Recurrence in Lung

todd121
todd121 Member Posts: 1,448 Member
in Kidney Cancer #1

Hi. I just found out today I have a new tumor in my lung. It's about 1" and located in the upper right part of my lung at the top. Somehow I had a feeling cancer would be back for me. I was a little surprised to have 6 years NED after the adrenalectomy.

I'm feeling very emotional today. Sad. Depressed. Scared. I lost a close friend this year to this cancer and another two years before, and then several I've had the pleasure of getting to know online. My mind jumps right ahead to their struggles in the last months and years and I saw just how very hard it was for them.

So far I only told a very few people that the cancer is back. I haven't told my sons (they are in their 30's) nor my mom (she lives in another state and is not in great shape herself).

My story on my profile is pretty up to date, except for this news today, so I won't go into the whole thing here. I've had maybe 6 years now of NED after the adrenalectomy in 2015. Funny. This is the same time of year they found my adrenal tumor.

Current plan is a biopsy just to be sure that's what it is (doc is pretty sure that's what it is), then consults with a thoracic surgeon and a radiation oncology doctor. If for some reason those two things are off the table, the doctor will be recommending drugs. I'm sorry I haven't kept up with all of the new developments in the area of drugs. There are so many options now I don't even know where to start. My doctor also is involved in several drug studies and he would consider trying me on one of the newer treatments. I'm not necessarily terribly excited about trying a newer treatment.

I jsut wanted to say hello and check in. I was starting to forget about my cancer and thinking maybe it wouldn't come back. Of course I was reminded every 3 months at scan time.

I've already had a good tongue lashing from the person closest to me about my failure to take good care of myself. I've gained weight during the pandemic. I've eaten what I wanted, drank coffee, alcohol, etc. I had lost weight 2-3 years ago and was exercising and feeling pretty good, but this year I just went downhill in this area. Stopped exercising. Drank too much. Maybe I'll try taking better care of myself now. But it feels like it might be too late.

Sorry. I'm feeling really down so this is probably a downer post.

Hugs,

Todd

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Comments

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #2
    Bummer!!

    Sorry to hear the news.  You have a cheering squad out here, so keep us in the loop.

    Hugs,

    donna_lee

  • Scottie22
    Scottie22 Member Posts: 99 Member
    edited January 2021 #3
    Hang in there

    Sorry to hear this disappointing news after years of NED. Your doctor is on it and you will be able to discuss the best way forward to beat this thing again. Don't beat yourself up about your lifestyle choices because that's what they are choices. I don't want to  live in a bubble because of my diagnosis, I enjoy a glass or two of wine and my doc has said everything in moderation. All the best, hang in there.

    Jo

  • todd121
    todd121 Member Posts: 1,448 Member
    #4
    donna_lee said:

    Bummer!!

    Sorry to hear the news.  You have a cheering squad out here, so keep us in the loop.

    Hugs,

    donna_lee

    Thanks!

    Thank you Donna. You've been an inspiration to me.

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    edited January 2021 #5
    Thanks!

    I should remember from last time. I hope so. I'm 10 years older and just a lot more tired this time. :)

    This is tough.

    It's a really bad time to need to go to the hospital. Covid is making things really unpleasant here in the LA area. I've only seen my granddaughter 3 times this year for short visits.

    Todd

  • Scottie22
    Scottie22 Member Posts: 99 Member
    edited January 2021 #6
    todd121 said:

    Thanks!

    I should remember from last time. I hope so. I'm 10 years older and just a lot more tired this time. :)

    This is tough.

    It's a really bad time to need to go to the hospital. Covid is making things really unpleasant here in the LA area. I've only seen my granddaughter 3 times this year for short visits.

    Todd

    Covid

    I understand the reluctance about hospital visits as I noticed that California and the LA area is being hard hit at the moment. I am next door in Arizona and we are also currently moving in the wrong direction. It is hard on families not being able to meet. Mine are in the UK and I generally visit them in September, needless to say that didn't happen in 2020. Gotta get better this year.

  • eug91
    eug91 Member Posts: 471 Member
    edited January 2021 #7
    you're on top of it - you're gonna do great

    I'm sorry. That sucks, Todd. It's a huge downer, but once the shock wears off, you know you're in a good spot - much better than where you were when you started your entire journey. You've knocked cancer out a couple times already - no reason you're not going to knock it out again. 

    And yes, echoing what Scottie said, don't beat yourself up over what-ifs. Kidney cancer doesn't have a specific cause/effect, so please don't beat yourself up over coffee/alcohol or a few lbs during this awful awful 2020. And it's never too late. Use this as motivation to get back into it, not as a whip to punish yourself. 

    As for COVID, ugh, yeah it's brutal here in SoCal now. But medical facilities are being super careful and cautious, and there're lots of tele-visits being done. Plus this current surge should subside in the next few weeks as we get further from Thanksgiving/Christmas and closer to more vaccinations. Speaking of which, talk to your doctor and see if you can get yourself bumped up on the vaccine waiting list. 

    We're here for you. You've got this.

  • AliceB1950
    AliceB1950 Member Posts: 244 Member
    #8
    I'm sorry you got this news.

    I'm sorry you got this news. I've never heard of mets being a result of ANYTHING a patient does or doesn't do, so please don't let anyone (including yourself) make you feel guilty for anything you have or haven't done.

  • stub1969
    stub1969 Member Posts: 985 Member
    edited January 2021 #9
    Update

    Todd, thanks for the update and for the guidance and wisdom you share in this post.  Activity is so important--not only for our physical well-being but also for our mental well-being.  Also, the importance of scans.  When FoxHD was still alive he was very passionate in his belief that we need to look at scans as a precautionary measure.  He would say they help us catch possible mets early, so we can develop a plan to save our lives.  Because you caught this new met early, I believe you have set yourself up for a very good option to get rid of it and experience long-term NED again.

    We have a member (but I forgot his "name") has had several reoccurrences to the lung all treated through surgery.  He's been able to avoid drugs--which would be a goal.

    Keep your chin up--and keep us updated with the plan moving forward!

    Stub

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206 Member
    #10
    Good luck-you did it before

    Good luck-you did it before you'll do it again-remember you have that little granddaughter to look forward to-June

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    edited January 2021 #11
    I am sorry to hear the news

    I am sorry to hear the news and I can understand the feeling from your words...

    I always remember research says the longer it takes for it to return, the better outcome it will be. I wish surgery is the option and bring you back to the long NED again.

    Best wishes Todd and take care.

  • todd121
    todd121 Member Posts: 1,448 Member
    edited January 2021 #12
    eug91 said:

    you're on top of it - you're gonna do great

    I'm sorry. That sucks, Todd. It's a huge downer, but once the shock wears off, you know you're in a good spot - much better than where you were when you started your entire journey. You've knocked cancer out a couple times already - no reason you're not going to knock it out again. 

    And yes, echoing what Scottie said, don't beat yourself up over what-ifs. Kidney cancer doesn't have a specific cause/effect, so please don't beat yourself up over coffee/alcohol or a few lbs during this awful awful 2020. And it's never too late. Use this as motivation to get back into it, not as a whip to punish yourself. 

    As for COVID, ugh, yeah it's brutal here in SoCal now. But medical facilities are being super careful and cautious, and there're lots of tele-visits being done. Plus this current surge should subside in the next few weeks as we get further from Thanksgiving/Christmas and closer to more vaccinations. Speaking of which, talk to your doctor and see if you can get yourself bumped up on the vaccine waiting list. 

    We're here for you. You've got this.

    Thanks!

    Sounds like great advice! Unfortunately my cook thinks I need to give up everyhing that tastes good and is insistent on me changing my diet. Hahaha. Maybe I'll try for awhile. It can't hurt me. 

    Regarding the vaccination, I've talked to my oncologist and all of my docs, and they know very little about what's going on. They tell me they don't know much more than I know about when we'll get it. Sucks right?

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    #13
    AliceB1950 said:

    I'm sorry you got this news.

    I'm sorry you got this news. I've never heard of mets being a result of ANYTHING a patient does or doesn't do, so please don't let anyone (including yourself) make you feel guilty for anything you have or haven't done.

    I like this

    And now I'm craving a good IPA. :)

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    edited January 2021 #14
    stub1969 said:

    Update

    Todd, thanks for the update and for the guidance and wisdom you share in this post.  Activity is so important--not only for our physical well-being but also for our mental well-being.  Also, the importance of scans.  When FoxHD was still alive he was very passionate in his belief that we need to look at scans as a precautionary measure.  He would say they help us catch possible mets early, so we can develop a plan to save our lives.  Because you caught this new met early, I believe you have set yourself up for a very good option to get rid of it and experience long-term NED again.

    We have a member (but I forgot his "name") has had several reoccurrences to the lung all treated through surgery.  He's been able to avoid drugs--which would be a goal.

    Keep your chin up--and keep us updated with the plan moving forward!

    Stub

    Plan

    I see a radiation oncologist Friday, a thoracic surgeon on Tuesday, and next thursday I get the CT guided biopsy. Then....decision time!

    I spent a long time talking to a friend of mine that works in kidney cancer research area last night. He's also a kidney cancer survivor so he has skin in the game. He was so optimistic about the treatments we have now and that are coming that it really encouraged me. 

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    #15
    lobbyist0724 said:

    I am sorry to hear the news

    I am sorry to hear the news and I can understand the feeling from your words...

    I always remember research says the longer it takes for it to return, the better outcome it will be. I wish surgery is the option and bring you back to the long NED again.

    Best wishes Todd and take care.

    So appreciate everyone's good wishes!

    You all have really help me feel better. I plan to be at my granddaughter's graduation and marriage. :)

    Todd

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited January 2021 #16
    Hi Todd.  Really sorry to

    Hi Todd.  Really sorry to hear this news.  I've always paid attention to your posts as you joined CSN about the same time as my husband, and of course there are some similarities.  I just reread your profile.  I certainly can understand where you are at right now emotionally.  I also have such confidence in your approach to wellness.  You have a really good medical team, great facility, and lets face it, you know what needs to happen next.  Gather all the information you can from the docs, and you will make a very wise decision for your treatment plan. 

    I am a true believer in radiation oncology as a consideration in treatment.  I'm glad you are going to find out if this will work for you, and that you are going to a facility where you have the available option. 

    As far as drugs go...there aren't many people here writing that they aren't so bad, with really few side effects.  I think people tend to not write when things are going well.  Husband has been on targeted therapy since 2012 without any significant problems. 

    Regarding the person that commented on your lifestyle:  They don't know what they are talking about, and shouldn't have said anything.  However, I would figure that a loved one just doesn't know what to say, and spoke before thinking.  I want to remind you of all the people here that have been into weight lifting, body building, nutrition, science, physical fitness, running, nonsmokers, nondrinkers  etc., and yet they still got renal cancer.   Please don't be hard on yourself.

    Take care now.  Let us know how you are doing. 

  • todd121
    todd121 Member Posts: 1,448 Member
    edited January 2021 #17
    a_oaklee said:

    Hi Todd.  Really sorry to

    Hi Todd.  Really sorry to hear this news.  I've always paid attention to your posts as you joined CSN about the same time as my husband, and of course there are some similarities.  I just reread your profile.  I certainly can understand where you are at right now emotionally.  I also have such confidence in your approach to wellness.  You have a really good medical team, great facility, and lets face it, you know what needs to happen next.  Gather all the information you can from the docs, and you will make a very wise decision for your treatment plan. 

    I am a true believer in radiation oncology as a consideration in treatment.  I'm glad you are going to find out if this will work for you, and that you are going to a facility where you have the available option. 

    As far as drugs go...there aren't many people here writing that they aren't so bad, with really few side effects.  I think people tend to not write when things are going well.  Husband has been on targeted therapy since 2012 without any significant problems. 

    Regarding the person that commented on your lifestyle:  They don't know what they are talking about, and shouldn't have said anything.  However, I would figure that a loved one just doesn't know what to say, and spoke before thinking.  I want to remind you of all the people here that have been into weight lifting, body building, nutrition, science, physical fitness, running, nonsmokers, nondrinkers  etc., and yet they still got renal cancer.   Please don't be hard on yourself.

    Take care now.  Let us know how you are doing. 

    Nutriion, food, drink , etc. Treatment Plan

    Thank you! I was already working on my weight and health. Not because of cancer, but because I wasn't feeling well and wanted to feel better. The person commenting is close to me and I know it comes from a place of love so it doesn't bother me too much. I take the part that helps and try and let the rest go. This person (it's hard to label the relationship), has a very strong personal feeling that you can do things to with diet, supplements, exercise, etc. to maintain good health fitness. He's also young and hasn't experienced some of the aging things and illness stuff that comes with living 60 years. :) So I take the advice with a grain of salt and try and focus on the intention and not take on guilt or shame and blame myself for my illness.

    I agree with you that I've known many on here that did all they could and still got this disease. I never smoked a day in my life and now I have a lung tumor while almost everyone in my family smokes and none of them have lung tumors. It's a bit ironic. Life's like this.

    I've got everything scheduled so I'm feeling really good and optimistic. Tomorrow I see the radiation oncologist. Tuesday I see the thoracic surgeon. Thursday I get my biopsy. The week after I will see my oncologist and we will make a decision and do it. 

    Hugs,

    Todd

  • eug91
    eug91 Member Posts: 471 Member
    edited January 2021 #18
    todd121 said:

    Thanks!

    Sounds like great advice! Unfortunately my cook thinks I need to give up everyhing that tastes good and is insistent on me changing my diet. Hahaha. Maybe I'll try for awhile. It can't hurt me. 

    Regarding the vaccination, I've talked to my oncologist and all of my docs, and they know very little about what's going on. They tell me they don't know much more than I know about when we'll get it. Sucks right?

    Todd

    Yeah, at the moment, doesn't surprise me that no one knows anything. But when things change, they'll change quickly. Fingers crossed that you get to jump the line. And of course fingers crossed for you for your upcoming appointments. Let us know how they go!

  • Mighty Frog
    Mighty Frog Member Posts: 152 Member
    edited January 2021 #19
    Hi! Todd!

    HI! Todd! Foremost! TQ! for your updated and for sharing it with us. I'm been following up here from time to time. The member stud1969 mentioned I think is hd67xlch. Yes, he really a good fighter few times lungs met.. and he gets rid of it via surgical only. Maybe u can contact him. At this moment be positive and be strong.... 

     

  • stub1969
    stub1969 Member Posts: 985 Member
    edited January 2021 #20
    Yep--

    Thanks, Mighty Frog, hd67xlch is the person I was thinking of.  He'll be a great resource to you, Todd, on the surgical option.  I'm sure things are moving fast and you're doing your best to keep things straight right now.  Good luck today with your radiation oncologist appointment.

    Stub

  • todd121
    todd121 Member Posts: 1,448 Member
    edited January 2021 #21
    stub1969 said:

    Yep--

    Thanks, Mighty Frog, hd67xlch is the person I was thinking of.  He'll be a great resource to you, Todd, on the surgical option.  I'm sure things are moving fast and you're doing your best to keep things straight right now.  Good luck today with your radiation oncologist appointment.

    Stub

    Radiation and Lung Met

    So it turns out this met is right up against a rib on the outside wall of my lung. They will need to radiate the rib as well as the met. I didn't see the surgeon yet, but I'm already feeling I made my decision. I can't see how surgically they can get clear margins with the tumor up against the rib unless they remove the rib and I won't be doing that. I met my radiation oncologist today at City of Hope and I really like him. Plan is to do SBRT and 3-5 sessions. I'd need to go in 6 times maximum for outpatient treatment. Being in the hospital during covid is another concern I'm having right now. There's a chance of a cracked rib down the road but I was told that would heal. I will still talk to the surgeon on Tuesday to see what he says.

    Next steps are surgeon consult, biopsy, brain MRI, then decision time with my oncologist. Will also discuss systemic therapy with him I suppose if they find any other mets. I'm hoping they don't.

    Thanks everyone! Good to see the old names here like stub but also the new names as well (although I'm sad to see anyone that has to be here).

    Todd

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