Supporting my mom - 1287999

jwelford
Posts:10

Hello,

I am new to CancerGrace, and am here because two weeks ago after months of shortness of breath and being tired, my mom finally went to the doctor where they found a 'fist sized' mass and pleural effusion (no cancer found when they took a sample) in her lung during a CT scan. She had an MRI and PET scan this week, where the only other thing they found was small spots on her hip bones, which the doctor said could be inflammation. The doctor said it was stage 4, inoperable, and he is doing a biospy tomorrow which will also allow him to look and see if its in the esophagus (she is having much difficulty eating and breathing, needs to lean forward to eat). He thinks with chemo treatment (she cant have any more radiation due to previous breast cancer treatment) he can shrink it down.

To end a long summary, I think my question is: If the doctor is not certain its in the hips, how is it considered stage 4?

Thank you all,

Joleen

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JimC
Posts: 2753

Hi Joleen,

Welcome to GRACE. I am very sorry to hear of your mom's diagnosis. I know how difficult a time this is for all of you, and each person (whether patient or loved one) reacts to the news in their own way. There really isn't an "inappropriate" way to respond to a cancer diagnosis.

Since her doctor does not necessarily feel that the finding on the hip represents cancer, the staging is based on the presence of the pleural effusion. Although pleural effusions can be caused by a variety of conditions, in the context of a presumed cancer diagnosis the effusion if suspicious for cancer. If I understand your post correctly, a sample of the fluid did not reveal cancer cells, but it's not uncommon for such testing to produce a false negative result. On the other hand, the cancer diagnosis is not confirmed until a biopsy sample is taken and tested.

If the biopsy does confirm lung cancer, it is likely (and recommended) that the tissue be sent for genetic testing, as there are treatments which target certain mutations, notably EGFR and ALK.

I wouldn't place too much emphasis on the timelines provided by your mom's doctor. Statistics exist, but they represent the historical experience of large numbers of patients, while each individual patient is a different story. There have been many advances in the treatment of lung cancer in the past several years, and some patients are living quite a bit longer than any patients had in the past.

As you and your mom move through the process of confirmation of diagnosis, genetic testing and selection of the appropriate treatment plan, please return with any questions you may have, and keep in mind the possibility of seeking a second opinion to confirm what her doctors are saying.

JimC
Forum moderator

jwelford
Posts: 10

Hi Jim,

Thank you very much for your insight! She had the biopsy yesterday, which confirmed small cell lung cancer.

I will have to see if the tissue will be sent for genetic testing, and am also curious to see if they will do PCI. I know they are checking to see if she maxed out on radiation, but have not heard back yet. Luckily, it is a great hospital with quite a few satellite cancer treatment centers, so I am trying to be optimistic regarding outcomes.

Thanks again for writing to me, it really helps to talk about it.

Joleen

jwelford
Posts: 10

Jim,

I have an odd follow-up. We received a call from the doctor tonight- apparently the information we received yesterday was wrong. What we found out was that the Pathologist who was in the room during the biopsy could not tell what it was. The sample had to be sent out for, I assume, additional testing. The doctor is still thinking it's cancer and is proceeding as such, and we will not have the report/results until Tuesday.

Is this normal? For a pathologist to not be able to tell what type- or if it is cancer- by looking at a sample during the biopsy? What else could it be?

Thanks,
Joleen

cards7up
Posts: 636

Did another pathologist confirm that it's SCLC? I just responded to your other post. If it is SCLC, they don't do mutation/genetic testing as there are no targeted therapies yet for SCLC.
Take care, Judy

jwelford
Posts: 10

Hi Judy,

I was trying to find that other post again to write to you, so I'm glad you found this! No, we will not have the results until Monday or Tuesday. Do you think it's odd that they didn't know what it was by looking during the biopsy?

Joleen

JimC
Posts: 2753

Hi Jolene,

Yes, at times the initial indications from a biopsy are somewhat unclear, and especially so if something like SCLC is suspected. Small cell lung cancer is part of a continuum of cancers called neuroendocrine cancers, which are discussed here. So just where to place this in that continuum may be the uncertainty.

JimC
Forum moderator

cards7up
Posts: 636

I agree with Jim. My first thought was that it could be a different type of neuroendocrine cancer and not specifically SCLC or it could also be mixed. Best to wait for the next report.
Take care, Judy