confused-newbie

[vassar36]

Hello Everyone,

Last month, my otherwise heathly mom, who lives in FL (I live in MA) was supposed to come visit me and the kids for columbus day weekend. Well she was walking funny and went to the doctor the day before the visit and they did alot of tests and then they did an MRI. Long story short in about a week they had performed brain surgry to remove one of the tumors and said she had cancer but they couldn't find the primary site. The did a PET/CT Scan and said just a few small things "lit up" but it was too small to determine where the primary site was. They did a bioposy on the brain tumor and said it was probably lung cancer. They just took some lympnodes? of of her lung area yesterday and they will biospy that to see I am not sure what? So far they have given a 3 month to 3 year diagnosis (which seems like a pretty big range...) What i don't get is how she seems so healthy but can have lung cancer and why does it not show up on the PET CT scan or any of the other test they did...has anyone had a simialiar situation? What did you do or what would you recommend. Mom is getting WBR and chemo with a pill. (just started both last week) I just feel so terriblly heart broken and confused and angry at the doctors who keep on saying that medicne is not an "exact science"

[trish2418]

So sorry to hear about your mom. I don't have answers to your questions other than to say that people much more knowledgable than myself will be along to answer your questions shortly. However, I did want to welcome you to the board.

I think it is not uncommon for there to be uncertainty regarding diagnosis, especially when the primary cancer is not evident. Hang in there, it sounds like your mom is having all the right tests done and hopefully the docs will have a diagnosis soon.

Where in FL is your mom located? Is she with a good cancer facility?

Let us know how we can support you through this difficult time.

Trish

[Welthy]

Hello and welcome to the boards,

So sorry to hear of this diagnosis for your Mom. Probably best to wait until the reports from the biopsy come in.

Oddly enough, my husband's brother had the exact same diagnosis. (He lived in FL too.) They never found any cancer in his lung, even with PET scans. They said it could have been as small as a pin-head and not able to be picked up on the scans. He started out with the mets to the brain, found because he had horrible headaches. He had one removed and the other two radiated, then went through 2 types of chemo. The doctors always said it was probably lung cancer, because it traveled to his brain (but wasn't primary brain cancer), then eventually to his adrenals and liver which, I guess, are classic lung cancer mets sites.

We always felt conflicted about the fact that they never did find the primary source, but they treated him with the same chemo regimens that my husband is taking. It was weird, but he did very well for almost three years. Don't let docs give you timelines, they can't even begin to guess how each of us works inside!

Good luck and keep us posted.

Welthy

[Nick C]

First I am very sorry. It is confusing how one minute everything is fine and the next...well you know.

The doctors have a way of seeing a brain lesion and having an idea of based on how it looks where it originated from.

My mother's lung tumor was relatively small...but it had travelled by the time we found it. (similar issue with motor function).

Time lines are funny things. You just don't know. I saw one hospital treated over 100 brain met patients, the bell curve for that hospital was 1 month to 40 months with an average with treatment of 5 point something months. Most here will say the stats mean nothing. And I both agree and disagree. I agree that they mean NOTHING to the amount of time the patient actually has, much like the "average male in the US lives to be 73 means nothing to me or MY survival. But in planning what to do both for the care giver and the patient, you may want to "act" and be vigilant accordingly. Know there is a health issue with potential for a rapid progression but at the same time there is potential for a "long" quality survival.

I pray for strength for all involved.

[Chanwit]

Well it seems to me that things seem to be moving in the right direction with her treatment, i.e. the surgery, WBR, and the Chemo Pill. The doctors seem to be agressively treating your mom.

B.T.W. what pill is she taking? Tarceva?

It's going to be hard to get all the details being so far away from your mom and not being there for the office and treatment visits. I picked up a lot of information by being there every visit. Someone needs to be keeping a log and actively participating as a close Care Giver if possible.

Cancer information sites say that after a cancer cell is initiated and promoted it can grow at the initiation site or the cells can spread through the lymp or blood system to distant sites like the brain, liver, or bone. If there is no cancer detectable in the lung then it's harder to pin point the primary site.

The primary site was the first word I heard from our oncologist when Lisa was diagnosed with cancer. As I look back now at Lisa's initial pathologists report I'm not sure how they came to the Lung Cancer conclusion. The tumor cell stains listed "possible primary sites as colon, gastrointestinal, pancreas, uterus, ovaries, but not limited these sites." TTF-1 is usually expressed in NSCLC but hers was negative.

So there is No Exact Science at least here when it comes to cancer treatment.

Things were moving too fast during those ealy days for me to know now why they decided to call it NSCLC but they did and we went for it.

Here is an interesting link about what patients want from their doctors:

http://www.livescience.com/humanbiology ... avior.html

Prayers for you and your mom. Chanwit

[MsC1210]

Hello and Welcome

I am sorry about your Mom's diagnosis but glad you found this site.

As you can probably see already there are many wonderful and caring people here who will offer you advice, answer your questions and steer you in the right direction. And of course there is so much HOPE and SUPPORT here.

Although I cannot answer your questions at this point, I will give you this little bit of advice. Don't pay attention to statistics. Stats are numbers and your Mom is an individual who will have her own unique reactions to her treatments. And as for the doctor giving her any kind of time line? There are so many people here who have shattered those numbers as well and are SURVIVORS. There is no reason to believe your Mom will not be one of those survivors. And we will be here to help her and you to achieve that.

Please let us know how we can help you and know that you and your Mom are in my thoughts and prayers.

Chris

[vassar36]

Thank You so much for all your kind replies. It gives me some comfort to know that there are others out there that went though similar experiences. I spoke to Mom today and she is keeping her spirits up and my stepdad is taking good care of her.

Trish 2418, Mom is in Miami,FL she 1st admitted to a hospital in Ft Laud. that we didn't like, (we couldn't get a Dr in the room when mom had a scary reaction to the dye from the PET/CT and they thought she might have been having a stroke etc. I thought i was watching my mom die), so we got her tranfered to Jackson memorial for the brain surgry, Dr Heros, and she has gotten refferals from that point on to other doctors b/c 1st they thought it was the primary source, and then they didn't know and now she sees a couple of dotors including a pulmany doctor, its hard for me to keep all these doctors straight.

Anyway thanks for all your kind words, all of this seems so sureal at times, and its nice to be able to express what i am feeling beacuse i feel like i have to hold it togther at work and with the kids.