Anyone with experience pc mets to lungs?

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Anyone with experience pc mets to lungs?

by Claity on Thu Nov 29, 2018 06:31 PM

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I am 10 years out from pc diagnosis and am dealing with mets in both lungs. Had one surgically removed but it grew back aggressively along surgery line. My oncologist says so few people live long enough with pc to get mets to their lungs that he has no experience with it. He’s not alone - other specialists have said same. I’m wondering if there’s anyone out there who has experience with this, either as the patient or as family? I’d like to know what it looks like down the road. It is different enough from lung cancer, I guess, that people with that experience can’t help me. Appreciate any feedback. Thanks...

RE: Anyone with experience pc mets to lungs?

by GBAdvanced on Thu Nov 29, 2018 10:39 PM

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https://www.cancercenter.com/treatments/peptide-receptor-rad

you should evaluate the above if its only 1 or 2 lesions.

RE: Anyone with experience pc mets to lungs?

by Claity on Fri Dec 07, 2018 12:37 AM

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Thanks for the link. I’m not sure if the parameters apply to me it sounds pretty specific. My mets from recent CT have grown quite a bit. I’m really looking to know, not how to fix it, but how to live with it until I die. It’s funny, there’s only one reply here. You can see how rare this must be. But thanks again for responding.

RE: Anyone with experience pc mets to lungs?

by tootels on Thu Dec 20, 2018 10:53 PM

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On Dec 07, 2018 12:37 AM Claity wrote:

Thanks for the link. I’m not sure if the parameters apply to me it sounds pretty specific. My mets from recent CT have grown quite a bit. I’m really looking to know, not how to fix it, but how to live with it until I die. It’s funny, there’s only one reply here. You can see how rare this must be. But thanks again for responding.

My husband's PC met to his lungs first.  You can actually live a very long with lung mets.  At least that's what they told us.  Our oncologist said things get dangerous when it spreads to the liver.  Unfortunately, my husband recently passed away - he was diagnosed in July 2014 and passed away September 9, 2018. By that point the mets in lungs were all over both lungs, but that was still not what made him uncomfortable.  It wasn't until 2018 that the cancer spread to his liver, bones and brain.  We were told that that was very rare for a PC patient to live long enough for brain mets.  Anyway, my husband was very, very active until literally the last 2 weeks of his life.  The lung mets never slowed him down, it was when it went everywhere else that he finally became bedridden and then passed.  Best of of luck to you Claity!  I can see that you're always offering others good advice and kind words.  :)

Trudie

RE: Anyone with experience pc mets to lungs?

by Claity on Wed Dec 26, 2018 07:48 PM

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Well I’m sorry that you lost your husband but truly appreciate that you’re taking the time to help me through this. The lung mets didn’t make me uncomfortable until lately when I’ve had definite problems getting enough air into my lungs. Someone on another thread also told me that her mother had mets like this but it didn’t slow her down until two weeks before she died, so his story is very similar and makes me feel a whole lot better, looking down the road at what will happen to me. Thank you so very much for replying.

RE: Anyone with experience pc mets to lungs?

by kwoods on Sat Jan 26, 2019 02:45 PM

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On Nov 29, 2018 6:31 PM Claity wrote:

I am 10 years out from pc diagnosis and am dealing with mets in both lungs. Had one surgically removed but it grew back aggressively along surgery line. My oncologist says so few people live long enough with pc to get mets to their lungs that he has no experience with it. He’s not alone - other specialists have said same. I’m wondering if there’s anyone out there who has experience with this, either as the patient or as family? I’d like to know what it looks like down the road. It is different enough from lung cancer, I guess, that people with that experience can’t help me. Appreciate any feedback. Thanks...

I was diagnosed with numerous small nodules in all lobes of both lungs in July 2016 I had a succesful Whipple in Feb 2015

The nodules have been growing very slowly over the past couple of years and I have had no symptoms My oncologist said that this is very rare and I have scans every 6 months to monitor growth. Apart from this I have had no treatment I feel as if I am in Limbo as they cant tell me how its going to progress as they dont have statistics on people like me

All as they can do is watch and wait 

RE: Anyone with experience pc mets to lungs?

by Claity on Tue Jan 29, 2019 09:39 PM

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My nodules also grew very slowly, were first seen in 2014 when I had a scan for something else. They’ve been very slowly growing. Isn’t it interesting how slow they grow, when cancer in the pancreas seems to explode. It’s true there’s very few of us out there with lung mets from pancreatic cancer, that’s why I asked. Looks like we’re in the same boat. I will update you when I find out anything about mine. And congrats for surviving the Whipple :). Best of luck (to us both) Claity

RE: Anyone with experience pc mets to lungs?

by kwoods on Wed Jan 30, 2019 07:23 PM

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On Jan 29, 2019 9:39 PM Claity wrote:

My nodules also grew very slowly, were first seen in 2014 when I had a scan for something else. They’ve been very slowly growing. Isn’t it interesting how slow they grow, when cancer in the pancreas seems to explode. It’s true there’s very few of us out there with lung mets from pancreatic cancer, that’s why I asked. Looks like we’re in the same boat. I will update you when I find out anything about mine. And congrats for surviving the Whipple :). Best of luck (to us both) Claity

Thank you for replying. It is so difficult when you dont know anyone else in the same position it makes it a very lonely journey. I am jus waiting on results from my latest scan. I have an appointment with oncologist on 21st Feb. Did you have Whipple or do you still have cancer of Pancreas. Best of luck to you too.

Kathleen

RE: Anyone with experience pc mets to lungs?

by LupeCruz on Fri Feb 01, 2019 10:04 PM

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Hello Claity and all,

My husband had surgery Decembere 17, 2018 to remove the tail of the pancreas, spleen and a 21 lymph nodes.  He was diagnosed with pc iv in May 2015 - spread to the liver, which was why surgery wasn't an option.  Over time things changed and doctor's went through with surgery...long story, but I have posted the history on this website -  another discussion.  The surgeon said that we should expect the tumor markers to increase after surgery and recommended waiting a few months to get a ct scan.  Anyway, his primary oncologist scheduled a ct scan 6 weeks after the surgery.  Today we received the results from his ct scan of a few days ago.  His tumor marker numbers have increased dramatically, there are suspicious spots in his liver and two additional spots on his lungs.  Prior to surgery he had a laparoscopy, and the liver biopsies, surrounding area of the pancreas and stomach wash came back negative, which is why surgery was performed.  Is there anyone out there with this experience?  We were totally optimistic, and are now nervous.

Lupe

RE: Anyone with experience pc mets to lungs?

by Claity on Thu Feb 21, 2019 08:25 PM

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Hi Kathleen. Sorry it’s taken so long for me to reply, but I notice that you’re appointment is today. So let me know how it went...Didn’t have Whipple, looks like it will be the mets that take me in the end. But my oncologist told me that’s typically how it works. Best of luck today.
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