REG Posted March 3, 2020 Share Posted March 3, 2020 CT scan shows 3.8 cm spiculated mass on my left upper lobe, scheduled fo biopsy next week...is tis a death sentence since I am over 65 yrs old? Link to comment Share on other sites More sharing options...
Rose Kaiser Posted March 3, 2020 Share Posted March 3, 2020 I know it's hard not to think the worst, but try to stay positive - and 65 sounds young to me! Link to comment Share on other sites More sharing options...
TJM Posted March 3, 2020 Share Posted March 3, 2020 Deep breath. Another one. Ok... No this is not a death sentence and 65 is young. You are right this moment feeling as hopeless as you ever will again. Read that slowly. With this disease the lowest point is when you hear "we saw something and it might be cancer". Believe it or not....it WILL get better. You WILL feel better soon. There IS hope and you WILL find that hope. Plus...you found this special place. As you get more details please share them. The more you tell us the better info you will get. There will be many others responding to you soon. You are not only welcome here, you are one of us Peace Tom Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 3, 2020 Share Posted March 3, 2020 Hi, REG. Try to take things one step at a time. Here is Lung Cancer 101 with a lot of good information about different testing and treatment options. https://lungevity.org/for-patients-caregivers/lung-cancer-101 There has been a ton of new progress made in the past 5 years so definitely be hopeful, though feeling scared is totally understandable. Link to comment Share on other sites More sharing options...
May2 Posted March 3, 2020 Share Posted March 3, 2020 2 hours ago, REG said: CT scan shows 3.8 cm spiculated mass on my left upper lobe, scheduled fo biopsy next week...is tis a death sentence since I am over 65 yrs old? I agree with Tom, you just did the worst part of this process. No, It is not a death sentence, there will be ups and downs along the way. Jumping to a conclusion is not helpful. Please keep in mind, some doctors present things in a dry and scary way. Definitely take time to get more opinions, and find a doctor who will be positive and encouraging to work with. I got 4 opinions before I started my treatment. 2 of the doctors made me feel like I am going to die soon, I was so depressed after leaving their office. (I felt like I was just another number) the other two doctors were very hopeful and encouraging. Gave me a lot of information about current treatment options. I feel great every time I see my oncologist keep us posted. Link to comment Share on other sites More sharing options...
REG Posted March 3, 2020 Author Share Posted March 3, 2020 Thank you, Tom, Rose, Kristin and May, Looks like this is a great place to be. I know you have all gone through/are going through the road that I am just beginning to travel, my best to each of you as well!!! I will draw on the advice and resources that you have so kindly provided...I will keep you all posted. Thank you Link to comment Share on other sites More sharing options...
Curt Posted March 4, 2020 Share Posted March 4, 2020 @REG Definitely not a death sentence! You’ve already met plenty of people who are proof of that. Initial phases before definitive diagnosis are very scary but there are good treatments available and things will settle down once you have a plan in place. Hang in there. Link to comment Share on other sites More sharing options...
BridgetO Posted March 4, 2020 Share Posted March 4, 2020 Hi REG, Being over 65 doesn't mean you can't deal with lung cancer, or any cancer for that matter. I was 70 when I had my lower right lobe removed due to non-small-call lung cancer. Admittedly, my tumor was smaller than yours. However when I was 66, I had a non-lung cancer that was advanced and aggressive, I had a BIG surgery, followed by radiation and chemo. Despite some long term side effects of that grueling treatment, I'm fine today, with No Evidence of Disease (NED). At 74, I work part time, travel when I can afford it, and generally have a good quality of life. Hang in there and don't despair, REG. Bridget O Link to comment Share on other sites More sharing options...
Kate7617 Posted March 4, 2020 Share Posted March 4, 2020 Hang in there and yes it is scary!! We all know that feeling. As much as it is said, I will say it again, One day at a time being hopeful that is all we can do. I wish I could hug you and tell you everything will be ok, but we don't know bottom line. Let's all pray for each other and Let God take the Wheel! He knows best! Link to comment Share on other sites More sharing options...
May2 Posted March 7, 2020 Share Posted March 7, 2020 On 3/3/2020 at 1:15 PM, REG said: CT scan shows 3.8 cm spiculated mass on my left upper lobe, scheduled fo biopsy next week...is tis a death sentence since I am over 65 yrs old? I hope you are feeling better, and starting to gain control over the situation. Best wishes. Link to comment Share on other sites More sharing options...
REG Posted March 7, 2020 Author Share Posted March 7, 2020 Is it normal to take 5-6 weeks to complete testing to confirm diagnosis and formulate a treatment plan...should I be concerned about mass growing/spreading in the meantime? Link to comment Share on other sites More sharing options...
May2 Posted March 7, 2020 Share Posted March 7, 2020 Yes it is normal for tests to take that long. As far as I know, there is no need to worry about mass spreading. Treatment plan will be based on type and stage of cancer. 6-8 weeks won't make a big difference on the growth/ spreading. Did the doctor give you an estimate on how long you had the mass for? That would help you understand your cancer growth tendencies. In my case I have a stage IV non-small cell RET mutation. 1.5 cm mass in right lung, some in lymphs in left lung and abdomine area. Doctor said, it probabaly started at least a year a go. When I told him I was concerned about it spreading while we were waiting for results, he said to not worry: 1-since I am already in stageIV there is no risk of changing stages. 2-Treatment for stage IV will be the same regardless of how much it is spread. 3-If treatment is effective, it will be effective everywhere. 4-large mass wont suddenly appear on other organs. It will start very small. So even if it does spread or grow during this time, it won't be significant. In my case, he said even if I have a new spread in a new area, It won't be signaficant to make a difference in treatment plan, or how effective treatment will be. I hope this helps. Feel free to voice any other concerns. Link to comment Share on other sites More sharing options...
May2 Posted March 7, 2020 Share Posted March 7, 2020 1 hour ago, REG said: Is it normal to take 5-6 weeks to complete testing to confirm diagnosis and formulate a treatment plan...should I be concerned about mass growing/spreading in the meantime? Actually it might be useful to ask your doctor if you can get your PET scan and brain MRI done during this time while waiting for your biopsy results. You will need them soon. Has your energy been effected, are you still able to do normal daily activities, take walks and do normal daily activities....etc? Link to comment Share on other sites More sharing options...
REG Posted March 7, 2020 Author Share Posted March 7, 2020 Thank you May, You're advice is spot on...They are scheduling me for the PET and brain scan just as soon as the biopsy results are in! Energy is good (except lack of sleep) able to do all daily activities with no problem. Overall, except for the stress i feel pretty good/symptom free most days? Link to comment Share on other sites More sharing options...
May2 Posted March 7, 2020 Share Posted March 7, 2020 Awesome! I am glad your energy level is good. Sorry your stressed out and losing sleep, Very understandable. it is a heavy load to take in. I promise it will get easier as you go. We are here for you. Try to find what will make it less stressful for you, maybe humor? Socializing? Read a book about Living with cancer? Diffusing stress is essential, and different for each person. Take advantage of this time while your energy level is good. Have a routine walk outdoor. Physical activities help a lot with stress and sleep. Not sure if they will use chemo or immunotherapy as a treatment, but it might be helpful to use this waiting period as a time to prepare your body for the treatment. Increase your vegitable/fruit/Whole grain/Matcha/omega intake. Eliminate bad carbs and sugar. Having strong well nurtured body will help you recover in between treatments. -Reading a book might help. I read this book: Anticancer: A New Way of Life By:David Servan-Schreiber MD PhD I found it very helpful, they have it in audio as well. Link to comment Share on other sites More sharing options...
REG Posted March 21, 2020 Author Share Posted March 21, 2020 Finally received my diagnoses - stage 1b T2AN0 Adenocarcinoma (3.9 cm) mass in my left upper lobe. Very hopeful to hear from my oncologist that I have good hope for complete cure (with only surgery). My hopes are dashed now however that I just learned that all “elective surgeries” are indefinitely cancelled (due to Coronavirus) in Arizona (where I live). Of course, I am quite concerned that the cancer will grow spread in the next several weeks/months that I’ll be waiting! What can I do? Link to comment Share on other sites More sharing options...
May2 Posted March 21, 2020 Share Posted March 21, 2020 1 hour ago, REG said: Finally received my diagnoses - stage 1b T2AN0 Adenocarcinoma (3.9 cm) mass in my left upper lobe. Very hopeful to hear from my oncologist that I have good hope for complete cure (with only surgery). My hopes are dashed now however that I just learned that all “elective surgeries” are indefinitely cancelled (due to Coronavirus) in Arizona (where I live). Of course, I am quite concerned that the cancer will grow spread in the next several weeks/months that I’ll be waiting! What can I do? I was thinking about you! I was wondering how you are doing during this time and if your appointments were effected. I am so happy to hear the good news. They consider this an elective surgery?? I am shocked! 😳 That is super frustrating! What about other treatments like chemo or Immunotherapy? Did your doctor say anything about these options for now? They might at least keep the cancer from spreading until you can get the surgery. Link to comment Share on other sites More sharing options...
REG Posted March 21, 2020 Author Share Posted March 21, 2020 My Dr is convinced that my case can be completely cured with surgery alone...doesn’t make any sense to me to introduce other treatments that could potentially be harmful to me (in fact ridiculous) that they wouldn’t make common sense exceptions/prioritize life threatening aggressive illnesses like LC vs routine joint replacements, cosmetic surgeries and other truly “elective” procedures - unbelievable? Link to comment Share on other sites More sharing options...
May2 Posted March 21, 2020 Share Posted March 21, 2020 I am very surprised they categorize this as an elective surgery. Does the doctor have any thoughts about how fast or slow the growth of this type of cancer will be like? Hopefully everything will be sorted out in a month or two and will have some sense of safety and security back. Link to comment Share on other sites More sharing options...
Tom Galli Posted March 22, 2020 Share Posted March 22, 2020 REG, I don't agree that surgery to remove a lung cancer tumor is "elective" either. I'd push back hard, find a surgeon who wants to operate and find a hospital. Stay the course. Tom Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted March 23, 2020 Share Posted March 23, 2020 Adding to Tom's push back statement, you might print out the following article and give it to your oncologist: Surgery soon after clinical staging of non-small cell lung cancer reduces cancer progression (5/1/2018) https://medicalxpress.com/news/2018-05-surgery-clinical-staging-non-small-cell.html Key comments are as follows: 1. NCCN guidelines recommend surgery within 8 weeks 2. "There was significant cancer upstaging with each progressive week from clinical staging to surgery ... " 3. "An astonishing number of clinical stage 1 NSCLC patients upstaged to 3A at time of surgery ... " 4. Interestingly, a higher proportion of both clinical 1A and 1B patients upstaged to 3A vs 2B, suggesting a possible need for more aggressive mediastinal staging, even in early-stage patients ... " 5. ... our study demonstrates there is a benefit in doing surgery even within a week by week basis ..." Definitely get on a waiting list and indicate the 8 week clock is already rolling. After this, beat them over the head with the article and any others you can find (articles not heads or maybe heads too) coronavirus be darned! Steve Link to comment Share on other sites More sharing options...
REG Posted March 23, 2020 Author Share Posted March 23, 2020 1 hour ago, MyWifeSCLC said: Adding to Tom's push back statement, you might print out the following article and give it to your oncologist: Surgery soon after clinical staging of non-small cell lung cancer reduces cancer progression (5/1/2018) https://medicalxpress.com/news/2018-05-surgery-clinical-staging-non-small-cell.html Key comments are as follows: 1. NCCN guidelines recommend surgery within 8 weeks 2. "There was significant cancer upstaging with each progressive week from clinical staging to surgery ... " 3. "An astonishing number of clinical stage 1 NSCLC patients upstaged to 3A at time of surgery ... " 4. Interestingly, a higher proportion of both clinical 1A and 1B patients upstaged to 3A vs 2B, suggesting a possible need for more aggressive mediastinal staging, even in early-stage patients ... " 5. ... our study demonstrates there is a benefit in doing surgery even within a week by week basis ..." Definitely get on a waiting list and indicate the 8 week clock is already rolling. After this, beat them over the head with the article and any others you can find (articles not heads or maybe heads too) coronavirus be darned! Steve Thank you Steve, Very helpful information...I will be meeting with the surgeon on Wednesday (and bringing a copy of the article) hopefully they'll schedule the surgery ASAP? I'll 'definitely keep you all posted! REG Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 23, 2020 Share Posted March 23, 2020 Please reach out to the Lung Cancer HELPLine if you need additional resources before or after your meeting. Maybe there is a different facility to have your surgery that is not also being used to help COVID-19 patients? https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline Link to comment Share on other sites More sharing options...
REG Posted March 30, 2020 Author Share Posted March 30, 2020 Thank you everyone, met with surgeon, he assured me that my surgery is necessary ASAP. He scheduled me for a lobectomy (upper L) on April, 9th. Of course, I wish it could be sooner as they are currently measuring my tumor as 3.9cm, I am very concerned that my tumor will grow to 4 cm (or more) by the time I have surgery...that would move me up to a stage II diagnosis from what I can see? How concerned should I be about upstaging? Guess I don't really have a choice anyway at this point, just hoping there are no unforeseen delays beyond the 9th? Thanks again to each of you for your very kind support, information and resources! Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted March 30, 2020 Share Posted March 30, 2020 I don't think staging changes once it is set. However, I don't know when staging is set! I suspect that a PET scan may be the "final say" on staging. Good news on the surgery. Take care and keep us posted. Steve Link to comment Share on other sites More sharing options...
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