New Member - 48 Years Old Male & Dealing with Life Change

[Guest]

Hi -

I turned 48 this July. Been married 20 years and have two great kids (18 yr. old girl and 15 yr. old boy) Life was really good until April this year when all of a sudden I got sick and was diagnosed with pneumonia. What the hell? Never had that before. Exam revealed tumor in my right lung. First told not to worry that it was likely a carcinoid and could be dealt with through surgery. Then test showed it was in my lymph nodes. Then more test showed it spread to the bone. Stage 4 lung cancer out of the blue.

I know that everyone on this site has also experienced a similar life change with Cancer.

I went through a 2 week depression when learned about spread to bone. A friend got me out of that and I have not had a depression day since July 4.

This has changed my life. I feel very good overall healthwise - which makes no sense considering what I have. My family and friends have been great. I realize the reality of what I face and stats, etc. I plan to fight as hard as I can. I don't want to leave this life.

I found this site through Google and hope to particpate in threads. Learn and give at the same time. I also want to hear of people that have beat the odds. Right now, I am done with chemo and they plan to CT scan every two months. I am told that it is only a matter of time before it comes back and spread more. That sucks for sure. But I am prepared for anything at this point.

I walk 2.5 miles every day and continue to work in my business which I started in 2006. I don't want to slow down no matter what.

One last thing. I am being treated at Emory in Atlanta. Plan to get 2nd opinion at MD Anderson. Anyone have experience with MD Anderson? I hear they are very good.

[CraiginPA]

Besides asking the wonderful people here questions that occur to you, let me suggest that not many know a lot about carcinoids, but you'll find a number of people dealing with that here:

http://www.inspire.com/groups/lung-cancer-survivors/topics/neuroendocrine-nets-carcinoid-tumors/

(Sorry to suggest a different site for specialized support, but you probably need to hook up with other people who follow that and experimental treatment options more closely than people with other kinds like me.)

MD Anderson is considered #1 in the USA for cancer in general, but what you probably need most is the #1 expert you can find in carcinoids/NET's and I don't know who or where that is.

Best hopes,

Craig

[Guest]

Hi Craig -

Thanks for the quick reply. I'm a bit confused by your reply. My doctor tells me that I have stage IV lung cancer mets to bone. He also tells me that this is a Neuroendocrine tumor in my lung that is technically non-small cell - yet acts like small cell.

Am I missing something with regards to what I have?

Thank you.

George

[eric byrne]

Hi Frank,

Welcome to LCSC,sorry to read of your dx,there are so many buddies here,with all different lung cancer types and stages,who with their experiences are sure to lighten your journey.

I have NSCLC,dxd in Oct 2008,a tumour was discovered in the airway leading to my upper right lung,following further tests a PET scan revealed there had been some local spread to the lymph nodes close to my tumour,my treatment plan consisted of 4 cycles of chemo in an attempt to shrink my tumour which if successful,could lead to having this tumour surgically removed,well the chemo was really successful,so much so my oncologist remarked that after only two cycles,he had never seen such shrinkage in a tumour before,and that I would have the surgery in January 2009.

As you mentioned,the immeadiate effect on you on being told you have lung cancer,was mentally devastating, shared your reaction,I did require sleeping pills and a anti-depressent to tide me over the early weeks following my dx.

I did worry over so many things during that period,gosh my mind was in constant overload,when told about my devised treatment plan,I worried that the chemo would make me violently nauseous,would my hair fall out? did'nt mind losing the gray ones though,I did also worry about the forthcoming surgery,will it be unbearably painful?,will it leave me a breathless invalid?,well those worries and no doubt many others I have since forgotten about,never became realised,I sailed through the lot,with only slight discomfort post surgery,even that ache at my scar site dissapeared imperceptively with the passage of

time.

Mentally was my undoubted greatest challenge,I may be a Scot,but they missed me out with the Braveheart courage stuff at birth LOL,physically I was great following all my treatments,but I was still left with this kinda fear for my future,would I have one?,all the "what ifs" pervaded my thoughts, "what if" this cancer returns,it was really rediculous to have had been given my life back and instead of enjoying myself my life was being spoiled by these stupid negative thoughts,I really needed to do something positive to help my recovery,what I really needed was some good news stories,you know like new wonder drugs coming online to effect a complete cure for lung cancer,or finding long term survivors of lung cancer,people who against all the odds beat the disease and are enjoying life again.Well I did my research ,think I read every book in my local library on cancer,searched the internet,boy this was labourious,and not very rewarding,stats were.nt good,survivors so difficult to find,where are they all?I thought,surely there must be some?.One day,I picked up a newspaper,in it there was a feature about a guy starting up a Lung Cancer support group in a local hospital,it caught my attention,I went on to read this guys story,boy,was it music to my ears,dxd with SCLC in 1993,given two months to live,hospitalised for his chemo regime,family called out to his bedside on more than one occassion,the doctors did'nt think he would see the next day,Robert, astounds everyone by making a return to full health,in 2007 he is then dxd with NSCLC,given chemo and surgery.I just had to meet this guy,and I did,I joined his support group,and we have become the best of friends,strangely,Robert 10 years my senior,was born and brought up in Springburn,the same district in Glasgow as I was,we went to the same schools,even shared many of the same teachers,we have such fun sharing with each others company.i have since met many more long term survivors,many of them here, on this very site

I had become a very pro-active advocate for lung cancer too many stories to share with you here,enough to say,I have been on radio,TV,newspapers,magazines,etc lung cancer sure rained on my parade,but it sure came with a

great big silver lining.Bye for now.

[eric byrne]

Ooops Sorry George for miscalling you Frank,I cannot imagine why the confusion?my senile dymensia playing up again?

[CraiginPA]

George (EsseFortis),

Could you could help me understand what is confusing about my reply?

Yes, NET's (neuroendorcine tumors) & carcinoids can be considered a NSCLC (non-small cell lung cancer, i.e., anything other than small-cell), but as you already know they are also different from other NSCLC's or SCLC's in some ways, and treatment options can be a little different. So even though you may want to learn about things common to NSCLC including NET's, it is to your advantage to understand your specific type better and join conversations with people who have the same *specific* type of lung cancer you have.

For example, there is a treatment originated in Germany (and I think there's a clinical trial of it somewhere in the USA) that targets NET's; other NSCLC's don't have that option. On the other hand, I don't know if drug-targetable mutations like EGFR, ALK, and ROS1 occur in NET's (they aren't in SCLC and odds vary even within the NSCLC types).

If you click on the link I provided, you'll be able to go to a category of discussions within the inspire.com lung cancer forum that focuses specifically on NET's/carcinoids -- people with the same specific type of lung cancer you have, people who will more precisely understand your situation and be able to share their experience and knowledge about that with you. (Most of that forum will require you join inspire.com and it's lung cancer forum. BTW, you will want to go into your personal/privacy settings there and turn off all commercial contact/inquiries or else drug companies might annoy you with surveys, etc.)

Best hopes,

Craig

[curlysue50]

George:

This site is for anyone dealing with lung cancer. It comes in many forms. If you are looking for medical advice you might want to look at some of the more specific types sites. If you are looking for support as you face this devastating diagnosis there is much of that here.

I have NSCLC adenocarcinoma. Stage 4. Spread to bones, brain, adrenal gland and liver. I had 4 rounds of traditional infusion chemotherapy which brought a very short-lived stability.(less than 3 months). I was fortunate to have an ALK translocation which can be treated with a genetically targeted drug. In. Other words, only the mutant cancer cells are killed by the drug. Not my healthy cells. I have had a very good response to that treatment and one year after my diagnosis I am stable and much of the cancer is gone or left as scar tissue. My bones are still damaged. When cancer is in the bones it eats it away and weakens it. At least in my case that is what happened. Some of that bone is trying to fill in and heal. Eventually the cancer will figure a way to grow in spite of treatment, but until then, I am trying to live life the best I can. I have started swiming and just attended my oldest daughters wedding 350 miles away.

If you need specific advice check out some of the medical sites. If you want to talk about how lung cancer is impacting your life and how others have had to deal, please stay here and support all of us who are living and surviving this disease.

Susan

[CraiginPA]

(unnecessary comment withdrawn by author)

[dianew]

George - Welcome to the club no one wants to belong to. I have had lung cancer now twice, the first time 14 years ago and had surgery, and most recently in 2008. Both times I was diagnosed with squamous cell, a form of non-small cell. I was diagnosed 3B, but squamous cell is not known for always responding as well to chemo and radiation as other types of lung cancer, so although I did have chemo and radiation, I was told it was likely to return pretty quickly. I wasn't too happy about just doing nothing, so I looked into clinical trials. You may want to do that also. I enrolled in a clinical trial that lasted approx. two years after treatment, and I am almost at my 4 year mark for this newest diagnosis. I am stable, and have remained stable since treatment ended in 2009.

As the others have pointed out, there are many different types and mutations. I live in a small town and was not tested for any mutations at all and later when I learned of this it was not possible. Hopefully you have been tested, but if not I would talk to your doctor about it.

This is a great site for support. For medical information, you may want to check out cancergrace.org. There are a panel of doctors there who answer questions (in a general way of course), and information on many of the newest treatments.

Please come back often and let us know how you are doing.

Diane

[curlysue50]

This site is a wonderful source of support for myself and many others surviving lung cancer. It means many different things to many people and we all contribute in our own ways. We each make a difference.

Susan

[CraiginPA]

No, curlysue50, was was not criticizing you, I was just defensively clarifying what I meant to make it clear that you didn't need to be defensive like your opening sentence had looked.

Since you've now clarified what you meant, I've withdrawn that clarification comment since it doesn't seem necessary afterall.

Best hopes,

Craig

[chloesmom]

Hi George,

Certainly the beginning time of this walk is very unnerving and confusing, and confidence in what you are doing comes from getting a lot of information and making informed choices.

People on this message board have a lot of personal experience, and a second opinion is always a good idea. Ask away to both us and the professionals until you get the information you need. We are all here to help each other.

I have no personal experience with MD Andersen because it's not in my area, but I would not hesitate to be a patient there.

Please stay in touch with us and let us know how you are doing.

Cindy