Stage 3A cancer has [probably] spread to adrenal glands

[Sandy N]

Hello!  First of all, let me say that I'm extremely relieved and grateful to have a place such as Lungevity to come to.  Last fall I was diagnosed with Stage 3A lung cancer at the age of 60.  I had been a smoker for many years and the first action I took was to quit (year anniversary was Nov. 8th 😉).  I did the 6 weeks of chemoradiation and the end-of-treatment scan showed "no evidence of disease".  Music to my ears!  I started Imfinzi and was tolerating it pretty well (except for some light inflammation in my lung).  Same good news at the following scan 3 months later.  However, the third scan showed a small blip in my right adrenal gland that my doc said they'd keep an eye on.  But my chest, lymph node, etc. all came back good so while this blip was in the back of my mind, I was able to pretty much leave it there and enjoy the next 3 months.  Had a scan on Nov. 23 which revealed that the blip had increased a bit in size (doc said he still doesn't know if they'll be able to get enough tissue for an accurate biopsy) and is also on the left adrenal gland.  The lymph node in my chest has also slightly increased in size.  Imfinzi was stopped, of course (and it obviously didn't do any good) and I am awaiting a phone call to find out when my biopsy will be scheduled.  They are also going to do a relatively new type of blood test to determine if I have a genetic predisposition to certain types of cancers, which I might due to the amount of cancers on my mom's side of the family.  

I've done some reading on lung cancer and adrenal glands and it sounds like a fairly common place for a spread and prognosis is better there than anywhere else.  Yes, I'm trying to keep up hope!    My doc said that while it's no longer curable as I'd have graduated to Stage 4 (one graduation I'd like to miss, OK?), he said that this "could" be where it stops.  Of course, that's what I hope.  

Kind of in a bad zone right now but trying to look for those glimmers of hope and I'm not ready to throw in the towel. 

Thanks for reading my post and I'm looking forward to hearing from the folks in the Lungevity community and becoming part of this amazing group of people. 

[LexieCat]

Hi, Sandy, 

Sounds to me like you're going into this with the right mind-set. I was pretty bummed when I was diagnosed as Stage IV in July, after a lobectomy to remove a Stage Ib adenocarcinoma three years ago. The one thing that makes me Stage IV is a single very small met to my sacrum. My doctor, though, is pretty sure that the chemo and immunotherapy regimen I'm on should adequately address it. Still, it's considered incurable and I will be on maintenance therapy indefinitely. Seems like you're in a similar situation where we might be incurable but not untreatable. 

The one thing you might want to consider, depending on your situation, is applying for Social Security Disability. Stage IV lung cancer is a basis for automatic approval, and even though there's a 5-month waiting period, the disability benefit amounts to the same thing you'd get if you retired at full retirement age. Just something to keep in mind. There are a lot of stories about how long it takes to get approved for SSDI, multiple hearings, etc., but none of that applies for Stage IV lung cancer. I was approved about 10 days after applying and someone else here recently had the same experience. 

[GaryG]

Sorry to hear about the new development. Hopefully the test results will be in your favor. However your attitude is the right one and keeping hope is better than giving up. Wish you the very best.

[Sandy N]

1 minute ago, GaryG said:

Sorry to hear about the new development. Hopefully the test results will be in your favor. However your attitude is the right one and keeping hope is better than giving up. Wish you the very best.

Thanks for the good wishes, Gary!  Much appreciated!

[Sandy N]

Thanks for your response, LexieCat, and it really was helpful.  I didn't know that I'd qualify for SSDI and that's something that perhaps I should look into.  While I'm not going to even begin putting a deadline on my life, the thought of trying to balance work and then this isn't the most appealing.  Does SSDI cover medical expenses that surround the myriad of treatments that I'm sure are to come?  

[LexieCat]

1 hour ago, Sandy N said:

Thanks for your response, LexieCat, and it really was helpful.  I didn't know that I'd qualify for SSDI and that's something that perhaps I should look into.  While I'm not going to even begin putting a deadline on my life, the thought of trying to balance work and then this isn't the most appealing.  Does SSDI cover medical expenses that surround the myriad of treatments that I'm sure are to come?  

No, not directly. SSDI "works" like Social Security--it is a monthly benefit that is based on your work history. If you go to the Social Security website, www.ssa.gov and check your account for the benefits for which you would be eligible, you can see how much you'd qualify for. Something else to consider, though, is that if you get SSDI, you will be automatically eligible for Medicate in two years. So that may not help you at the moment, but you otherwise wouldn't be eligible until you are 65, so it is likely to benefit you.

Do you not have insurance, or are you concerned it is inadequate? Many hospitals and drug companies have programs that will provide free or low-cost care to those who can't otherwise afford it.

[Sandy N]

11 minutes ago, LexieCat said:

Do you not have insurance, or are you concerned it is inadequate? Many hospitals and drug companies have programs that will provide free or low-cost care to those who can't otherwise afford it.

I do have insurance and very good insurance at that so I'm very blessed in that regard.  I think I'll hold off on the SSDI for now but will keep that in mind.  The first time around, I took a couple of months of FMLA as I was having radiation 5 days a week for 6 weeks and chemo was added to one of those days and this also included some post-treatment recovery.  But I can work from home if need be so I won't be using as much sick time as I did the first go-round.  It'll be easier not having to drag myself to work if fatigue sets in.  Of course, I don't know what course of meds/treatment I'm in for yet but I'll know soon enough, I'm sure.  Thank you very much for reading and responding to my posts and I look forward to hearing from you more and more!   

[Rower Michelle]

Hi Sandy,

Wanted to reach out and Welcome you here where you’ve already gotten some great advice.  When I was diagnosed with Stage IV lung cancer in 2018, I didn’t have any understanding how the disability process worked.  My integrative oncologist was the first to suggest proceeding with disability, he wanted my life as stress free as possible.  Of course the insurance was a major source of stress when my employer shut the division down.  I learned that U qualified for a COBRA extension (in my case 11 months) which was enough time to get me to Medicare.  I just got my Medicare card which is effective in March. 
 

On an unrelated note, as part of this evaluation do you know if your team has ordered comprehensive biomarker testing? It takes about 2-3 weeks for these tests to be processed and are critically important for developing a treatment plan. 
 

Once all the diagnostics have been completed, you might want to consider a second opinion as the science is moving faster than oncologists can keep up, which is great news. 
 

Anything you need- just ask,

Michelle

[LexieCat]

I was planning to try to keep working, but chemo and immunotherapy have given me brain fog and fatigue. And for me, it helped a whole lot not to have to worry about whether I'd feel up to working on any given day, and not to have to stress out over whether I was keeping up with my work responsibilities. My employer is keeping my job open till I would get my first check--by which time I should also have had a couple of courses of maintenance therapy, so I should have a better idea then whether it's practical for me to go back to work.

I'm lucky in that I'm already collecting a pension from a previous government job, which also covers 80 percent of my healthcare. 

Do keep it in mind and don't hesitate to use it if it will make things easier for you at some point. We paid into the program and are entitled to use it if we need it.

[jack14]

Welcome to the club no one ever wanted to be a member of. I joined a few months ago when I was diagnosed with stage 4 NSCLC.I have never come across a finer group of folks in my life. They have helped me to cope and deal with more issues than I can count.

jack

[Jennedy]

@Sandy N I have verified that if I go on LTD i am still eligible to get insurance through my employer. My son-in-law is in HR and said that is standard. I plan on working until spring if I can because I need the mental distraction. 

[Sandy N]

19 hours ago, Rower Michelle said:

Hi Sandy,

On an unrelated note, as part of this evaluation do you know if your team has ordered comprehensive biomarker testing? It takes about 2-3 weeks for these tests to be processed and are critically important for developing a treatment plan. 

Michelle

Hi, Michelle!  Found out yesterday that my biopsy and blood test is scheduled for this Friday.  Yes, a biomarker testing has been ordered and I'm also having a "Tempus test", which is supposedly relatively new enough that some insurance companies don't cover it yet or only cover half.  Just a side-note on that.....the patient navigator who called me submitted an online application (only a couple of questions) on my behalf and Tempus will be covering my test 100% so that's something to do for anyone who will be getting this test!   Also read my scan report...I had forgotten to get one while I was at my scan result appointment.  So had them send it to me.  I'm glad I did because I feel better after reading it for myself.  

Thank you for reading and responding to my post!

[Sandy N]

15 hours ago, jack14 said:

Welcome to the club no one ever wanted to be a member of. I joined a few months ago when I was diagnosed with stage 4 NSCLC.I have never come across a finer group of folks in my life. They have helped me to cope and deal with more issues than I can count.

jack

Thanks, Jack!  Happy to get to know everyone here.  I wish it could be under better circumstances for all of us but it is what it is and it's an honor for me to be able to meet you all!

[Rower Michelle]

Hi Sandy,

Good news on the Tempus test. My mother had it too, I don’t understand the reluctance of insurance companies to reimburse as the data now shows a targeted biomarker is identified 50% of the time.  That makes treatment more effective (and in the long run more efficient).  Penny wise and pound foolish.  Keep us posted. 
 

Michelle

[Sandy N]

18 minutes ago, Rower Michelle said:

Hi Sandy,

Good news on the Tempus test. My mother had it too, I don’t understand the reluctance of insurance companies to reimburse as the data now shows a targeted biomarker is identified 50% of the time.  That makes treatment more effective (and in the long run more efficient).  Penny wise and pound foolish.  Keep us posted. 
 

Michelle

This IS good news, Michelle.....and I think our futures get brighter each day!  

[Lisa Haines]

Hi Sandy

just wanted to wish you well and let you know that I am very sorry that it looks like you may have progressed to stage 4.  

 I also wanted to let you know that there are many stage IV patients who are doing well and living long lives. I'm very fortunate to be one of them and will be celebrating my sixth cancerversry in March.

 Opdivo was a lifesaver for me and I'm very grateful that I had such a wonderful response to immunotherapy as my second line treatment.

[Lisa Haines]

7 hours ago, Rower Michelle said:

Hi Sandy,

Good news on the Tempus test. My mother had it too, I don’t understand the reluctance of insurance companies to reimburse as the data now shows a targeted biomarker is identified 50% of the time.  That makes treatment more effective (and in the long run more efficient).  Penny wise and pound foolish.  Keep us posted. 
 

Michelle

   Okay you have me stumped?  What is a Tempus Test - that's new to me and I did Google it and it sounds much like biomarker or genomici testing?   Is is new or different to what we have already (Foundation One etc).   I am not aware of ever having this test?  

[Rower Michelle]

Tempus is another company, like Foundation One that does biomarker testing.  I think it all boils down to which company the hospital has a contract with.  Foundation One, I believe has the widest reporting available and some doctors do not find it helpful as it detects all mutations, many of which are not considered actionable, coming under the nice to know, but not much you can do about it category.  My mother's Tempus report came back three weeks and three days from being sent.  (Who's counting right?)

 

[LouT]

Sandy,

Let me join the rest of my Lungevity Family in welcoming you here and letting you know that there is always hope.  Take everything one step at a time and heed some of the great advice you have been getting.  I look forward to hearing updates as you move forward.

Lou

[TJM]

Sandy,

We have a similar predicament. Had my PET scan yesterday any got the results today.  Basically same info as CAT scan.  Turns out they should have done a PET/CT scan with dotanate.  Better test for my kind of Cancer.

Meet with my ONC tomorrow and a very curious what the plan will be.  I think a second surgery might be possible because the mass looks to only be in the RML. Also possible the pluerus (sp) is malignant and cant convince my self if that precludes surgery. Will be a long night but I will feel better once I see the plan

Your in my thoughts.

Peace

Tom

PS...this forum is truley a life saver.

[Sandy N]

23 hours ago, Lisa Haines said:

Hi Sandy

just wanted to wish you well and let you know that I am very sorry that it looks like you may have progressed to stage 4.  

 I also wanted to let you know that there are many stage IV patients who are doing well and living long lives. I'm very fortunate to be one of them and will be celebrating my sixth cancerversry in March.

 Opdivo was a lifesaver for me and I'm very grateful that I had such a wonderful response to immunotherapy as my second line treatment.

Thanks, Lisa!  I appreciate the advice on Opdivo and also the encouragement regarding long lives.  I'm not ready to start planning my funeral or writing my obituary yet, that's for sure!  I'm going to fight this every inch of the way.  I figure for each day I am alive, each day that science is going to be coming up with even newer treatments that maybe we will see "old age".    

I have read that durvalumab can cause adrenal nodules but I'm not going to put myself through those mental gymnastics.  I'd rather go in prepared for stage 4 and find out it isn't instead of the other way around.  Such is life!

Thanks for reading and responding to my post!

 

[Sandy N]

15 hours ago, TJM said:

Sandy,

We have a similar predicament. Had my PET scan yesterday any got the results today.  Basically same info as CAT scan.  Turns out they should have done a PET/CT scan with dotanate.  Better test for my kind of Cancer.

Meet with my ONC tomorrow and a very curious what the plan will be.  I think a second surgery might be possible because the mass looks to only be in the RML. Also possible the pluerus (sp) is malignant and cant convince my self if that precludes surgery. Will be a long night but I will feel better once I see the plan

Your in my thoughts.

Peace

Tom

PS...this forum is truley a life saver.

Keep us posted!  You're in my thoughts as well!

[Sandy N]

15 hours ago, LouT said:

Sandy,

Let me join the rest of my Lungevity Family in welcoming you here and letting you know that there is always hope.  Take everything one step at a time and heed some of the great advice you have been getting.  I look forward to hearing updates as you move forward.

Lou

Thanks, Lou!  I'm very happy to have such a wonderful group of people to be able to get to know!  Wish it were under different circumstances but we're all in this together!

[Lisa Haines]

Thanks Michelle for the Tempus Info, learning something new every day!!  🙂

[jack14]

Thanks for clearing that up Michelle, (i.e. Tempus test) I can take that question off my list for my Onc's PA who I see in a couple weeks.