Information and experiences please?

[marcyh]

Hello.  I am new, here on behalf of a friend with lung cancer.  She is an otherwise healthy 75 year-old.  A CT scan shows multiple spots in her lungs as well as a mass.  She is to hear the results of a PET scan on Wednesday and to talk about treatment.  Can you give us some idea what to expect?

If the cancer is contained in the lungs, what is the normal treatment?

If it has spread to the lymph nodes, again what is the normal treatment?

And if it has metastasized to other organs, what is the usual response to that?

If it is treatable, I would imagine immunotherapy is a common treatment.  My friend is hesitant, very concerned about side effects.  Can you talk about your experiences with them?  

Thank you, I appreciate your insights.  I realize each person is different, but I value the input of patients who are walking it out.

marcyh

[Denzie Moderator Volunteer]

Much will depend on the cancer itself. First order of business is getting a biopsy so they know IF it is cancer. Until a biopsy confirms cancer, it's not cancer. My uncle had a large benign tumor in his lungs called a teratoma. It contained pieces of hair and teeth. So not every tumor is a malignancy.

When they do a biopsy, they have a pathologist on hand who will do a gross examination to determine if it's small cell or non small cell. Small cell has a distinct appearance and they will start treatment as soon as they can schedule it because it is aggressive. If it's non small cell the pathologist will take up to 72 hours to determine if it's adenocarcinoma, squamous cell or some other more rare form of nsclc. That must also establish that it originated in the lung and hadn't metastisized from somewhere else

Another piece of the tumor will be sent out to determine where the DNA broke down and the cancer formed. Some cancers will have a targeted treatment that addresses the specific place the genetic mutation occurred. The will also check to see if the tumor expresses a protein called PD-L1 to determine if an immunotherapy is appropriate.

Also, when they establish that it is a cancer, they will need to do an MRI of the brain to rule out metastasis there.

The Go2 Foundation has a really great handbook that will explain more if this in plain English. You can download it for free or order a copy to be sent to you.

When you have more information, please check back and let us know what they determine for treatment and we will help in any way we can. Just know it is not the automatic death sentence it was years ago. I'm a 13 year survivor of stage 4 adenocarcinoma.

go2.org/wp-content/uploads/...

[DJL10]

I was diagnosed with stage 3 nsclc with a 5.5cm mass as well as some unknown spots/nodules on same lung. I was treated with 7 rounds of weekly chemo and 7 weeks of radiation simultaneously on the large mass. It went down to 3.8 cm. Now on once a month imfinzi immunotherapy.

[TomAnderson]

I would agree with much of what has already been said. A biopsy is extremely important as a next step. Immunotherapy is not that common and is usually only applicable if the biomarkers discovered as part of the biopsy are favorable toward it. This is the time for patience. The more testing that is done the more specific the treatment plan will be.

[marcyh]

Thank you for your replies. I apologize, I forgot the most important info, the diagnosis: Bronchogenic adenoarcinoma

[Jenniferroseolson]

I’m not sure if this would receive the same treatment as lung cancer or not. I have Stage IV nonsmallcell adencocarcinoma, diagnosed April 2015 and doing great. I had chemotherapy before immunotherapy was the standard of care for the type of cancer I have. I have been stable on immunotherapy for more than three years. The side effects of my immunotherapy (opdivo) were very tolerable with fatigue being the one I had to get used to, to know that I need more rest than I did prior but still was able to participate in any activities I wanted to. The chemotherapy was difficult in the beginning but got much easier after the initial six weeks of Carboplatin. Best wishes,

[marcyh in reply to Jenniferroseolson]

Thank you. This is helpful. Yes, hers is non-small-cell as well. You seem to have a good result from your therapies. Her case looks quite advanced from what we know so far. There are a lot of variables from person to person. We will find out more tomorrow about what the recommendations are.

[DJL10 in reply to Jenniferroseolson]

Wow Jennifer. To know that you have been stable for 3 years is encouraging. I have stage 3b lung adenocarcinoma. Diagnosed 0ct 2022. I have read terrible stories of how quickly it has spread to the bones for some and has been frightening. I will be off my imfinzi in March which scares me to death to just sit and wait.

[Jenniferroseolson]

yes I did well remarkably well on both treatments. I was also incredibly sick at diagnosis with many liters of fluid filling my lungs and emergency care and procedures to lead to diagnosis. Best wishes

[marcyh]

Oh my, yours was far more advanced. Doctors keep asking my friend if she has symptoms and amazingly, she doesn't. We still wouldn't know except that she fell in June and broke her arm. Tests have been going on ever since. So this is an incidental finding.