Linking you to resources and support in the lung cancer community!
The beginning of my journey
SourceURL:file://localhost/Users/kathy/Desktop/Let%20me%20introduce%20myself.doc
Let me introduce myself. In early January 2012, I was undergoing tests for clearance for hip replacement surgery. Everything was fine (bloods, stress test, blood pressure, etc.). When I went for my chest x-ray, they discovered a "suspicious" nodule in my left lung. That's where my saga begins. I had a CT scan which showed that the nodule might be malignant and there was a shadow on my adrenal gland.
Next came the PET scan. "Activity" in the one nodule in the left lung, the left adrenal gland and lymph nodes. The other nodules in the lung showed no uptake. The report says that the findings are "consistent with metastatic lung cancer." These were not words the doctor used when he gave me the report over the phone. The doctor wanted to have an adrenal gland needle biopsy done, but they couldn't perform it when I went for the appointment because of the position of the gland relative to my lung (they didn't want to go through the lung to get to the adrenal gland).
So now I am waiting to have a bronchoscopy done (Feb. 14). I should get the results by the end of next week. To say that I am in a panic is putting it mildly, as you can imagine. It appears to me that we are moving in the direction of State IV lung cancer (because of metastases) and I am terrified beyond belief.
I live in New York City and these various tests are being done at Mt. Sinai hospital. Once I get the biopsy results (and probably talk to an oncologist), I want to get a second opinion at Sloan Kettering.
I am overwhelmed by the amount of information that I find on the web (most of which is depressing).
My (first!) question for the group is: Have any of you out there had experiences at either Mount Sinai or Sloan Kettering? This is especially important since it looks as if I won't be able to have surgery. The pioneering VATS "guru," Dr. Raja Flores, used to be at Sloan but who is now at Sinai.
So here I sit, waiting and worrying. Any advice you could offer about your early experiences would be appreciated.
Kathy
Views: 234
Replies to This Discussion
-
Permalink Reply by John H MOD on -
Hi Kathy, I am a 12 yr survivor of stage 3A non small cell lung cancer ( NSCLC). I can tell you first that don't believe everything you read on the Internet. The statistics aren't great but everyone is different and react to treatment differently. They haven't cured cancer like the haven't cured the common cold. But not everyone has a cold gets to pneumonia.
We have people here and ones I know personally who are long term survivors of even stage 4. I think we are a little ahead of ourselves here.
Take a deep breath and slow down. Until you have all the tests completed they would be just guessing , an educated guess but still a guess. As you go along this early journey you will need a super human amount of patience. You want the news fast but the medical community as a whole don't work that way. So please come here often, we have all been or are where you are and we will understand , the nerves, the sadness, the anger, the why me's as I said we all understand. Here you can voice whatever you want and someone will hear you.
The next month or so will be quite tiring so get as much rest as you can when you can. As you go on we can give you some tips, anecdotes, information and even some humor. You have just joined our family, Welcome.
One foot in front of the other and one day at a time ,you will get through this.
Again welcome,
John
-
Permalink Reply by AmyLCA on -
Hi Kathy,
It's so hard to be in the midst of the diagnosis and having to deal with so many unknowns. I think for a lot of people, that truly is one of the hardest parts.
Mount Sinai is a good cancer center. It is accredited by the American College of Surgeons Commission on Cancer, which has good solid criteria. They also have a lung cancer multidisciplinary team. The main difference between Mt. Sinai and MSK is that MSK is an NCI-designated Comprehensive Cancer Center. It's a different level of accreditation where a substantial weight is put on research and clinical trials along with patient care.
I have heard good things about both. I have heard sometimes people feel like MSK is so big that they get lost in the shuffle, but I've also heard people who have been 100% satisfied with their care and recommend it to everyone they know. I have not heard personally from anyone treated at Mt. Sinai.
I think they are solid centers to get first and second opinions from. You might end up choosing based on who you feel most comfortable with and you also might find that they may recommend similar approaches.
As an aside, both of them also have lung cancer support groups. You can find the contact information by scrolling down here: http://www.lungcanceralliance.org/get-help-and-support/coping-with-...
If you'd like "non-overwhelming" information, let me know. I can email you privately and get your mailing address and send you our information packet. But yes, there is a lot of overwhelming information out there. Hopefully connecting with other survivors will help.
Keep us posted on how things go.
Amy
-
Permalink Reply by Easylife on -
Hi Kathy .........i went from a stage 4 lung cancer to cancer free today my metastatic lesion and biopsy of the lesion showed adenocarcinoma and this start in 1994 .............you can fine more about me in my facebook under tahamoukite@yahoo.com .
-
Permalink Reply by Rich on -
I have been living with lung cancer for 8 years.
Each year of the anniversary of my diagnosis, I write a letter to my family and friends about hope and my life with cancer. The purpose of my letters is for my loved ones to appreciate every precious day of life. I also want everyone to know that living with cancer is different but can also be loving, wonderful and beautiful.
I am considering composing a book comprised of letters cancer patients wrote (or are writing) to family and friends during their journey with cancer. Hopefully some patients wrote these letters over a few years. These letters can be from survivors or people who eventually lost their battles. The patients can have any type of cancer not just lung.
Happy to speak with you off line if interested in contributing. Also please feel free to pass this message on to others. Thank you!! Richard
© 2013 Created by AmyLCA.
