terminal lung cancer with no cancer in the lung

stevareno · New User Joined: 14 Aug 2009 Posts: 2

My mother was diagnosed with stage 4 lung cancer back in November of last year. She immediately received a poor prognosis. After 14 radiation treatments and a months supply of tarceva, she was declared cancer free. We took her to two different hospitals with two different teams of doctors who both agreed there was nothing wrong with her. We then put her in rehab to get her back on her feet but the pain in her hips was too much so we made an appointment with another doctor who found cancer in her lower spine and hips. The doctors have basically given up on her and she's signed up with hosparus. From the getgo, doctors have done nothing but convince her that death is right around the corner. To this day, she has no cancer in her organs as it's confined to her bones. We asked the doctor why there's no cancer in any other organs and he said it's slow growing and will come eventually. They told us to start with that it was very aggressive and immediate measures had to be taken. We're very confused to say the least. From my observation, the medication is taking more of a toll on her than the cancer itself.

simplyklb

Hi,
Welcome to the forum! I am sorry that you have to be here but not sorry to meet you!

Did your mom have a biopsy when she was first diagnosed? Did they do CT and PET scans?

Cancer can travel anywhere. It does not have to be in an organ.

My dad had small cell lung cancer. By the time, he was diagnosed, it was pretty advanced. It had already spread form his lung to his liver and the bones of his back.

My mom's lung cancer cancer has not spread beyond the original lung tumor and the lymph nodes along her aortic arch.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 68, diagnosed with NSCLC in May 2008
3/22/41 - 12/30/09 Fly high, Mom!

stevareno · New User Joined: 14 Aug 2009 Posts: 2

Thanks for the response simplyklb! They ran ct scans and mri's but no pet scans to my knowledge. My Mother has always lived a very healthy lifestyle. She watched what she ate, never smoked or drank, and exersized regulary. However, she has had osteoporosis. The most previous biopsy was ran when they discovered her cancer had dissappeared which was about 6 months ago. It just seems odd to me that doctors can look at a scan and determine one's fate based on scans alone. A contrasting bone scan is how they discovered the cancer in her lower spine and hips. All of her organs are functioning normally. She's just too weak to walk. My Mother just doesn't look like someone who's dying of lung cancer. I do understand that looks can be deceiving. Misdiagnoses has also been known to happen. I understand that Dr's and nurses always want to prepare a person for the worst but I think it's heartless to tell a person they're going to die very soon without first double checking everything. I'm sure mental state has a lot to do with healing. Any of us would probably die rather quickly if every dr and nurse convincingly assured us it was going to happen. I would worry myself into the grave. I'm a spiritual person and I choose to believe that only God knows when our time is up. Until then, I believe every person should be optimistic about their diagnoses. The Doctors have basically given up on my Mother even though she's still in her right mind and every organ of her body is functioning properly. She has 98% lung capacity. That's better than most healthy people. Maybe I'm just still in denial. They did tell her to begin with that she had 2 months. This was 9 months ago. BTW, she is 66 yrs old.

simplyklb

I think that it would be worth it to get another opinion on your mom. Cancer can come back in another spot. Your mom should have had a PET scan at diagnosis. Did they do a bone biopsy to confirm that it was cancer?

My mom is 68. She was 67 when she was diagnosed.

My mom's oncologist told us that he is seeing more and more nonsmokers showing up with lung cancer.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 68, diagnosed with NSCLC in May 2008
3/22/41 - 12/30/09 Fly high, Mom!

Tera · Senior User Joined: 31 Dec 2007 Posts: 297

A lot fo non-smokers get lung cancer too. It could be it isn't related to the smoking or it could be that she grew up around or lived with smokers at some time. There is no telling.

A PET scan can tell where in the body lung cancer has spread. Also, small cell lung cancer (SCLC) responds better to treatment but is more aggressive. Non-small cell lung cancer NSCLC), which is what my mom had, is slower growing but less responsive to treatment. I suspect from what you describe, your mom has small cell. My mom had osteoporosis too. Her lung cancer had spread to the adrenals, brain, and spine and bones. Those are the primary places, along with liver, that lung cancer likes to run to.

I'm sorry to hear of your mom's diagnosis. If you and she are not happy with the care she got, opinions, etc. seek second and third opinions.

dano

The question has to be asked.......Where do you live?
There is no doubt that your mom is being mistreated by very callus doctors.
A PET scan is a standard scan to make diagnoses but due to the expense may not be done in some systems. As soon as I was diagnosed with cancer having a PET scan was first on the list followed by a brain MRI, all were needed to declare that I was Stage IV. The doctors for the most part refused to say how long I would live, They said that due to my age there is no answer, the averages include a lot of people in their 80's. But even then then could not have predicted that I would be able to continue chemo treatments and work at the same time. I am sorry that your mom has to deal with bone cancer, it can be very painful from what I hear.
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymph's and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, stopped taking Lovenox for blood clots, Now working full time
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