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Peg24

I really need to talk and hear others stories

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My name is Peggy and 3 weeks ago my mother was diagnosed with lung cancer and has been given less than 6 months to live.

She is 77 years old and has smoked for 56 years. The doctor told her it covers upper and lower lopes of right lung and a mass shows in liver and chest wall. My mother has been a very healthy women her whole life and just never went to the doctor for much. I have noticed in the last year that she has been losing weight, but just thought it was due to her getting up in age. She started having some arm and shoulder pain a month ago and decided to see a doctor. She went to her family Practice doctor and he ordered a CT scan. This doctor now has pretty much written her off. He said he could do a biopsy of the liver to see what stage is was in but didn't recomend it because of the risk of infection and bleeding. He did not even refer her to a specialist. Just gave her pain pills and zanax and told her to come back in 2 weeks.

It is so hard to accept because my mother does not look sick. She is not bedridden or having problems breathing or she doesn't even cough like a smoker often does. I just have had a hard time accepting this. I ordered her some natural Goji juice to at least see if this would help her pain as the doctor is not giving her any options for treatments. I begged her to stop smoking now so we can let the juice work and bless her heart, after 56 years of smoking, she has not smoked in 3 weeks.

I just feel so helpless now and I just don't know which way to turn. The natural juice is helping to keep her appetite up, but everytime she has a pain of any kind, she falls into depression again and starts that feeling that its over.

I feel like she needs to be seen by a specilist. Can anyone share anything close to this story? I just feel it is too early to just throw in the towel on her now. If she were lying in bed, under oxygen and hospice help, I might say its time....but I don't believe it is this way at all.

Thanks for listening

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Hi Peggy: Welcome to the club no one wants to belong to but we're glad you found us. There will be a wealth of info & support for you here. So sorry to hear of your Mom's diagnosis and the fact that her dr doesn't want to be pro-active. The main question is 'what does SHE want?' If she wants to seek treatment then try to get her in a comprehensive cancer center for at least a 2nd opinion (see our profile)

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Peggy-

Get her to an oncologist right away. There are many treatment options available to your mom. If you read through this site you will see many survivors of stage IV lung cancer. Good luck and keep us posted on how things go. We have several members in Florida if you let us know what area you are in someone may be able to suggest a place to go.

Rochelle

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Thank you for your replies so quickly. She lives in Jacksonville. I know that Mayo Clinic is there.

My mom I believe is willing to get another opinion, but since she has been given such a short time to live, she is not interested in chemo.

If there is anyone in this support group that is from Jacksonville that has survied lung cancer at this age, please contact me so I can speak with you.

Thanks

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Peg,

Welcome and sorry you had to find us. There is a section on the boards for Looking for a Buddy that you can put a post. If there is someone in your area, that is a good place to look.

Wishing you the best and hoping your Mom will do well. If she gets a second opinion from an oncologist, you may find she is willing to try chemo. You will find that the Doctors time frames mean nothing in real life. There are many stage IV folks doing okay on these boards.

Welthy

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Peg,

Welcome - sorry you have to be here, but as others have said, this site is a wealth of information, experience and support.

I agree with the second opinion - there are so many stories of hope and survival- even with stage IV. I find it unfortunate that your doc gave a time related prognosis - this obviously is upsetting, and puts you and your mom in the mind frame that there's nothing that can be done - I'm not sure I buy that.

As for whether or not your mom wants chemo - it's obviously her decision, but for what it's worth, my Mom just finished chemo and radiation (she's 83 years old) and had very little discomfort.

good luck to you and your mom

Jen

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Hi, Peggy, and welcome to the LCSC!!

I think the family practice doctor simply hasn't kept up with the remarkable advances in lung cancer treatment that have occurred in recent years. Otherwise he wouldn't have made such -- I'll be charitable here -- such uninformed statements.

I feel like she needs to be seen by a specialist...I just feel it is too early to just throw in the towel on her now.

Your instincts are exactly correct. A pulmonologist and then possibly a thoracic surgeon would be a logical sequence, followed by an oncologist after cancer has been confirmed and the cell type determined through biopsy. Here's what I suggest as a project for this weekend:

Spend as much time as you can on this site, giving special attention to the profiles at the bottom of the messages, looking for members whose initial diagnosis was advanced lung cancer (this would be called "extensive" for small cell lung cancer and "stage IIIB" or "stage IV" for non-small cell lung cancer). Become familiar with the various tests and consultations each person went through in preparation for treatment, and what that first treatment was. Also note the large number of people who went for second (or third or fourth) opinions before treatment actually began. Then you'll see what I mean about your instincts being correct. This stuff about giving her 6 months is (excuse my French) a bunch of ##%%!!

Next, show your mom what you've learned and let her read the stories of some who are doing quite well years after that first shocking diagnosis (this will include a number who were not in nearly as good health as your mom is right now).

Third, if your mom agrees, expend as much energy as you can muster getting your mom medical care which is up to the standard she deserves.

Keep us posted on new developments, ask questions about anything that's not clear, and save yourself a lot of future typing effort by starting your own profile on behalf of your mom. Click "My Profile" at the top, scroll down to the "Signature" block, enter/update your information, and make sure that "Always attach my signature" is marked "Yes."

Best wishes and Aloha,

Ned

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1) DITCH THE DOCTOR!! ypu ned to find an oncologist right away that will fight this disease as aggresively as possible. Do not listen to a doc who says "You have so many months to live". if that was true a lot of these great caring folks here would not be here. Doctors do not know how long we have woith a terminal disease. Only God knows.

2) Mayo has a great reputation. Go there and get in to a Oncologist. Ther is so much going on in this field right now. Every extra day together is a blessing. Enjoy it to the fulllest.

3) Click on My profile button on the top of the page. You can start a profile with all of moms treatments, Diagnosis, test results and any thing you may want to add in there.

4) Read the Good news and Inspiration Forums. Those 2 forums are full of Hope, Promise adn all the good things you need to hear about right now.

5) Stay in touch with us. The more we know the tmore we can help with side effects, Chemos, Radiation treatments, etc. knowledge is power.

Sending Prayers for everyone around you right now. Hope things take a turn for the better.

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You have gotten loads of great advice here, Peg. I would just add that there MANY folks in their 70's AND 80's who have been ~ and are being ~ treated successfully. Get with a more positive team.

Kasey

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Hi Peg, Everyone here is right, forget how long they give you...only God knows. She really need a 2nd.opinion. There is a lot & lot of people who live a long life with cancer.

Best of luck & prayers

bucky

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Hi Peg,

I live in Jacksonville. Interestingly there have been some suggestions that cancer progresses slower in people that are a little older. Also, age does not seem to be factor in treatment success. But just like everybody else here, I strongly recommend you get her to an oncologist ASAP. You have lots of choices including Mayo. I received opinions from Baptist and St Vincent’s cancer centers. I choose St. Vincent’s because they treat the most lung cancer patients each year (even more than Mayo in Jax) and because I just really liked the doctors there. I will PM you with more information. Your mom is in my prayers.

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Thank you all so much for the advice. Now, I just have to convince her of the same thing.

Would anyone here be willing to drop my mother an email and invite her to this site? I believe she would be willing if she heard stories from others who have experienced what she is going thru.

She checks her email everyday and I wouldn't mind you even telling her that I asked you to.

I will be glad to send you her email address. I really think this will help.

Peggy

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Peggy,

I would suggest a second opinion, that is, after you get a first opinion. It does not sound like your mom has even been diagnosed properly. In July 2005 I was told I had 16 to 18 months with treatment and I would be very sick from the chemo. I got the treatment and I never had a bad day, still here feeling great. Get your mom to Mayo and then you still may want a second opinion. I live in Naples Florida and your mom can talk to me if she likes. She can fight this disease and have a very good quality of life. If you have any questions just ask.

Stay positive, :)

Ernie

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Hi Peggy, I am pretty new here but I wanted to let you know that my 67 year old mom has recently started chemo and is feeling MUCH better than she was in the 6-8 months before being diagnosed. The chemo she is on has been very easy on her system and she is once again enjoying being able to take short walks, lunch with friends and so many other things she couldn't do before starting the chemo. She has also been diagnosed with stage 4 NSCLC and we don't know how long she has. She certainly had no desire to ask the Dr. and does he "really" know anyway! All I know is that the chemo she is on is helping her to live a much more fulfilling life. She could barely get out of her chair in early January when I went home to help her while she was having all her tests done. DEFINITELY get a 2nd opinion and I'd be happy to email her if you like. Unfortunately, my mom has not expressed an interest in joining this site (I'm sure she will in the future) but I am happy to let your mom know that there are other options out there. Good luck to you and your mom. It's a very scary time. Shelley

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Welcome, Peggy. As many have said, your mom needs to see an oncologist soon. The family doctor is not equiped to handle lung cancer. My wife was 65 when she was diagnosed, and her prognosis was 9 months since she had Stage IV NSCLC, with many bone metatheses. She lived a very productive life for 4 years. I wish you and your mom well. Don

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Your mother needs to ditch the doctor who gave up on her without even a fight! That doctor obviously doesn't know or understand anything about lung cancer! Your mother neeeds to see a pulmonologist (lung doctor) and an oncologist to discuss treatment options. There are ALWAYS some options. If you read through the postings from many of us here on this site, you will see that many have had successful treatments.

I think the best thing you can do right now is lead and guide your mother to the doctors, and AFTER THAT, take the first step yourself to get her registered on this site and show her how to post, etc. I think that is a good plan.

Barb

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All of you have been so kind and thoughtful. I will be going to see her on Monday and I will get her to another doctor (specialist).

I will keep in touch and let you know what we find out.

Thanks again,

Peggy

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Peg, My mom is 77 years old with stage IV NSCLC with mets to the spine. She did three weeks of radiation to the spine and just finished her second of four initial chemo treatments. She is tolerating them well. Ae should NOT be a factor is determining whether to treat or not. There are many people here who are successfully fighting even advanced stages of this disease. You've gotten good advice here. An oncologist can help your mother understand her options and decide on the best course of action. Come back and let us know how she is doing.

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It's Monday about noon and I just arrived at my mom's here in Jacksonville. I have been gone for only 4 days and I cannot believe the difference in her from when I left here.

She says she hasn't been able to keep anything down. She is having problems even swallowing anything. I was here 15 minutes and she layed back down and went to sleep again.

I tried talking to her about getting a second opinion and she says she knows her body and she has cancer all over it and I just need to accept she is dying because she has.

She also says her insurance will not cover Mayo Clinic. Myabe she said , she could see an oncologist.

I feel so helpless right now. I have 3 older brothers and they are flying in this week to see her. I hope that they can convince her.

I will stay in touch!

Peggy

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Peggy, it can be so hard to convince someone else that they might not be right about something like this. Before my mom had any of her tests in january, she said the same thing to me....that she felt she had cancer "throughout her body" she really believed this because she was so tired all the time and had aches in various parts of her body. Luckily, she did agree to have a CT, MRI and a PET scan and she did NOT have cancer "all over" She had masses in both lungs but nowhere else. As I said in an earlier post, she feels so much better since she started chemo. I wish you all the best with your mom. So many people remember stories from chemo from years ago and would rather do nothing at all. If that is the case with your mom, she needs to know that chemo can be much easier on your body these days. Shelley

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Peggy, number one, there is no reason for her to not see an oncologist...regardless of whether the GP is right or wrong. And oncologist will tell you the right treatments available so certainly do that.

I know you are having trouble accepting the diagnosis. It does come out of nowhere.

One step at a time peg. Get to an oncologist...

Let them come up with a plan...you don't like, go get a second opinion with anotehr onc...but do that first.

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I know what you are saying, I just have to convince her of it.

I think she will go..I am working hard on it as we speak.

The big difference I see in her now than 4 days ago is she can't hardly get anything down and keep it down. She also has increased her pain meds. Having alot more pain than before.

Thanks

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Peggy:

The LCSC has come together for you and your mom in a big way. I've read this site daily since I joined last September, and I can recall only a couple of times the messages have been so intense, focused, and unanimous. I have NEVER seen so many members lined up against a particular physician ("ditch the doctor," "gave up on her without even a fight," "doesn't know or understand anything about lung cancer," "does not sound like your mom has even been diagnosed properly," "such uninformed statements." It's one thing for a qualified specialist to give an opinion that comes across as blunt and insensitive, but it's quite another thing to get a bleak prognosis from someone who is neither certified nor even reasonably up-to-date in a specialty that changes as fast as lung cancer. It might even cross the line into malpractice.

I know you're doing as much as you possibly can, and my heart truly goes out to you. Maybe your brothers can help you turn the tide. If your mom is in constant pain, that can really warp her perspective, especially if she doesn't yet see any hope for improvement. My very best wishes and Aloha,

Ned

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