Please help me - 1293215

Hi Angela,

You're not alone Angela and we at Grace understand the agony of waiting. The bronchoscopy will look for a diagnosis of cancer which is probable but not an absolute certainty. If cancer is found they will want to know if the other 2 sites are cancer possibly by a biopsy of one of the 2 sights. Mutation testing will determine what is any biological treatments are available. Each step will inform the next step. It's a process and takes longer than anyone wants. I hope for the best for your mum. Please keep us posted and we'll be here to answer any questions.

All best,
Janine

Hi Angela,

As Janine stated, the uncertainty created by these types of scan findings can be very difficult. As you have found from your research, it is quite unusual for lung cancer to spread to the spleen. Finding out whether what's seen in the spleen represents metastatic spread of lung cancer will play a significant role in determining the course of therapy. Without metastasis to the spleen, surgery and radiation would be a more likely option, possibly with the possibility of a cure. If lung cancer has spread to a distant site such as the spleen, then the standard therapy would be systemic-chemotherapy, targeted therapy or immunotherapy.

I know that you would like to have a better idea about what to expect, but as Janine stated each step in the diagnostic process will help determine the next step. Only then will it become clear which treatments will be best for the situation.

JimC
Forum moderator

Without knowing what the tumors represent it's not possible to guess what would be appropriate. As Jim stated if the cancer has spread outside the lungs systemic treatment is likely to be the most helpful.

We have an extensive library that offers a lot of info. You may want to start with this, http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/

I know it seems like you'll never get a handle on this but if you mom does have lung cancer once you grasp the basics your education will move much more quickly.

Janine

Although the simultaneous discovery of a possible cancer in two locations tends to suggest they are related, it also is possible to discover two unrelated cancers at the same time. Further workup should reveal the nature of the lung and spleen findings.

JimC
Forum moderator

Until the biopsy is done and also a biopsy on the spleen, then you can't tell if it's cancer or not. Scans can only show suspicion for and are not a diagnosis. Only the biopsy can diagnose cancer. And until all the info is in, there's no way to know what it is, if it's cancer, what type it is, and what stage it is. If it turns out to be cancer, then she still needs to have a brain MRI to get to a complete diagnosis. In the US, it takes around 6 weeks to get to a complete diagnosis after all testing is done.
You also cannot look up treatment without knowing what type and stage it is. It's best to wait for the diagnosis then you can come back and ask your questions.
I know it's hard, I've been there and done that. With myself and also my Mom.
Take care, Judy

Just know that having lung cancer today is not an automatic death sentence. There are many new treatments and people are surviving and living fairly well for many years. How is your Mom's overall health?
Take care, Judy

Please tell your Mom that these symptoms would not necessarily preclude lung cancer and could be any number of things. Unless many people are very sick due to having undiagnosed LC, then it's hard to know what any one of these symptoms signify. She's now on the right track to getting a diagnose and it's time to look forward and not behind. Take care, Judy

CT scans don't light up, that would be a PET scan. Has she had a PET? They cannot confirm cancer without a biopsy, as already stated. Unless they biopsy all three spots, then you won't know if they're all cancer or not.
I would definitely want the spleen biopsied. Take care, Judy

Only the doctor can say why she believes the tumors to be cancer but it's likely the size and shape inform her thoughts. Anything larger than 3 cm solid lung mass is more likely than not and at 5 cm it's very likely. But as Judy said it's not cancer until it's seen under a microscope. Most any oncologist who has been practicing more than a couple of years will have seen masses that they thought certain to be cancer but ended up not being cancer.

FWIW, when you read about cancer and see words like unusual, rare, common, typical, etc know that cancer can and will do anything. Expect at least one element but usually several elements about an individual's cancer to be rare or unusual or unique, it's the one thing you can count on. It's a strange oxymoron about cancer. I said all that to say if there's lung cancer spread to the spleen it would be treated like lung cancer spread to any other part of the body. It won't have any specific meaning about how to treat.

There are many nodes in the chest and it depends on where they are in relation to the primary mass as to what N value would be assigned. Dr. Weiss talks about that about half way down the page of the intro.

I hope this is all for naught and your mom doesn't have cancer. But know you have a place to find answers.
All best,
Janine

Hi Angela,

I think we all can relate to your question. Dr. West has written an excellent post on the subject.

http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta…

I hope this helps, let us know if you have follow up questions. You're right in wanting to know all you can beforehand. There's so much to know about cancer that a doctor can't guess at what you do and don't know so you just can't expect them to know where to start so often the doc doesn't try. But if you have specific questions they get an idea of want you want to know.

Keep us posted.
Best,
Janine

Asking what would you do if it were you or your ___ is a question that may illicit a different response than otherwise. I believe it was Dr. Weiss who said he does.

If your mom has incurable lung cancer they will want to know if there are mutations or high PD-L1 expression. What they look for first depends on histology. It will take some time to get it right but it's important to get started on the right foot.

I know you want to get ahead of the curve so you can have an educated conversation with the doc but with more detail usually comes more possibilities, hence more information, at least for now.

The question today remains, is this lung cancer. Then you'll need to find out about the nodes and/or spleen.

I really understand. Before my husband was diagnosed he had undiagnosible biopsies (no oncologist) but we knew it was almost certain to be cancer because of bone destruction (nothing destroys bones like cancer). It's a lot to take in without a clear path. It will happen and the release of stress will be apparent even if it turns out to be cancer. One step, one day, one moment at a time. Your mom is lucky to have you including the ice cream and the pizza... :)

Janine

It's absolutely possible that this isn't cancer. There are several other possibilities one being infection but the larger the mass the more likely it is to be cancer. My hopes are very much alive that this isn't cancer.

Hi Angela,

Yes, it certainly can. As Dr. West has said, although cancer can enlarge chest nodes, "it's not cancer until a biopsy shows cancer under the microscope, and I can assure you that we do see things that look concerning for cancer that turn out to be infection or inflammation, which can also enlarge lymph nodes in the chest." - http://cancergrace.org/forums/index.php?topic=1701.msg9995#msg9995

JimC
Forum moderator

Angela,

If that is the result from the bronchoscopy, I am sorry to hear that. I think the next question would be to determine whether the finding in the spleen represents cancer. Does the doctor plan a biopsy of that location? That result would make a difference in staging and possibly treatment as well.

Keeping you and your mom in our thoughts.

JimC
Forum moderator

Angela,

Since the lung mass and lymph nodes are confirmed as lung cancer, it may not be felt necessary to check out the spleen, since the first choice in treatment would be chemotherapy, possibly in combination with radiation. Surgery is at times an option with some Stage III lung cancers, but with a possible metastasis to the spleen, your doctors will probably want to follow it and see if it responds to the chemo before even considering surgical options.

Good luck with treatment.

JimC
Forum moderator

I'm so sorry your about your mom's diagnosis. I encourage you to go back and read the intro to lung cancer link, about halfway through is a section on staging. The type of treatment depends on stage of cancer. Unfortunately if the cancer is in both sides of the mediastinum nodes the cancer is staged IV and not considered curable but it is treatable. The reason for this staging is the 2 lungs are connected only by blood and lymph system which is connected to the rest of the body and cancer cells can be expected to be circulating throughout the body. This is why systemic treatment is used. Surgery and radiation are reserved for either palliation or curitive tx because with each use it destroys healthy tissue of which you want to maintain. With the possibility of curing or to mitigate symptoms surgery or radiation is considered worth the loss of healthy lung tissue.

A 2nd opinion is never a bad idea. http://cancergrace.org/cancer-101/2011/11/13/an-insiders-guide-to-the-s…

I may have already shared this with you, http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta…

Here is a link to our FAQ page or it can be found on the bottom of the "General Cancer Info" drop down. http://cancergrace.org/faq

You'll start to make sense of all this soon.

Janine

I understand and wish I could say or do something that would help. Lungevity is a really helpful lung cancer support forum where people help each other navigate the emotional battlefield of cancer care. And we are here for all the support we have to offer. Please keep us posted. You're in my thoughts.

Janine

Hi Angela,

Yes, adenocarcinoma of the lungs does respond to a variety of treatments, and over the past several years more options have become available. Do you know if enough tissue was collected to test the cancer cells for targetable mutations? When the presence of mutations such as EGFR, ALK or ROS1 are detected, there are specific targeted therapies which can be used, in addition to standard chemotherapy and immunotherapy.

I agree with Janine that a second opinion is a good choice, especially at this point when treatment decisions are being made.

I understand how difficult this time is for you; it's a lot to take in very suddenly. Most people find that they start to feel a bit better once a treatment plan is in place and you feel as though finally something is being done about the problem.

JimC
Forum moderator

Angela,

Yes, it can. Chemotherapy is a systemic treatment, which means it can kill cancer cells throughout the body.

JimC
Forum moderator

Hi Angela,

Usually, the recommended treatment is based on the staging of the cancer. For stage III lung cancer, chemotherapy, radiation and, in some instances, surgery. Stage IV treatment is typically limited to systemic treatments such as chemotherapy, targeted therapy or immunotherapy. The change in recommended treatment is most likely based on the presence of affected lymph nodes on both sides of the mediastinum, making the cancer stage IV, as Janine described earlier in this thread. The local therapies (surgery and radiation) aren't used because killing cancer cells in one area of the body doesn't solve the problem of the cancer cells having spread to the bloodstream and/or lymph system.

When specific mutations/genetic alterations, such as EGFR or ALK, are found in a patients cancer cells then targeted therapies are used. These are drugs which have been designed to attack cancer cells which have that specific genetic anomaly. Immunotherapies, on the other hand, seek to utilize the body's own immune system to kill cancer cells. Cancer cells which express a high level of the protein PD-L1 tend to respond better to current immunotherapies, which is why your doctor is testing for it. Dr. West has a brief description of immunotherapy and PD-L1 here.

JimC
Forum moderator

They tend to be used individually, although combinations are also possible.

JimC
Forum moderator