Spoke with my Dad who isn't very clinical about sharing information.
The said in addition to the tumor in her throat that it's spread to the lining of her right lung, to the area between her lungs and either an additional tumor in her left lung or at least in a lymph node on the left side.Her cancer was originally in her right upper lobe, and partially in her middle lobe.
Due to a scheduling error they did not get to speak to the other dr who is handling her treatments. That will be next week I think. All the sudden I'm confused as to who does what. The dr. we've been talking to to monitor her progress and who told her about these tumors is an Oncologist? The person who will treat her with chemo/rad is a radiologist? Is that right?
They did sign the release so I can get real words for these things but if they mutter the word lining is there anything other than mesothelioma or whatever...?
Are these locations particularly bad? I'm somewhat shocked that this is how many she has when her last scan about 3 months ago showed nothing.
I feel like it sounds so bad.
Reply # - November 13, 2012, 04:43 PM
Reply To: More tumors than I thought
Oh no - could this mean that she has: Malignant Pleural Effusion
I kept saying mesothelioma to my dad and he said no they called it soemthing else. is that what it could be?
she's already having trouble swallowing...
Reply # - November 13, 2012, 06:25 PM
Reply To: More tumors than I thought
Mesothelioma would be a different kind of cancer. Malignant pleural effusion perhaps, but rather than try to guess and speculate, it's worth getting more information from her doc(s) if you can.
Once the cancer is metastatic, there aren't overwhelming differences that tend to make one location far worse than another. Being metastatic at all is really a driver in the management and prognosis, typically more than an exact location.
A medical oncologist tends to both provide the systemic therapy (chemo, sometimes oral and/or IV "targeted" therapies), and a radiation oncologist delivers radiation. A radiologist is a different specialist: they read x-rays, CT scans, etc. They are involved but are basically the people who interpret imaging for everyone else.
-Dr. West
Reply # - November 13, 2012, 08:27 PM
Reply To: More tumors than I thought
Sorry about that. I was freaking out a bit. No matter how prepared I think I am I'm just not. And these things make me feel like time is short and I hate thinking that.
I hope the doctor will send me the results tomorrow.
I'm sorry I can't keep it together on here. I feel like I'm making a mess of these boards.
Reply # - November 13, 2012, 09:47 PM
Reply To: More tumors than I thought
Carrie:
No apology needed. This all is so very stressful. So, vent away. . . I often do.
Anyway, I'm so very sorry about your Mom's progression. . .and I hope/wish/pray that her doctors come up with a really good treatment plan for her that is tolerable.
Laya
Reply # - November 14, 2012, 02:10 AM
Reply To: More tumors than I thought
I agree with Laya - you don't seem to be freaking out, and even if you were it would be understandable. Cancer can grow fast and is unpredictable. People are often shocked by how quickly it moves, and it's very hard, maybe impossible, to be "prepared" for what it's going to do.
I know you said you were in another state, but can you visit your parents soon? It sounds as if that is something positive and useful you could do, rather than worrying at a distance. Sometimes it is actually reassuring to see that the person is still themselves, despite all these upsetting medical details you are hearing. Hang on in there.
Reply # - November 14, 2012, 10:44 AM
Reply To: More tumors than I thought
Thankfully we're getting together at my brothers house for Thanksgiving and we usually have a great time. She and I bake while we enjoy mimosa's and we watch movies and eat great food.
We hadn't planned on Christmas in Boise because my husbands dad is not in great health either.
I spoke with the Drs. nurse and it was nearly imposible to take notes that make any sense now but its in the plural based nodual, rt hilar mass, something about inferior rt. lobe and nodes on her spine and neck. it is Adeno. The may not be testing it for mutations but she mentiones that it was stained for a lot of things.
I think I'm flying home for her apointment with the chemo dr (can't really understand how now I'm so confused as to what and who everyone is) but plan to be there for what he reccomends. I think I had read that aedno NSCLC in the Pleura wasn't particularly responsive to chemo.... Is it?
So to me this sounds pretty horrible but then again it's all sort of shades of horrible huh?
Reply # - November 14, 2012, 01:59 PM
Reply To: More tumors than I thought
Hi Carrie,
I'm sorry that you and your family are going through this. I just wanted to mention that location is probably not very important in regard to response from chemo. Its the underlying biology of the cancer that will be the determining factor in how it reponds. There just isn't a way to know for sure how she will respond until she actually has treatment. I see that you said originally chemo wasn't recommended but maybe once she sees the doctor her options will be more clear and they will have an idea what they can safely give to her. Good luck at the appointment. --mikem
Reply # - November 14, 2012, 04:44 PM
Reply To: More tumors than I thought
Carrie, don't worry about being inappropriate here. We are pretty accepting of those who are learning about a complex situation in a very short time. Plus you don't seem very frantic.
Below are a few links that may be helpful when having conversations with the medical staff.
On the subject of individual cancer biology, http://cancergrace.org/cancer-101/2012/03/17/the-principle-of-letting-t…
On the idea of molecular testing for drugs such as tarceva and xalkori, http://cancergrace.org/lung/2010/10/10/overview-of-molecular-markers-in…
On first line treatment, http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-thera…
I hope this helps,
Janine
forum moderator
Reply # - November 14, 2012, 09:32 PM
Reply To: More tumors than I thought
mikem is absolutely correct that there is not a significant difference in responsiveness of a lung adenocarcinoma based on where it happens to be. As he notes, it really depends on the biology of the cancer, not its precise location. You'll learn more when you can clarify whether her particular cancer is responding to the treatment being given. If the first follow-up scan during treatment shows the cancer is shrinking, that's a very favorable prognostic sign -- but you can't know that until the repeat scan, which is generally done about 6-8 weeks after the start of treatment.
Good luck.
-Dr. West