Inoperable Metastasis to Mediastinum, Pleural invasion, what's next? Why can't I find prognosis on line?

[PamHB1]

Hi  I'm 56 years old, former heavy smoker and 6 months ago I was diagnosed Stage IIIB Lung Cancer, a mass in LUL and one in the Mediastinum with lymph node involvement  Post chemo and immunotherapy, 70% shrunk, yay!  8 more weeks of daily radiation and weekly aggressive chemo and the LUL shrunk more and the one in my chest looked to be gone, lymph nodes - negative.  Surgery found the mediastinal tumor invaded the pleura and organs throughout the L Hilar, with pleural invasion.  reportedly the tissue was "too hard" to cut through.  Surgery was aborted nothing was removed and so far no pathology report taken either.

Did the surgeon just say, hey, she's dead already?

What does a "frozen Mediastinum" mean (I understand the tissues are hardened - but by what, and why can't it be removed?)

Am I dead? -- The internet is not optimistic.

Even more pressing, what if anything do I tell my 16 year old daughter who is o optimistic,, when all I can see is poor prognosis?  

How do get the will and get healthy enough to love for her??

I'm pretty devastated and not sure who to talk to,,, Can this forum help?

[LouT]

Pam,

Welcome to our forum.  I'm sorry you need to be here though.  Okay, you have a serious diagnosis and at the same time you seem to be responding to treatment in a positive way, but some tumor(s) are inoperable.  But, it appears that your treatments are working to reduce those tumors to the point of the one in your chest appears to be gone.  The best person/people to ask about prognosis is your medical team and particularly your team lead (oncologist, PCP, whichever).  Having said that, we do have quite a few people here diagnosed at Stage 3 who have responded to treatment and continue to survive.  Many times the cancer is treated like other chronic diseases rather than a definitive death sentence that it once was.  You've already been through the diagnostics and many treatments so some of what I normally share with a newcomer would be superfluous here.  But I can assure you that you will be hearing from others who have situations similar to yours and their stories and experiences will give you more hope about a brighter future.  When anyone looks at the "survival stats" online they are terrible.  But, you have to remember that those stats are five-year averages and don't take into account the new treatments and options available so they are skewed to the negative.  As I said, your team can provide a more balanced view of your prognosis based on your specific situation, response to treatment and overall general health.  I sure can appreciate the feelings you are experiencing though.  It is devastating to hear that we have this disease.  Everyone on this site (including me) has gone through it.  The most I can tell you is take that will to live and live.  I once carried around a pretty dark cloud (regardless of my treatment) but while I understand the dangers of this disease I choose to live each day and appreciate what I have and can do.  I hope you can do the same.  But, if you do find yourself falling into depression, please seek professional help.  Many of us have used it and frankly it can be a Godsend.  You'll be in my prayers and stay tuned; others will share their experiences soon.

Lou

[Tom Galli]

Pam,

Welcome here.

I also had a surgical struggle. While there was a successful resection of my right lung, pre-surgical radiation complicated suture healing and sutures on my bronchus stump ruptured--twice. Then after 2 more radical surgeries to restore sutures and 3 stent placements, I suffered a recurrence in my left (remaining) lung--3 tumors. This was in 2004, well before the introduction of targeted therapy and immunotherapy, and I was treated by many applications of taxol and carboplatin. The lung tumors would wane then wax, and I was on death's door. I completely understand your quest for searching for optimism. I was diagnosed at 53 and I found myself challenged to manage my daughter's despondency.

My treatment began nearly 18 years ago. A newly approved FDA procedure to allow CyberKnife precision radiation for lung tumors saved my life. I was lucky.

Part of my good fortune was my broadminded medical oncologist. When my wife pointed out the article on CyberKnife approval in Cure Magazine, my medical oncologist dialed up a radiation oncologist for an immediate consultation. I suggest you consult with a radiation oncologist. Curative radiation techniques and procedures have progressed to the point that precision radiation for multi-focal (many tumors) is becoming common place. 

We are all pretty devastated. We all understand why. Most of us faced poor prognosis, and you've found a home.

Stay the course.

Tom

[Judy M2]

I was also Stage IIIB, diagnosed in October 2019. I wasn't a candidate for surgery, so I underwent chemo and radiation. After that I started a targeted therapy for my EGFR genetic mutation. In April 2021, my PET scan showed No Evidence of Disease, and I'm living a normal life. 

So, like many Stage IIIB patients, surgery is not for you. But radiation may be an option at some point. I agree that you should discuss all your options with your medical team. It does sound like you've responded to treatment so far. Cruel comments like your surgeon made are not helpful for your mindset. When I was diagnosed, my doctor said that lung cancer isn't a death sentence anymore. 

Bear in mind that Dr. Google has not kept up with improved treatment outcomes. And remember, we are individuals, not statistics!

Perhaps your oncologist might have counseling available. If they do, it would be great to embrace it. It helps to learn how to thrive in spite of our disease. This community is a good resource for support too. Stay with us! 

[Susan Cornett]

Pam - I don't have much to offer in addition to what Lou, Tom and Judy have told you but I would emphasize this: don't go to Google for stats. 

It sounds very promising that your cancer has reacted to the treatments thus far. It's not unusual for late-stage patients to be ineligible for surgery but we have so many more options than we did when I was diagnosed 6 years ago. We've all been on the emotional roller coaster so we understand where you are. Don't hesitate to reach out at any time whether it's to vent, ask questions, or whatever you need.

[DMiller]

Hi Pam, the feelings your having are normal, trust me, I am right there with you. I was diagnosed at 55 years old almost a year ago January 14, 2021 stage 4b inoperable LC EGFR mutation. Not gonna lie, it was a rough year. I've had gamma knife on my brain mets, 20 rounds of radiation on my sacrum and femur, 6 rounds of chemo and now I'm on a TKI. Honestly, if I didn't know I have cancer, I wouldn't know I have cancer. Life is pretty normal right now. I'm still working, never really stopped. But, husband and I have started planning some retirement shenanigan's. YAY! 

I have 2 kids a son who's 28 and a 23 year old daughter. They were both optimistic from the start and still are. It's better for them that way and honestly no reason why they shouldn't be optimistic, I'm not a statistic and neither are you.  I tell my kids only the facts I get directly from my Dr. I also tell them not to google anything about cancer. I don't talk about the what if's or statistics, only information I get from my Dr. Then I try to get back to being good ole mom. There is a lot of hope for us these days with immunotherapy, TKI's and new treatments in the pipeline. I know things are terrible right now but it sounds like your responding well to treatments, keep it up. I will be praying for you and your family. Stay positive, you can do this!