Adenoid Cystic carcenoma of lung with EGFR mutation

[Karen62]

Hi I'm struggling to find anyone who has Adenoid Cystic carcenoma of lung with EGFR mutation as this type of cancer is so rare, so Roy Castle Foundation sent me the link to this site to see if there is anyone here with any info?

[LouT]

Hi Karen,

Sorry you need to be here, but glad you found us.  After reading your post I did some research on ACC (as I'm sure you have) and it seems to be unique in many ways.  I'll be looking to see which members respond with their experience of this illness and in the meantime I'd like to share a few bits of information with you.

1.  From my readings on ACC, surgery and radiation are the treatments used.  Please take a look at "Treatment Options for Lung Cancer" it covers the treatments most used for this form of cancer as well as including information on mutations.
2. We have a section specific to "EGFR" so you can hear from folks deal with that mutation and it can be found here.

I'll be watching to see if others have faced this rare type of cancer and hope that you'll keep us updated on your journey.  This is a wonderful group of survivors and you'll find great support here.

Lou

[Karen62]

Thanks Lou, as its stage 4 with metastasis in liver and spine I've been told surgery isn't an option. I've got my first oncology appt. on 29th August so will see what they say. I'll be very interested if anyone on here has the same. 

[BridgetO]

Hi Karen and welcome. I'm sorry to hear what you're going through. My lung cancer was early stage and "garden variety", so the treatment was pretty standard. However, earlier I had a gynecologic cancer that was Stage 3 (large and spread to regional lymph nodes). It was aggressive and very rare type that had no published studies about it. My medical oncologist  was inclined to treat it as "garden variety" since she had no evidence of other options. I chose to get a second opinion and sought out a doctor who was considered the "go to" person for rare gynecologic cancers. She had some experience treating women with this cancer and made some recommendations for further /more aggressive treatment, which my med onc was willing to try due to my "dire prognosis".  It worked, I guess, since this was 12 year ago and I'm here today with no evidence of disease.

So, if you can find a doc that has some experience with your specific type of cancer, a second opinion could be a good idea. I found my expert by asking a neighbor who was in a different department at our local teaching hospital to see if he could identify someone for me, and he did.

All my best,

Bridget O

[Karen_L]

Hi Karen,

Just a quick welcome. Even if there aren't folks here who share your specific diagnosis, we understand diagnostic and treatment experiences. I hope you'll keep us posted.

 

Karen

[Karen62]

So I've just had my first oncology appt and been told that my EGFR mutation isn't the right one for targeted therapy and because adenoid cystic carcenoma tumours are slow growing there isn't any treatment options apart from monitoring, gutted to say the least 😥

[RJN]

Hi Karen,

Sorry to hear your news. Are they really saying there is nothing they can do? Are you at a major cancer centre? I have to admit I haven’t heard about adenoid cystic carcinoma, but have you asked about trials? X

[Karen62]

She said that as its slow growing, chemo would just make me ill with no benefit, and because I have EGFR S768i mutation radiotherapy and immunotherapy don't work, and as its spread surgery isn't an option either. I'm at Arden Centre in Coventry UK which is a cancer centre. I have booked a GP appt. today to see if I can get a 2nd opinion. 

On 8/29/2023 at 11:55 PM, RJN said:

Hi Karen,

Sorry to hear your news. Are they really saying there is nothing they can do? Are you at a major cancer centre? I have to admit I haven’t heard about adenoid cystic carcinoma, but have you asked about trials? X

So I've just had my first oncology appt and been told that my EGFR mutation isn't the right one for targeted therapy and because adenoid cystic carcenoma tumours are slow growing there isn't any treatment options apart from monitoring, gutted to say the least 😥

[RJN]

Blimey! Definitely seek a second opinion and jump up and down if you have to. I am at UCLH MacMillan Centre in London, which is only an hour away by train to Euston from Coventry. They have a great trials programme. Others have recommended the Royal Marsden. Good luck.

[Karen_L]

On 8/31/2023 at 1:17 AM, Karen62 said:

EGFR mutation isn't the right one for targeted therapy

Ummm, sorry, Doc, but NO. Take a look at this, @Karen62, and see if you'd like to look for another doctor: https://www.mycancergenome.org/content/alteration/egfr-s768i/

Karen