JUST DIAGNOSED

Welcome
Welcome to a website you never hoped to visit. The folks here are great support no matter what you are facing. I looked up what a SUV number is on another webpage. It stands for standardized uptake value and apparently has to do with how much the radioactive sugar stuff they give you when you have a PET/CAT scan with contrast is taken up by the tissues in the area. They told me when I had a PET/CAT scan that cancer tissues tend to be hungry for sugar and take in more of the solution than normal tissues since cancer is actively growing. Maybe you remember eating a ton when you were a teen and growing? This is the same thing, but on a much smaller scale and definately not something to cheer about. However, it does make it possible for doctors to determine the likelihood that the mass is cancer and to map where it is, how much it may have spread, and what shape the mass is. Please understand that it isn't definately cancer until they put it under a microscope and a pathologist looks at the cells. Then and only then do they know for sure. In my case, they still had to run a week's worth of tests just to find out what kind of cancer it was. I had a history of breast cancer so they thought I had a stage 4 breast cancer. After genetic testing, they found out it was stage 1 lung cancer. That makes a difference because different kinds of cancer respond to different treatments. Either way, it had to come out to be examined. That sounds like where you are.

When you talk with your thoracic surgeon, see if he or she can do a VATS procedure. VATS means video-assisted thoracic surgery. It is like laproscopy on the lung. It makes recovery tons easier. I was actually up and jogging (SLOWLY and NOT FAR!) within a week of my VATS surgery. Regular lung surgery often requires removing a rib or two to get to the mass. That might mean pain meds for a year or more. Sometimes you don't have a choice, but if you do, go for a VATS procedure over that and a thoracic surgeon over a general surgeon. Sometimes neither procedure is indicated because they can get a biopsy another way, but that depends on where it is and the skill of the surgeon.

Lung surgery isn't minor stuff, but I had it twice back in 2006(they backed out when they thought I had stage 4 bc and had to go back in 10 days later...bigger cut and more of an owie!) and I have recovered extremely well. I just got back from the gym today where I was lifting weights today, yesterday was cardio, tomorrow is yoga. You get the picture. I am in my 50's and had small cancers that did not require chemo, but even the folks with chemo and larger tumors--even those with stage 4 cancer--get better. So don't give up hope! Find the best docs out there, follow their advice, come here for help with problems,ask those lovely nurses for more help, and hit that cancer if that is what it is with all you can. The rest is in the hands of God. Good luck!

C. Abbott

DONCARLOS said:

JUST DIAGNOSED
Great response. I already have a Toracic Dr. from Robert Woods Johnson and I will see him on Monday 6-22, I also have a Oncolologyst waiting, Your comments are of great help, however, I am much older than you and although I was never sick in my life, I am extremely upset by this. and by the way, I was never a candy eating person and my Smoking was short. I have not touched a cigarette since 1957. However I was on the stage for many years and performed in areas where and when there was no SMOKING RESTRICTION, so my second hand smoke may be high.

I confess that I am nervous but not scared. I just want to get this out of the way and these doctors take all of their time. One issue that bothers me and also my Doctors.... During a visit to the E.R. I had x rays back in January 2008 and they pointed out a mass on my right lung, however, no one remembers receiving that report. We found the report when I asked for all of my records for the last five years, so, if it was/is malignant how did it hang in there for 18 months and now it comes up at the same size as it was in 2008?????. I guess my doctor will answer that when I see him on Monday. I hope.

Thanks for your support and response.

Doncarlos.

Don Carlos
Have you found out yet what type of cancer it is? My husband is close to your age and was recently diagnosed with adenocarcinoma stage 3. He has no symptoms other than a small cough for a few weeks before I took him to the doctor. They ran x-rays and saw no cancer but said he had pneumonia. He's had a long haul since then but we are fighting this with all we have in us and I know you'll do the same.


I'm wondering how some x-rays will show a mass and some won't....odd. He also had a ct scan which did not show any cancer. We didn't actually get the official diagnosis until they drained his lung from the pneumonia.

Anyway, please keep coming back and letting us all know how you're doing. Also this is a wonderful place to ask questions from others and get lot's of emotional support.

Hang in there
Hi Don,

My dad is 69 and was diagnosed on March 22. As you might see in other posts, he has stage 4 lung cancer, 14 cm tumor, and it has spread to brain and other organs. He did radiation for the brain, and just finished his 10th weekly chemo treatment. They do scans after every 6 treatments and his showed improvement. His is termed as "incurable but somewhat treatable." He is very tired from the chemo but doing well. It is a difficult diagnosis and he (and us) had many teary moments. But we are all doing everything we can to help him and to live every day to the fullest.

Keep thinking positive, and keep up the fight. Medicine is great, and there are always miracles. And best of luck to you.

laurenr said:

Hang in there
Hi Don,

My dad is 69 and was diagnosed on March 22. As you might see in other posts, he has stage 4 lung cancer, 14 cm tumor, and it has spread to brain and other organs. He did radiation for the brain, and just finished his 10th weekly chemo treatment. They do scans after every 6 treatments and his showed improvement. His is termed as "incurable but somewhat treatable." He is very tired from the chemo but doing well. It is a difficult diagnosis and he (and us) had many teary moments. But we are all doing everything we can to help him and to live every day to the fullest.

Keep thinking positive, and keep up the fight. Medicine is great, and there are always miracles. And best of luck to you.

Hope this Helps!
DonCarlos,
Regarding the x-ray you had in 2008, please remember that Cancer cannot be definitively diagnosed by an x-ray, CT, or even a PET. These tests are all helpful, but as Cabbott mentioned, Cancer can only be diagnosed when some of the cancerous tissue is examined by a pathologist. While whoever did your first x-ray in 2008 probably should have mentioned the mass, it's not like they knew you had cancer and chose to ignore it.

Also, very often lung cancer does not present with any noticeable symptoms for a long time. When I was diagnosed with NSCLC in Dec 08, I initially went to the hospital for shortness of breath. After my CT scan, the doctors initially thought I had Tuberculosis due to a recent trip to Africa I had taken. It wasn't until several days later when they did a biopsy on the mass in my lung that they discovered it was cancer. And even after their preliminary diagnosis, it took them a week to confirm it. Furthermore, the shortness of breath that brought me into the hospital was not even the result of the cancer itself, but a result of pulmonary embolisms (blood clots) that had developed in my lungs.

The point is that the proper diagnosis and treatment takes time. While I know the agony of waiting, it does take time for doctors to do their jobs properly.

Welcome to the boards, and good luck with your continued treatments! Please let us know how everything goes!