BAC after 7 years found of fluids need recommendation for good doctors - 1289181

timeless88
Posts:7

Dear Dr. West,
I have spoken to you briefly in 2009 shortly after the surgery. They removed 1/3 of my left lung after they spot nodule of bean size. It was diagnosed with BAC. I am 52 year old non smoke and eat healthy and excercise regularly. I grew up in China and came to US in 80s. But do travel regularly to China. They were no any thing new came up according my doctors did ct scans. Last week I did another ct scans after 2014. It shows lots of fluids around my left lung airway. It caught my doctor by surprise. I was immediately admitted to hospital to have a procedure to take the fluids out for testing. Last Friday, 500 ml fluids brown was taken out. I started to feel short of breath and chest pain. The question is: is my cancer come back after 7 years ? Do you have anybody to recommend who specializes in this type of cancer in the bay area ? Much thanks for your prompt response.
Lei

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JimC
Posts: 2753

Hi Lei,

I am sorry about this latest worrisome complication for you. If you had clean scans through 2014, it is unlikely that this is a recurrence of your earlier cancer, especially if the only finding on the scan is the fluid buildup. Such pleural effusions can develop for various reasons, many of them not cancer-related. The fluid testing should provide some answers. If it is cancer, it is more likely to be a new cancer than a recurrence.

With that in mind, I think it would be good to hear the test results before deciding to find a BAC expert in your area. If it does prove to be BAC, Dr. West may have a colleague to whom you can be referred.

Hoping for good results,

JimC
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timeless88
Posts: 7

Dear Jim,

Thanks for your prompt response. Just came back from doctor's office. The test on fluids is positive. Also my lung is full of fluids again. So please recommend mr. West colleague in BAC oncolage in the Bay Area who can also with your team there asap so that I can get on the treatment. Much appreciate for your help, Lei

cards7up
Posts: 636

Did they say it was still considered BAC (adeno in situ), or is it adenocarcinoma? Will you do a pleurodesis?
Take care, Judy

catdander
Posts:

Hi timeless,

I'm so sorry to hear this. If I understand you right, you want an oncologist in the Bay area who will confer with Dr. West on your case. If this is right I think the best thing to do is call Dr. West's office. They might be ab]le to get the ball rolling from there.

I hope you're feeling better soon
Janine

timeless88
Posts: 7

Hi Dr. West,
The fluid test came back is positive has cancer cell of the BAC, I was told. But no tumor was shown on ct scan. Pet scans shown a couple lighted areas, I was told. In order to have the right treatment, I was told to have further biopsy test.

Then I was told the intervention radiologist said he cannot do the biopsy test because the nodule is to close to lymphoma. My doctor then said should be a specialist in bronchi area to do that.

I am very lost: why the biopsy is needed for treatment if they already found the same BAC cancer cell in the fluids ?

Second, 7 years ago the nodule size 1.1 mm shown on ct was too small to do biopsy Now the nodule is 1 mm (not shown on ct) but shown on the pet scan. I was told it is ok to do the biopsy.

Dr. West, you are the expert in this area. Do we miss anything here ?

Much thanks for your inputs.

Lei

cards7up
Posts: 636

It would most likely be 1 cm not 1mm, since they'd barely see a 1 mm nodule. They can biopsy 1 cm and over. Are you not at a major cancer center? Take care, Judy

catdander
Posts:

Hi Lei,

Unfortunately lung cancer that is found in the pleural space is considered not to be curable, though that's not to be confused with not treatable.

With that said a lung cancer that's not growing may not need immediate treatment. In other words if the cancer isn't curable and isn't causing immediate problems it's important to ask, "why treat?" It's possible for a cancer like BAC to grow so slowly that it never causes problems. It's possible to treat only when needed so that you never run out of treatment options (most people do) and die of something altogether unrelated many years from now. When you read Dr. West's blog posts on slow growing nsclc (usually BAC but not always) he emphasizes the importance of not over treating. You want to keep your lungs in tact for use later on if at all possible.

If you haven't it's helpful to read Dr. West's blog posts on the subject, starting with this introduction. http://cancergrace.org/lung/2010/07/09/basics-of-bac/
This is a good discussion of staging BAC, http://cancergrace.org/forums/index.php?topic=378.0

The reason for further testing would be to check for actionable mutations (mutations that have specific anti cancer drugs) such as EGFR, ALK, and ROS1. There's often not enough cancer cells collected in the pleural fluid to test. There also is likely not enough tumor mass to biopsy.

continued...

catdander
Posts:

The radiologist is likely suggesting you get a bronchial lavage for biopsy since there is not enough of a target to try for a core biopsy. However again you want to ask, why. In the following discussion Dr. Camidge explains why it may not be helpful.
"Dr. West: Again, on the practical aspects, is it possible to do testing from cytology,
from a bronchial lavage or a fine needle aspiration or do you need to
have enough from a core biopsy?
Dr. Camidge: It doesn’t have to be a core biopsy. Bronchial lavage is probably a little
challenging because they’ve probably used all the cells up in the test.
So when they do the bronchial lavage they usually stain the cells which
makes it, not impossible, but it makes it slightly harder to do the test. If
they’ve drained fluid off and sometimes they spin that down and form
what’s called a cell pellet and then they embed that in wax and you can
take little slices of that off. Purely from a bronchial lavage, hard to say,
but I’d say unlikely. I think sometimes we have to embrace the idea that
if we’re going to make this a more personalized choices, we do need
suck up the idea of having another biopsy just so we can get the right
material for making these calls. "
This quote can be found on the last page of this excellent round table discusion transcript, http://cancergrace.org/lung/files/2010/02/dr-camidge-on-alk-inhibitors-…

I can not imagine how I'd feel in your place but I'm sure of the questions that need to be asked and answered before performing procedures that may not produce actionable outcomes. The best action for you right now might be to watch and wait. Get a scan in 3 months to see if the cancer has taken on a more aggressive stance and go from there.

I will be keeping you in my thoughts,
Janine

timeless88
Posts: 7

Jannie, thanks for the comments and information. It is helpful for me to understand. May I ask how safe it is to do this kind of biopsy since mine nodule is so close to lymphoma ? Thanks, Lei

catdander
Posts:

Do you mean that the tumor is close to a lymph node? If so lymph nodes aren't delicate at all. There are commonly taken out to test for cancer and cancer staging. So no that wouldn't matter. What matters is that the nodule is reachable through a bronchoscopy. Bronchoscopy with transbronchial biopsy is a procedure in which a bronchoscope is inserted through the nose or mouth to collect several pieces of lung tissue. A lung specialist (pulmonologist) trained to perform a bronchoscopy sprays a topical or local anesthetic in your mouth and throat.

It can be uncomfortable but isn't as invasive as a needle biopsy. The problem is that there's often not enough cancer cells collected to do genetic testing.

Janine

timeless88
Posts: 7

Jannie,

Thank you so much for your response, it surely helps me to understand what is going on in this most difficult time. My chest pain has intensified and also more often is out of breathe. Since the fluid is found out in my chest it has almost one month gone by. I understand to find a right treatment takes a time and even biopsy test takes time to do analysis. My question is the fluids test come back positive and they found cancer cell there. Why can that be treated first while at same time do do more test to find other mutation in other tumors ?

Also I was told it was slow growing cancer, so they really know what type of cancer it is, right ? Or maybe they suspect it is not slowing growing ? But then is the time very critical in my case ?

Thank you so much for your thoughts.

Lei

catdander
Posts:

Hi Lei, I'm happy to be able to help make a bit of sense out of this. It sounds like your immediate issue is your pain and breathing problem. If you still have fluid build up there are procedures to drain the fluid that can help. We have a good series of video posts on the subject, http://cancergrace.org/lung/tag/malignant-pleural-effusion/

Even if the pleural effusion is the reason for the pain and shortness of breath (which it probably is) systemic therapy can very well help.

Now comes the reason for more cancer tissue testing. There are treatments for those with certain mutations (called actionable mutations). These treatments are usually safer, better tolerated and often much longer lasting. The problem you have is there's not enough tissue to test but anti cancer treatment might be the fix to your symptoms.

Options may include collecting more fluid in hopes of getting enough cancer cells this time for mutation testing. I believe a bronchoscopy was suggested in hopes of collecting enough cells for mutation testing. Another option is to try draining the PE as suggested in the link above but most if the reason for the PE is the cancer then systemic treatment is the best way to solve the problem.
Another option is traditional chemotherapy for 1st line. No more testing needs to be done in order to start. It involves 4 to 6 cycles of usually a platinum doublet. When you need 2nd line treatment can try tarceva (a targeted therapy for egfr mutants). Tarceva is fda approved for 2nd or later line treatment for anyone with nsclc. So you would never need testing for egfr mutation.

As for how aggressive or indolent you cancer is it's always a matter of individual growth no matter what your cells. Types only suggest what may be. Time is what will tell your cancer will do.

I hope some of this helps,
Janine

timeless88
Posts: 7

Hi Jannie,

Thank you so much for the explanation. It does make more sense for me now. When you said 1st line treatment is that meant first stage treatment and 2nd line means 2nd stage treatment ?

Also does finding mutation process takes long time and not finding mutation means have to wait for the second stage treatment and also means really on a trial to see if it will work sort of things ?

Best Regards,

Lei

catdander
Posts:

The term stage of treatment isn't used in the US though it may be used elsewhere. A line of treatment refers to a specific treatment drug or drug combination used for a period of time. Since there is only so much time any of these drugs work in combating cancer one treatment drug can be followed by another and so on; hence line 1,2,3... In the US and most if not all other countries the term stage is used to describe how far advanced the cancer is when first diagnosed.

There are guidelines for what treatment to use for 1st line. First line treatment is usually reserved for the best possible outcome. If someone is EGFR, ALK, or ROS1 positive they would begin with a drug that inhibits cancer caused by that mutation. However if there is reason that a mutation can't be found (such as lack of cancer tissue to test) but there is a need for anti cancer treatment (like curing a malignant pleural effusion) then traditional chemotherapy is very appropriate. Chemo can be effective for either mutation positive or negative. When 2nd line is needed a TKI for the most common mutation egfr can usually be tried (specifically tarceva is fda approve in the US) for anyone with nsclc because tarceva has been shown to help at least a little for all nsclc. So if you have an EGFR mutation you can expect a better than usual response to tarceva or in some countries iressa may be an option. This depends on the health system where you are. However iressa didn't have as good efficacy in wild type (non mutants) as tarceva so it may not be an option in some countries where tarceva isn't used. These are things that you should ask about. However I think you are in the US aren't you?

I hope this makes sense.

Janine