Vicky844 Posted March 10, 2017 Share Posted March 10, 2017 Hi, My name is Vicky and I was told 10 days ago I had lung cancer. They found secondary cancer in my brain and I had surgery last Sunday to remove the largest one. I am freaking out, positive one minute and crying the next. I have visits scheduled with radiologist oncologists and regular oncologist. I am trying to learn as much as I can, but have researched the stats and know the 5 year survival rate is less than 10%...which scares the hell out of me. I am hoping to find support and advice on how to cope with this. I am also worried about my husband who is as devasted by this as I am. Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted March 10, 2017 Share Posted March 10, 2017 Good morning, Vicky. I'm sorry about your diagnosis. I understand where you are mentally. I fought that battle last summer after my metastatic tumor was found. I chose an anti-depressant but I know that is not an option for everyone. It's a scary and overwhelming time for you and we all understand it. A good friend of mine was diagnosed with cancer last week and my advice to her was get mad, cry, scream, throw things, ask "why me" and try to move on. For me, once I got to the acceptance stage, I settled in to my new normal. We all deal with this differently but there are so many people on this forum who have been dealing with this for much longer and with much more grace than me. As for statistics, there is a thread on the NSCLC page that was updated in the last day or two. I don't pay much attention to statistics and Tom Galli posted an excellent response to another member's concerns about statistics. Please keep us posted on your progress. Tom Galli and LaurenH 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 10, 2017 Share Posted March 10, 2017 Vicky, Support and advice are what we are all about. Can you give us details about your cancer diagnosis? What type and stage of lung cancer do you have? Do you have a post-surgery treatment plan established? Susan provided some information on statistics but so many of us here have exceeded the survival statistics so they can only be considered as general indicators that do not necessarily represent your individual outcome. Click on the search box and look at the profile for michellep, MaryTD777, and Donna G note how long they've survived. Try and see yourself succeeding in treatment and acquiring a long history of surviving lung cancer. Of course, read about your disease. The resource at LUNGevity's website -- Lung Cancer 101 -- is one of the best and comprehensive introductions to our disease and possible treatments. As you navigate through that information, you'll likely have questions and this is a good place to ask them. Stay the course. Tom LaurenH 1 Quote Link to comment Share on other sites More sharing options...
LaurenH Posted March 10, 2017 Share Posted March 10, 2017 Hi, Vicky, Tom and Susan are right - this is a great place to find advice and support. Please feel free to post as much information as you're comfortable sharing about your diagnosis and treatment plan and any questions you may have. The members on this site are patients/survivors, caregivers and advocates who have a lot of experience with navigating a lung cancer diagnosis. Lung Cancer 101 (the section of LUNGevity's website that Tom mentioned in his post) is a great place to start looking for information. I am happy to help you find any additional resources or support that you may need. This site has over 11,000 members, which means that there are 11,000+ reasons to have hope! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Quote Link to comment Share on other sites More sharing options...
Vicky844 Posted March 10, 2017 Author Share Posted March 10, 2017 Thanks for the responses, the roller coaster i am on is crazy. It appears that I have innumerable nodules in my right lung. I was told Stage 4. It spread to my brain where I have a large lesion which was removed last Sunday. It was smaller than they thought and while there are about 4-5 spots, the radiation oncologist is excited about doing a whole brain radiation. My oncologist had a biopsy done on my right lung and has sent out for additional marker tests. CThe cells are positive for TTF1 and CK7 and negative for CK20 and CDX2 (whatever that means...Lung Cancer 101 here I come). She has spoken about using baby chemo until the 3rd marker comes back and has spoken about the therapy (she seems very optimistic)where the medication only targets the cancer cells. She is one of the top 50 specialists in the country according to Newsweek in 2015 and I feel she wants to destroy all of this. I will know more next week but the loss of control is daunting. I was just released from the hospital the day before yesterday and the stats from the other websites were very depressing, especially when being positive is an intergral part of treatment. There is so much to learn and my emotions are running the gambit...as well as trying to stay strong for family and friends. Again, thank you all for your quick responses. I have never been so scared in my life. Vickky844 Mally 1 Quote Link to comment Share on other sites More sharing options...
Tylalla Posted March 13, 2017 Share Posted March 13, 2017 Hi Vicky,Don't pay attention to statistics. They are outdated and just numbers. You are NOT a number and you DON'T have an expiration date stamped on you. Try and let that stressor just fall to the back of your mind. (Yes, it's always going to be there, we all have it, but just do your best to keep it pushed away.)Keep a notebook to take with you to appointments that has all your questions written down.. when ever you think of a question, write it down. It's easiest to keep a ring binder notebook with pockets so you can keep copies of Dr visits and test results. It's very beneficial in case you need to see a new dr or get a second opinion about anything. Plus, it helps you gain back some feeling of control over your situation.Try to find ways to relax. Meditation helps. Try reading a book in a quiet place, or playing a game with a significant other or friend or family member. Things to help take your mind off the worry and the stress.Do you have some one who can take the responsibility of your "caregiver"? This would be some one who would accompany you to appointments and be a second set of ears, writing things said down for you. (It can get really overwhelming and you will forget things said at Dr appòntments) Someone who can help you manage the financial side of treatment, and help you keep track of appointments and such. Ask if the place you are receiving treatment from has any Patient Advocates (sometimes they are called other things), they are a great resource for help with financial management, finding resources for you in your community and state, help with managing appointments and other stuff like that. They are a big help when it comes to the tangled road that is cancer.There are a lot of people here to help answer questions, lend a shoulder and just listen.I wish you well,MichelleSent from my SAMSUNG-SM-G890A using Tapatalk Vicky844 and LaurenH 2 Quote Link to comment Share on other sites More sharing options...
MaryTD777 Posted March 19, 2017 Share Posted March 19, 2017 Hi Vicky,For sure the first thing is to knock all of those stats out of your head. Those numbers are always based on the prior decade... in other words, even in 2019, you reallyProbably won't see any results newer than 2000-2009. Crazy, sad, but true. There were more things discovered in 2015 than in the previously mentioned decade! Much of the research done to make those discoveries was funded by the same amazing group that makes this site possible!! LUNGevity is FANTABULOUS!! Holler out anytime around here! Someone will surely be around to holler back soon [emoji38]Sent from my SM-N920V using Tapatalk LaurenH, Vicky844 and Tylalla 3 Quote Link to comment Share on other sites More sharing options...
Vicky844 Posted May 17, 2017 Author Share Posted May 17, 2017 Hi all! Just an update. I have finished 15 sessions of radiation to my brain to get rid of any lesions that were still there. I will find out in 6 weeks if it was successful. I am on chemo once a week...3 weeks on 1 week off and am waiting to send out for the markers to see if I can do the targeted therapy. I sleep a good part of the day and don't want to eat a whole lot. My husband is struggling with the additional things he has t do since I am so weak. I am trying to do more so he won't be too upset, especially with the dogs. Cancer has taken over my life. It is the first thing I think of when I wake up and the last thing when I go to bed. I can't dream of the future...only things that have happened in the past...funny huh? I know I have a long fight ahead. Just wish I had more infor on how I am doing so far, Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted May 17, 2017 Share Posted May 17, 2017 Vicky, Glad to hear you are progressing with your treatment. With cancer, I think the biggest issue we have is a loss of control. Our lives are dictated by scans and appointments and treatment, and recovering from it all. I'm a control freak and it drives me crazy! I have been able to let a lot go, and I'm making plans for trips and activities as if I didn't have that nasty cancer looming over my head. It will always be your first thought in the morning and your last thought at night, but don't let it consume your thoughts in between. Find something good in each day and enjoy each day. I understand your concern for your husband with his additional roles, but your priority right now is you. You need to take care of yourself (eating, sleeping, resting, hydrating) in order to fight this. Do you have any others who might be able to help you and your husband? Family? Friends? I know it can be tough to lean on others and ask for help. Tom Galli, Tylalla, Vicky844 and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted May 17, 2017 Share Posted May 17, 2017 Vicky, I let cancer take over my life and wasted 3 years wallowing in doubt and despair. So, try hard not to repeat my mistake. I've learned my attitude towards treatments, outcomes and living is the only think I can control. Stay the course. Tom LaurenH, Tylalla and Vicky844 3 Quote Link to comment Share on other sites More sharing options...
Vicky844 Posted May 19, 2017 Author Share Posted May 19, 2017 Hi Susan and Tom, I am trying not to let this consume my life, but it is difficult to do this. I have suggested to my hubby to go to support groups but he won't do it...not his style.It is also hard to look to the future sice I have no control and don't even know at this point what is going on. I am waiting for a cat scan to see if they got all the spots of cancer that were mets in my brain. I am also waiting for the markers to see if I can do the Keytruda. In the meantime I am getting full doses of chemo which causes me to sleep most of the day away...lol. I appreciate you guys listening and replying. Nice to know I am not crazy. It is hard to be strong for one's family and friends 24/7. Susan Cornett 1 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted May 20, 2017 Share Posted May 20, 2017 Vicky, Hang in there and keep us posted. Vicky844 1 Quote Link to comment Share on other sites More sharing options...
LaurenH Posted May 23, 2017 Share Posted May 23, 2017 Hi, Vicky, We're here for you! Please post an update when you can. Lauren -- Digital Community Manager LUNGevity Foundation Vicky844 1 Quote Link to comment Share on other sites More sharing options...
Vicky844 Posted June 22, 2017 Author Share Posted June 22, 2017 Hi all...It's June 21, and I have an update. My oncologist took scans of my brain an lungs. The cancer tumor on my diapham has shrunk for 12 centimeters ti about 1 centimeter./ All but one of the lesions has disappeared from my brain and the radiation oncologist says my progress is further ahead for the amount of time I have been in treatment...he called me an overachiever. I have 2 more chemo treatments and will be able to see what the doctor wants to to do. Thanks for your continued support. Vicky Hey everyone, Thanks for all the support. I go for CT scans on my head and lungs on June 1st to see what, if any, good the radiation and chemo has done. I got the markers back and do not qualify for Keytruda. They require 50 in the PD-L1 and mine came back with a 4! Figures! Anyway. the doctor is still pretty positive. I just need some good news from the doctor like some damn procedure has worked.Thanks for listening all...hopefully I will get some good news soon. Vicky Tom Galli, Susan Cornett and LaurenH 3 Quote Link to comment Share on other sites More sharing options...
Steff Posted June 22, 2017 Share Posted June 22, 2017 Happy to hear the positive news, Vicky! Way to be an overachiever!!! I hope that this positive news will help you and your husband to look forward to the future. Best wishes! LaurenH, Tom Galli and Vicky844 3 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted June 22, 2017 Share Posted June 22, 2017 That's great news, Vicky! Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted June 23, 2017 Share Posted June 23, 2017 Vicky, How about that! Great report. I'm using a phone to respond. Helping my daughter with her brain radiation so I'm struggling with this small keyboard. But the forum format on my phone starts with one's first post. I therefore took time to read yours. Interesting, indeed. So you are on the NED road and what does one do with the gift of NED? Stay the course. Tom LaurenH 1 Quote Link to comment Share on other sites More sharing options...
LaurenH Posted June 23, 2017 Share Posted June 23, 2017 Great news, Vicky! I'm so happy to hear positive results. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Tylalla Posted June 26, 2017 Share Posted June 26, 2017 What great news Vicky! I hope it continues and you remain NED for years to come! Blessings, MichelleSent from my SAMSUNG-SM-G890A using Tapatalk Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
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