Jump to content

Out of the Shadows


Recommended Posts

Hi everyone. I think its about time I come out of the shadows and say hi. I have been reading along for a few weeks and I cannot believe the amount of courage I have found here. You all are such strong people. I envy you all because I am missing that strength as of yet. I was wondering if anyone here has any knowledge of any testing for family members of people diagnosed with cancer, I guess like a preventative sort of thing. If anyone has any links they could share with me that would help me learn how to deal with this monster that would also be very helpful.

Nice to meet you all!

Kelly

Link to comment
Share on other sites

The only thing I have heard about as an early detection tool are CT scans and x-rays. There is a very good chance of cure when caught early, unfortunately not a majority of LC is caught in early stage as there are really no symptoms.

I know there are studies trying to find out if LC is genetic, environmental, or toxin based and although they can say all may contribute, there is no definite "WHY" anyone gets this disease.

Perhaps someone else out here has more information for you.

Good luck and WELCOME>

Link to comment
Share on other sites

Hi Kelly,

I'm glad you came out of the "shadows" - it can get pretty dark in there, and I've found there to be a lot of LIGHT on this web site. :D

I don't know of any tests either that can be done, but I sure did want to welcome you and say that we are glad you found us. I've only been a member for about 6 weeks, but have found everyone to be so helpful and friendly, and also very funny at times. The laughter has really helped me a lot.

God bless you and, again, WELCOME!!!

Peggy

Link to comment
Share on other sites

Hi,

Just wanted to say hello and welcome. I sincerely hope that there will be major funding for early detection and prevention of lung cancer in the VERY near future. I dont know if you can insist on lung, liver, bone and brain scans arbitrairly or not - insurance may not cover those tests on a "early detection" basis. I know I had a clear chest x-ray in April and a huge (small cell) tumor in my right lung in December of that same year.

It saddens me to know how little research has been done on LC comparatively speaking.

Wishing you the best.

Link to comment
Share on other sites

Hi Kelly,

My dad was recently dx'd, and as a percaution, his regular doctor, who is also mine, my husbands, and my childrens, told me that because I was a smoker for more than a few years, that when Im thirty he would like me to start getting periodical chest x rays. Im not sure if thats the norm or not. My family all goes to him, so we know him really really well. Dont know if he gives that advice to everyone or not. Hope this helps a little.

Jamie

Link to comment
Share on other sites

I don't think there are any genes identified yet. There are studies being done. There is the new gene that was discovered that is hypothesized to make Iressa work better, but there is no test yet.

The Family Lung cancer study

http://medcenter.uc.edu/news/99lunggene.ucm

http://www.mco.edu/depts/peds/lungstudy/index.html

http://www.clinicaltrials.gov/ct/show/N ... 29?order=1

http://www.wistv.com/Global/story.asp?S=1829284

There is a gene called GRPR, but I don't think it is used much

http://articles.findarticles.com/p/arti ... i_59535218

There is a new science called bioinformatics that use Gene chips or DNA arrays. Soon the genes may be discovered.

http://www.globaltechnoscan.com/21thNov ... _chips.htm

There are few genetic mutations that are associated with lung cancer. They are P53, Rb, the RAS oncogenes, and BCL-2

Link to comment
Share on other sites

Hi Kelly,I don't have an answer to that one,but I wanted to welcome you out of the shadows.Nice to see more Pittsburgers on the board.Some day we'll be able to keep up with the Michiganites and Texans and Oklahomans.Stay tuned in and let us know how your doing.

Link to comment
Share on other sites

Kelly,

Make your primary care physician totally aware of your new "family history". When you start branching from yourself and listing out cancers, you may be surprised....when the "C" word starts coming up, they start watching out for it in you more.

I was not "tested" for lung cancer, I was experiencing pneumonia when a chest x-ray picked up my tumor ("unknown mass" in my right lung). My cancer was found by random chance (I didn't win the beer truck lottery last year, but DID win another random chance drawing). No history in my family of lung cancer, just prostate cancer so I felt I (being a girl) was pretty much home free...Nope.

Talk to your doctor about your concerns. There are ways around insurance companies that aren't "fraud" - doctors ordered tests they deem necessary. In your case, your doctor may feel that way.

Can't hurt to ask...

Welcome to the family!

Becky

Link to comment
Share on other sites

Kelly, My onc was telling about his associate doing genetic DNA testing to determine if you carry the defected, mutated gene. I have heard one such gene in on the p53 gene. There are also trials going on across America attempting to boost the immune system to fight lung cancer using a vaccine made from your own cancer cells.

Good luck, keep visiting this site, You will find a wealth of information for just about any question you have.

Cheryl

Link to comment
Share on other sites

Kelly,

You have strength! Please keep posting. You will see that we really are just a bunch of funny loons who are fighting together and truly love each other like family members. You will find yourself hearing say to yourself "hey, so and so feels like that too" when either dealing with yourself or your mom!

As for screening, I just went through this with my dr. Apparently there really is no hereditary link with lung cancer. I asked him what harm there is in chest ct scans every two years besides the cost. He said radiation effects. I am honestly not sure what to make of it.

In NY my parents had yearly ch est xrays, in CA they didn't. Hard to tell if it would have caught it earlier had she gotten one. I would just ditto what everyoine says and tell your dr everything about your history. Also, be proactive, if you feel something is off, it can't get hurt to get it checked out.

How old are you? I am 31, I was just sent to a breast surgeon for cancer mgmt due to my mom's lung cancer and paternal grandmother's breast cancer and maternal grandmother's ovarian cancer. They felt around, did an ultrasound, and all was well.

I am a huge advocate of yearly exams. That is my two cents worth :)

Link to comment
Share on other sites

One interesting tidbit:

Prior to my diagnosis, I had to do a pre-employment screening. Lots involved when working in a chemical plant, I had a chest X-ray, hearing test, lung capacity test, eye test, blood test, pee test (also a drug test), etc. My pee test showed a high amount of white blood cells. Chest x-ray was clear. On the results for the urine, there was a note to follow up with my primary doctor - I asked the nurse at work what the white blood cells meant and she said that somewhere my body was fighting an infection. I followed up with my primary physician, but nothing was found...

Fast forward two years and I get pneumonia and a tumor is found in my lung. Second oncology appointment (I couldn't speak at my first one, I found out my actual stage and felt like I had been kicked in the stomach - hard), I asked the doctor how long he thought the tumor had been growing. His guess was 3-5 years. Maybe that's what the white cells meant...and another young mom on here with the same diagnosis as me had the SAME results from a urine test. There's no radiation in peeing in a cup - unless you're standing in front of the microwave...

Just a thought...

Becky

Link to comment
Share on other sites

Just wanted to thank everyone for the warm welcome. Andrea, I am 21 years old. The reason I questioned preventative testing is that there are things that have (medically) happened to me recently that are almost identical to what happened to my mom when she was my age (I wont go into detail publically yet though). I smoked for 5 years. From ages 16-20. I quit last year when I had a good opportunity (surgery). Still, I'm sure that alone puts me at some sort of risk. Snowflake, after reading your post I felt sick to my stomach. I cannot for the life of me figure out why doctors do not check things out that are blatantly suspicious. If there are an abnormally high count of white blood cells, why not find out whats causing that to happen??? I know my mom could have been diagnosed at least months before she was, she had just about every symptom lung cancer actually does cause. Before I was thrown into this living nightmare I had no idea what I wanted to do with my life. I now have some direction... I'd like to be involved with finding the cure.

Link to comment
Share on other sites

Kelly,

I was not a "candidate" for lung cancer. I had no symptoms. I don't think white blood cells in urine point to lung cancer per se, just "something" going on. I never smoked, popular belief is only smokers get lung cancer - blew THAT right out of the water. When my doctor had reason to be suspicious of SOMETHING, she sent me for more tests. Like I said, there was a chest x-ray for the employment screening, but it was clear. Lung capacity was good. When my tumor was removed (roughly 3-5 years of growth) it was less than an inch in length. It may have been visible on a CT when the pee test was "odd", but there was no reason for me to have one - and insurance frowns on unnecessary EXPENSIVE tests. Lung cancer doesn't really have blood markers, either. Blood tests showed nothing...

I still think my doctor saved my life - being a non-smoker, there was no reason to even SUSPECT lung cancer. I think she was more shocked then I was with the diagnosis (of course, I found it hard to believe at first, too). I still feel lucky, it's a perspective thing. If I play the "What If" game, there are TWO sides to every question. For example, if I say "What if it had been caught earlier?" I can also counter with "What if it had been found later?"... Second guessing is just a waste of energy...

I'm off to bed, my cheesecakes are done and I'm TIRED. I hear the household snoring and I'm missing my pillow time.

Catch ya'll in the AM!

Becky

Link to comment
Share on other sites

Cheesecakes? Do they transport through e-mail?

Kelly--please feel free to PM me if you want to talk about medical stuff and don't want to go publically yet. I will share a story with you about myself which I am not sure if it relates. When I was in my 20s something was wrong. I was in law school and I was told I was depressed b/c I was overweight and most law students are depressed.

I was convinced something was not right. I had a low grade fever constantly, my body felt off. I kept fighting the dr. They did blood work, my sed rate was high which is non specific but means something is wrong with your body. I went to every dr imaginable and had every test imaginable. There were theories of cancer to MS to lyme's disease. End result was a misdiagnosed kidney infectionand stone. The point is, unfortunately it takes a lot lot of digging and the only thing we can really do is get our yearly exams and be proactive.

Link to comment
Share on other sites

Guest Phyllis

Hi, It sounds like a John question to me. If there is genetic testing going on in a clinical trial he should be able to find it. Even with my tumors I don't have any symptoms to necessarily denote lung cancer. As the doc said they are just so much fluff on the CT for right now until they grow to a size where they spread or cause symptoms. lol

Link to comment
Share on other sites

Snowflake,

You do make a really good point. If I were an insurance company, I probably would not want unnecessary and expensive tests being ordered. Hopefully, with all the technology and advancements that are happening everyday, there will be a cure to this horrible disease as well as a definate answer as to whether or not lung or any other cancer for that matter is or can be genetic.

Link to comment
Share on other sites

You have to wonder why lung cancer is so difficult to track in the real early stages, can't feel a lump and no elevated PSA #s. Because the root cause has always thought to have been the dreaded cigarette we've been overlooked in many areas.

I was at my fittest in years, had lost 20 pounds and was still dieting, walked for at least an hour a day (mostly uphill as there is very little truly flat land to walk on in this part of Vermont) and was teaching a bone builder exercise class. I felt great, one afternoon I felt a bit like the flu was coming but it didn't last. Next day I had a bit of a pain in lower side rib cage and shortness of breath. I didn't do anything about it as I had a physical app the next morning. By the next morning I couldn't breath without great deal of pain and had to be taken to the doctor's. Long story short, xray showed pneumonia and a "mass" by the following morning I had been told it was cancer and more tests were ordered. Two weeks later I started chemo, then radiation and have been fighting fit since the effect of the treatment wore off. Stay positive, I did and I've been 'clean' for a long while.

Stay with the site, there's knowledge and support here.

Geri

Link to comment
Share on other sites

BTW - some lastest research on using PSA as a marker for prostrate cancer may be leading to a lot of uncessary treatment. I don't have the link off hand but I just read this.

The current theory is that all cancer is caused by a series of genetic mutations. I read one theory that people in families with a history of cancer *might* have a first mutation.

I don't remember to much from biology class in high school, but remember that there is only a x% chance depending on if the gene is recessive or dominant.

But family genes are only one part of the equation. Limit your environmental risk factors as much as possible. Check for radon, eat well, etc

Hopefully, they will find a gene like BCRA1 and BCRA2.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.