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Recurrence in Lung

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

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

donna_lee's picture
donna_lee
Posts: 984
Joined: Feb 2009

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

Hugs,

donna_lee

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

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

Todd

Scottie22's picture
Scottie22
Posts: 81
Joined: Apr 2013

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's picture
todd121
Posts: 1449
Joined: Dec 2012

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's picture
Scottie22
Posts: 81
Joined: Apr 2013

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's picture
eug91
Posts: 292
Joined: Jan 2019

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.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

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

eug91's picture
eug91
Posts: 292
Joined: Jan 2019

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!

AliceB1950's picture
AliceB1950
Posts: 102
Joined: Jun 2019

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.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

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

Todd

stub1969's picture
stub1969
Posts: 876
Joined: Jul 2016

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

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

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

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 206
Joined: Oct 2017

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

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

My meditaiton often turns to imagining being at her graduation. Her wedding. Etc. I find having things on my list of things I want to do/see helps calm me and gives me feelings of grattitude and hope. I think these are healing emotions. Thanks for reminding me of her!

lobbyist0724's picture
lobbyist0724
Posts: 437
Joined: Sep 2016

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's picture
todd121
Posts: 1449
Joined: Dec 2012

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

Todd

a_oaklee
Posts: 551
Joined: Nov 2013

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's picture
todd121
Posts: 1449
Joined: Dec 2012

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

Mighty Frog's picture
Mighty Frog
Posts: 151
Joined: Jul 2017

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's picture
stub1969
Posts: 876
Joined: Jul 2016

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's picture
todd121
Posts: 1449
Joined: Dec 2012

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

Iggyrip's picture
Iggyrip
Posts: 44
Joined: Sep 2016

Hello Todd, I was reading some posts and saw yours. I am so sorry to hear about the new met. You probably don't remember me but we talked over two years ago when I was first diagnosed State Four. You responded to one of my posts and gave me some good information. ( Thank you for the referral to Dr. Quinn at USC Med Center). This stage of cancer is tough but you will get through it. You've got great doctors at City of Hope and a range of treatments. Thanx to my doctors and Sutent,  I have been stable for over a year and a half now. It has taken a while to get here, but I pray each day things stay stable for me. 

Prayers out to you. Take care,

 

Iggyrip

 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Glad to hear you're stable. I liked Dr. Quinn. We are lucky to have so many options. There are actually more options than time in my case. 

 

Todd

Allochka's picture
Allochka
Posts: 940
Joined: Nov 2014

Oh Todd, sorry to hear about recurrence! But hopefully radiation would clear it, and hopefully it is the only met.

After all, so many guys are Stage 4 here and currently NED. Donna was first to reply to you, and she knows this path...

No giving up! You yourself sound rather confident, hopefully you really feel that way.

Hugs!

 

Deanie0916
Posts: 369
Joined: Nov 2016

Sorry for this news. Looks like you have good options for treatment! Keep pressing on, we are with you as much as we can be via this board. Prayers and good vibes for you. Thank you for how you've encouraged so many here.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I thought I had decided then started researching SBRT and rib fractures and chest wall pain and now I'm not sure. The met is right up against the rib and chest wall. I will see the surgeon again after the MRI. Had the biopsy on Thursday. MRI to chest and brain Monday. Surgeon Tuesday and then I'll talk to Dr. Pal and we will decide. SBRT is scheduled to start Wednesday but it's possible I'll change my mind and go for surgery if the surgeon thinks he can get it all and he's thinking he can leave the rib alone. I'm not too excited to have part of a rib removed, but it might be better than an unintentional crack from radiation, which seems like a high probability.

daisybud's picture
daisybud
Posts: 500
Joined: Jan 2016

Sorry to hear your news.  Sounds like you have a good team and a good plan going forward.  Sending you prayers and tons of good vibes.

Kim

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