LouT

Lori, I went through CT Scans, a failed CT Guided biopsy, PET Scan and none of them produced a solid result (negative or positive for cancer). At the end of the day they used the surgical approach and confirmed a NSC Squamos tumor. I had a lower-right lobectomy (VATS) on May 2 2019...and have been NED since. This coming Monday is my first annual scan (all others were either 3 or 6 month scans) and my hope is for NED to continue. The diagnostic process can be long, frustrating and even scary, but we needed to know what we are dealing with so we can be treated. You've heard from a number of folks and your decision to do the VATS is a wise one. I had written a blog called "Thoracic Surgery Tips and Tricks" to help you prepare for, get through and recover from this (thoracic) surgery and it can be found here. Best case for the procedure the finding is negative so they close you up, worst case they get that darned thing out of your body. Stay strong and please keep us updated. You know we'll all be pulling for you. Lou

Judie, I personally have no experience with a mutation for my LC, but we do have a forum for KRAS and somebody there may be able to help you out. You can find the page here. I hope you find what you are looking for. Lou

Lori, Sometimes CT Guided Scans are still not good enough to get a good biopsy specimen. From what you posted I failed to see that any of the specimens yielded a "usable biopsy sample". Please tell us if your Pulmonologist looks to another avenue to get a diagnosis. Lou

Lori, You've got some great feedback and information so far so I'll just welcome you to the site and let you know that if the nodule is found to be positive then we have much we can share with you. If it is a positive biopsy it is in your best interests to educate yourself to the highest degree possible. We'll be there to answer questions from our own experience and also to point you to some of the great information we have available on the website. Keep us updated and we are all hoping for a negative result. Lou

Anytime one hears about growth of lesions/nodules/tumors it's not a good thing. But more important will be what the ONC has to say about the scans, potential treatments, and anticipated outcomes. My prayer is for hope in the discussion and always remember; anytime your brother feels the need for a second opinion he should get one. Lou

LeeLee, So sorry to hear about the Keloid scar. Until you mentioned it I had never heard about one before, but there is a short article on the Mayo Clinic Website about this issue and it can be found here. I hope they come up with a solution for you and soon. I'll watch this thread to see if others have had the experience. Lou

Many of us advise fellow members in treatment to look into Palliative Care as part of your medical team. Lungevity has some very good information (in a short article) on this and it can be found here. Quality of life can be as important as quantity of life so please check it out and consider this during your treatment. Lou

Every time we have scans coming or are awaiting the results we call our condition "scanziety"...so welcome to that club. NED is great to hear and your diagnosis story is not unusual. Many here were first diagnosed with everything from allergies to pneumonia until a final and more accurate diagnosis was made. Keep sharing your story and I hope to see you in the forums often. You have much to offer others; the story of your journey can become a guide to help the next person through theirs. Lou

Susan, Thank God that your friend had someone to speak to who can understand exactly what she was feeling as well as being able to provide some sound experiential advice. You are a blessing for her. Lou

What wonderful people you've had in your life. It's hard to call someone who went through what you went through "blessed", but if you were going through something this existential and frightening you couldn't have asked for more blessings around you. What an inspiring essay! Lou

Hi Samantha, Welcome to the club nobody wants to be a part of, but here we are. Your feelings are to be expected. I often felt that regardless of how many people were around me or the support i had I was alone with this terrible disease. But the group of people here at Lungevity proved me wrong. We have people here who were diagnosed many years ago and are still here to share their stories and strength with us so, in many ways, we are a blessed group. You haven't told us much about your diagnosis or your treatment plan, but if you have any questions please ask, there is always someone here who will be able to share their own experience and knowledge with you. In the meantime I recommend you read a blog titled "10 Steps to Surviving Lung Cancer; from a Survivor" it can be found here. I look forward to learning more about your situation and supporting wherever I can. Lou

Kamoto, You're getting some good coaching from Judy and Karen. For my part I just want to wish you the best outcomes for all the treatments you get and to reinforce that adding "palliative care" to your treatment team is a wise move in order to help maintain and good quality of life as you go through what could be otherwise more difficult treatment. I look forward to your next update. Lou

Tammy, Good to hear from you again. This certainly can be a scary and difficult ride. Having Covid really does suck. I'm just over it myself and despite hearing how much milder it has become it was still like having a strong flu. Please do all necessary (it sounds like you're doing good things now) to keep your body fit to fight the Covid and meanwhile you're in my prayers for more positive news from your upcoming September scan. Stay in touch. Lou

It sounds like you've had a good surgery. Now the important thing is to recover well (keep using the spirometer and move) and get your follow up scans. Most importantly is to get back to life. Lou

Jeanne, I fully understand the "something is growing in me" feeling. I had to wait for three months for my nodule to grow before they finally decided to do the lobectomy. The stereotactic radiation appears to be a very effective treatment to fry those suckers and you'll hear from others here who have had it with very good results. In the meantime I'll add two things. A second opinion is always a good thing to do so please get it if only for your own peace of mind. Do your best to try and not let this situation keep you from living your life. Get whatever support you need to help you to cope with the fear and anxiety this disease causes us. From now until a treatment is implemented you have a right to enjoy your life. Do things that make you happy, eat healthy, get rest, socialize. You deserve to have happiness in the life you are fighting to keep. Lou

This is great news. Congratulations on NED. It's the favorite message around these parts. Lou

Hi Jeanne, Welcome to the club nobody wants to be a part of. Yes, you surely do have some heavy experience behind you. I was DX'd with Stage 1 in 2019 and had RLL in May of that year. So far I've been NED (No Evidence of Disease) but we are always aware that this is a recurrent disease that can come back for us again. Like you, I've had cancer before as well (Colorectal in 2010). In my case the treatment was a resection that has been successful. We have a great family of survivors here that have had many different experiences. So whatever questions you ask there will be someone who can share firsthand information to help you though this journey. You said you're "monitoring" ; does that mean new nodules? If so, can you tell us more about them? We'll be here for you if you need us. Lou

Darva, Welcome to our forums and sorry to hear about your mom's condition. You've got some good counsel already so I'll leave you with two items for now. Here is a blog titled "10 Steps to Surviving Lung Cancer; from a Survivor" with valuable information you can find here. As someone with a family member who has lung cancer you may find some useful information and support in our "Caregiver's Support Center". This can be found on this page. Stick around, ask questions and you'll find a varied group here with a wide breadth of experiences that can help you and your mom on this difficult journey. Lou

WP11, Sorry you need to be here, but glad that you found us. You've already gotten great information from Michelle and Lily and I'll add another piece here. The is a blog titled, "10 Steps for Surviving Lung Cancer; from a Survivor" and it can be found here. There is a lot of practical advice here from a member who was diagnosed with Stage 3 over 18 years ago and has since been declared "cured". Stick around and ask any questions you have. You'll find a varied group here that is great at sharing and supporting. Lou

Jill, It always feels good to get a treatment plan in order. A while back I wrote a small piece call "Thoracic Surgery Tips and Tricks" that contains recommendations pre-surgery, in-hospital, and post-surgery. If surgery is recommended it will prove helpful and can be found here. Please keep us updated and ask any questions you may have. Lou

Kamoto, Glad to hear you are on the "treatment train" and that it is starting out pretty much without incident. Please keep us posted as you go through and ask any questions you may have. My treatment was surgical but, as you know, we have a wide variety of treatments in our Lungevity Family. Lou

Julie, I'll message you privately. Lou

Julie, Welcome to our forum and I'm sorry you need to be here. Let's get down to brass tacks. You need a diagnosis. If your doctor won't do a biopsy, even a liquid one then you need another doctor. Another wouldn't/couldn't answer then you need another doctor. Whatever this is you need a medical team (normally headed by your doctor) that listens to you and responds to your needs. PET scans are helpful but never definitive. A biopsy is the only real way to understand what the growth is. The only thing a surgeon could do is to perform surgery, take a "wedge" of tissue out and test it and to determine if it is malignant and then determine to do a lobectomy or whatever needs to be done. There is a page here on Lungevity that has a lot of information on Diagnosis and can be found here. Please keep us updated and ask any other questions you may have. Lou PS: You don't need to smoke to have LC you just need to have lungs.

Hi JJFrank, Welcome to our forums. Glad to hear about your success with Keytruda and that you're doing well. We do have a section where folks share their stories and information on on Immunotherapy and it can be found here. Lou

Jennifer, Sorry to hear about your mother's condition and glad you found us. The biomarker information they are testing for will be very important. There are a number of people on the site who are under treatment using targeted or immunotherapy and they are still here and living life. Some of our members had been told to "put their affairs in order" and are still here and living their lives years later, so please don't give up hope. You'll find this a great place to get information and support from people who know firsthand what it is to go through this journey of lung cancer. So feel free to ask any questions you may have. Our situations are quite varied so someone will have experience and knowledge to share with you. In the meantime...being a caregiver (even a distant one) is a tough challenge for anyone. We have a forum called "Caregiver Resource Center" and it can be found here. Please keep us updated and ask any questions you may have. Lou