Hi I'm Lil - Recently diagnosed Adenocarcinoma on 10/20 my 50th birthday - non smoker ever

[Lillian Helms]

My name is Lillian Helms, but I go by Lil 

I was recently diagnosed on 10/20 my 50th birthday with Stage 4 Adenocarcinoma in my right lung. So scary and boy has my life now changed. 

 

I was playing tennis, walk/running 3 miles 4 x a week, now I cannot catch my breath. 

 

 

[Lillian Helms]

My name is Lillian Helms, but I go by Lil 

I was recently diagnosed on 10/20 my 50th birthday with Stage 4 Adenocarcinoma in my right lung. So scary and boy has my life now changed. 

 

I was playing tennis, walk/running 3 miles 4 x a week, now I cannot catch my breath. 

 

 

[Jennedy]

Welcome Lil! It's a lot to take in, but you've come to the right place. I was diagnosed with Stage IV adenocarcinoma on June 19. I walked a half marathon in March.

Are they doing biomarker (genetic testing) to see if you have any mutations? That will help determine the course of treatment. 

Ask any questions you have. There is a wealth of knowledge and experience on this site. And a lot of long-term survivors.

I'm still figuring it all out. 

Jenny

[Rower Michelle]

Welcome to the club no one ever wants to join. 
 

I was a 51 year old competitive athlete at the time of my Stage IV diagnosis. This came as a shock to everyone since I was also a never smoker. No one was looking for lung cancer and the myriad of various doctors and miscellaneous diagnoses went on throughout the Summer of 2018.  
 

Do you know if you’ve had something called. Comprehensive biomarker testing?  As a never smoker there’s a good chance you may be a candidate for targeted therapy (pills).  
 

Once the treatment kicked in for me, I was able to return to a somewhat normal life.  It takes a good long while for the shock to wear off. There’s many Stage IV long term survivors here.   Lots to share with you and help you along the way.  You are not alone and we will be here for you.  
 

Michelle

[Judy M2]

Lil, I'm so sorry you received your diagnosis and on your birthday no less. For your shortness of breath, you may want to ask your pulmonologist for a prescription inhaler. Before I had treatments, I used mine a few times a day.  (Haven't needed it for many months now.) It works quickly to alleviate the SOB. 

Like Michelle, I was misdiagnosed for several months until last October, when I was diagnosed at Stage IIIB. I had chemo and radiation and am now on the targeted therapy Tagrisso for my particular genetic mutation. 

This is a good community with some long-term survivors. Glad you found it early on. 

[LouT]

Hi Lillian,

Welcome to our forum and the club that nobody wants to be a part of.  There are a lot of folks here that have been where you are and stand willing to share their experiences with you and answer any questions you may have; I'm sure you'll be hearing from them soon.  Can you tell us a bit more about your case (I got the diagnosis, but some details will help)?  Also, have your doctors discussed your treatment plan with you?  If so, please share what it is.  

I truly understand how you must be feeling.  We all experience shock, disbelief and all thoughts seem to be racing when we hear our diagnosis.  I can also tell you that there are people here of all stages at diagnosis and many are survivors, so please don't give up hope.  Also, I recommend that you don't visit Dr. Google as many of the stats on surviving are outdated and run on a 5-year average rather than the most recent outcomes from the newer treatments.

Feel free to share as you need and ask any questions you have and you'll find a supportive and great family here to go on this journey with.

Lou

[SamGirl50]

Hello Lil,

My name is Sam. I too am recently diagnosed in September. Stage 1b NSCLC Adenocarcinoma. I awaiting my surgery date for a lobectomy and wedge resection on 11/30. I can say, without hesitation, that I felt I was given a death sentence but when I found this site along with these wonderful people, I have started to look at my diagnoses differently. They are all here for support if and when you need it as well as myself. Please do not hesitate. Wishing and praying for the best for you!

Sam

[Lisa Haines]

Sorry that you've had to join our group but happy that you did as far as knowing that you'll find lots of support and compassion here.

I was diagnosed at Stage IV in March of 2015 and I'm happily doing well thanks to chemo radiation and then immunotherapy.  Any lung cancer diagnosis is always a shock and for many it's found with no warning. Mine was only found after I had developed neuro changes and we first found I had a brain tumor.

I'm not sure which stage you are or what your treatment plan may be but I highly suggest if you have not already had it done that you have  tissue (from your biopsy) sent out for full genomic testing. This can help determine your best possible treatment option.

Thankfully we have come a long way in treating lung cancer and more and more people are living long lives, I hope that you will be one of them.

 

 

[GaryG]

Hi Lil: We have a lot in common: Lung cancer, tennis walking and running but no shortness of breath right now. When I was diagnosed with stage 3B in the right lung I was weak to a point where I couldn't walk. While I don't know what stage you are, I had success with state of the art treatment and there is no reason why you shouldn't expect good results either. I am walking, eating well and playing tennis occasionally. Have faith in your medical team, believe in yourself and be strong We are here to help you with our experiences so please do not hesitate to ask any questions you might have.

[Deb W]

Hi Lil,

Welcome.I am so sorry to learn of your diagnosis - and on your birthday!  I was diagnosed with Stage 1B Adenocarcinoma of the Upper left lung in March 2019.  I had a robotic assisted lobectomy on March 21, 19 - 1/3 of my lung was removed.  I had been a competitive tennis player and runner - I actually thought I had a tennis injury because a muscle in my mid back had been hurting for a couple of months...tried changing my serve and reducing my playing time.   I mentioned it to my PCP at my annual check up.  It turned out that everything was o.k. where I thought a muscle was pulled - but she said the other side had a shadow on the CT scan.  I had the surgery, no lymph node involvement so I didn't have  chemo or radiation after surgery.  Fast forward to my 1 yr check-up 4/2020...I was diagnosed with Stage IV - They believe I had micrometastases (cancer cells that drop off after the tumor was removed and can't be seen on a CT)  with 2 lymph nodes involved and the pleura area and another nodule on the  left lobe.  I started chemo and immunotherapy in May.  I had a clear scan in August and October and I'm in remission.

I wish you all the best for whatever comes next.  It's so important to have the right medical team.

If you have any questions I hope you'll always feel free to post them here.  There are a lot of smart, cancer savvy people here.

 

Deb

[Claudia]

Hi Lil,

I know exactly how you feel. I had the "Happy Birthday. BTW you have lung cancer". It happened to me. I'm sure it sucked for you because it sucked for me too. I want to let you know that I'm doing very well so maybe we birthday peeps are blessed with strength and the "never give up" attitude. I know that's how I am and it has kept me in good stead. Good luck and keep us updated on how you are. We really do care here. Peace, light and great scans to all, Claudia

[Tom Galli]

Lillian,

Oh my! I can't think of a worse birthday present.

I was diagnosed back in the "Jurassic Era" of treatment when everyone got Taxol and Carboplatin for lung cancer regardless of type. Come February, I will have survived 17-years. Now with new treatments, our plight is much more manageable, and my belated birthday wish is that you experience many, many more birthdays in the future. If I can live, so can you!

Here are my suggestions for battling the beast. I note you are a Texan. We are known for our resolve and this trait is essential. Treatment, even new methods, is a slog; persistence is essential. We are your support group so this is the place for questions.

Michelle's suggestion for comprehensive biomarker testing is a good one. Some forms of adenocarcinoma respond to Targeted Therapy and Immunotherapy and biomarker testing is the key that unlocks these very effective treatment methods.

Stay the course.

Tom

[Lillian Helms]

Thank you all for all the great advise and comments. 

I was diagnosed with Stage 4 Adenocarcinoma Lung cancer, spread to lymph nodes near lungs and found cancer damaged vertebrae's s1 and t1 and small 1 cm tumor in left cerebral lobe. They fixed my S1 while I was in hospital and I received 1 round of chemo of Alimta and Cisplatin that was on October 22, 2020. 

I unfortunately do not know if they are testing bio markers or the such.

Since they released me from the hospital on October 26, I have now been getting the run around and no priority since I had no medical insurance at the time. I lost my corporate job last year, took our money and opened a small bar on our lake town and then Covid 19, we were shut down for almost 5 months.

I am in process of going to MD Anderson for second opinion in Houston and see if they can offer any help medically and financially in one central location. I've applied for disability, SSI, ACA, and Texas Medicaid but still have heard nothing. Is there anything else for folks like me with no dependent children? 

I am told I need Gamma Knife radiation on T1 Spine and brain tumor but they have not scheduled me again I am sure because I am self pay and no medical insurance.

[Lillian Helms]

On 11/2/2020 at 8:39 PM, Jennedy said:

Welcome Lil! It's a lot to take in, but you've come to the right place. I was diagnosed with Stage IV adenocarcinoma on June 19. I walked a half marathon in March.

Are they doing biomarker (genetic testing) to see if you have any mutations? That will help determine the course of treatment. 

Ask any questions you have. There is a wealth of knowledge and experience on this site. And a lot of long-term survivors.

I'm still figuring it all out. 

Jenny

I do not know if they are doing the biomarker testing. I have been getting poor service since I left hospital and have no medical insurance. I am going for 2nd opinion at MD Anderson. They said they have financial assistance. I hope so 

[Lillian Helms]

4 hours ago, Tom Galli said:

Lillian,

Oh my! I can't think of a worse birthday present.

I was diagnosed back in the "Jurassic Era" of treatment when everyone got Taxol and Carboplatin for lung cancer regardless of type. Come February, I will have survived 17-years. Now with new treatments, our plight is much more manageable, and my belated birthday wish is that you experience many, many more birthdays in the future. If I can live, so can you!

Here are my suggestions for battling the beast. I note you are a Texan. We are known for our resolve and this trait is essential. Treatment, even new methods, is a slog; persistence is essential. We are your support group so this is the place for questions.

Michelle's suggestion for comprehensive biomarker testing is a good one. Some forms of adenocarcinoma respond to Targeted Therapy and Immunotherapy and biomarker testing is the key that unlocks these very effective treatment methods.

Stay the course.

Tom

HI Tom

Thank you all for all the great advise and comments. 

I was diagnosed with Stage 4 Adenocarcinoma Lung cancer, spread to lymph nodes near lungs and found cancer damaged vertebrae's s1 and t1 and small 1 cm tumor in left cerebral lobe. They fixed my S1 while I was in hospital and I received 1 round of chemo of Alimta and Cisplatin that was on October 22, 2020. 

I unfortunately do not know if they are testing bio markers or the such.

Since they released me from the hospital on October 26, I have now been getting the run around and no priority since I had no medical insurance at the time. I lost my corporate job last year, took our money and opened a small bar on our lake town and then Covid 19, we were shut down for almost 5 months.

I am in process of going to MD Anderson for second opinion in Houston and see if they can offer any help medically and financially in one central location. I've applied for disability, SSI, ACA, and Texas Medicaid but still have heard nothing. Is there anything else for folks like me with no dependent children? 

I am told I need Gamma Knife radiation on T1 Spine and brain tumor but they have not scheduled me again I am sure because I am self pay and no medical insurance.

[Lillian Helms]

On 11/3/2020 at 12:25 PM, GaryG said:

Hi Lil: We have a lot in common: Lung cancer, tennis walking and running but no shortness of breath right now. When I was diagnosed with stage 3B in the right lung I was weak to a point where I couldn't walk. While I don't know what stage you are, I had success with state of the art treatment and there is no reason why you shouldn't expect good results either. I am walking, eating well and playing tennis occasionally. Have faith in your medical team, believe in yourself and be strong We are here to help you with our experiences so please do not hesitate to ask any questions you might have.

Hi Gary 

I was diagnosed with Stage 4 Adenocarcinoma Lung cancer, spread to lymph nodes near lungs and found cancer damaged vertebrae's s1 and t1 and small 1 cm tumor in left cerebral lobe. They fixed my S1 while I was in hospital and I received 1 round of chemo of Alimta and Cisplatin that was on October 22, 2020. 

I unfortunately do not know if they are testing bio markers or the such.

Since they released me from the hospital on October 26, I have now been getting the run around and no priority since I had no medical insurance at the time. I lost my corporate job last year, took our money and opened a small bar on our lake town and then Covid 19, we were shut down for almost 5 months.

I am in process of going to MD Anderson for second opinion in Houston and see if they can offer any help medically and financially in one central location. I've applied for disability, SSI, ACA, and Texas Medicaid but still have heard nothing. Is there anything else for folks like me with no dependent children? 

I am told I need Gamma Knife radiation on T1 Spine and brain tumor but they have not scheduled me again I am sure because I am self pay and no medical insurance.

[LexieCat]

Wow, what a predicament to get diagnosed during a hiatus in your insurance coverage! I've had two partners diagnosed with serious illnesses while uninsured, and both qualified for "charity care" by the hospitals that treated them. Talk with a financial counselor from the hospitals treating you--most have a fund to provide care for people in your situation. 

As a Stage IV lung cancer patient, you should automatically qualify for SSDI--I was approved about 10 days after I applied. There IS a 5-month waiting period, so I won't see a check until February, but still. Once you're approved, you should automatically qualify for Medicare in two years. That doesn't help at the moment, but it's still something. Did you also apply for SSI? That's a needs-based benefit from Social Security. Here's a link that explains eligibility: https://www.ssa.gov/ssi/.

 

[jessnelson97]

Hi Lil,

I am not a patient but I am my mother’s caregiver. She too just turned 50 in August. On October 26 she was diagnosed with stage 4b adenocarcinoma that has metastasized to her bones in her back. She too is a nonsmoker. This has been such a shock to us and has been very scary. She just started radiation today. We are in this together. Sending love and healing your way. 

[Susan Cornett]

Hi Lil,

I see that you've had a lot of great information from our other members. I can't imagine having all of this thrown at you during the middle of this pandemic. I was diagnosed in March 2016 with stage IV NSCLC. I didn't have any of the biomarkers so I was not a candidate for immunotherapy. I'm currently NED (no evidence of disease) and I will say that I wasn't sure i would get here. Those first few months are scary and overwhelming.

I'm so glad you found this site. There are so many wonderful members here who share their experiences and a wealth of knowledge. This community keeps me afloat.

We're here for anything you need. 

[zara1305]

Hi Lil. Welcome.  I was also just diagnosed with stage 3 lung cancer all still new to me but so glad I found this site.  I also am now going to MD Anderson here at our Banner Hospital in AZ.  They are truly wonderful. I feel very confident in their care.  I also was playing golf 5 days a week and leading a very active lifestyle with zero clue what was happening with in my own body.  Listen to everyone on here there is a whole collection of experience and first hand knowledge. Hang in there ask questions we will make it.  

[Lisa Haines]

Hi Lil,

  I was nice (although bittersweet) to meet you on our Friday night Zoom.   Your story about not having insurance is really so upsetting to me and I truly find that you will find a way to get the care you need now to begin treatment.

  I was happy to hear you've been approved for coverage through the ACA effective In January, but truly would have HOPED they had some type of emergency plan for someone in your situation.

  I know I mentioned a bit about SSDI and SSI - and you may want to contact your local Social Security OFFICE asap to find out IF there is anything they can do.  I know from my own experience that you will likely be eligible for Social Security Disability Insurance, but there is a waiting period (6 months) before your benefits will kick in and it takes two years before you become eligible for Medicare.  Here is a link to SS online so you can look into the two programs -- https://www.ssa.gov/disability/index.htm They also have another program called Social Security Income and but as I was saying you need to be at poverty level (income and assets to be eligible) and all family income/assets is taking into consideration.  I believe you can't have more than $3000 for a family, so again, it's a program that doesn't' help many.   I would also contact your local State "Medicaid" office for emergency assistance.   

    I am sorry MD Anderson would not see you, but that does not surprise me at all, they are a "private" group and only see patients who have insurance that they accept.  Sadly that leaves out far too many.

     MOST public hospital are required to treat you regardless of your insurance status, so I would stick with those for now until you have insurance in place.  Happy to hear you found a Neuro MD who is will to help you getting Gammaknife, but again sad that the facility expects you to set up a payment plan first?  I truly HOPE you will find something to help you.  It deeply upsets me that anyone in our country should ever be denied urgently needed care when they are dealing with an illness like cancer.

     I hope you see you at our next Zoom meet up and hope you will have found some assistance.     PS:  I never would have guessed you are 50, I thought you were more likely in your 30's !

     Please know we ALL wish you the very best - I was in your shoes 5 1/2 years ago and feel very lucky to now to Stable and doing well!  (Stage IV, Brain Met and a Pulmonary Embolism).

      Best wishes,

          Lisa

[Cin]

LexiCat, is the SSI amount based on a percentage of your salary, or a set amount?

[LexieCat]

I assume you mean SSDI. SSI is a needs-based benefit that people can get if they are disabled but don't qualify for SSDI (e.g., they have not been employed long enough to be eligible). The amount of SSDI (which is what I applied for and got) is calculated based on the history of your highest-earning years. The best way to know is to create or log into your account at www.ssa.gov. You can get a list of your earnings each year and see what benefits you would get if you retire at 62, at full retirement age, or at age 70, as well as an estimate of your benefits if you are approved for SSDI. 

[Cin]

Okay, well I know what I can get from social security if I retire at age 62(next june).  It's gonna be tough, my mortgage alone is 1600/month

[LexieCat]

Retirement on SSDI is always, I believe, the amount you WOULD receive if you retired at your full retirement age. For me, it's about $500 more a month than if I were to retire at my present age (64). My full retirement age is 66 and four months, I believe. I'm sure it's an even bigger difference between what you'd get at 62 and what you'd get at YOUR full retirement age. I would check it out. Before I filed my application, the benefits estimate showed what I would get at 62 (up to that age, and then it changed to my current age), the amount I'd get at full retirement age, and the amount I'd get if I maxed out at age 70 for retirement. There was also a specific amount equivalent to what I would get under SSDI, which I've since learned is tied to the amount I'd get at full retirement age.