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Mass In Lung - Doctors Puzzled
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Mass In Lung - Doctors Puzzled

I’m a 50-year-old female and sometime near the end of summer in 2007 I began to experience a cough. In November of that year I went for a last appointment with my MD who was retiring. He said the cough was a known Altace side effect and that I would have weigh the benefits of continuing to take Altace against the annoyance of the cough.  I continued on Altace and but after a few months I coughed up blood for the first time. Prior to this, my cough had been dry.   In June 2008.  I found a new MD and explained my cough and family history (2 parents with lung cancer).  She immediately took me off Altace and ordered a chest X-Ray.  The X-Ray showed a large mass (7 cm) on my left lung and the Lab told the doctor to treat me for pneumonia and have me return for a second X-ray after the treatment.   My doctor put me on antibiotics as instructed but also ordered a CAT scan.  The cat scan showed the same mass on my lung.  After I completed the antibiotics, I went for a second X-Ray.  The second X-Ray showed no difference in the mass.  

After being taken off Altace, my cough almost completely disappeared.  I really feel and look healthy as a horse!   My doctor said the next step was to find out what it was.  A lung cancer biopsy was recommended. Several weeks ago, in July 2008, I opted for the less invasive needle biopsy rather than a broncoscopy.  The results were inconclusive.  The only thing they could see were a few ‘suspicious’ cells.   So, last week I went for the broncosopy. I discussed the results with the pulmonologist this week. He said that his results were also inconclusive. He described the mass as largely fibrotic and he said that there was likely a malignancy in the center. He compared it to a Tootsie Pop, with the Tootsie Roll center being cancer. He also said cancer was really good at hiding.   I asked if he had ever come across my particular condition before and he joked, “No, you are a freak.”   He offered 3 suggestions 1) Another needle biopsy coming in from the other side of my lung. 2) Another broncoscopy with a more aggressive biopsy 3) Surgery to remove a piece of the lung.  His recommendation was to go for another needle biopsy.

Both the Radiologist and the Pulmonologist claimed to have taken substantial biopsies showing the samples to a pathologist to review and make sure it was an acceptable sample before completing the procedure. They also both agree that part of the lung could be collapsed.  

An Internet search reveals people who have been sent for numerous needle lung biopsies and gotten inconclusive results every time, due to the random nature of capturing the correct cells.  So I don’t want another one or a broncoscopy since was also inconclusive.

I’ve lost faith in modern medicine, from my original doctor shrugging off the cough even though my father died of lung cancer, to these procedures, which yielded nothing. I haven’t even mentioned the first Radiologist who left me in tears on my consultation visit with him before his needle biopsy, which I ultimately passed on because he was so cruel.

My sister wants me to go on a raw food diet and ignore conventional medicine. Sadly, it’s the most attractive option I’ve been given so far.

What is this un-diagnosable fibrotic mass in my lung? Is my condition so unique that I am truly a ‘freak’? I am and have been prepared to fight cancer but I can’t start the war until I know the enemy.

Hilary

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16 Comments Post a Comment
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572713_tn?1237098502
Hilary,
First and foremost, you need to find a doctor you feel comfortable with.  There is no excuse in the world for a doctor treating you as you described!  I don't know where you live, so can't begin to make recommendations.  Friends and co-workers are a good place to start, and most hospitals have referral services.  

Of course the radiologist & pulmonologist will tell you they took a good sample.  And they probably did!  Unfortunately, no biopsy is 100% and things can be missed.

I also was diagnosed with what my doctors thought was a fibrotic mass in my lung.  It did not appear cancerous in the x-ray or cat scan.  But knowing our family history (both my parents also died of lung cancer), my primary doctor pushed for removal of the mass via thoracotomy.  Good thing he did!  I had a rare cancer known as Carcinoid & ended up losing 1/2 of my left lung.  Obviously, my doctor went with his gut as much as with his head and book learning on this one.
Being honest, the surgery sucked.  It was very painful, and I'm still recovering 3 months later, but there is a good side!  This was an isolated tumor, I do not need radiation or chemo, and have been pronounced cancer free.

Your current doc should be able to tell you what he would do in your situation.  You may also consider taking your test results to another doctor for a 2nd opinion.  You know your body better than any one else.  What do you think is the right thing to do?  I know I didn't give you any answers, but hopefully I gave you some good food  for thought.  Best of luck to you!
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Avatar_f_tn
Thank you for taking the time to respond. It sounds like from your post that you had the surgery without having a biopsy. Is that correct?  I am not sure if I could be that brave!  My father went for surgery and they had to close him up without doing anything because it was too close to vital organs.  He was never the same after that.   He was older but it leaves me really wondering if surgery is the answer.   Right now I leaning towards going to different hospital/doctor for another bronoscopy biopsy, although I'm not sure.  I pick that method mainly because they knock you out and I am a big baby:)
Thanks again for your input.
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572713_tn?1237098502
I did have the surgery without the biopsy, simply because of the size.  The CT scan & xray showed that whatever it was, it was too big to stay in my lung.  So either way, it had to come out.  
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Avatar_m_tn
Hi,

There are a number of reasons why lung cancer is difficult to fight, and you have hit upon a couple of those reasons.

There is no early detection scheme that is known to work.
Your first doctor attributed the dry cough to the medications, this is sound practice. It would not be necessary to do the X-ray, a simple proof would be to withhold the medications and observe. Performing the X-ray to screen for lung cancer hasn’t shown any benefit in improving survival, and is therefore not recommended as part of preventive health care. Hence, there wasn’t a compelling indication for it.

There are technical barriers to sampling suspicious areas.
The fundamental proof of cancer is indeed the biopsy. Compare the breast and the lung. It would be much easier to obtain tissue from the breast than it is from the lung, and it would also be less dangerous. It is not surprising to get an inconclusive biopsy report for both breast and lung, but it is easier to convince women with suspected breast cancer to undergo excision of areas involved as the surgery is easier and safer.

Of course, the first reason worsens the second reason. Since there is no screening, the mastery of the biopsy technique would naturally suffer.  

I am not surprised that you are getting frustrated as it seems your experiences fell below your expectations.

If the mass involves nodes near the heart (and I think it does since a bronchoscopy was attempted. The bronchoscopy is able to access the larger airways; generally, these are the ones closer to the heart), another scope can be used to try and get a biopsy (this would be called mediastinoscopy). You could consider going to a center specializing in lung diseases.

I wouldn’t blame you for taking a holiday from doctors as well. You could also have the scans repeated to observe for growth, and to visit the doctor should other symptoms or masses develop. This scheme could also be pretty hard on your nerves, as it sounds like a passive stance on the problem. Stability of the mass can only be demonstrated over time, and some patients do fairly well with this plan, however, these are for cases with lung masses less than 3 cm..

Stay positive.
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Avatar_f_tn
Hi, Thank you so much for all the useful thoughts!  I hadn't mentioned this in the original post because I didn't want to over complicate it.  When they did my CT scan one of the doctors was able to see a tumor on my kidney about the size of a silver dollar.  My radiologist did not want to biopsy it because of the higher risk of seeding due to the biopsy. He said one step at a time and just deal with the lung.  Do you agree and would this added complication change your thoughts at all?  Also, do you have any names of cancer centers specializing in lung cancer?  I live in Connecticut and I just contacted the cancer treatment centers of america and they said they would take me for 3-5 days and provide a diagnosis with a recommended treatment plan.  What would your thoughts be on that? Sorry to ask so many questions but I am so conflicted on what to do.  I know I have to decide on my own but it is so nice to be able to get others thoughts and opinions. Thank you again for you help. Hilary
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Avatar_m_tn

Hi,

Is the mass found in the kidney, within the kidney itself or sitting on top of the kidney? The adrenal gland (which produces adrenalin among other hormones) sits on top of the kidney, and is a common site of metastasis for lung cancer. However, it is also common to have adrenal cysts, so a finding of a mass does not automatically mean it is metastatic. If the mass in the lung is proven to be lung cancer, a PET scan can be done to look at the metabolic activity of the adrenal mass and hopefully the results are unequivocal.

IF the mass is within the kidney itself, the most common cancer there would be renal cell cancer which is a primary cancer of the kidney not a metastasis. It would be more likely for a renal cell cancer to have a metastasis in the lung rather than the converse. However, it is unlikely that this kidney mass is larger than the 7 cm mass in the lung (as primaries tend to be larger than metastases), and the lung metastases tend to be multiple rather than solitary.

It is also possible that a mass in the kidney is also a benign cyst.

Cancer centers that are members of the National Comprehensive Cancer Network (NCCN) would be a good place to go, I don’t think there is one in Connecticut though. You can look them up at www.nccn.org. Alternatively, you could consider going to a university hospital with a cancer center as training institutions tend to be au courrant.

Stay positive.
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Avatar_f_tn
Thank you once again for the great opinions!  I did see the CT scan of my kidney and based on the dr's explanation and what I saw, I would say it is sitting on top of the kidney.   Just checked out the www.nccn.org and I guess Sloane would be the most realistic based on where we live. I doubt they would take me until I had a diagnosis. Dana Farber is good but I would expect their focus to be on breast cancer (just a guess??).  We do have a university with a cancer center (UCONN) so I will check that out too. I  noticed "Cancer Treatment Centers of America" is not listed on this site.  Have you ever heard of them?   Sorry to keep shooting back questions but it is great to investigate all avenues.  So much to wade through and thank you again.
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Avatar_m_tn
Hi,

I can’t say that I am familiar with CTCA, the only information I would have comes from the net. Wiki reports a controversy over advertising claims on efficacy. This is a frequent phenomenon especially where complementary/ alternative treatments are offered.  The usual problem is that patients may be given the impression that the treatment is equivalent to traditional treatments (surgery, chemotherapy, and radiation) when the actual direct comparisons do not exist (the term “alternative” may thus be inappropriate as it may automatically infer equivalence). In such a case, a decision would be based on anecdotal data based on efficacy claims by people who have used the treatment against the collected experience of thousands of patients.  Ultimately, the decisions are up to you. Make sure you have enough information when you make it though.
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572713_tn?1237098502
how are you doing?  any more info on your masses?
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Avatar_f_tn
Hi, Nothing much happening yet.  My pulmonologist said he sent the samples to the Mayo clinic but after 2 weeks still nothing back.  My family doctor said she is going to send me for a PET scan.  Also, she was going to see if Sloan or Dana Farber would take me without a diagnosis.  Everyone had been very anxious to take care of this but I think since nothing has been conclusive, the sense of urgency is gone.   I guess the same is in my mind too.  I kind of feel if it was that massive surely one of the two biopsies would have something to report.  Since I still don't know what to do, I have not pushed for anything.  

I was wondering if you had thoughts between Sloan Kettering or Dana for experience with lung cancer.  I kind of thought since Dana was more for women they might be more experienced with breast cancer.  Do you think that is true?
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Avatar_f_tn
Oops I addressed my post to the wrong person!  This was suppose to go to you.  

Hi, Nothing much happening yet.  My pulmonologist said he sent the samples to the Mayo clinic but after 2 weeks still nothing back.  My family doctor said she is going to send me for a PET scan.  Also, she was going to see if Sloan or Dana Farber would take me without a diagnosis.  Everyone had been very anxious to take care of this but I think since nothing has been conclusive, the sense of urgency is gone.   I guess the same is in my mind too.  I kind of feel if it was that massive surely one of the two biopsies would have something to report.  Since I still don't know what to do, I have not pushed for anything.  

I will keep you posted!  Thank you for your concern:)

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Avatar_m_tn
Hi,

The simplest answer would be to go to the more accessible center.  Dana Farber is actually tied to Brigham and to Massachusetts General (it is actually 3 cancer centers), and if you look at the number of trials ongoing on lung cancer – they have at least 50. Hence, while Brigham is a women’s cancer center, I don’t think that this means that they are exclusively for breast cancer.  Memorial Sloan needs no introduction, it is one of the oldest cancer centers.

Hopefully the diagnosis can be clear after your last biopsy. Waiting can be awful. Stay positive.  
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572713_tn?1237098502
How are you doing?  Did you get a diagnosis?
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Avatar_f_tn
Hi,  I ended up going for a PET scan which showed that the cancer was on the edge of the mass.  So they sent me for another needle biopsy with a different road map.  I just finally got a diagnosis on Friday.   I am told it is adenocarcinoma.  At this point I really don't feel like I know anymore than before.  Information is so wide and varied and I don't have any more details.  I have an appointment with a local Oncologist this Thursday and I am working on trying to get an appointment at Dana Farber.  Have to go through all the transfer of records and stuff before Dana will see me.

I also filled out the form at Dana and it showed me one Clinical Trial that I might qualify for.

Do you know anything about adenocarcinoma?  
Hilary


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Avatar_n_tn
Actually the Brighams has the one of the best thoracic surgeon in the world David Sugarbaker and he is associated with DanaFarber. His office is in the Brigham and Womens hospital. They are coming from all over the world to consult with him on the worst possible cancers!
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572713_tn?1237098502
I'm so sorry, I don't know much about adenocarcinoma - that's a different cancer than I had.  Here is a informative website that I found with what looks like some good informations.  http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/24402.html
Good luck & I will pray for you.
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