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Posted

I learned early this week that I have a large-cell, slow growing cancer and that the "pneumonia" I kept having is lung cancer. I have a tumor in my right lung. The bone scan did not show that the cancer had met to my bones. I have had few conversations with anyone who could help me with information. My doctors said that they would decide to give me or not give me chemotherapy. No discussion of surgery has occured. I am having real problems maintaning oxygen in my blood. I don't know what to expect--although I went though Hodgkin's disease in the 70's, I don't understand the course of this disease. I feel as if I can put up a good fight--but I am aware that this one is a tough one and not to underestimate it. I've been getting sick over a long period. I basically knew that some of the symptoms I had meant something, but was told--oh that pain in your side--there's nothing there, must be a muscle. Huh? It could have tipped the doctors off. It didn't. And I have had mysterious blood oxygen problems for a long time--it wasn't taken seriously until I put one of those monitors on and walked down a hall. Of course, it plunched dramatically and they put me instantly into the hospital.

So that's my story. I need to talk to some friends in the same boat. Not such a nice cruise but I can help be supportive to you, and I welcome any news from all of you.

Thanks, tiffany1

Posted

Welcome, Tiffany. My wife has the non-small cell lung cancer and is doing well so far. She is 18 months from dx. Keep us posted on your progress and let us know what questions you have. Don

Guest Phyllis
Posted

I am sorry you are having to join this group. It sounds like you have been through a lot already. This is a great group with lots of information and tons of support to help you get through all of this. Hopefully, you will have more information re your condition very soon.

Posted

Tiffany,

Welcome to this wonderful, caring group.

Have your doctors staged your cancer? Why are they not sure about what treatment? You need to get the answers. Lung cancer is treatable and there are many survivors on this board. My husband is stage IV and is 19 months from dx.

Stay with us and keep us posted.

Ginny

Posted

Welcome, Tiffany,

I've only been here a short time myself, but you will find everybody here warm, friendly and happy to answer any question you have, lift you up when you're down and do a happy dance when you have good news. There is no such thing as a silly question or a silly feeling. This is the place where I have seen that you can just let it all hang out. I'm truly sorry for the reasons you had to join, but we are so very glad you found us.

Keep us posted,

God bless you,

Peggy

Posted

tiffany,

Welome. I'm sorry you had to seek us out but VERY glad you found us.

The course of your disease sounds very similar to mine. Have they told you what type of cancer it is (Squamous cell, Adno, etc)? Or what stage? Much of what treatment plan is selected will hing on those things.

If I have any advice for you it's to become as informed as possible about your particular brand and stage of this disease. There are going to be a lot of choices to be made as your treatment progresses and, unfortunate as it may be, YOU have to be the one on top of things. Here's a web sit (if you haven't checked it out already) that has a lot of good information:

The National Cancer Institue at: http://www.cancer.gov

Good luck with all this and let us know how things are going!

Dean

Posted

Welcome to a family you never thought you would belong to. This is a great group of people who always have each others best interest at heart and will stand by you through everything. Please feel free to ask questions, vent or just speak your mind.

Non small cell is a slow growing cancer so you do have a little more time in making decision but I would still opt for a second opinion if you are not comfortable with your Doctors. Are they doing anything for your lack of blood O2? Is it caused from lack of lung power or lack of red blood cells? That would make a big difference I would think. I get a shot of Arenesp every other week to boost my red cells which helps and from time to time I have gotten a transfussion of red cells which REALLY helps (for a week or so anyway).

Prayers headed your way and best wishes.

God Bless,

MO

Posted

Welcome!

I second the idea of a second opinion, if only for peace of mind. It helps to know exactly what you're facing, and NSCLC has a few different types.

Please visit often, and good luck in your battle.

Guest Billie
Posted

Tiffany,

Welcome aboard. I am also sorry you have to be here, but am glad you found this site. There are many kind and supportive people here. I agree with the others. You need to know what you're dealing with and how best to fight it. Good Luck.

Billie

Posted

Tiffany, I just wanted to join my friends in welcoming you to the family. I am also sorry that you have the need to be here, but it is wonderful that you found us. I know that cancer itself tends to diminish red blood cells, thereby making blood oxygen level lower, so it might not be the cancer in your lungs doing it, so much as just the fact that you have cancer. My mom was Dx with ovarian cancer last April, and that was the only indication that anything was wrong (we assumed it was her heart).

There is a wealth of information on this board, as well as on other websites on the internet. This information was so helpful when my dad was fighting the disease. And please try not to let the statistics get to you-every person responds differently to the treatments and also each cancer responds differently-what dosn't work for one person, does work for another and vise-versa.

Again, welcome to the family. Take care, and please keep us posted as to how you are doing. Deb

Posted

Hi, Tiffany,

I VERY strongly recommend that you go elsewhere for an evaluation by physicians who are considered Lung Cancer Specialists, preferably to a comprehensive cancer center. If you are already going to one of these, please consider going to a different facility for a second opinion.

WE are the Captains of our own Survivorships. We deserve to have a loyal, intelligent, supportive crew committed to us as we chart our course through these dangerous waters.

Best wishes to you....

Fay A. PS Did they happen to mention what cell type? Non Small Cell Lung Cancer is a Catagory, but it is further divided by cell type. This is important information, because the TYPE of lung cancer you have, coupled with the stage and your performance status will be what determines what kinds of treatments are available to you.

Posted

Tiffany,

I agree with many others that you need a second opinion and answers to alot of questions. Cell type, size, operable? And I would also ask what stage they think you are and ask for a PET scan. You had the bone scans but the PET will tell if it has spread to other parts of the body organs. That is really the only way they can stage you is to know if it has spread anywhere in your body.

You are not a statistic and should not rely on stats you read on the web. There are many survivors on here that according to the stats should not be here with us at this point. We are all individuals and should be treated accordingly.

I am sorry you had to join this group but glad that you found this wonderful group of people. They have helped me so much and I am sure they will you too.

Nina,

aka Nushka

Posted

Tiffany,

I would be in total agreement that you need a second opinion and to learn the particulars of stage/type...being in the care of the best medical team with whom you feel confident is essential. Don't assume anything because of statistics...you are an individual. We will all stand with you. I look forward to your posts on your progress.

Margaret

Posted

Hi Tiffany,

Welcome aboard.I am sorry about your diagnosis and sorry you had to find us too.I cannot add much to what others have said.Find a second opinion and a good doctor and cancer center and be aggressive about it.Time is important.Keep us posted.Praying for us all.TBone

Posted

Tiffany,

Ditto... You've got lots of good advice here, already. I just wanted to say welcome and I'm glad you found us. I hope you'll visit often and let us know how you're doing. We care!

BeckyCW

Posted

Hi There,

I was diagnosed 1 year ago with NSCLC and went thru the emotional ups and downs with all the tests. Bone scan, brain scan. pet scans, catscans. I have had 2 different kinds of chemo. Carbo and taxol and then gemabine with something< I believe. It killed the tumor and it shrank. It was rather a large tumor. 7.4 cm by 7.1 cm. I had a left pnuemonectomy on Aug 20th 2003 and just had my 9 month after surgery catscan last week and have been pronounced cancer free again. I have the checkups every three months for the first 2 years. I believe in the comprehensive cancer centers. You have to have confidence in your doctors. There are survivors out there. I am one. The surgery presents it's own problems but it is better than the alternative. Good Luck and God Bless.

Doug

Posted

Hi Tiffany,

Well, what to add that hasn't already been said....?

I want to welcome you to this family, and say how sorry I am that you had to hear that dreaded diagnosis. All I can say, is do not give up hope. Do not let up, and insist on being treated towards a cure. Too often doctors treat lung cancer patients as lost causes when realistically there is a chance for each and every one of us to defy the odds, to be that one in a thousand. From your post, I gather you have an isolated slow growing tumor. I would really question why it wouldn't be considered operable. The best chances and best statistics belong to those who can have surgery. I would 1000% Impress upon you the importance of getting second and third opinions. Get as many people involved as necessary until you feel you are getting the best possible treatment geared to ridding your body of all cancer cells. My husband has a local oncologist, but we've seen many other doctors at different centers all over the country. We now have roughly 4 oncologist who confer on all treatments and our options. It makes us feel more at ease knowing we are doing all we can to win this war.

Please keep coming back, as you have just joined a group of people who will be praying for you and caring for you and wondering after you from now on. You are family, so keep us posted.

God Bless

Carleen

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