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New Diagnosis of NSCLC


Eileen Kelly

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Hi  my name is Eileen, 

I was diagnosed with lung cancer after 2 years of following a lung nodule, it was on my right lower lobe down by my diaphragm. It could not be biopsies, internally so at 18 months it showed a slight change and at 24 months, pulmonologist, said I needed a resection to see what was there. I ended up with a lobectomy, adenocarcinoma, stage 1A, I am going to MD Anderson for follow up.  Anyone else in Austin TX, with lung cancer, there were no support groups that I could find before Covid?

 

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Eileen,

Welcome here.

We can be your support group, and we have the advantage of not transmitting COVID!

You had your lobectomy, correct? The MD Anderson is a great cancer center, but a stage IA clean resection is the lung cancer outcome most of us pray for. You might not even need post surgical chemo. Do ensure however that the resected cancer tissue is sent for further on tumor marker testing. Certain forms of adenocarcinoma can be successfully treated with what are called targeted therapies and it would be a good idea to know in advance if your tumor qualifies. The one downside of any stage 1 disease is about a 30% probability of recurrence after successful treatment. So I'd ensure you get the lab information in advance in the event you are in the 30% cut.

But, I'm hoping you are not. At Lungevity, we've got lots of resources (Lung Cancer 101 is just one) and information about lung cancer. On this forum, we are either lung cancer survivors (like you) are folks who care for lung cancer patients. We know a lot about lung cancer and are here to help you every step of the way. So join us if you please.

Stay the course.

Tom

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Eileen,

Welcome to our forum and sorry you need to be here.  Tom covered a lot already so I'll just add my welcome and let you know that if you have any questions we have a lot of experiences to draw from in order to provide answers for you.  For my part I too had a lower-right lobectomy staged at 1a squamous cell.  Also, in my case, I did not require additional treatment.  Of course there are many checks to look for recurrence, but that occurs regardless of stage.  

Again, feel free to ask any questions you will.

Lou

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HI Eileen and welcome. I ended up on these forums because I couldn't find a lung cancer support group here in Portland OR either. There are support groups for all sorts of other cancers but none for ours. I think it's due to the stigma of lung cancer and the assumption that people with lung cancer won't live long anyway. You'll see if you look around on here that this assumption is WRONG. With may new treatments available, we're living a good long time, including those of us with advanced cancers.

I, too, had a lobectomy and was diagnosed with adenocarcinoma Stage 1a in November 2016. I've been NED since. This group has been really helpful to me.

Bridget O

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On 8/23/2020 at 6:53 PM, Tom Galli said:

Eileen,

Welcome here.

We can be your support group, and we have the advantage of not transmitting COVID!

You had your lobectomy, correct? The MD Anderson is a great cancer center, but a stage IA clean resection is the lung cancer outcome most of us pray for. You might not even need post surgical chemo. Do ensure however that the resected cancer tissue is sent for further on tumor marker testing. Certain forms of adenocarcinoma can be successfully treated with what are called targeted therapies and it would be a good idea to know in advance if your tumor qualifies. The one downside of any stage 1 disease is about a 30% probability of recurrence after successful treatment. So I'd ensure you get the lab information in advance in the event you are in the 30% cut.

But, I'm hoping you are not. At Lungevity, we've got lots of resources (Lung Cancer 101 is just one) and information about lung cancer. On this forum, we are either lung cancer survivors (like you) are folks who care for lung cancer patients. We know a lot about lung cancer and are here to help you every step of the way. So join us if you please.

Stay the course.

Tom

 

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Just now, Eileen Kelly said:

 

Hi Tom, 

I think we met at a Friday Longevity support group and I saw you on the LUNGevity conference, if I have the right person.  I hope to see you this Friday at Longevity support group. It was a great conference. I still haven’t had a molecular study as they say Medicare won’t pay for it unless I need treatment, so I am in the dark about that.  I enjoyed hearing your story, see you on zoom Friday,   Eileen

 

 

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6 hours ago, BridgetO said:

HI Eileen and welcome. I ended up on these forums because I couldn't find a lung cancer support group here in Portland OR either. There are support groups for all sorts of other cancers but none for ours. I think it's due to the stigma of lung cancer and the assumption that people with lung cancer won't live long anyway. You'll see if you look around on here that this assumption is WRONG. With may new treatments available, we're living a good long time, including those of us with advanced cancers.

I, too, had a lobectomy and was diagnosed with adenocarcinoma Stage 1a in November 2016. I've been NED since. This group has been really helpful to me.

Bridget O

That is encouraging Bridget, you can’t just talk with anyone about your nervous about your next scan, they just don’t understand, Thank you for your sharing, hope to talk to you again. I am not very techie and I am fumbling around trying to use this form, Hope I get the hang of it,  Eileen

 I

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6 hours ago, LUNGevityKristin said:

Hi, Eileen!  We have virtual meetups every Friday if you are interested: https://lungevity.org/for-patients-caregivers/support-services/virtual-meetups-for-lung-cancer-patients-survivors-and Would love to see you this week!

I have been going to the 1230 one and I went to the conference and loved it, I am fumbling around on this form, not sure I am submitting correctly.  Which time do you attend Kristin?  I was thinking this friday I might try both times, Thanks for sharing, Eileen

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12 hours ago, LouT said:

Eileen,

Welcome to our forum and sorry you need to be here.  Tom covered a lot already so I'll just add my welcome and let you know that if you have any questions we have a lot of experiences to draw from in order to provide answers for you.  For my part I too had a lower-right lobectomy staged at 1a squamous cell.  Also, in my case, I did not require additional treatment.  Of course there are many checks to look for recurrence, but that occurs regardless of stage.  

Again, feel free to ask any questions you will.

Lou

Thank you Lou, I have much to learn, your story is encouraging, I am a little concerned because I developed 2 small nodules on the middle lobe, they are watching and because of Covid I only met oncologist once in person and never got to establish a relationship with the team, so I am trying to learn more from others,  Thank You, Eileen

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On 8/23/2020 at 6:53 PM, Tom Galli said:

Eileen,

Welcome here.

We can be your support group, and we have the advantage of not transmitting COVID!

You had your lobectomy, correct? The MD Anderson is a great cancer center, but a stage IA clean resection is the lung cancer outcome most of us pray for. You might not even need post surgical chemo. Do ensure however that the resected cancer tissue is sent for further on tumor marker testing. Certain forms of adenocarcinoma can be successfully treated with what are called targeted therapies and it would be a good idea to know in advance if your tumor qualifies. The one downside of any stage 1 disease is about a 30% probability of recurrence after successful treatment. So I'd ensure you get the lab information in advance in the event you are in the 30% cut.

But, I'm hoping you are not. At Lungevity, we've got lots of resources (Lung Cancer 101 is just one) and information about lung cancer. On this forum, we are either lung cancer survivors (like you) are folks who care for lung cancer patients. We know a lot about lung cancer and are here to help you every step of the way. So join us if you please.

Stay the course.

Tom

Tom Hi, I tried to respond to you but I am having problems with this form, I think we met at virtual group 1230 2 fridays ago and I think I saw you at the conference, it was wonderful, I plan to be there this Friday at virtual. I hope I have the right person. Thank you for your response, I still don’t know anything about my molecular as they tell me Medicare won’t pay unless you need treatment, so in the dark for that. Hope I get this posted and see you Friday, I enjoyed your story,  Eileen

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Eileen,

You are doing fine on the forum. I do hope you can join us for this Friday's virtual zoom meet up. Kristen posted the link in yesterday's response to your post. We'll explain molecular testing and might have some suggestions about nudging Medicare payment.

Stay the course.

Tom

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Hi Eileen,

I usually am on the 12:30 and sometimes I moderate the 5:30.  I think I will be on both this week.

As for paying for biomarker testing, please reach out to the Lung Cancer HELPLine.  They can provide you with resources that may be able to help: https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline

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5 hours ago, Tom Galli said:

Eileen,

You are doing fine on the forum. I do hope you can join us for this Friday's virtual zoom meet up. Kristen posted the link in yesterday's response to your post. We'll explain molecular testing and might have some suggestions about nudging Medicare payment.

Stay the course.

Tom

Thanks Tom, I am looking forward to Friday, next week I go to MD Anderson, so any info will be helpful!

Eileen

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Hi Eileen,

  Welcome to the group no one wants to join, but a group that will happily provide you with lots of inspiration and hope!   I am a Stage IV NSCLC survivor, who is doing well 5 1/2 years in.  I never had the option of surgery, but had great response to my treatments.  I've now been stable for over 4 weeks and I'm very thankful that Immunotherapy worked amazingly well for me.  I wish you the very best as you move forward in your cancer journey.   I'm so happy to know yours was found at such an early stage, that's something most of us have not experienced.

   Hope to see you at our next Zoom Meet-up too -- I'm a regular and try to attend both the afternoon and evening sessions and I think we meet in one recently.  This week I'll be missing the afternoon for an appointment, but will be on in the evening.  Hope to see you again.

     Lisa

  PS:  I think it's a shame that biomarker testing is not readily covered and available for all stages of Lung Cancer.    Hopefully in time, that may change.

 

 

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Thank You Lisa,

I only got to the 1230 appointment on zoom so I missed you.  I hope to see you next friday.  I will continue to try to get the biomarkers and molecular studies done.  I am finding you have to persevere and advocate for your self.  Listening to many talk in this group, it is how they have been able to survive as long as they have.  They have participated in clinical trials and keep up with all the clinical information out there, which is hopeful to me.  I am glad to hear you are doing well, its been a long journey for you and I hope you remain stable on your Immunotherapy drugs.  Thank you so much for sharing with me and I will look forward to meeting you on zoom,

Eileen

 

 

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  • 2 weeks later...

Hi Eileen,

  Yes, it's often very true that we have to be our strongest advocates and it often pays to be very persistent.   Glad you are now coming the Zoom's and look forward to seeing you next week.  I really enjoy them and think they've been a great addition.    

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