fillise

Sending prayers your way for the strength to get through the next few weeks.--Susan

Max, So sorry to hear about your loss. ((Hugs))--Susan

Keep us posted. Thnking about you!--Susan

After I wrote my initial "angry" topic yesterday, I decided to see if I could do something to focus more attention on lung cancer--particularly in women. So I wrote this piece that I am going to send to all the neewspapers in Alabama. I tried to be midful of the fact that cancer is cancer and it all stinks, so that it wouldn't pit breast against lung cancer. Y'all had such wonderful and thoughtful responses yesterday, I thought you could give me good feedback. Oh yes--and guys, I'm not saying that lung cancer in men isn't important, but the discussion is going to be all about women's cancers so maybe if LC gets added to that list maybe we can get some more research funding.--Susan Lung Cancer is a Women's Cancer Too. I am deeply sorry to hear that Elizabeth Edwards’ breast cancer has returned. She’s a Democrat and I’m a Republican, but we are both women and we know that breast cancer is our cancer. Never mind that men can also get breast cancer, those little pink ribbons we sport every October, the “walks for the cure,” and the special pink shades of lipstick all tell us that breast cancer is the women’s cancer. Or so I thought until last January when I sat in a doctor’s office with my mother and learned that she had lung cancer. The words hit like a sledge hammer. As a seven year breast cancer survivor, she was preparing herself to hear that her cancer had returned and spread to her bones. Breast cancer; she beat it once and she could beat it again. Lung cancer, on the other hand, is a whole different beast. In doing some research after my mother’s diagnosis I was stunned to learn that lung cancer kills more women each year than breast, ovarian, and uterine cancers combined. The American Cancer Society estimates that in 2007 101,000 women will be diagnosed with lung cancer while a little more than 70,000 women will die of the disease. Even though more women (176,000) will be diagnosed with breast cancer, far fewer will die of it (40,000). One of the reasons for the improved prognosis for breast cancer patients is that all of the ribbon, walks, and fundraisers have raised awareness and generated tremendous sums of money for breast cancer research. In 2005 the federal government spent approximately $23,000 per death on breast cancer research. That funding has translated into better screening, earlier diagnosis, and more effective treatments for breast cancer. It’s a battle we are beginning to win. I wish I could say the same about lung cancer. In 2005 the federal government spent a mere $1,800 per death on lung cancer research. Do the math. That’s some $920 million on breast cancer research and a mere $288 million to study lung cancer—and that includes the 90,000 men who also died of lung cancer. My question is this: If lung cancer is the deadliest form of cancer, why so little money devoted to researching discovering effective lung cancer treatments? The simple truth is that there is a stigma attached to lung cancer. Because it is so closely associated with smoking, there is an assumption that lung cancer victims are responsible for their own illnesses. While the argument can be made that there is a variety of lifestyle choices that contribute to all kinds of cancers, lung cancer victims seem to be particularly singled out for theirs. But even if that were a valid reason (and it’s not) for shortchanging lung cancer research, it can’t account for the growing numbers of nonsmoking women who are being diagnosed with lung cancer. It’s been a little over a year since Dana Reeve died from lung cancer. From the time she went public with her diagnosis in August of 2005 until her death in March of 2006 there was some attention focused on this disturbing new trend. Current studies estimate that 1 in 5 women with lung cancer have never smoked (my mother is in that category) and that number is growing. On that horrible day we heard my mother’s diagnosis, her oncologist told us that the story about lung cancer and women is only just beginning to be written. It’s time to add lung cancer needs to the list of women’s cancers. We need ribbons and walks and, most importantly, we need funding. I’m grateful for the work that has been done to help us treat women’s cancers. In fact, one of the chemotherapy drugs being used to treat my mother was originally approved to treat ovarian cancer. In a very real sense, research on a particular cancer adds to the body of knowledge on all cancers. Lung cancer is one of the hardest cancers to treat effectively. One can only imagine what the development of effective treatments for lung cancer might add to the treatment arsenals for other cancers. The truth is that the news my mother heard in January was not all the different that the news Elizabeth Edwards just got. One may have breast cancer while the other’s cancer is in the lungs, but when you hear that cancer has spread or that it’s “incurable but treatable,” you understand that the basic issues of human survival are fundamentally the same. But the numbers are different. In my family both my grandmothers, five of my aunts, and my mother all had breast cancer and not one of them died from it. I’m hoping to be able to say the same thing about my lung cancer and my mother. In the coming weeks and months a lot of attention will be focused on breast cancer research and treatments as we root for Elizabeth Edwards to win her battle. But let’s not forget that there is another beast that needs to be slain and if we can develop the treatments to beat lung cancer, we will take a much larger step towards winning the war against cancer once and for all. The article was published with a few edits in this morning's (Sunday, April 1)Mobile Press Register. Link is at the end of this post. I have already received an email from a woman asking if we can join forces to raise money for Lung CAncer research--YES! http://www.al.com/opinion/press-register/index.ssf?/base/opinion/117541929577050.xml&coll=3 Published again today in the Montgomery Advertiser. http://www.montgomeryadvertiser.com/app ... 12/OPINION

You know, I felt like a cad when I posted this message, but the more I think of it, the more I'm inspired to write an op-ed or something. It's not that I want to trivialize breast cancer (or any other of the "women's " cancers)--heaven knows every woman in my family has had breast cancer (and deep, deep down, I am wondering if the radiation treatments from my mom's BC might be the cause of her lung chancer). But, the fact still remains that lung cancer will kill more women that breast, ovarian, and cervical cancers combined. I also understand that many of the most effective treatments for lung cancer were developed to fight other cancers (I believe the regimen my mom is on--carbo and taxol was used originally to fight ovarian cancer). BUT, maybe we'd have better survival rates if there were more research devoted to treating the unique features of lung cancer. That's all I'm saying.

I was involved in a very intense discussion about this topic on another board (a political one). A year ago I might have thought he should not run. But after my mom was diagnosed, one of the things she seems to want is to retain as much of her normal life as possible. To do otherwise, to her, seems to be saying that she is giving in to the disease. I know for another person, another couple the right thing to do might be different. But now that I'm living the scenaro, I'm willing the respect the Edwards enough to say that they are the most qualified to make this decision.

Congratulations! You are in inspiration for us all! Susan

I'm angry about the recurrance of Elizabeth Edward's breat cancer. I'm angry that she has to deal with this awful disease, but I'm even more angry that there is now another prominent woman with breast cancer. There will be more walks, more pink ribbons, more raising awareness. And yet, Lung Cancer is the leading cause of cancer deaths in the US. More women will die of lung cancer than will die of breat, ovarian and cervical cancers combined. A great deal more money is spent per breat cancer death than per lung cancer death in this country. I hate the fact that it feels like we are pitted against the other cancers in the race for funding, But look what increased funding has done to improve early detection and survival rates for breast cancer. My own mother is a 7 year survivor of breast cancer. But now she has a completely different cancer and no one has devoted the time or the money or the awareness to finding the cure of lung cancer. I'm angry because I feel like we are going to be lost again. . .

Amanda--My thought and prayers are with you.--Susan

Sorry you have to be here--but welcome. When my Mom's Onc told her that he wasn't sure he could cure her (stage IV NSCLC with mets to the spine), but he thought he could keep her tumor stable indefinately, she told me that for the first time she didn't feel like she was under a death sentance. That, of course, implies incurable, but it sounds like your mom will get aggressive treatment. Stable is wonderful.--Susan

It's not as off topic as might think. About a year ago my cat was diagnosed with Feline Chronic Renal Failure. We treated her as best we could, but I always knew i was only buying time. I was so upset wondering how many days together we had left. Then it danwed on me that I should be thinking about her illness completely different. From that day onward I treated every additional day with her as if it was a gift. Instead of subtracting time down I was adding time together up. It made all the difference in the final months and weeks I had with her. I finally had to let her go on Dec 2nd, but I was very grateful for the gift of her companionship every single day she was with me. It was still hard to let her go--the hardest thing I've ever done. Just a month later my mom was diagnosed with lung cancer and it seemed to me that maybe my cat's purpose had been to teach me something about life. So every day I have with my mom is a gift. None of us are promised tomorrow (or even all of today), so everyday I have with her is a gift, and I'm thankful for every single one of them. Crystal is teaching you someting just like Miss Belle taught me a valuable lesson. It's closer than you think.--Susan

Missy--let us help you. So many here seem to have been where you are now and many more of us know we may soon be where you are now. Let us help.--Susan

Heather, you are in my thoughts and prayers during this very difficult time. Susan

I understand your need to be with your Dad. My mother is in NC and I'm in Alabama. It's hard not to drop everything to go be with them. But I bet your Dad doesn't want that. As much as he would probably love to see you, he probably wants you to live your life. When my Mom was first diagnosed, I had extended my visit over the Christmas Holidays. She finally kicked me out and told me to go back to my life. I call just about every day, but I have to remember to talk about life, not just the disease. I suspect that being far away, and being a nursing student you will want to know everything about all the treatments and how he is feeling. I do too. I finally got on my mom's nerves. Now I have to remember to be attentive to how she is feeling, but to talk about the little things, the way we always did. If you can head out there for a visit, try to arrange it to coincide with a Dr. visit. I was able to go with my mom to her first appointments abd talk with the doctors and, more importantly, exchange phone numbers with them. I am very conforted knowing that I can call them myself if I need to. One other thing I've been able to do long distance is prepare questions. When my mom was preparing for her chemo, I emailed her and her best friend (who goes with her to appointments) a list of questions. The Dr. was terrific about answering the questions and explaining. His PA even wrote the answers to some questions so she could take it home with her. As the shock wears off, you will find other ways to help your Dad. God Bless you. You are where I was just a couple of months ago. You don't like it, but you learn to deal with it. This site is certainly more hopeful that almost any other website out there. I'm so glad you found your way here! --Susan

Sending prayers your way. I know this can't be easy, but as you do everything you can to help your mom during the next few weeks, I think everyone on this board will do everything we can to help you. God Bless.--Susan

Beth, Your story sounds so similar to mine. My mom also began having trouble walking with a lot of back pain right after Thanksgiving. One scan led to another and she was diagnosed with Stage IV NSCLC on Jan 5th. She did 15 radiation treatments to her back and just finished her second chemo treatment. My mom does one chemo (carbo/taxol)every three weeks and seems to be tolerating it fairly well. She is 77 and was in perfect health before the LC. Is your mom doing the chemo every week? That might explain why this is so hard on her. The weekend after my mom has her treatment she feels week and sore, but then begins to feel stronger by Monday (she has her treatments on Thursdays). I think it helps that she has a little time to recover between the treatments. Have you talked with the onc. about why he/she feels this combo/schedule is the best? Does your mom tell the Dr. how hard this is on her (my mom hesititates--I have his number and can call him myself if I have a question or I think there is something he needs to know)? I understand how scary this is. I've been the last couple of months being terrified, but this board really helps. Good luck--Susan

Finding the balance is hard. I actually went two full days without calling her this week and so yesterday morning we have a good store of "general life stuff" to talk about, not just the disease. It was a great conversation. And then she floored me. She mentioned that they didn't know for sure the mass in her lung was malignant! It's true they didn't biopsy the lung, because they biopsied the tumors in her spine and the pathology was consistent with lung cancer. I didn't challenge her, but how much should I gently try to help her understand? She says things that just stun me every now and then. The idea of cancer hasn't been that hard to understand, but the LUNG cancer has really been difficult for her to grasp. She wouldn't believe that she had anything in her lung until her radiologist took her back into his office and pulled her CT scan up on his computer. Now she has convinced herself it isn't malignant. I don't know whether I need to help her understand or not.

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.

Don, I just wanted to tell you that I love the photo of you and your wife. I am encouraged by her fou-year victory! Thanks, Susan

Hi Mike--I, too am new at this with my 77 year-old mom. What does your mom want to do? My mom did three weeks of radiation for mets to her spine. That was a piece of cake for her. She then started chemo and while that hasn't been a piece of cake, it hasn't been nearly as bad as she feared. Other than the first weekened after chemo (she takes one treatment every three weeks) she can go to her church meetings and out with friends. But she is committed to fighting this. How does your mom feel about this and what is she willing to do to fight it? It's important to listen. Good luck--Susan

Shelley--You are right, this is so very hard. I've done all the internet research. My mom's oncologist told her to stay off the internet and I think, in her case, he was right. When I first got on and started reading the median life survival rates for stage IV, I just sat at the computer and cried. Only after digging much much deeper did I find sites like this one where there are people who have beaten those odds. I fully believe my mother is going to be one of those, so I do all the research and send her questions to ask her drs. She is lucky in that her best friend is a nurse and goes with her to appts. to take notes and listen. I will go home for Easter and then, I hope to be there when she gets the results of next scan in May. Jen--Thanks! It helps so much to hear from folks struggling with the same issues. My family laughs at me for being bossy, but I have to take charge in order to get things done. Having been with my Mom for the first oncologist appointment, and hearing what she told folks about that visit (when she called my brother to tell him, she told him what she heard the Dr. say and then I got on the phone and said "let me tell you what the Dr. really said. . ."). I don't blame her, she was in shock. While we were sitting in the radiologists office that morning waiting to hear the results of the biopsy my father called to say that my mother's sister had just passed away. So mom heard "your sister died" and "you have lung cancer" in a span of about 15 minutes. She pretty much went into shock and shut down at that point. At any rate, I think it is helpful to have someone to help her listen and remember. I'm sure we will find our pace. Thanks--Susan

I, too, am new here, but the people here are fabulous about sharng experiences and information. You've come to the right place. The non-smoking thing is becoming more and more important. My mom is also a NS with lung cancer. Her oncologist said that the story of non-smokers and lung cancer, especially in women, is only now starting to eb written.

Shelley--I've been reading bout your amazing mom and you for several weeks. I am one of two children, so we don't have 5 to drive my mom crazy. My brother lost his father-in-law to NSCLC on Feb 22. When Mom was diagnosed he was watching his FIL in the final stages of his disease, so his reaction has been much different. He's good and attentive, but I'm the one Mom and Dad rely on to get things done. You make a good point about allowing our moms to enjoy their normal routines. The day after my mom was diagnosed she kicked me out of the house (I had delayed returning to my home by a week to be with her during the biopsy and for the results)and told me it was time for me to go back to my life. As if.

So glad for your good news!!! I'm all for good news!

Thanks everyone! It sure helps to have folks to talk with who have been through this. I'm going to do my very best not to call my Mom today. Before her second chemo I cut back to every other day or so, and she seemed to like that better. Again, you don't know (or, I guess, maybe you do) how good it is to hear from people who have been successfully fighting this disease. THANK YOU! Susan