Routine CT Scan 12 years after RCC-Tumor Lower Left Lung - Nvr Smoked

Posted by douglasfeb15 @douglasfeb15, Oct 31, 2022

Just found out today. I have a tumor with "tendrils" growing in my left lung. Doc says it is on the lower-outer-rear of the lung. Says that may be a good thing because easier to operate on it. It is 3 cm on the part they can see. Found it on an abdominal CT follow up to RCC 12 years ago. Getting the full CT later this week or early next. I have never smoked a day in my life. I am trying to keep it together, for my wife and kids. I am 55 with 4 grown kids and 5 grands. I have lived through open heart surgery, Right Partial Nephrectomy, Gall Bladder Removal, and I plan on getting through this. But I really need people to talk to. I don't want to make my wife of 25 years even more nervous so I am playing the part of non-chalant. But I am freaking out on the inside. There are so many things I want to do before I die. I am just not ready.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

When I was going through diagnosis it helped me when I could focus on what I knew today, and what I could do about it today. That helped to put the ‘what-if’s’ aside. Additional tests are needed before you will know if it is cancerous. Likely a CT PET scan. Today you know it’s something that shouldn’t be there, but that doesn’t mean it’s cancer. Your appointments are scheduled, so there’s nothing more you can do about it until that time.
IF it’s cancerous, know that many people with lung cancer live for years and years with a great quality of life. I’m 52, and was diagnosed stage IV, over 2 1/2 years ago, I’m doing great, I work out at the Y several times a week, hike, and bike, and plan to be around awhile!
Please keep us posted, Lisa

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First of all try not to panick. I know it’s easier said than done. Your oncologist knows what he’s doing. Many people live long after treatment for nsclc. I have the opposite small cell lung cancer. Mine is not as treatable as yours. It will be a hard thing and it will change you and your family. I’m 58 and I’ve finished treatment year ago wasn’t able to operate. I’ll keep you in my prayers.

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Thank you all for your hugs and comments. I had a good night's sleep last night and talked with several of my friends at family. I was really more worried about my wife coping than my personal issues with this. She is completely disabled and depends on me for everything. If I have surgery, which will likely happen, we will have to hire a nurse to come and take care of me and her. But, I confirmed today that I do have a Cancer Policy and they the expenses will be taken care of. So, things are getting less stressful and I am beginning to come to terms. My daughter is flying in this weekend with two of my grands. I hope to have a nice visit.
I know that we don't really know each other, but there is a connection, somehow through these awful side effects of being human we call disease. And, I want you all to know I appreciate that you took the time to read my post and help me try to keep my senses. I will keep everyone updated as my process unfolds.
I feel strong and healthy and have no real symptoms other than shortness of breath. So, I am hopeful I will respond well to treatment and that a year or so from now I will be trying to help some other brave soul fend off shear panic. --better days ahead

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Doug, @douglasfeb15
I am a never smoker and at 45 an abdominal X-ray for a GI referral caught a 3cc tumor in my lung which led to a lung cancer diagnosis. The hardest part is waiting on all the tests, results and staging. I was stage 3A. I had 30 radiation treatments, chemo and a thoracotomy to remove my lower right lobe. I am 2 1/2 years from surgery and no sign of cancer right now. My oncologist is very positive and never smokers are likely to have a gene mutation in their tumor. I have the EGFR Exon 19 mutation. This is actually a good thing as there are targeted therapies for the mutations. When I was diagnosed a friend gave me the book by Greg Anderson, Cancer 50 Things To Do. The author is a stage IV lung cancer survivor and the book is very positive. It really helped me to read some every night when I was diagnosed. Read survival stories. They helped me stay positive. Also, let friends and family help you. They will want to do something so let them if you need help. Let them make you some meals to freeze if they want to or clean the house. They are anxious for you and it helps them feel better to help in some way. I hope you have a wonderful visit with your daughter and grandkids.
Take care,
Juliette

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@douglasfeb15

Thank you all for your hugs and comments. I had a good night's sleep last night and talked with several of my friends at family. I was really more worried about my wife coping than my personal issues with this. She is completely disabled and depends on me for everything. If I have surgery, which will likely happen, we will have to hire a nurse to come and take care of me and her. But, I confirmed today that I do have a Cancer Policy and they the expenses will be taken care of. So, things are getting less stressful and I am beginning to come to terms. My daughter is flying in this weekend with two of my grands. I hope to have a nice visit.
I know that we don't really know each other, but there is a connection, somehow through these awful side effects of being human we call disease. And, I want you all to know I appreciate that you took the time to read my post and help me try to keep my senses. I will keep everyone updated as my process unfolds.
I feel strong and healthy and have no real symptoms other than shortness of breath. So, I am hopeful I will respond well to treatment and that a year or so from now I will be trying to help some other brave soul fend off shear panic. --better days ahead

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I'm glad you are feeling better about things. I have to echo your sentiments about how this community is so wonderful at being informative and thoughtful. I had NSCLC diagnosis, right lung lobectomy was done in June. Left lung wedge resection on another cancerous nodule was Oct. 4. I am pending results of pathology to determine if its the same cancer type or different. I've learned its possible to have 2 different kinds at the same time. If the cancer is the same, targeted treatment is likely. There is lots to learn. Best wishes.

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@douglasfeb15

Thank you all for your hugs and comments. I had a good night's sleep last night and talked with several of my friends at family. I was really more worried about my wife coping than my personal issues with this. She is completely disabled and depends on me for everything. If I have surgery, which will likely happen, we will have to hire a nurse to come and take care of me and her. But, I confirmed today that I do have a Cancer Policy and they the expenses will be taken care of. So, things are getting less stressful and I am beginning to come to terms. My daughter is flying in this weekend with two of my grands. I hope to have a nice visit.
I know that we don't really know each other, but there is a connection, somehow through these awful side effects of being human we call disease. And, I want you all to know I appreciate that you took the time to read my post and help me try to keep my senses. I will keep everyone updated as my process unfolds.
I feel strong and healthy and have no real symptoms other than shortness of breath. So, I am hopeful I will respond well to treatment and that a year or so from now I will be trying to help some other brave soul fend off shear panic. --better days ahead

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@douglasfeb15, I can hear the calm and the resolve in your message. I'm wondering if you have clarification about with this is a new cancer of the lung or if this is metastasis of the renal cell cancer?

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@marshall8318

Doug, @douglasfeb15
I am a never smoker and at 45 an abdominal X-ray for a GI referral caught a 3cc tumor in my lung which led to a lung cancer diagnosis. The hardest part is waiting on all the tests, results and staging. I was stage 3A. I had 30 radiation treatments, chemo and a thoracotomy to remove my lower right lobe. I am 2 1/2 years from surgery and no sign of cancer right now. My oncologist is very positive and never smokers are likely to have a gene mutation in their tumor. I have the EGFR Exon 19 mutation. This is actually a good thing as there are targeted therapies for the mutations. When I was diagnosed a friend gave me the book by Greg Anderson, Cancer 50 Things To Do. The author is a stage IV lung cancer survivor and the book is very positive. It really helped me to read some every night when I was diagnosed. Read survival stories. They helped me stay positive. Also, let friends and family help you. They will want to do something so let them if you need help. Let them make you some meals to freeze if they want to or clean the house. They are anxious for you and it helps them feel better to help in some way. I hope you have a wonderful visit with your daughter and grandkids.
Take care,
Juliette

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I recently had my right lower lobe removed. Diagnosed as mucinous adenocarcinoma. It was caught EARLY.... margins were clear and the lymph nodes also.

I also had genetic testing done of the tumor. Did your oncologist explain to you the genetic results? I have a copy of the report and am waiting to see him on the 8th.

I am very curious about the genetic mutations.

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@mistyl

I recently had my right lower lobe removed. Diagnosed as mucinous adenocarcinoma. It was caught EARLY.... margins were clear and the lymph nodes also.

I also had genetic testing done of the tumor. Did your oncologist explain to you the genetic results? I have a copy of the report and am waiting to see him on the 8th.

I am very curious about the genetic mutations.

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@mistyl what a relief that the cancer was found early. How was it discovered? What did you learn about the genetic testing at your recent appointment?

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@colleenyoung

@mistyl what a relief that the cancer was found early. How was it discovered? What did you learn about the genetic testing at your recent appointment?

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Unfortunately, the oncologist did not go into any specific detail about the genetic testing. He just said that there was no treatment for the mutations. I personally did not plan on going forward with any treatments. When the tumor was removed, the margins were clear and so were the lymphnodes. I have a follow up CT scan in Jan. I wonder who I can talk to about the genetic results?? I would love some direction if anyone has ideas!

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@mistyl

Unfortunately, the oncologist did not go into any specific detail about the genetic testing. He just said that there was no treatment for the mutations. I personally did not plan on going forward with any treatments. When the tumor was removed, the margins were clear and so were the lymphnodes. I have a follow up CT scan in Jan. I wonder who I can talk to about the genetic results?? I would love some direction if anyone has ideas!

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@mistyl- Good morning. It's nice to meet you. I have 25 years behind me of lung cancer and there are many treatments for mutations and it is imperative that you get tested. I suggest that you get a second opinion and be ready to change doctors. You are not getting accurate medical advice or information unless your doctor is not telling you everything.

This sounds very fishy to me. Has your doctor told you what kind of cancer and stage it was? On a positive note, it's excellent news that your nodes and margins are clear.

I would like you to know that it is very normal to be petrified to die. Outside of feeling lousy when you heal from surgery I'm sure that you are anxious to get on with living. One thing that helped me was, to be honest with my husband and let him be honest with me. He needed to tell me things, through tears and sobs. I think that being this open keeps things honest and open.

I hope that you can get to the bottom of genetic testing. If I were you I'd go back to this doctor and ask him/her to set it up. If you don't get a satisfactory answer from him then go to the top of his practice or the hospital. Does this make sense?

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