Hi from Upstate NY - Possible Lung Cancer iii

[RH1970]

Hello all ..

 

I am so grateful a community like this exists.  I'm afraid I'm going to need it.

 

Right now I feel like I'm numb and in a state of shock.  I am a 50 year old male and, after the results of an XRAY, CT scan and PET scan, I have been told that there is a good chance I have lung cancer.  The doctor at Roswell Park says that they believe there is a 60/40 chance that the 2.5 cm nodule and lymph nodes that appear to glow on the PET scan are indeed cancerous, rather than infectious.  They went on to explain that if it is cancer, it would be stage iii because of the nodal involvement.

 

I am at a total loss about how to process this information.  I am a Prostate Cancer Survivor of 8 years, so I have faced cancer before, but PC is very different from stage iii lung cancer.  I know the prognosis for stage iii is generally not great.  

  

I guess right now I'm hoping for words of encouragement or advice from stage iii survivors.  I need to find a way to believe that 'everything will be ok', even when I know the odds are not in my favor.  How to act 'normal' in front of my 3 young boys, how to carry on with everyday activities, how to work, make plans, etc..

 

I don't really know what else to say except thank you for being here.

 

-Rick

 

 

[LUNGevityKristin]

Hi Rick,

I'm so glad you found this community.  What happens next?  Do you have a biopsy scheduled?

Here is Lung Cancer 101 with tons of information: https://lungevity.org/for-patients-caregivers/lung-cancer-101/recently-diagnosed

The information online is all 5 years old and lung cancer treatments have come a looonnnggg way since then.  Have hope!

[RH1970]

Thanks.

I will look at that info.

I will be having a bronchoscopy/biopsy, most likely within a week.  They plan on sampling the lymph nodes first and making decisions about staging and treatment from there.

-Rick

 

 

[Rower Michelle]

Hi Rick,

Welcome here.  I was a 51 year old never smoker when I was diagnosed with Stage IV lung cancer.  We all know what it feels like to get knocked down by this surprise diagnosis.  There is no “normal” way to act, it’s okay to have very strong emotions right now, it’s a whirlwind and roller coaster of epic proportions.  
 

Once you have the biopsy there will be two waiting periods, one for the initial pathology report which takes about 2-5 days then there’s something called biomarker testing (which has a lot of other names) which helps determine what the best treatment plan is.   Since Stage III is somewhat uncommon you might want to obtain a second opinion from a major cancer center to ensure the treatment plan is aggressive and current.   A friend of mine got three opinions and now she is in full remission. 
 

We always advise people to stay away from Dr Google- it’s too far behind and can not keep up with the pace of scientific research.  Stage III is actually a pretty rare find that can be treated with curative intent.  This summer alone there were over seven (probably something closer to nine) new therapies approved by the FDA.  
 

We like to say there are only two trusted sources, Lugevity and the Go2Foundation.  
 

Keep us posted.  We’ll be here for you. 
 

Michelle 

[RH1970]

Michelle, 

Thank you SO much for this.

I am guilty of spending way too much time obsessing over web info, even though I know its not a healthy habit.

I believe Roswell Park is considered a major cancer center and it is my second opinion.  My first opinion was Robert Packard hospital in Sayre, but I have not discussed the PET results with them yet.  I am leaning toward going to Roswell Park.

I didn't realize stage iii was uncommon.  Nor did I realize there are curative possibilities, so thank you for that hope.  

I've decided not to cancel my family's camping plans this weekend.  We will deal with the biopsy first thing next week.

I will definitely keep you posted.  

-Rick

 

[GaryG]

Hi Rick: I am a 74 year old  and I am glad you found our board. Like you  I was first devastated and scared when I was told but luckily I joined here and found plenty of good advise and education to put me at ease. To the contrary  the prognosis for stage iii is greatly improved and old statistics  no longer hold true. As stage IIIB  patient I refuse to accept that my outcome won't be positive and neither should you. There are many new ways to combat lung  cancer and you need to read few posts to familiarize yourself with what's  available. Most of all don't loose hope and keep a positive attitude first because the alternative is not good and second because lung cancer is beatable.  We are here to help if you have any questions so please fire away.

Best.

[D iane]

Good luck with your biopsy.  That will be a definite of what you are dealing with.  Is it possible your prostrate is still the primary and it has spread to your lungs via your lymph system? It more commonly spreads to the bones first, but it can also go to lungs.  I just don't understand how they look at a scan and tell you lung when it all looks the same, does it not?  However, biopsy is the only way to know for certain.  Best wishes.

[RH1970]

Gary,  Thanks for the encouragement.  I am a pessimist my nature, but in this case I will definitely try not to lose hope.  I have three young boys and you're right, the alternative is NO GOOD for anyone.  No sense if filling the room with tears and dread.  

 

Diane, I wondered that too, but my PSA markers have been 'undetectable' since my operation in 2012. So I think PC mets is unlikely.  You're right:  the biopsy will tell all.  Thanks for the good luck wishes.  I'll keep you posted.

 

-Rick

 

 

[Rower Michelle]

Hi Rick,

Yes, Roswell is a Comprehensive Cancer Center.  CCC’s generally do a very good job of coordinating care teams & procedures.   
 

Depending on the biopsy results, if there is something called a mutation (for example EGFR, ALK, ROS1 are most common) detected in the biomarker testing you may also want to consult with Mass General, even though it’s a major haul, MGH does a lot of research & clinical trials with these types of mutations.   
 

One of the things that really surprised me in the beginning is that lung cancer is rarely treated as an emergency.  Sounds bizarre right?   There’s plenty of time to consult with experts for a personalized treatment plan.   
 

One hour, one procedure, one day at a time.  

[RH1970]

I will definitely ask about these biomarkers.

Sounds like targeted therapies could help if these mutations are there.

Thanks

-Rick

[LexieCat]

Hi, Rick,

Welcome from me, too. I had a Stage Ib lung cancer surgically removed three years ago, have had clean scans till the most recent, which biopsy has confirmed is Stage IV. I'm hoping to have my treatment plan nailed down by the end of this week, but it looks like I'll be having some heavy-duty chemo plus immunotherapy (Keytruda), followed by radiation to my chest and a small bone met on my spine.

You're in a great group--I've been a member since my first diagnosis and there's a lot of collective experience, wisdom, and support to be had here.

Enjoy your camping trip--not my cup of tea, lol, but people who love camping really love it (so I'm told).

 

[Babs]

Hi Rick,

Welcome.  I was diagnosed with stage iii NSCLC squamous in August 2019  I could not have surgery because of the location of the mass.  It’s in the mediastinum and occluding the Superior Vena Cava vein.  I did 6 weeks of radiation with weekly chemo.  I then went on a maintenance of Durvalumab every 2 weeks.  I was considered NED (no evidence of disease) for 8 months until a recurrence in the same location.  No metastasis.  I am waiting for my bio marker testing to come back, however with my kind of cancer, squamous, it’s unlikely there are any mutations.  I started treatment again a week ago.  2 kinds of chemo and another immunotherapy drug.  I will find out in about 6 weeks if it’s working or not. 
 

I too was devastated with my diagnosis.  Once you have your biopsy and can get some definite answers, you will have a plan and the start you need to fight this.  Please don’t lose hope and please stay off google, instead read here all of the survivor stories just like you.  It’s helped me a great deal.

Babs

[RH1970]

Thanks Babs,

I need to find those special tools to keep hope up.  They don’t come naturally for me.  This forum definitely helps though.  Thanks for your support. 
 

-Rick

[Tom Galli]

Rick,

If it is any help, I was diagnosed stage IIIB and survived lots of treatment. I'm still here, nearing 16 years after diagnosis.

Stay the course.

Tom

[RH1970]

Thanks Tom.  That DOES help!  

I’m still not officially staged.. one doctor says probably stage iii, the other says he thinks more like stage ii.  Biopsy (hopefully next week) will tell more.

-Rick

[Judy M2]

Rick, 

I was also shocked at my diagnosis of Stage IIIB NSC adenocarcinoma in November 2019 at age 66. I went through 30 sessions of radiation, weekly chemo for 6 weeks and am now on the targeted therapy Tagrisso. I had it tough for about 6 months but am feeling good now and my scans are showing continued improvement.

I look at the folks in these forums as inspiration for survival, especially since there has been so much advancement in treatments. There's a lot to learn, especially when your biomarker testing comes back. This site certainly has something for everyone, and the survivors can appreciate how you're feeling along the way. 

You can get through this even though it might be hard to see that now. 

Best, Judy

[RH1970]

Thanks Judy,

Yes, this is all so hard to believe.  

After talking it over with my wife, I think I’m considering counseling to try to figure out how to cope with this better.  Right now, I’m reeling and I haven’t even been diagnosed yet.
 

I need to find some of that magic that thrivers seem to possess.  I sincerely don’t understand where that comes from.

I remember from the Prostate Cancer experience, once a treatment plan was determined, I felt a HUGE sense of relief.

You’re right, though.  This site does help, and the newly approved treatments do offer some encouragement.  Who knows what may come in the next couple of years.

Thanks for posting.

 

-Rick

[Susan Cornett]

Hi Rick - 

I see that you've already had a very warm welcome from the others. There is so much good information and wisdom here. The site has been a saving grace for me. We're all here to support you in any way that we can. 

[Rower Michelle]

Hi Rick, 

The reeling, oh yeah.  It's real and normal.  I did see the oncology psychologist for a little while, but found it hard because he was 30 something couldn't really relate however I do find the Living with Lung Cancer Support Group to be really helpful.  You might ask the clinic social worker about it since most groups are meeting by Zoom. 

I have an Integrative Oncologist who gave me a real sense of confidence that I could do this.  There were a few books that helped give me a road map on how to cope: 

AntiCancer Living by MD Anderson's Lorenzo Cohen PhD

Cancer: 50 Essential Things to Do by Greg Anderson

Viktor Frankl's: Man's Search for Meaning, a real inspiration for survivorship against all odds. 

 

I guess the most important thing I learned is to give myself permission to mourn and  adapt to a new normal.  Brighter days are coming. 

Michelle 

[RH1970]

Thanks Susan,  I appreciate it.

 

Michelle, Thanks for the book recommendations.  I downloaded Anticancer Living just now...Looking forward to it!

 

-Rick

[LouT]

Rick,

Just throwing my hat in the ring to welcome you to the group and while I'm not a stage III survivor, I can tell you that we have them and they will be a great help to you along your journey.  I'll be here to provide any support I can to you as you face this.  The one thing I can tell you (regardless of stage) is that we were all in shock, thought the worst and bemoaned where we were.  But, this group has a great deal of experience and will be able to answer questions, provide insights and be a great sounding board for anything you want to share.

Lou