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drewsauntbecki

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I'm sorry to have to post to a message board, but am searching for answers. My nephew is almost 17 and was just diagnosed with a tumor in his lung. They first thought it was a pulled muscle, then pneumonia, then a pulmonary embolism. Yesterday they did a PET scan and confirmed it is a tumor. He is scheduled to have it and the lung removed on Wednesday. We are all so scared. He has baseball scouts watching him for college. I can find nothing to read that pertains to someone his age. He is otherwise a healthy, non smoking teenager. It's been an awful few days for us. Any guidance or suggestions would be appreciated.

thanks,

Becki

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I am certainly no doctor...but for a 17 year old to have a malignancy in his lung seems terribly unlikely to me. Far more likely to be something benign, I would think.

I will hope that that turns out to be the case. PET scans are NOT infallible....and there can be false positive readings. Malignancies are not the only things that light up on a PET.

Before I did anything else...I would get a second opinion. Was the tumor in his lung biopsied? If not, why not? I would think a second opinion is more than warranted here...and I would get copies of his PET and any xrays or other pertinent info to take to another doctor for an opinion.

I'm sorry your family is going through this...but before allowing the lung of a 17 year old to be removed, perhaps forever changing his future....I would get a second, if not a third opinion!!

Best of luck to you all...and please come back and let us know what happened!!

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We do have a member who had a lung removed some thirty years ago or so who was 20 or so when his tumor was removed. And he races bicycles with his one lung. So while this is scary, if it can be removed, your nephew could and should live a long and minimally impacted life. Keep us posted.

Curtis

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Hi, Becki. Our own David P. was diagnosed with lung cancer in his 20's, as Curtis said. He had a lung removed and has been bicycle racing ever since, even now. Hopefully, he will see your post and respond. Also, it is not definitely cancer until a biopsy is performed on the tumor to confirm. Good luck. Don

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Becki,

I know a lot more about kids/teens fighting cancer than I know about adults, or at least that was true until my brother was diagnosed and I came to be a part of this community. So I hope I can be of some help to you.

Can I ask where your nephew is being treated? It's a VERY important question in his case especially. Many teenagers are not seen by pediatric oncologists because they seem so close to adulthood. But studies show much higher survival rates for teens who are treated by a member of the Children's Oncology Group (a collaborative research group, with members at over 230 institutions across the US, Canada and some other countries). Sorry for sounding like an ad, but I used to work with this group and can personally vouch for the seriousness of this. I've been involved with cancer in children and teens for over 7 years now.

I'm a fundraiser, not a doctor, but I'm wondering if there's a possibility that he has another type of cancer that is difficult to diagnose and it has spread to his lung? Since childhood cancer (ages 0-21 or so) is so much more rare, it IS often harder to diagnose, especially if he hasn't been seen by a pediatric oncologist. The types of cancer kids -- including teens! -- get and the treatments they need are just so very different.

Please feel free to send me a PM (private message) if I can be of any help. Here is the website page where you can find the list of medical institutions that are part of the COG:

http://www.curesearch.org/aboutus/research/cog/

If your nephew has already seen one of these specialists, that's terrific. If not, I think it's really, really important that he get at least a 2nd opinion from one of these places before the surgery, even if it means a trip to get to one. And many doctors don't KNOW to refer teens for this kind of care and think they can do just as good a job...

I'm sending you a PM with my phone number, in case you want to call. My heart goes out to your nephew and your family, and I hope he will come through this with flying colors, and quickly!

BeckyCW

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Hello, David P could help you a lot. We recently had a teenager with lung cancer from Ireland , sorry to say he died. In our local support group here in Minnesota we had a never smoker, 26 yr old diagnosed with Mesothilioma, she had a lung , her diaphram , etc removed about 3 yrs ago and is Ned ( No evidence of disease) Sorry to say teens and other young people do get lung cancer , thank goodness they are in much smaller numbers. Please keep us posted. Donna G

PS Look under MY STORY , David P has written his story there.

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Hi Becki and WELCOME to our family. I am so sorry to hear that you have to face this fear with such a young man. BeckyCW has given you some excellent advice, as well as everyone else. Are his parents living and coping ok with this? What about brothers and sisters? Please know that we really care a lot here and will help you and your nephew, and the rest of his family if they want to join us, in any way that we can. Please keep us posted on his progress.

God bless you,

Peggy

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Becki,

You have been directed to the right sources so I am just going to add you to my prayers... a lot. please keep us posted. I am so sorry that a seventeen year old even has to think about this.

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Becki-

I am so sorry! Good luck Wednesday!

When I was first diagnosised I went to the bookstore and there are some wonderful books and lung cancer there, that take you from diagnosis all the way through treatment. They are packed full of information and have helped to educate me, answer questions and understand other peoples diagnosis.

Be strong, pray and get educated!

Good Luck, your family is in my thoughts!

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Welcome Becki! Sorry to hear about your nephew. I hope it isn't cancer.

Many years ago, they thought my dad had lung cancer. They were not able to biopsy him due to the location. So they opened him up. What they found was not cancer even though it looked like it--they were like 95% sure that it was. It turned out to be a bacterial infection called myobacterium avium complex. He is still fighting that disease and turned 83 this year.

Hoping and praying it isn't cancer. If it is cancer, praying they can get it all. Take care and keep us posted. I will be saying extra prayers on Wed.

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Becki,

My opinion on your brother's age and a "spot" on his lung. Testicular cancer mets to the lung (as do others). I would think at his age, someone would be looking to see if this "thing" in his lung would be a primary or secondary sort of deal... Lance Armstrong had testicular cancer that spread to lung, brain and bone...

Here's hoping it's nothing,

Becky

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I agree with BeckyCW. You need to get another opinion before you have surgery. It may be that they were not able to biopsy but I would sure ask that question. He is awfully young to have this problem. If indeed it is lung cancer he responds like David P and goes on with a very active life for many, many years.

I am sorry you had to come searching for answers to such a dreadful question but I want to welcome you to a group of very loving and caring people. Let us know how things go.

Nina

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i'm so sorry to hear about your nephew, but i definitely agree on getting a second opinion before surgery. doctors are not always 100% sure about things, so getting another opinion may help, especially in a situation like this. my thoughts are with you and your nephew/family. please take care.

God bless,

mj

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Becki,

Please don't apologize for posting--that's why we are here!!!

I am so sorry to read about your nephew; whatever this ends up being, it is certainly terrifying for all of you right now.

I can't offer any advice that has not already been proffered by the wonderful people above. I do want to chime in on the importance of getting a second opinion, however.

My thoughts and prayers are with you and your family.

Melinda

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Becki,

So sorry to hear about this! We are all here for you if and when you need us... Im also sorry to have to welcome you to the board, wish you wouldnt have to be here.. but welcome none the less. Keep us updated OK?

Jamie

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Thank you all for our kind words and prayers. My sister in law has a friend whose dad retired from U of Michigan and they are taking him and his test results up there tomorrow. They've postponed surgery until then, but he says it sounds like they've done as much testing as possible under the circumstances. She and her family went to church on Sunday and left feeling a little more comforted. Her mom, my former mother in law, lives in NY and I drove up to get her and bring her here on Sunday. As you can probably tell, I am very close to my former in laws. They always tell me that even though her son left me, they didn't. It's a little odd for my new husband, but I really have no family of my own since my mom passed away in Feb.

Anyway, thanks again for everyone's support and prayers. I will keep you posted on what they say in Michigan.

God Bless,

Becki

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Hi Becki.

Sorry for not replying sooner -- I normally do my message board work later in the evening when my family is in bed, but lately with my training intensifying as my next race approaches, I have been getting to bed quite early. But I am now going to lighter workouts and find myself with more time.

I'm saddened to hear about your nephew. It brings back so many vivid memories. But all is not necessarily lost. If the operation is going ahead, there are three things that could work in your nephew's favor: his age and good physical condition;

the fact they are removing the entire lung; and finally, a must for success -- your nephew MUST have a super positive, "I can do anything, nothing is going to keep me down" attitude throughout the entire ordeal. He can most definitely still be a Major League player.

I'll reply to your PM. Take care,

David P.

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Hi Becki, So sorry to hear about your nephew. I can't add much to what the others have eloquently said I'm afraid, however I do send all the family, especially your nephew, prayers and positive thoughts. Paddy

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