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Lifelong non-smoker with possible lung cancer

PBJ Austin
Posts: 346
Joined: Mar 2009

Hello all. I have never smoked, never lived with a smoker, and never worked in a place where smoking is allowed. So imagine my surprise when I discovered today that I have a 6cm mass in my lung!! They haven't done the biopsy yet but the radiologist says she's 90% confident it is indeed cancer. The only other possibility is an infection but that is unlikely since I have no fever or chills. They will do a biopsy this week.

I am so afraid, and my husband is taking this worse than I am. You all seem so brave, so how do you do it? Any advice is appreciated.

Hugs and prayers to all.

fabe's picture
fabe
Posts: 4
Joined: Jun 2009

Hi, I did smoke but long long time ago. I am 43 and went thru that. I know you are afraid. You need to be brave and stay positive.
I went thru all the test. I got Ativan from my doctor to relax me on the day of the boiopsy. I was at a lost but you know when the day comes you will have the power. Your mind is strong.
Think of all the other things in the past you manged to deal with. I am sure there were situation you though you can't even face it and then you did.
I do feel for you. becuase I know what it is like. Stay positive, stay calm and just connect with god at all times.
I had my left upper lobe removed. I had chemo. I lost a lot of weight, I lost my hair but I am still here... my diag was Oct 2008. You need love and loving people around you.
Your mind is the most poweful thing. STAY STRONG and STAY POSITIVE.
I will be praying for you... Fabe

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

the Center of the Known Universe?

:)

PBJ, being told you have cancer, being told (as your husband has been) that a loved one has cancer (or may have cancer) is like a death sentence at first. This is because, I think, all that we know coming into it is that people with cancer die.

We do not hear a lot about those who survive it, although survive it we do, more of us everyday.

PBJ, I do not ascribe to the bravery business. There are others I have met here and elsewhere that I would say are brave, especially when the news is very bad, but even then, I would say that the bottom line is this: IT IS WHAT IT IS.

You mention that you are a non-smoker and I get from that that you wonder why YOU of all people should have lung cancer. IT IS WHAT IT IS.

I have responded here recently to someone who suggested that cancer was unfair (maybe in another topic area) and my response, in essence, was that cancer is absolutely fair, if one wants to suppose that a virus can be fair or unfair (I don't believe so).

Hang around for awhile and you will catch on: cancer has no prejudice; it takes the rich, the poor, the young, the old, the health-nuts, the beef-eaters, the abstainers, the alcholics, the sane and the insane, men and women, straight and not so straight, black and white and all shades in between, every religion and even those of us without religion.

Do not spend time asking why, PBJ. Spend time asking HOW...how am I going to beat this little bug, both physically and mentally.

Physically, it is going to have its way PBJ. It will. Your doctors will do their best to help with that, and I am confident that with your help via attitude and will, they will reduce its physical impact. It is up to you, and up to hub, to make sure it doesn't get more than it is genetically predisposed to get: it is NOT designed to mess with our minds. We do that on our own :).

Call it bravery, call it practicality. IT IS WHAT IT IS. And we deal with it or we do not.

That is up to us, and cancer has nothing, absolutely nothing, to do with our decision. That is all up to us.

Best wishes to you and you husband and your family. Based on hub's reaction, I have a strong feeling that he will be an excellent caregiver, an excellent supporter for you, PBJ. Please remember that his job is really going to be harder than yours, even if neither of you believe that now.

Hope and Humor!

Take care,

Joe

PBJ Austin
Posts: 346
Joined: Mar 2009

Thank you so much for your kind replies. I hope it didn't sound like I think this shouldn't be happening to me for being a non-smoker. I only meant that it adds greatly to the shock of hearing this news. I certainly do not wish this on anyone, smoker or not.

I will try my best to follow your advice and to stay optimistic and upbeat. I appreciate your comments and if anyone has more to add, your words of wisdom are most welcome.

ladybug52
Posts: 41
Joined: Jun 2006

my prayers are with you. I smoked about 31 years ago, but I live in the Ohio Valley, where there are a lot of chemical plants. The exhaust fumes that come from there. In Doing test down at the hospital for something else, came up with two nodules in base of left lung.

I have been coughing a lot lately, I am just back from the hospital had a chest ex-ray done, my doctor will have the results in two days.

I am a colon cancer survivor, my sister just passed away this past may with ovarian cancer.
I am getting nervous.

Ladybug

looch969
Posts: 27
Joined: Jun 2009

So Sorry about your news, I was also shocked and it still feels like a bad dream to me. I beleive we probably all show our emotions differently. I am also very afraid but it won't help me to constantly think about it, its not going to change anything. I hope that talking to others and finding out what has worked for them will work for me. My husband is also taking my news really bad, I kid with him all the time but he doesnt always get my humor.

Please let me know how your biopsy goes and what treatment they will be using on you?

Ill be praying for you.

Tamie

PBJ Austin
Posts: 346
Joined: Mar 2009

The biopsy has been scheduled for Thursday, June 25, then it will be 5-7 business days until the lab results come back. I will definitely give you an update as soon as I know something.

I joined this board a few months ago when my kid sister was diagnosed w/brain cancer. At that time I never would have believed I would need your support for my own possible illness as well. I am so glad I found this board, you all have given me so much hope for both my sister and for myself. You are all in my thoughts and prayers.

cabbott
Posts: 1046
Joined: Aug 2006

I am a non-smoker too. As an educator, I preach to the kids frequently not to smoke. You know the speech: 9 out of 10 cases of lung cancer are caused by smoking. Guess what! I'm the 1 out of 10. Some studies say that it is closer to 2 out of 10 cases of lung cancer happen to non-smokers. Does that mean you should have gone ahead and lit up? Of course not! Friends that I know that were diagnosed with lung cancer had to quit smoking so that they could breathe, a difficult task at any time, but even worse when you are stressed out with a cancer diagnosis. If you have been doing things to stay healthy (eating right, exercising, seeing your doctor and so forth) you are probably in better shape to weather whatever it takes to beat the beast. I hope that your biopsy shows that all you have is a lousy infection easily cleared up with some antibiotics or other meds. But if it is lung cancer, know that Joe is right. It is what it is. Spend your time figuring out what you can do now. I have been very lucky. I was diagnosed with breast cancer in 2002. Major surgery took care of that one. Then in 2006 I had a shadow on an chest Xray. They thought I had stage 4 breast cancer in my lung after my first lung operation. Further testing indicated that I had stage 1A lung cancer. More surgery took care of that one. Major surgery isn't fun or easy, but this morning I was at the gym lifting weights. Then I ran around Vacation Bible School with 15 hyper 3rd graders. Finally I worked around the house all afternoon. Now I'm about to go for a mile walk at the park. I'm missing some tissues here and there, but you'd never know it. It took awhile to get my energy back. Folks who have chemo take longer to recover. Also I was lucky enough to have a surgeon who knew how to do VATS procedures (like laprscopy on the lungs). But even folks I've met with regular surgery and major chemo routines often recover. So don't give up hope! It isn't cancer till the pathologist says it is. And then it is only some crazy cells that need medical treatment and you just do what it takes, one day at a time. Good luck!

C. Abbott

cabbott
Posts: 1046
Joined: Aug 2006

I am a non-smoker too. As an educator, I preach to the kids frequently not to smoke. You know the speech: 9 out of 10 cases of lung cancer are caused by smoking. Guess what! I'm the 1 out of 10. Some studies say that it is closer to 2 out of 10 cases of lung cancer happen to non-smokers. Does that mean you should have gone ahead and lit up? Of course not! Friends that I know that were diagnosed with lung cancer had to quit smoking so that they could breathe, a difficult task at any time, but even worse when you are stressed out with a cancer diagnosis. If you have been doing things to stay healthy (eating right, exercising, seeing your doctor and so forth) you are probably in better shape to weather whatever it takes to beat the beast. I hope that your biopsy shows that all you have is a lousy infection easily cleared up with some antibiotics or other meds. But if it is lung cancer, know that Joe is right. It is what it is. Spend your time figuring out what you can do now. I have been very lucky. I was diagnosed with breast cancer in 2002. Major surgery took care of that one. Then in 2006 I had a shadow on an chest Xray. They thought I had stage 4 breast cancer in my lung after my first lung operation. Further testing indicated that I had stage 1A lung cancer. More surgery took care of that one. Major surgery isn't fun or easy, but this morning I was at the gym lifting weights. Then I ran around Vacation Bible School with 15 hyper 3rd graders. Finally I worked around the house all afternoon. Now I'm about to go for a mile walk at the park. I'm missing some tissues here and there, but you'd never know it. It took awhile to get my energy back. Folks who have chemo take longer to recover. Also I was lucky enough to have a surgeon who knew how to do VATS procedures (like laprscopy on the lungs). But even folks I've met with regular surgery and major chemo routines recover. So don't give up hope! It isn't cancer till the pathologist says it is. And then it is only some crazy cells that need medical treatment and you just do what it takes, one day at a time. Good luck!

C. Abbott

PBJ Austin
Posts: 346
Joined: Mar 2009

Thank you Cabbott. This has been unbelievably hard for me and even worse for my husband. But having people to talk with on this forum does help.

PBJ Austin
Posts: 346
Joined: Mar 2009

I had my biopsy yesterday and it wasn't as painful as I expected. As some of you know, the process is to extract samples from my lung via needle then give the sample directly to the pathologist, then s/he will determine if the sample is sufficient for testing. They kept coming back for more samples and finally a tech told me they keep getting nothing but "snot." (those were his words, not mine) Finally I heard the doctor say he got a good one this time, meaning he finally got a good sample. I presume that means he got something other than mucus.

I am trying not to read too much into this and it will be 5-7 business days before test results come back. I was wondering if anyone else had this same experience in your biposies?

Thanks and as always, blessings to you all.

PBJ Austin
Posts: 346
Joined: Mar 2009

UPDATE: I heard from the hospital today and they told me the biopsy results were inconclusive as the sample was inadequate. They did not find any cancer cells but they did not find any cells to indicate what is going on either. She said to call my primary care physician on Monday and determine further testing and treatment.

cabbott
Posts: 1046
Joined: Aug 2006

Dear PBJ Austin,

Thanks for the update! Did you get a copy of your report? It is time to start collecting those reports in a 3 ring binder so you have a record of what was done when and what they found. So far it almost sounds like good news. They haven't diagnosed cancer. However, if they are getting "snot" it sounds like they need to keep doing some tests. You may have an infection that needs some serious treatment. Or you may have the "c" that causes an infection not to clear up and they just haven't found the right tissue yet. I was not happy when I was first diagnosed with breast cancer in 2002. Alright, "not happy" is a gross understatement. I cried several times a day for weeks and couldn't sleep, couldn't enjoy anything, didn't feel like I would live...I was miserable! By 2006 when I was diagnosed with lung cancer I was emotionally in a totally different spot. I was actually tear-free and joking with the surgeon when he called to tell me that I had to have more surgery because the tumor tested stage 1 lung cancer rather than stage 4 breast cancer. (I lived 100 miles from the hospital so it had to be by phone. Also, it was 9 o'clock at night because he had had surgery all day and bedtime was the soonest he could get to a phone.)It wasn't because my odds were better. There are many drugs that are fairly successful on stage 4 breast cancer and my odds were about the same in terms of survival. It was just that then I knew that finding the "beast" is better than not finding it when it is there. Then you can fight the enemy. When you don't know where it is or what it is, the enemy can keep attacking without anything stopping it. Also, I knew he didn't enjoy giving me the news that I needed more surgery. My biopsy had not been the sort with a needle. I had had a VATS procedure to remove the nodule which was to be followed by whatever surgery was needed to remove the lung lobe or lobes if it was obviously lung cancer. Sometimes they just can't tell and with my luck, I had the kind of lung cancer that looks the same under a microscope as the kind of breast cancer I had previously. Reading a lot beforehand gave me nightmares, but it also prepared me more than my surgeon expected which is why I was just shaking my head and not cussing the poor guy out when he called me with the news. Anyhow, I hope you can get in to your physician and find out what tests will be needed to clear up what you have and what can be done about it. Be aggressive so that you are sure you are getting the treatment you need. Then you can rest easy knowing you have done all you could. I hope you have a thoracic lung cancer specialist at a university teaching hospital or lung cancer clinic that is working with you. If not, now may be the time to ask your primary for a referral to one. Seeing one doesn't mean you have lung cancer. They test you for everything else and know more about lung diseases and tests on the lung than other doctors could possibly know. Good luck!

C. Abbott

PBJ Austin
Posts: 346
Joined: Mar 2009

The biopsy they did last week didn't reveal much. They didn't find cancer cells but the sample was inadequate for cancer testing so they are doing a second biopsy on Monday. This time it will not be a needle biopsy like the last one, instead they will send a tube through my nose and into my lung.

Has anyone else had this type of biopsy? How long was your recovery and how bad was the pain? Also, did anyone else have a lot of dead tissue in your sample?

They are still testing for fungus or infection, but those results will take 6 weeks since the cultures grow very slowly. I hate this waiting but I'm doing the best I can.

Thanks in advance for your help, I appreciate all input.

Jager's picture
Jager
Posts: 32
Joined: Jun 2009

I did get a broncoscophy (don´t know if the right word in English) but the same as the one that you are going to have.
I spend only 4 hours at hospital and felt nothing, I was sleeping and when recovered I walked back home. No soars and no damage to my throat neither to my nose or lungs.

Don´t worry, it is not a dangerous one and it is the best way to get samples and get an accurate diagnosis.

Best luck mate.

Cheers

Mario

PBJ Austin
Posts: 346
Joined: Mar 2009

That's a relief, I was worried this would knock me down for a few days.

Thank you for posting and I love your pic, the baby is adorable. :-)

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I had a bronchoscopy, too, and it's just as Mario said, it's a very easy procedure; it will be over in the blink of an eye for you and leave no pain behind, the best kind of procedure :)

PBJ Austin
Posts: 346
Joined: Mar 2009

I'm glad to hear another person say the procedure isn't too bad.

Did anyone else have my experience with the needle biopsy, where they only got dead tissue? They did several draws but never got any cells they could test for cancer.

PBJ Austin
Posts: 346
Joined: Mar 2009

I just wanted to give you all an update on my broncoscopy. The procedure went well and evidently this time they got something they could test. They found nothing but dead tissue and inflammation with no cancer cells. There is still no definite word on what is this mass, but the doctor thinks infection is a good possibility. I'm on some heavy-duty antibiotics and I will be seeing the doctor again in 2 weeks for another X-Ray.

I would like to thank you all from the heart for your kind words and advice. You all are forever in my prayers.

cabbott
Posts: 1046
Joined: Aug 2006

YEAAAHHHH! Your post is a good reminder that it isn't cancer until the pathologist sees it under the microscope. Take your meds just as prescribed and call the doctor if you have any side effects or concerns. I hope the meds knock your infection out pronto!

C. Abbott

MarkHongKong's picture
MarkHongKong
Posts: 5
Joined: Jul 2009

Hi PBJ

I'm very interested in your follow up - I'm in a very similar situation to you.

I'm 37, non-smoker and was diagnosed with NSCLC in my left lung and active lymph nodes in the mediastinum a month ago today. I had a bronchoscopy that showed a lot of imflammation and mucous and subsequently had a CT-guided biopsy. I had 3 samples taken from the mass they found but all 3 samples came back as negative.

However, the next day I had a PET scan which showed hyper-metabolic activity in the mass (SUV 12) and the lymph nodes (ranging from 2 to 5). I was subsequently told I had stage 4 adenocarcinoma of the lung left with lymphangitis. I was told I had a few weeks to live. I was told to go home and enjoy the sunset - to give up and die. I'm never going to give up.

I had a second opinion a week later and was told by the oncologist that he didn't believe I had lymphangitis and that my staging was most likely 3b, potentially 3a if the one lymph node (of the 5 active ones) on the right side of my mediastinum is not cancerous. I've headed to New York (where I am currently) to seek out treatment options. I have another bronchoscopy on Monday with mediastinoscopy and EBUS (Ultrasound).

I've read that PET scans can and do sometimes provide false positive reports - whereby glucose is absorbed showing what looks to be cancerous activity when it's actually in response to infection only. The glucose uptake shows metabolic activity, not necessarily cancer.

I guess by the end of next week I'll know for sure.

Wishing you good news and everyone else the best of luck.

PBJ Austin
Posts: 346
Joined: Mar 2009

Thank you for sharing your story Mark, although I must admit this makes me very nervous. The doctor is saying it's unlikely I have cancer but he can't rule it out 100%. After reading your story I'm beginning to wonder if it is likely.

When the broncoscopy came back negative the doctor put me on antibiotics for 2 weeks. I was so hopeful this would work but the mass did not shrink. After the broncoscopy they sent samples for testing for infection and fungus, but that testing takes 4 weeks so the results will be in next week. If I test positive for infection or fungus I will be treated accordingly. But if those tests are negative they recommend either the EBUS or surgical removal of the mass. I am so confused, I don't know which of these to do. I'm tempted to have the surgery just to get this over with, but that would mean losing a piece of my lung.

If anyone has any input regarding surgery vs EBUS I would be most grateful.

PBJ Austin
Posts: 346
Joined: Mar 2009

Mark, what were your symptoms before being diagnosed?

Thanks, and all the best to you.

MarkHongKong's picture
MarkHongKong
Posts: 5
Joined: Jul 2009

Hi

I just had a persistent cough and mild wheezing on occasions.

I was diagnosed first with bronchitis and then with adult onset asthma. It was only after the PET scan that they declared I had stage 4 lung cancer.

I am in totally good health - never been to hospital before. I have only a persistent dry cough. I work out 3-4 times a week still - I walk miles a day and don't get out of breath.

I came to New York last week as I don't trust the diganosis given to me as a result of the PET scan findings only - especially given that I've had no confirmed cancerous biopsies as yet. The Hong Kong hospital should not have told me I had cancer until a biopsy was definitive for cancer.

PBJ Austin
Posts: 346
Joined: Mar 2009

I agree, they should not have told you that, just as the ER doctor should not have told me he was 90% sure I had cancer just based on a CT scan. Mark, please post back with your results as soon as you get a chance. Of course I will be thinking of you and everyone else on this board.

MarkHongKong's picture
MarkHongKong
Posts: 5
Joined: Jul 2009

PBJ - likewise, all the best to you.

I will definitely post my results - they should be available late next week.

Fingers crossed for you and everyone else.

MarkHongKong's picture
MarkHongKong
Posts: 5
Joined: Jul 2009

I received my results today and as promised, sharing with those on this forum.

I was diagnosed with stage 3 adenocarcinoma of the lung, with spread to the mediastinal lymph nodes.

Although i'd rather have been told it not cancer or that I was a surgical candidate, i'm feeling much better than i was when i was told "stage 4 with a few weeks to live" prognosis a month ago .... I have the opportunity, drive and determination to fight .....having the opportunity to fight this is precious in itself.

As Eleanor Roosevelt once said, "Yesterday is history, Tomorrow is a mystery, and today is a special gift - that's why they call it the present" ... These words become even more powerful on days like today .... and I'm regarding the special gift as something I need to earn and win, it's no longer simply a given .... and fight to win I will.

Best of luck to everyone ...

Mark

PBJ Austin
Posts: 346
Joined: Mar 2009

I am so very sorry to learn that you do indeed have cancer but I admire your spirit to fight. I hope you will stay in touch and I wish you the very best.

MarkHongKong's picture
MarkHongKong
Posts: 5
Joined: Jul 2009

PBJ - thank you! I will certainly stay in touch and will post status updates!

Good luck for your results in the comings days/week(s)

PBJ Austin
Posts: 346
Joined: Mar 2009

Hi all,

I've mentioned my condition in other discussions but I just realized I never updated this thread. In case anyone is still wondering here's how it all played out.

I had more testing indcluding the EBUS and a PET scan. They finally determined I do not have cancer so they were going to do further testing and try to treat me w/meds. But things took a bad turn, as I developed pneumonia and started coughing up blood and other weird stuff. The doctor got worried and did the lobecomy as I was getting sicker by the day. In the end they found a severe bacterial infection and nobody can explain how the bacteria got there. Additionally the lung had adhered to the chest wall so they had to scrape it off. Instead of the usual 3 hours my surgery took 7 hours. The surgery was on 9/4 and I am still recovering but back at work.

I will remain a member of this forum because I believe I can help others with questions about the testing process and the lobectomy. You are all in my heart, my thoughts and prayers.

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