feet in no time.

[IanM1957 in reply to JanetteR57]

Thanks, once again, Janette.