please help me

mimi80 · Regular Joined: 04 Dec 2007 Posts: 15

Hi all,

I have recently posted a topic "dad diagnosed with lung cancer", please read it so I don't have to paste it here.
Now doctors are claiming that my dad has stage IV lung cancer based only on biopsy from a lymph node and CT scan which showed "sparks" on his lungs (he had tuberculosis long time ago and those could be scars from that, or am I completely crazy????) They have scheduled chemotherapy, but my dad is refusing it because he wants to know if it is lung cancer for sure or cancer that started somewhere else. He is insisting on biopsy, but they are not so keen on this.

My questions:

Can they know that it is lung cancer without biopsy or bronchoscopy?
Should they have given him chemo without proper diagnosis?
They are saying that it is not lymphoma, Can they conclude this from these tests?
Also, I am going to see his doctor next month, please tell me what questions we should ask.
Can they conclude that it is stage IV only from lymph node biopsy???
Please, I am desperate for any help.

thank you

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

Mimi,

Sorry this is going on, but maybe I can help with some of your questions. Just so you know, my husband battled NSCLC for over two years, so I'm pretty familiar with some of this.

From what you have written, they did do a biopsy of his lymph node and the cells they found were specific to lung cancer. It would probably be good to know whether it is NSCLC or SCLC. (Non-small cell lung cancer or Small cell lung cancer) Beyond that there are sub-types of NSCLC (Adenocarcinoma, squamous cell, large cell, and others. The most common type is adenocarcinoma.) The newest staging "rules" apply to SCLC too (in a different way), but most doctors still tend to use limited or extensive for SCLC, so it does sound like your Dad has NSCLC.

They have concluded his Stage because the cancer has left the lung and traveled to his neck, thereby making it IV. Often they will utilize a PET scan to determine exactly what areas are affected, but typically only with NSCLC. They already know it's lc, so maybe they are holding off on a PET.

Keep a notebook and pen with you to jot down thoughts and questions as they come up. Bring the notebook with to your Dad's appointment. Do some research on Staging and different types of lung cancer on the internet.

Again, I'm sorry you are going through this.
PBJ

mimi80 · Regular Joined: 04 Dec 2007 Posts: 15

thank you for your kind reply.

My only concern is that doctors told him that they are suspecting lung cancer, so they said it is lung cancer stage IV. He was also told that they have no idea where the cancer originated, how is this possible if lymph node biopsy can confirm lung cancer. How can they be unsure?
That is the reason my dad is requeting lung biopsy.

it is all so confusing, I don't know what to think anymore.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

Mimi,

I'm a little confused and I can see why you are too. Do you live where you have an opportunity to get a second opinion?

Another suggestion would be to write a post on Onctalk.com. This is a website run by Dr. West, who is an oncologist that specializes in lung cancer. He answers questions every night and is very kind.

I'm truly sorry that this diagnosis is going so badly. You sure hope that the doctor's could get their act together and start treatment with a confident diagnosis.

The "sparks" you speak of could be the origin and a lymph node biopsy is certainly easier than what a lung biopsy involves. Very confusing and my heart breaks to see this being bobbled around when you need definitive answers. I'm glad you are going for the next visit as two sets of ears at a time like this are a good thing.

Hugs,
PBJ

DocSeiwert · Site Admin Joined: 14 Oct 2007 Posts: 20

Dear mimi80, this is a very difficult situation.

I have a few thoughts you may want to consider:
- One can do special staining of the lymph node tissue (called immunohistochemistry) which sometimes provides a clue from where the cancer originated. Most of the time this is not definitive but it can help. Ask your doctor about a marker called TTF-1, which is commonly positive in NSCLC
- PET scans can be used to differentiate cancer from infections. Again this is not 100%, but can oftentimes solve the problem. Cancers are metabolically much more active and light up more on a PET scan. Again ask your doctor about this.

Finally the best way to get another opinion regarding the stage is to see another physician. Typically a university hospital is a very good choice for a 2nd opinion.

I hope this helps. Good luck.
_________________
Tanguy Seiwert, MD
Medical Oncologist, University of Chicago

Disclaimer: This information is for informational purposes only and is not medical advice. Please always consult with your physician.

mimi80 · Regular Joined: 04 Dec 2007 Posts: 15

thanks guys, it really helps to have someone who can point me in the right direction. I will try onctalk.com. Also, I will ask about that marker and PET. This kind of info is great!
We are asking for second oncologist.

My father has already accepted the fact that this might be lung cancer stage IV, he has no problem with that and neither do I. Life is tough, it has been for us my whole life, but we have pulled through. My dad told me that he wants to know what the diagnosis is before he proceeds with any therapy. I agree with him and respect his wishes, it is his body after all. He is planning to fight this beast. He also told me that his body is not telling him that he is really sick yet so there is no need to go ballistic.

Statements like this from his medical team really freak me out: "We are not sure if it is lung cancer or some other cancer, we know it is stage IV. Chemo is good enough for either so that is what you should get. No need to do lung biopsy, you are waisting time. This is bad, you have to accept it (my dad already knows how bad it is, he knows he could die, we have no problem accepting this since it is not up to us)"
This is University hospital and that scares me even more. The doctor that sent him to do CT asked my dad yesterday: "Who sent you for CT". Is this absurd or what? Are we crazy or is something really weird?

I am not here to trash doctors, but sometimes I wonder how some of these people are allowed to practice medicine.
Please do not get offended by my statements, they just apply to this case.

thanks

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

Mimi,

I'm grateful that Dr. Seiwert checked in on this post. I tend to be a little biased, as I live in his hospital's area, but he is from an excellent center at the University of Chicago! One of the tops in the country.

I know you aren't out to trash doctors, but they can leave you scratching your head in wonder if they aren't clearly articulating what is going on with your Dad. That's why I say to go to a visit -- there may be other things going on that your Dad's ears are missing. It was common to come out of a doctors appointment and have my husband and I hear different parts of what was said. Not hearing the same thing differently, just picking up on different things said. That's why a notebook is a good idea.

Do ask the docs if they have done the staining on the biopsy sample. TTF-1 positive was listed on my husbands reports, along with different CK stains to further differentiate the subtype of lung cancer he had. Also, ask for copies of all of his records so you can compile a home file.

We have had the experience with our brother-in-law who was diagnosed as late stage cancer and presented with brain tumors. They never did find the primary site, but following surgery and brain radiation, he did go onto a few different types of systemic chemotherapy. What they did know in staging him was that the type of tumors he had in his brain were not the primary site and had metastasized from somewhere else in his body. That is what makes for a Stage IV diagnosis in any cancer. It was weird, and still is, that they never found the primary cancer. Also, some chemotherapy drugs are used for many different types of cancer.

I understand your Dad's hesitation without a PET scan, because our oncologist used these like clockwork to see how my husband was responding to the different lines of chemo. Depending on the insurance company, PET scans can be hard to get them to pay for and they are expensive. Medicare does cover them.

Not to muddy the already muddy waters, but there are also tumor marker blood tests that aren't often heavily utilized because they don't always tell the true story. They can be all over the map and aren't considered a good indicator of what is going on, especially with lung cancer. Our oncologist did do a baseline CEA marker test though shortly after diagnosis to see how elevated my husband's levels were.

I understand how your confidence with some of their statements is pretty low right now and I'm truly sorry. Let's hope for some clarification and movement in the right direction for treatment.

My best to you,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

mimi80 · Regular Joined: 04 Dec 2007 Posts: 15

Thank you for letting me know about these things, I am writing everything down so I can ask these questions when I go there. I agree that my father might have missed something when he went for his appointments. However, vague statments on the type of lung cancer and therapy should not be there.

We are just trying to find out what exactly it is so he can start proper therapy ASAP. I am sure that many will agree that proper diagnosis is necessary for appropriate therapy.

I am very happy that I get to share these things with all of you and you guys have been of great help.

thank you once again.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

Mimi,

No problem. A diagnosis of this type is bad enough without all the question marks that you have surrounding it!

Feel free to vent anytime -- that's why these boards are so very important. It is a safe place where people truly understand.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

mimi80 · Regular Joined: 04 Dec 2007 Posts: 15

Hi everyone,

This is what Dr. West wrote yesterday:

I'm very sorry about these recent events with your dad. I can see both sides of this problem: the docs are saying that if it's not going to change the treatment, it's not necessary to do the test, but your father wants to get a better sense of exactly what is going on. In general, we have a principle in oncology that the tissue is the issue: knowing exactly what kind of cancer you're treating helps clarify the best treatment for it. However, there are some regimens that would be very appropriate for either metastatic lung cancer or metastatic bladder cancer. A combination of a platinum with gemcitabine is a leading choice for either setting.

Still, I think that knowing whether this is metastatic lung cancer, bladder cancer, or something else could potentially have important ramifications for treatment options, if not now then in the future. I think I would be inclined to clarify the current diagnosis better. I don't know what the situation is like between him and his doctors. I think if they're extremely confident it's metastatic lung or bladder cancer, and he doesn't have the opportunity to either change their minds or go somewhere else to get the workup he wants, it's probably not worth staying at an impasse and not getting treated on principle. To me, that would be like knowing you had the right of way in a bad car accident. You may be right, but that's not much consolation.

I definitely understand where your father is coming from but also see the point of his medical team that the treatment wouldn't necessary change based on what they'd find.
Taxol is certainly an appropriate treatment for NSCLC, a reasonable choice for bladder cancer, but wouldn't be a top choice for SCLC. You're right that this would be a good reason to do a biopsy. Usually, though, SCLC appears as a pretty bulky central mass in the mid-chest, not buckshot of small nodules without a dominant chest mass.

I haven't heard the term "sparks" to describe lung nodules before.

A second opinion certainly sounds reasonable, but I can't weigh the benefits of that vs. the risk of waiting on treatment. Only someone who is more directly involved could provide that kind of insight, and there's also plenty of room for his own preference and how good or poor the fit is with his current medical team. I'm sorry I can't help more with such specifics.

mimi80 · Regular Joined: 04 Dec 2007 Posts: 15

update on dad's condition

After "wrestling" with his doctors, my dad received following info today:

Update on dad's condition.

My dad is scheduled to have endoscopy on his abdomen (they saw a shadow 2x3 cm on his CT scan) and possible biopsy on Monday. They have also written +/- open surgery.

They have written: Squamous cell cancer on his charts.

They have moved away from lungs (I am very confused about this).

I asked Dr. west about this and this is what he wrote:

"I don't have the whole story, but it sounds reasonable to me. It sounds like much of what is happening is below the diaphragm, with smaller bulk of disease in the chest."

-Dr. West

ANYONE HAS ANY THOUGHTS ON THIS?

mimi80 · Regular Joined: 04 Dec 2007 Posts: 15

I have really found that all of the info that I received from this forum and Dr. West was more than helpfull. I would like to thank everyone for helping out. Please feel free to give any suggestios or comments. I welcome them all.

thanks

In · Posted: Fri Dec 14, 2007 9:09 pm Post subject: Re: please help me

mimi80, Hi. I'm happy you find help and support here. I haven't got much usuful information. But wanted you to know , i have been following your story, and i am thinking of you and your love ones.
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Thinking of you Inica

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mimi80 · Regular Joined: 04 Dec 2007 Posts: 15

Thank you so much. Just knowing that someone cares means a lot.

sine · Regular Joined: 14 Nov 2007 Posts: 10

Hi Mimi and All,

On the advice of my daughter, I bought a digital recorder from WalMart that cost less than $40 to take to all of my Dad's doctor's appointments. So far, every appointment he and I (and anyone else who went with us) discuss what we heard from the docs and nurses before we listen to the recording and would you believe we all hear something different!!! I am shocked by that and so very glad that I have an actual recording of what was said so we can refer back to it. We usually listen more than once to make sure we all hear the same info.

I highly recommend recording the appointments so that they are not subject to human emotions, which as we all know, is very possble. I don't even ask the medical staff if I can record. I just hold the small device in my hand and no one knows that it is recording. After all, it is not to try to "catch" someome making a mistake, but rather an opportunity for us to hear the real deal over and over until the painful info soaks in and all are in agreement with it. Once we are in agreement, then we can make informed decisions.

Good luck with your treatment.

-sine

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