Operations Director, GRACE
Welcome to the new GRACE site!
Here we hope to provide a new and friendly place for our community members, that goes beyond what our old forum did. Our amazing faculty is building and we would like to continue to share their knowledge with others, to provide a place for those dealing with more types of cancers, including Lung.
Share our forum with others, and please consider this a safe place to discuss and ask questions about living with cancer.
Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009. Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education.
Wed, 05/22/2019 - 22:36
It was in May of 2004 that I came home from a doctor's appointment to tell my husband I had both good and bad news. "The good news is I don't have (whatever I went to the doctor for). The bad news is I probably have lung cancer." My husband, of course, was appropriately sad and supportive. The doctor referred me to a pulmonologist and an oncologist at the medical school she went to, and I had a lung biopsy which showed NSCLC (adenocarcinoma, BAC). I had a number of the usual treatments: chemotherapy and radiation therapy within 3 months, then hospitalization for the side effects or those, then lung surgery which just took out a couple of wedges of my left lower lobe because the surgeon changed her mind about removing my left lung, then a new oncologist, then Alimta, then surgery and radiation treatment for thyroid cancer (my second primary cancer), then a PET scan at the request of my new surgeon preparatory to more lung surgery to actually remove my left upper lobe. The PET scan showed two cancerous nodules in my right breast, which were confirmed by a biopsy right away. We went ahead with the lung surgery (first thingns first) and postphoned the breast surgery for 3-4 months so my husband and I could go on a 2-week cruise around south-east Asia. Against everyone's suggestion, I decided to have a double mastectomy instead of the recommended lumpectomy, and I'm glad I did, because it turned out there were three, not two, cancerous nodules in my breast (surely not because it was my third cancer?!!). No chemo or radiatiom after the surgery, just oral meds, and no significant side effects. (And whoopee I could throw away my bras and would never need to wear them again.) No treatment for the lung cancer for a couple of years, becaused progression was very slow. Then it "spoke up" again. Tarceva had just become available and we already knew I had the right mutation for that, so I went on that for two years until it stopped working for me. But by now Tagrisso had become available so another biopsy was done, and I now had the right mutation for Tagrisso. Hooray. (But doesn't it sound odd to cheer for a mutation?) I have now been on Tagrisso for two+ years, and my CT scans continue to show very slow progression (in all lobes on the right, plus lymph nodes in my neck and elsewhere) but such that my oncologist feels it's safe enough to cut CTs back to twice a year. It's been ten years now since I was diagnosed with lung cancer, and I'm tired a lot (but I was tired a lot because of the lupus, before cancer). I'm mostly feeling good except for arthritis and the fatigue. Oh, other things are still going on--I still have lupus, and I have developed mild heart disease, and I had a fall 3 years ago in which I hit my head and was hospitalized for a month while I learned to walk and talk again, and now I have wet macular degeneration (but I got into the first clinical study anyone has ever allowed me to enroll in--the lupus made me ineligible for lung cancer clinical trials) but those things are just life, genetics, and some past bad habits, I am convinced, and are unrelated to any of the cancers. (Well, the lung cancer is no doubt related to a bad habit, even though I quit smoking 30 years ago! and having had three cancers is probably related to a genetic mutation of its own.) I'm feeling surprisingly lucky. Despite everything, I'm alive and reasonably happy. I never expected to be immortal and I know that life ends the same way for everyone. I'm as old as anyone in my family has ever been, and while there are things I can complain about (damn but I'd like to do life all over again!), there's nothing I can do about some of them. They're out of human ability, or mine, at any rate, or they're in the past, and all I can do is try to deal with today and, with luck, tomorrow. I thank GRACE and it's fine staff, professionals, volunteers, and the other correspondents for all the support and helpful information I have received, even though it's been a while since I've been on-line (except to eavesdrop). I especially thank Dr. West, for inpressing and inspiring my oncologist (and me as well). I also apprciate the wonderful physicians and other health-care staff who have taken such good care of me over these past ten years. And I am so very fortunate for my wonderful husband and step-children, who have been enormously supportive and helpful along this path.
I don't know which name I've most often signed on with, Shy One or SoCal, but it's really Nan. And I'll aplogize for my verbosity. My typos I blame on the macular degeneration. It's take me three tries to get this down.
In reply to 10-year update. by shy one
Thu, 05/23/2019 - 08:09
It's so good to hear from you. I think you've most often posted here as SoCal, but what's most important is the news that you're continuing to fight the good fight, and doing well. It sounds as though you've had quite a bumpy ride (forgive the huge understatement!), but it appears that with the help of your family and medical team, you've overcome many obstacles. And we're delighted to hear that we may have helped in some small way.
All the best to you and your family, and feel free to update us at any time...we love to hear good news!
Jim C Forum Moderator
Mon, 06/03/2019 - 09:32
It's so good to hear from you and to know you're still living life despite the illnesses you fight every day. You know most people aren't faced with so many life threatening illnesses, you're quite the warrior. If the saying, what doesn't kill you only makes you stronger is true you are one strong person. Thank you for sharing your story it's worth so much to others to hear that you can live life well past the initial diagnosis of cancer or the 2nd or 3rd. Did you know Mark the man who used to build and maintain Grace back in the day also had 3 different cancers he lived through? You both must have a genetic mutation that drives that. Don, my husband is also still living life and probably has kicked his lung cancer. It's been almost 7 years since his last treatment and 10 years since his diagnosis. All the nasty spots in his lungs have stabilized and are probably scar tissue. I feel very lucky every day.
Keep us posted and I hope you're at the end of your new diagnoses.
Take care Nan,
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.