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Need advice & doc info


Guest rocketito

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Guest rocketito

:?: I'm so glad to have found this board. My 72-year old aunt has stage IIIb NSCLC and I am looking for some advice for her. She was first diagnosed last summer, and went through chemo and radiation, with the result being shrinkage of tumors. Her current doc says the cancer is inoperable; I suspect that's because of lymph node metastases but can't get a clear answer from the doc on it.

She just had another PET scan and it found some increased metabolic activity suggesting more tumor activity in some areas, less in others. Her oncologist basically says "you will start chemo again", but my aunt can't get enough information about her condition or her treatment options to make that decision comfortably. The chemo made her feel fairly ill and caused problems with blood counts as well as a blood clot. She was also given the tamoxifen derivative (forgetting the name) and it made her VERY ill. She refuses to take that one again. (I can't really fault her for that.) I think she is unsure of how much hope to have, and how much suffering to trade for the chance of an unknown increase in time of living.

I know a tiny bit of medical information and terms (I work in cancer prevention) but I'm not a physician, so I can't help her understand as much as I want to. It's so hard for her to not have all the answers to her questions, but her oncologist isn't being terribly helpful. We've read several of the available books on lung cancer, but obviously, information on her particular condition and prognosis is not available there.

Does anyone know of a first-rate oncologist in the Topeka/Kansas City area she might go to? She has been to M.D. Anderson in Houston, but I don't think she's feeling well enough to make that trip again right now. She needs someone who will lay out all her options clearly, with reasonable discussion of the consequences of each. (Do docs ever do that by phone conference? I thought maybe I could arrange a virtual visit with the doc who saw her at Anderson, because what she really needs at this moment is a conversation rather than an exam, etc.)

Also, it's been so cheering to read y'all's sig files--to know that people have managed Stage 3B NSCLC for years as a chronic condition really gives me hope for my aunt. I am not at all ready to let her go yet, and the unspoken fear in my family is that she's going to die within the 18 months that her oncologist "gave" her almost a year ago. (I could have smacked him when I heard that.)

Thanks for listening to me ramble--and I deeply appreciate any thoughts or advice you have for me or for her.

Catherine in Texas

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Hi,

I just wanted to say that I am very sorry that your Aunt has LC. I don't have any experience with NSCLC as my Mom has SCLC, but i just wanted to say Welcome. Many clinics have an online second opinion, I know Dana Farber in Boston has one. You send your medical records and they give a second opinion to you or your doctor. I think it costs $600.00. I used to live in Overland Park Kansas and Kansas City MO, and I know that ther is and excellent Medical School in down town Kansas City, MO and someone said that there is an extensive cancer research clinic and information facility at the University of Kansas Medical Center although i'm not sure if it is the same campus. There are also several others in there seventies going through chemo. My mom is in her late 50's and she had a terrible time with chemo, but she was being treated for a different type of cancer. I wish you and your aunt all the best. I will keep her in my prayers.

Laurie

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Hi

So sorry to hear about your aunt and her problems. It's bad enough that she has the cancer.

Do you go to the doctor with her? If so, I would suggest you start taping each visit so you can go over the conversation when you get home. I found when I first got the cancer that I would always misinterpret what the doctor told me. Then my son went with me and started to tape our conversations.

Why are they treating her with tamoxifen? Is that the same drug they give breast cancer patients.

Good Luck and God Bless

Sue M

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Guest rocketito

Laurie,

Thank you for the good wishes! I know my aunt will appreciate them greatly; although she does not complain much, I think she feels rather alone with the disease. And I'm going to check out the online second opinion, too--that might be just what's needed.

Sue,

Unfortunately, she lives two states away, so I can't go to her appointments with her. Sure wish I could. My cousin (her daughter) goes with her, and that's a big help; they just aren't always sure what to ask. Taping the appointments is a great idea! I'm going to ask her to do that the next time she goes.

Tamoxifen (and/or a derivative of tamoxifen; I'm not sure) is being used these days with both breast cancer and lung cancer. My sense of it is that it has become available for general use with lung cancer only recently. It used to be available via clinical trial only, but they seem to have had some success with it, so it is more widely available. (I assume with FDA approval.)

I have heard rumors that it will soon be tested as a preventive treatment with people at higher risk of lung cancer; it's been successfully used that way with breast cancer, so they're apparently hoping it will work to prevent lung cancer in high-risk folks.

Thanks for the good wishes and ideas! I really appreciate any help I can marshal for my aunt.

Take care,

Catherine in Texas

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From one "Katherine" in Texas to another "Catherine" in Texas, welcome to the board! I'm sorry you find yourself here, but these guys are the greatest and my best source of "real" information and support.

All the others had great suggestions. The tape recorder, a medical release form for her dr.'s to sign so that you may be included in every aspect of her care- via telephone-. It's easier to be proactive and supportive if you know everything that is going on.

You said your cousins don't know what to ask, and I have a feeling that doctors tend NOT to divuldge every little detail or upsetting tidbit about a persons' condition that they consider to be terminal.

My dad's Dr. did that. Didn't tell ANY of us that it was suspected that my dad had mets to his lower spine. Although none of his most recent tests show anything, I found out MYSELF about the "suspicious" lesion on lower spine by reading his very first CT report! It's ridiculous, but maybe they're theory is "why upset them even more, they're gonna die anyway."

THAT"s crap. You DO need to know everything, and it will help in getting adequate care, treatments, and give you a better idea of what options will and can be made available for your aunt.

Talk it over with your cousins, if they are not going to be as proactive as you can be, then maybe a medical release and the tape recorder is the way to go. BEST wishes fellow texan, and welcome to our family. Keep us updated as we really do care here and you and your aunt / family will be in our prayers!

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Sometimes PET scans show false positives. 10%-15%

I am not sure if there is a way to confirm the PET scan

NEBRASKA

Kenneth H. Cowan, M.D., Ph.D.

Director

University of Nebraska Medical Center/

Eppley Cancer Center 600 South 42nd Street

Omaha, Nebraska 68198-6805

Tel: 402/559-4238

Fax: 402/559-4652

(Clinical Cancer Center)

Probably the closest NCI designated center

Best of luck

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