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.

@merpreb

@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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I should have put way more details, my apologies! I was sent for an xray in july of this year. incidentally they found the nodule in my right lower lung. after a round of antibiodics and two cat scans, I had a lobectomy. During surgery it was found to be mucinous adenocarcinoma. the oncologist did say it was 1b.
i was hoping i could get a more detailed exclamation about the genetic results. I was also hoping I could know more about how long the tumor had been there? How fast does this actually grow? Ive since had another cat scan and Pet scan to rule out that it had spread from another location.

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@mistyl

I should have put way more details, my apologies! I was sent for an xray in july of this year. incidentally they found the nodule in my right lower lung. after a round of antibiodics and two cat scans, I had a lobectomy. During surgery it was found to be mucinous adenocarcinoma. the oncologist did say it was 1b.
i was hoping i could get a more detailed exclamation about the genetic results. I was also hoping I could know more about how long the tumor had been there? How fast does this actually grow? Ive since had another cat scan and Pet scan to rule out that it had spread from another location.

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Good morning. You have a rare but pretty early cancer. It's a subtype of adenocarcinoma, a very common type of lung cancer. Many doctors can't answer your questions. lol. I laugh because it really depends on a doctor's experience and level of education if he can guess growth rate and age. Your type of cancer is usually slow growing.

I'm sorry that I can't give you any science-based information about your cancer, growth rate, or genetics. Connect does not provide medical answers. We are not doctors or scientists. We can provide support and relay our experiences and make certain recommendations or referrals.

I would recommend that you continue to have CT and PET scans and talk to your oncologist about your questions. I did research your cancer and many explanations were beyond my understanding.

I wish you the best with this. It's horrible to have cancer and can emotionally take a toll on a person. I would love to continue to talk with you, offering my support and recommendations. I hope that you will like this too.

Merry

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I made it to see the Oncologist and now have a diagnosis and a treatment plan. This is inoperable, metastatic, stage 4 renal cell carcinoma that has spread to and now is at 3cm diameter in my left mid lobe of my lung .
The original tumor was removed via right partial nephrectomy over 10 year ago. Unfortunately, my oncologist has deemed the tumor inoperable at this time. She has elected to try a targeted drug therapy using (Yervoy and Opdivo) I don't really understand it completely, but from what I have read is stops blood vessel growth in the tumor (if it works). If is doesn't work, she said, "there are other drugs to try." But the wait to see is disconcerting. I asked the doctor about life expectancy and she said "I will be able to tell you how long you have to live in three months." This was a very shocking thing to hear and has been the subject of much worry. The wait, is the issue. I want to know, ASAP, if this treatment is working. And the oncologist seems to be a bit unemotional and/or uncaring. But, I feel like I do not have time to waste on getting other doctors involved. So, I guess I will just have to deal with her cold nature. I start my first treatment on Monday (12/12/22). I having Christmas early today with my family and I hope I can make it through without turning into an emotional basket case. Thank you all for allowing me a safe place to share my feelings. Your replies have been wonderful at helping me to understand I am not alone. Have a good Holiday Season everyone. Chin up! Face forward! Fight!

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@douglasfeb15

I made it to see the Oncologist and now have a diagnosis and a treatment plan. This is inoperable, metastatic, stage 4 renal cell carcinoma that has spread to and now is at 3cm diameter in my left mid lobe of my lung .
The original tumor was removed via right partial nephrectomy over 10 year ago. Unfortunately, my oncologist has deemed the tumor inoperable at this time. She has elected to try a targeted drug therapy using (Yervoy and Opdivo) I don't really understand it completely, but from what I have read is stops blood vessel growth in the tumor (if it works). If is doesn't work, she said, "there are other drugs to try." But the wait to see is disconcerting. I asked the doctor about life expectancy and she said "I will be able to tell you how long you have to live in three months." This was a very shocking thing to hear and has been the subject of much worry. The wait, is the issue. I want to know, ASAP, if this treatment is working. And the oncologist seems to be a bit unemotional and/or uncaring. But, I feel like I do not have time to waste on getting other doctors involved. So, I guess I will just have to deal with her cold nature. I start my first treatment on Monday (12/12/22). I having Christmas early today with my family and I hope I can make it through without turning into an emotional basket case. Thank you all for allowing me a safe place to share my feelings. Your replies have been wonderful at helping me to understand I am not alone. Have a good Holiday Season everyone. Chin up! Face forward! Fight!

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So sorry to hear this. Wishing you all the best with the treatments. Researchers have come a long way with targeted therapy drugs. In many cases more is needed to extend our lives, but it’s giving many of us a good quality of life for the years that we have.
It will take some time to know if the treatment is working, I’m guessing that you’ll be monitored closely in that three month time frame. My cancer is different than yours, but I started feeling better in days, so I knew it was working almost right away. That gave me much needed hope. Everyone isn’t that lucky, but you need to keep on and give the meds a chance to do their job. It certainly is not easy.
Its acceptable to be scared, this is a scary time, and it’s ok if your family knows that too.
Enjoy your day with your family. Take care, Lisa

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@douglasfeb15

I made it to see the Oncologist and now have a diagnosis and a treatment plan. This is inoperable, metastatic, stage 4 renal cell carcinoma that has spread to and now is at 3cm diameter in my left mid lobe of my lung .
The original tumor was removed via right partial nephrectomy over 10 year ago. Unfortunately, my oncologist has deemed the tumor inoperable at this time. She has elected to try a targeted drug therapy using (Yervoy and Opdivo) I don't really understand it completely, but from what I have read is stops blood vessel growth in the tumor (if it works). If is doesn't work, she said, "there are other drugs to try." But the wait to see is disconcerting. I asked the doctor about life expectancy and she said "I will be able to tell you how long you have to live in three months." This was a very shocking thing to hear and has been the subject of much worry. The wait, is the issue. I want to know, ASAP, if this treatment is working. And the oncologist seems to be a bit unemotional and/or uncaring. But, I feel like I do not have time to waste on getting other doctors involved. So, I guess I will just have to deal with her cold nature. I start my first treatment on Monday (12/12/22). I having Christmas early today with my family and I hope I can make it through without turning into an emotional basket case. Thank you all for allowing me a safe place to share my feelings. Your replies have been wonderful at helping me to understand I am not alone. Have a good Holiday Season everyone. Chin up! Face forward! Fight!

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@douglasfeb15, I'm tagging a few other members who have had the Opdivo (nivolumab) plus Yervoy (ipilimumab) treatment combo like @sammy15 @jimthomasintl and @max326. I'm also tagging @deek15redpeppers @panamaj @jimchardy, who have experience with renal cell carcinoma that has spread to the lungs.

Douglas, how did the first treatment go last week? When do you get the second treatment of Opdiva and Yervoy?

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@colleenyoung

@douglasfeb15, I'm tagging a few other members who have had the Opdivo (nivolumab) plus Yervoy (ipilimumab) treatment combo like @sammy15 @jimthomasintl and @max326. I'm also tagging @deek15redpeppers @panamaj @jimchardy, who have experience with renal cell carcinoma that has spread to the lungs.

Douglas, how did the first treatment go last week? When do you get the second treatment of Opdiva and Yervoy?

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I would suggest you speak with Palliative Care. They are a great bridge between the physical and emotional treatments we need. The oncologists gave me a year to live 15 months ago when i started Opdivo for my PPV throat cancer. Oncologists dont like giving bad news and they don't like doing it by the spoonful because its hard for everyone. The Palliative care team were able to help with the anxiety I faced at the time-it was very helpful and combined with the right immunotherapies got me through it. My cancer is chronic and could come back but I feel one can put together the right team for ttreatment you're in the best possible position. Good luck!

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@douglasfeb15

I made it to see the Oncologist and now have a diagnosis and a treatment plan. This is inoperable, metastatic, stage 4 renal cell carcinoma that has spread to and now is at 3cm diameter in my left mid lobe of my lung .
The original tumor was removed via right partial nephrectomy over 10 year ago. Unfortunately, my oncologist has deemed the tumor inoperable at this time. She has elected to try a targeted drug therapy using (Yervoy and Opdivo) I don't really understand it completely, but from what I have read is stops blood vessel growth in the tumor (if it works). If is doesn't work, she said, "there are other drugs to try." But the wait to see is disconcerting. I asked the doctor about life expectancy and she said "I will be able to tell you how long you have to live in three months." This was a very shocking thing to hear and has been the subject of much worry. The wait, is the issue. I want to know, ASAP, if this treatment is working. And the oncologist seems to be a bit unemotional and/or uncaring. But, I feel like I do not have time to waste on getting other doctors involved. So, I guess I will just have to deal with her cold nature. I start my first treatment on Monday (12/12/22). I having Christmas early today with my family and I hope I can make it through without turning into an emotional basket case. Thank you all for allowing me a safe place to share my feelings. Your replies have been wonderful at helping me to understand I am not alone. Have a good Holiday Season everyone. Chin up! Face forward! Fight!

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Douglas- I am so sorry to hear your news. And having an unemotional doctor to deal with at the same time makes me angry. Have you thought of getting a second opinion?

In my view, your doctor can not tell you when you will die anymore today than he will in 3 weeks or three months. No doctor should answer this question. But I do understand your reaction.

As of this post, you have had your first treatment. How did it go? You can still get a second opinion, you know!

Please stay with me here so I can hold your hand and help you through what will be. OK?

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@merpreb

Douglas- I am so sorry to hear your news. And having an unemotional doctor to deal with at the same time makes me angry. Have you thought of getting a second opinion?

In my view, your doctor can not tell you when you will die anymore today than he will in 3 weeks or three months. No doctor should answer this question. But I do understand your reaction.

As of this post, you have had your first treatment. How did it go? You can still get a second opinion, you know!

Please stay with me here so I can hold your hand and help you through what will be. OK?

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WoW I’m so sorry to hear your Dc said that just try to have another opinion

I got a friend her she got chimo for life now because the cancer spread
Me l gone to find out next week if l need chimo and radiation
I got lobectomie 4 week ago
And it’s small cell cancer carcinoma
He told me he take everything out but just to be sure
Oncologist gone to call me next week to see I’m scare but l try to stay strong

Good luck

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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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Can you please tell me about the surgery?
I am having my lower right lobe removed on Nov 21.
Worried!

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Definitely was a painful recovery. As difficult as it will be. Moving is key. They will want you to get out of bed on day two. Just take your time. The chest tube was difficult. You will need to do breathing exercises. Those are crucial to recovery as well.

Most of all. Prayer.

Will your surgery be robotic ?

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