Lung cancer stage 4 ... non small cell cancer

[Sajani2020]

My sister is recently diagnosed with stage 4 lung cancer . Her age is just 30 . She is non smoker . But we are surprised how she get this ?we are searching for good treatment as soon as possible . Please any good suggestions ?

[Bow-19]

Just wondered if your sister has been tested for mutations eg ALK, EGFR, ROS1. Often non smokers who are young seem to have a mutation and this really affects the type of treatment that you are offered. Definitely a question to ask. I am ALK Positive and have met people from 17 years old upwards who are ALK Positive.

Hope your sister gets the best diagnosis and the best treatment and responds well to it xx

[Sajani2020 in reply to Bow-19]

We did EGFR but it came negative so again we are trying other test as you said . Please hope for good and pray for her that other treatment will work in her case .

[JanetteR57]

Right now you're probably shocked and confused - I remember feeling similarly in November 2010 when told the scan I was looking at was lung cancer - I'd never seen a ct scan before and had no idea what I was looking at but also shocked so my response was 'how on earth have I develop that? I've never smoked in my life'.... at the time research was scant into lung cancer in general and never smokers in particular. The first mutation EGFR had just been given a lifeline with a targeted agent so testing was done for that as it was assumed I may have that - I didn't. Having had a number of chest infections in the years beforehand I now believe the repeated inflammation may have contributed to mine.... there are many treatments available even for stage iv non small cell lung cancer and clinical trials too. I've enclosed a link to Roy Castle lung cancer foundation whose campaign last year shows several younger women (non smokers) who developed it..... there's a lot of information in plain English on their site explaining things.... now that there are more targeted treatments there are a lot of tests to do to determine the characteristics of the tumour and the person (genome) to ensure the best treatment is offered the 'best' order. the pandemic has changed the availability and timing of some treatments so some people are now having immunotherapy who previously wouldn't have had this.... but for others, targeted therapies, chemotherapy and radiotherapy remain the main treatments, usually in combination. Don't write her off - I've met patients who've lived with stage iv - and many were years before today's treatments became available.... good luck. roycastle.org/campaigns/lik...

[Sajani2020 in reply to JanetteR57]

we did EGFR test but it came negative so again we are trying other test for treatment . Please pray for her good recovery

[JanetteR57 in reply to Sajani2020]

will do - hope an effective treatment is identified soon for her and she/you can pick up the pieces of your lives after the diagnosis....

[etpd2226]

I’m so sorry to hear about your sister. I’d contact the Go2LungCancerfoundation. I’ve found them very helpful. I will keep your sister and your family in my prayers. Stay positive. Diet, meditation, prayer, positive support, acupuncture, counseling, energy work, massage and exercise have been helping me tremendously. I was diagnosed with stage 4 metastatic lung cancer and have no biomarkers so chemo and targeted therapy are out. I am on immunotherapy Keytruda and my first scan after three treatments was markedly improved. I was diagnosed on June 16, 2020. Hang in there. Life Over Cancer by Block and Anti Cancer Living And The Cancer Fighting Kitchen were three books recommended to me that I found helpful. Blessings.

[Miranda_GO2 Partner]

Where does your sister live? I wanted to echo the groups comments and suggest that she talk to the doctor about comprehensive biomarker testing, not just for checking for EGFR.

The shock of a cancer diagnosis often includes this question of why. There are some risk factors we know about but there is still a need for more research on this question of "why". Please feel free to call our helpline if you would like copies of some of our educational materials or other information. Sending my best to you and your sister.

[Sajani2020]

She lives in Nepal ..

[Miranda_GO2 Partner in reply to Sajani2020]

If you would like, I can see if someone from our LungMATCH team can look into clinical trials in Nepal. One of our LungMATCH navigator is also from Nepal so she may also have some suggestions. If this is something you would like, please email [e-mail] with more information about where you sister lives and what treatments she has had so far.

[Sajani2020 in reply to Miranda_GO2]

Thank you for your suggestion . But lung match is very expensive . We can’t afford this . We just try good treatment for her .

[Miranda_GO2 Partner in reply to Sajani2020]

Sorry for any confusion, LungMATCH is a free service that we provide to help patents and caregivers look for trials and navigate treatment. You can read more about it at lungmatch.org.

[Denzie Moderator Volunteer]

You’ve had some terrific suggestions so far. Sadly, your sister is in the fastest growing population of lung cancer patients; never smoking women under the age of 30. The youngest patient I know of was 9 years old when diagnosed with stage 4 nsclc. Her parents sought for 2 years for a doctor to do a CT.

Do check in with the Go2 Foundation. They have been one of the driving forces behind the ALCMI Study which looks to find causes in never smokers under the age of 30.

alcmi.net/research/goylc-st...

Where was she biopsied? It’s more likely that one of the National Cancer Institute’s NCCN Affiliates would have automatically checked her for a panel of genomic tests, not just the EGFR.

nccn.org/members/network.aspx

Or consider one of these centers that Go2 is affiliated with.

go2foundation.org/risk-earl...

[Jenniferroseolson]

If she can receive comprehensive cancer care, she can have a very good chance of living with cancer for a long time. It is not the automatic death sentence it was in the past. I have been living with stage IV nonsmallcell lung cancer with no actionable mutations for 5 and a half years now and am doing very well. Praying for her and for you now. Have hope.

[Sajani2020 in reply to Jenniferroseolson]

Yes hoping for good .. actually doctor said it’s 4th stage but when I googled i think it’s 3rd stage . I don’t know why they are telling like this .

[Denzie Moderator Volunteer in reply to Sajani2020]

This week I will celebrate 10 years survival with stage 4 lung adenocarcinoma. There was no such thing as an actionable mutation treatment then. I’ve seen quite a few improvements in treatment these past several years.

How large is your sisters primary mass? Did they find it in both lungs or the pleural?

[Sajani2020 in reply to Denzie]

Large pleural based parenchymal mass measuring about 43*68 mm seen in the right lung base in keeping with known Carcinoma .

multiple parenchymal modules of different sizes seem involving all segments of the lung parenchymal B/L in keeping with mets.

Multiple enlarged mediastinal lymph nodes.

This is recently diagnosed report of my sister . Can you tell which stage of cancer it is ?

[Denzie Moderator Volunteer in reply to Sajani2020]

I answered on your other thread also. It’s my understanding that it’s stage 4 because it is in all segments of the lung.

[Sajani2020]

Yes .. she took her first chemo last week and gonna give another one after 2 weeks .