Couple of things

[Johnny]

I had the meeting with the pulmonologist today. He says from what he can see it looks like lung cancer probably stage 3. His plan is get me in for a needle biopsy, PET scan, and MRI of my hard head. . I'm trying to figure out if the needle biopsy is the best option or should I push for a Bronchoscopy. I should probably just stay out of the way and let him and the other doc's that will be coming at me do their job.

The other thing is when to share this with the family. My wife and I are separated, live in different states, but are on good terms. One of my kids lives abroad and the other in a different state.  We were all planning on meeting at my wife's house next week for 10 days but these up coming appointments that are being scheduled might change that for me.  I could just get everything scheduled for when I return but the doc says we need to act now.

I know sharing this info with them is going to be devastating. I believe it will be the hardest thing I will do on this journey. I'm not shedding tears for me, I'm shedding tears for them. Anyone else feel or felt like me?

Hugs to all going through this.

J

 

[LouT]

Johnny,

I just finished responding to your first posting in "Introduce Yourself".  There I asked for more details which you've provided here.  The needle biopsy is the real indicator of whether or not you are dealing with cancer.  The PET and MRI are to determine the extent of the cancer, (e.g., could there be brain mets).  At this point you're still in the diagnostic stage (which we all find to be long), but once you have a treatment plan things will feel better.

Telling your family is such a personal matter I hesitate to provide any counsel on it.  For my part, I waited until I had a diagnosis and then shared it with my children (except one daughter), and family.  My wife was already ill and not capable of understanding the situation.  You know your family best and next week sure is close so you need to think about what you want the family to know.  I will say it is good to have support at a time like this.  In my case the daughter living close to me is the one who went through the diagnostic process with early on.  

Please keep us updated as you go through this process.  There is a lot of information to share with you if you receive a final diagnosis of LC.

Lou

[Johnny]

Lou,

Thank you!! 🙂

[BridgetO]

HiJohnny,  I'm a survivor of three primary cancers. I don't have any living close family except my wife (and her mom and sisters). I've been open with people I know from the time I was being diagnosed. I've found that being matter of fact about it makes it easier for others. Cancer, especially lung cancer has a bad reputation. So far as it being an illness, and a hard one, that rep is justified. But there's also a stigma, for lung cancer especially. I think that talking about it helps demystify it and helps reduce the stigma.

My mother, who wasn't a role model for me in a lot of things, was  a role model in sharing and being matter of fact about cancer--she had two of them. Her openness about this helped me be less fearful and anxious about my own cancers. It seems to me that illnesses that are hidden or secret can create more stress for the patient and for loved ones

I know that all families are not alike .  I know someone who went to great lengths to hide her cancer from her mom, who was ill and fragile. She went so far as to get a hairstyle that could be easily duplicated and then got a wig that duplicated it to wear when her hair fell out from chemo.  So I understand that all families are not alike and we each do what we need to do  and who and when to tell what is a personal matter.

All the best to you in dealing with your cancer and your family.

[RJN]

Hi Johnny,

Sorry to hear you are going through this. For what it is worth, it will probably be the mentally toughest part of the ordeal. Once you have a diagnosis and have shared with those who need to know, you can move on to the “action” part. As you will see in this forum, lung cancer need not be a downhill spiral. Many do really well on modern treatments.

Only you will know who to share with. I have a very big circle of friends and family, so  I split mine into a few different groups: 1. Close friends who I told immediately as I needed their support 2. My dad who I told when docs were fairly certain, but before final results (he is a doctor so knew he would want to be part of the process) 3. After diagnosis and once I knew my treatment plan I talked to remainder of my close family and friends, as I wanted to be able to tell them with a clear plan, so they didn’t have to wait and worry 4. Everyone else (personal contacts) - made a Facebook post. It made it easier for everyone to know, and not be the subject of rumours and misinformation. And 5. Work network, only some people know, as and when it feels necessary. I think most of my network know now, but as it has been almost 2 years and I have seen most people in person, there is no longer much shock and drama…

Personally, I think it was a balance between my need for support, but also not having to carry other people’s worry and grief. But it did help me having a bit of a strategy (this is what I do for work, so guess it is ingrained).

All the best, Rikke

 

[Tom Galli]

Welcome Johnny,

You've already received cogent advice about treatment and family involvement from some of our very knowledgeable members. At this junction, my only suggestion is if I can live, so can you!

Stay the course.

Tom