Getting on that roller coaster again, ugh - Update

traci43

Hi all - It's been a while since I've posted and I hate coming back with bad news, but here goes.  I now have a suspicious nodule in my lung that is likely colon metastsis.  I meet with a surgeon Wednesday to discuss possible surgical removal.  No biopsy yet, but that will likely be discussed as the person that read the PET Scan suggest it could be primary lung.  God I hope not.  Two cancers are enough for me.  As usual, totally asymptomatic.  My CEA which used to be a great indicator for me just went from 2.7 to 1.8, so who knows. 

I came back to the board to look up what others have done for lung mets.  My oncologist told me I am a good candidate for VATS surgery to do a lobectomy.  While I have always preferred surgical removal to chemo, I'm a little nervous about taking part of my lung.  I'm also a bit sad that it's it something important, in the past it's been mostly the fat or soft tissue, although in 2017 it was on the outside of my small intestine.

I guess after 11 years, the cancer must be mutating a bit since my CEA isn't a great indicator and where the metastses are is changing.  Still I'm here still working and living life.  My CML (chronic myelogenous leukemia) is in remission, so that's a big plus.I've also hit a milestone at work--25 years!  Wasn't sure I would get there when I was first diagnosed in 2007.  Each recurrance made me think about early retirement, but I kept working.  Now that I can retire, I'm a bit nervous.  I think it's been good for me to keep working, keep moving forward.

Anyway, if anyone has experience with lung mets, let me know what worked for you.  My oncologist also talked about one-time radiation of the nodule.  I guess I will know more on Wednesday.  Thanks for listening.  Traci

Update - I saw the surgeon yesterday and he feels that VATS with just a wedge resection is best.  He says my prognosis would be pretty much the same either way because the met is so small, 1/2.  Surgery scheduled for June 28, one night in hospital if all goes well and then home for two weeks before going back to work.

JanJan63

Oh no, that's crappy. I have

Oh no, that's crappy. I have 3 or 4 mets in my lung and we use chemo only to deal with it at this point. I had them radiated once and they stopped for about a year but then started growing again. The pulmonary guy refused to remove the lung because he didn't think I'd survive the surgery. That's all I have to offer, sorry. I hope they're able to deal with it for you and it isn't too nasty to go through.

Jan

plsletitrain

Totally understand you

I thought I was on the clear already with all my organs clear since last year only for that single lung nodule.  I'm still about to meet with my onco on what he would suggest but I'm more inclined to have the VATS as soon as possible so I can start from there.  I'm praying its benign but the possibility of it being a met or a primary is still open.  I've been down but having the surgery gives me hope. Good luck to us.

traci43

JanJan63 said:

Oh no, that's crappy. I have

Oh no, that's crappy. I have 3 or 4 mets in my lung and we use chemo only to deal with it at this point. I had them radiated once and they stopped for about a year but then started growing again. The pulmonary guy refused to remove the lung because he didn't think I'd survive the surgery. That's all I have to offer, sorry. I hope they're able to deal with it for you and it isn't too nasty to go through.

Jan

thanks Jan

jan, sorry to hear you're not a candidate for surgery, that's always my preferred option.  I think I am a candidate because it's only 1 met (that they can see, but that is usually the case for me) and it's high up on the upper left lobe.  We'll see waht the surgeon says tomorrow.  Traci

traci43

plsletitrain said:

Totally understand you

I thought I was on the clear already with all my organs clear since last year only for that single lung nodule.  I'm still about to meet with my onco on what he would suggest but I'm more inclined to have the VATS as soon as possible so I can start from there.  I'm praying its benign but the possibility of it being a met or a primary is still open.  I've been down but having the surgery gives me hope. Good luck to us.

plsletitrain

You must live in the desert or So Cal with a name like that!  I live in So Cal and would love more rain.

I'd love for mine to be benign, but since it lights up on PET, I'm not holding my breath for that.  I would prefer colon met over lung primary.  Odd thing is I have had a nodule in my right lung since my first CT Scan in 2007, it's never grown and has actually shrunk now, so we have considered it benign.  When the covering oncologist's nurse-yes not even the covering oncologist (mine was on vacation) spoke to me she never mentioned right or left so I thought it was the benign one in the right lung and said I would wait for my oncologist to return and discuss with him. I totally dismissed it!  Boy was I surprised when the covering oncologist called later in the week and mentioned my left lung. That changed everything.

Hopefully your nodule is benign and not a met. I haven't been on in a long time so I don't know if you had a PET scan and it showed activity, I hope not.  It could be benign like mine in my right lung.  In any case, I hope you get the answers you need.  Traci

Trubrit

Traci, I so want to say 'its good to see you here'

but I am saddened by the reason. 

You are one of our 'old timers' - not age wise, of course - and it hurts to see you back in the battle.  

I pray, if it has to be Cancer, that it is metastasis and not a new primary.  You've had your fair share and more. 

I really need to get back to SoCal and meet you and Dave, and meet up again with Yollimbs and Laz.  

WE've got your back and will wait with held breath for your news tomrorow. 

Cyber hugs!

Tru

impactzone

Hello,

Hello,

4 thoracic surgeries here including 2 VATS. All went well at Stanford. its 12 years now after stage 4 dx. i still ski and surf and can do most things after the surgery. All my best

Chip

abrub

Darn, Traci.

I hate to hear that you're in the thick of it again.  I hope that whatever this is, it is the most benign option.  Thinking of you.

Alice

plsletitrain

traci43 said:

plsletitrain

You must live in the desert or So Cal with a name like that!  I live in So Cal and would love more rain.

I'd love for mine to be benign, but since it lights up on PET, I'm not holding my breath for that.  I would prefer colon met over lung primary.  Odd thing is I have had a nodule in my right lung since my first CT Scan in 2007, it's never grown and has actually shrunk now, so we have considered it benign.  When the covering oncologist's nurse-yes not even the covering oncologist (mine was on vacation) spoke to me she never mentioned right or left so I thought it was the benign one in the right lung and said I would wait for my oncologist to return and discuss with him. I totally dismissed it!  Boy was I surprised when the covering oncologist called later in the week and mentioned my left lung. That changed everything.

Hopefully your nodule is benign and not a met. I haven't been on in a long time so I don't know if you had a PET scan and it showed activity, I hope not.  It could be benign like mine in my right lung.  In any case, I hope you get the answers you need.  Traci

Lit up on PET

Sadly, it did grow and its SUV increased so there's a kinda a big possibility that its cancerous.  I do believe in miracles though so I'm praying for one, that its benign.  Nonetheless, if indeed its cancerous, at least we're taking steps to eradicate.  Starting with the VATS first then I'll move from there.  Here's to hoping for speedy recovery for both of us.  And of course, that our nodules are benign.  Take care.  Keep us posted.

beaumontdave

traci43 said:

plsletitrain

You must live in the desert or So Cal with a name like that!  I live in So Cal and would love more rain.

I'd love for mine to be benign, but since it lights up on PET, I'm not holding my breath for that.  I would prefer colon met over lung primary.  Odd thing is I have had a nodule in my right lung since my first CT Scan in 2007, it's never grown and has actually shrunk now, so we have considered it benign.  When the covering oncologist's nurse-yes not even the covering oncologist (mine was on vacation) spoke to me she never mentioned right or left so I thought it was the benign one in the right lung and said I would wait for my oncologist to return and discuss with him. I totally dismissed it!  Boy was I surprised when the covering oncologist called later in the week and mentioned my left lung. That changed everything.

Hopefully your nodule is benign and not a met. I haven't been on in a long time so I don't know if you had a PET scan and it showed activity, I hope not.  It could be benign like mine in my right lung.  In any case, I hope you get the answers you need.  Traci

Rain's always good for SoCal,

Rain's always good for SoCal, but I've never read Plsletitrain slow enough to decipher what it meant, lol.  I'm sorry the roller coaster is still rolling for you Traci, I have no experience with lung mets, so all I can do is wish you the best. I have lung nodes listed on my "chart" as well as an incidental tumor on my adrenal gland, but they haven't shown to be anything. Still 3 1/2 years from last surgery, I know things can just pop up whenever, there's no real finish line to this ride. I hope you get this new met knocked out, and get back to watchful waiting, the outer ring in our survivor system....................................Dave

myAZmountain

Lung Mets

HI Traci-newbie on this forum. I was diagnosed with stage 4 with one met to omentum, discovered because appendix ruptured due to the mass blocking off the neck of appendix.m and possible met to lung via CT scan. After srugery to remove colon and omentum mass I had a lung bx that showed mets to Right lower lung, 2 small nodules one slighlty larger than 1cm, one smalller. I was in Northern Va. for this treatment as I was visiting family.  The next step was to have a PET scan when I returned to AZ, the larger lung mass showed up, the smaller not so much.  I was encouraged by oncologist I had in NOrthern Virginina to consider lung resection  and was planning to do so, The oncologist in AZ ordered a high resolution CT scan of lungs  and the radiologist discovered what he thought probable lung mets less than .5 cm in both lungs...too small for PET scan. Oth oncologist then recommended FOLFOX and no lung surgery. So its a tricky thing with lung mets. My personal thought was I know that these cancer cells have been all through my bloodstream so I am happy to do chemo and rescan after 3 months--well as happy as you cn be to be wiped out lol!

traci43

beaumontdave said:

Rain's always good for SoCal,

Rain's always good for SoCal, but I've never read Plsletitrain slow enough to decipher what it meant, lol.  I'm sorry the roller coaster is still rolling for you Traci, I have no experience with lung mets, so all I can do is wish you the best. I have lung nodes listed on my "chart" as well as an incidental tumor on my adrenal gland, but they haven't shown to be anything. Still 3 1/2 years from last surgery, I know things can just pop up whenever, there's no real finish line to this ride. I hope you get this new met knocked out, and get back to watchful waiting, the outer ring in our survivor system....................................Dave

Thanks Dave!

I've had a right lung nodule for 11 years, probably longer and it's finally getting smaller.  I guess they are not uncommon.  Hope yours continue to stay small and you remain NED!  Traci

traci43

Trubrit said:

Traci, I so want to say 'its good to see you here'

but I am saddened by the reason. 

You are one of our 'old timers' - not age wise, of course - and it hurts to see you back in the battle.  

I pray, if it has to be Cancer, that it is metastasis and not a new primary.  You've had your fair share and more. 

I really need to get back to SoCal and meet you and Dave, and meet up again with Yollimbs and Laz.  

WE've got your back and will wait with held breath for your news tomrorow. 

Cyber hugs!

Tru

Good to see you as well

Sue, It's been a while.  I would like to meet you if you're ever this way again.  It's good to see another 'old timer' as well.  Hopefully this is a small blip for me.  Take care, Traci

traci43

impactzone said:

Hello,

Hello,

4 thoracic surgeries here including 2 VATS. All went well at Stanford. its 12 years now after stage 4 dx. i still ski and surf and can do most things after the surgery. All my best

Chip

Thanks!

It's good to hear from others that are doing well after VATS surgery. After 5 surgeries this is a new one for me.  Sounds way easier than abdominal surgery.  Take care, Traci

traci43

abrub said:

Darn, Traci.

I hate to hear that you're in the thick of it again.  I hope that whatever this is, it is the most benign option.  Thinking of you.

Alice

thanks!

Alice, thanks.  I hope you're doing well after your recurrance a year or two ago (I can't remember, sorry).  I will be doing the VATS survery and just a wedge recection, not a lobectomy, so only 1 night in hospital and 2 weeks at home.  Traci

traci43

myAZmountain said:

Lung Mets

HI Traci-newbie on this forum. I was diagnosed with stage 4 with one met to omentum, discovered because appendix ruptured due to the mass blocking off the neck of appendix.m and possible met to lung via CT scan. After srugery to remove colon and omentum mass I had a lung bx that showed mets to Right lower lung, 2 small nodules one slighlty larger than 1cm, one smalller. I was in Northern Va. for this treatment as I was visiting family.  The next step was to have a PET scan when I returned to AZ, the larger lung mass showed up, the smaller not so much.  I was encouraged by oncologist I had in NOrthern Virginina to consider lung resection  and was planning to do so, The oncologist in AZ ordered a high resolution CT scan of lungs  and the radiologist discovered what he thought probable lung mets less than .5 cm in both lungs...too small for PET scan. Oth oncologist then recommended FOLFOX and no lung surgery. So its a tricky thing with lung mets. My personal thought was I know that these cancer cells have been all through my bloodstream so I am happy to do chemo and rescan after 3 months--well as happy as you cn be to be wiped out lol!

Wow

I too had a PET Scan first and found the one met lit up.  Subsequent CT Scan showed just that one met, so I hope that's all he sees when he goes in.  In the past, what has shown up on the PET or CT is what they find.  They have never been surprised by additional mets, so I hope my luck still holds.

For you, I hope the chemo knocks those suckers out, or at least down to where surgery is an option.  You've been through a lot already and you would be looking at chemo anyway, so maybe giving chemo a chance is a good idea rather than more surgery. Wishing you the best.  Traci

abrub

traci43 said:

thanks!

Alice, thanks.  I hope you're doing well after your recurrance a year or two ago (I can't remember, sorry).  I will be doing the VATS survery and just a wedge recection, not a lobectomy, so only 1 night in hospital and 2 weeks at home.  Traci

And another recurrence in November

But we're doing watch and wait.  Over all, I'm doing very well. The newest tumor is growing by slowly,  and hopefully we won't have to do anything for several years.  Wishing you an easy surgery and uneventful recovery.   Alice

Annabelle41415

Post

It was good to see your post but sorry you are dealing with this again.  Always remember your picture - just beautiful.  Hope that your new treatment goes well.  It's great you came back on here to give us an update and get some input from others.  Wishing you the best.

Kim

Rocketman

Mushrooms

Look into Lions mane mushroom extract.  NIH has a study that shows that has anti-cancer properties and can prevent colon cancer from meta to the lungs.  Best source is in Netherlands from Oriveda- but can be shipped to US.  

I had grade 4 peripheral neuropathy from oxalaplatin and was told that it was likely permanent.  Got Lions mane  and it was 50% better in 4 days.  Now after 3 weeks it is almost gone.  Had no feeling in my fingers from  Sept. 2017 till now.  

traci43

abrub said:

And another recurrence in November

But we're doing watch and wait.  Over all, I'm doing very well. The newest tumor is growing by slowly,  and hopefully we won't have to do anything for several years.  Wishing you an easy surgery and uneventful recovery.   Alice

Noooo!

Dear Alice - So sorry to hear that.  You did so well after your initial dx for so long before a recurrance.  I can't believe it's back again.  Praying it's very slow growing.  Traci

traci43

Annabelle41415 said:

Post

It was good to see your post but sorry you are dealing with this again.  Always remember your picture - just beautiful.  Hope that your new treatment goes well.  It's great you came back on here to give us an update and get some input from others.  Wishing you the best.

Kim

Thanks Kim!

It's good to see you still hanging around. I hope you're doing well.  Traci