› Forums › General Melanoma Community › Is surgery or radiation better for my shoulder and collar tumors?
- This topic has 42 replies, 5 voices, and was last updated 10 years, 4 months ago by
arthurjedi007.
- Post
-
- January 8, 2015 at 4:34 pm
I have about a 10 x 9 cm tumor in my left shoulder and about the size of a small fist in my left collar. Kind of looks like a hunchback mass of tissue pressing my left shoulder down a couple inches lower than it should. Keytruda has helped slow down it's growth but is not enough. Also measuring with a tape measure it has increased 50% since my last scan in early November. From 4 x 4.5 inches to 6 x 6.5 inches. So I think the keytruda is losing the fight at least with this tumor.
My radiation doc has been ready to treat it for three weeks. It would be 45 gray in 15 treatments. He will not do a higher dose because of all the nerves I could end up with a dead arm. He believes the radiation would end the pain, probably return a lot of mobility to the arm. However he's not sure it would decrease the size of the tumor by any significant amount. He's at Saint Louis at Missouri Baptist. Also my Mayo medical onc believes this is what I should do because radiation has worked for me in the past.
My Saint Louis medical onc believes I should do surgery. It has taken three weeks and I should finally hear from his nurse what the surgeon says he can do. At best my medical onc believes the surgeon can remove as much of the tumors that can be safely removed without putting me in jeopardy. At worse they can only remove a small sample. But it is the surgeon who will really have to say. I also suspect it will probably be another three weeks before I can talk to the surgeon and they are fairly ready to start because it seems to take Siteman a long time to get things done. Not saying they are bad it just takes way longer than Missouri Baptist or Mayo which are the only other places I've had things done. I wouldn't be in such a hurry except the choking sensation I'm getting I think from the collar tumor seems to be getting worse fast.
Anyway I have my Mayo medical onc saying radiation and my Saint Louis medical onc saying surgery. I've had radiation four times and all have done me good. Except for a minor surgery to take out a couple Squamish stuff the zelboraf caused I've not had surgery.
Im at a loss of which doc to listen to. Any thoughts?
Artie
- Replies
-
-
- January 8, 2015 at 5:33 pm
Well never mind. Just got the call the surgeon is not willing to do the surgery. He'll do multiple biopsies for tissue samples and that is it. Soooo I guess after that is done I'm either off to get into a trial or I get it radiated then off to trial. I dunno.
Artie
-
- January 8, 2015 at 5:33 pm
Well never mind. Just got the call the surgeon is not willing to do the surgery. He'll do multiple biopsies for tissue samples and that is it. Soooo I guess after that is done I'm either off to get into a trial or I get it radiated then off to trial. I dunno.
Artie
-
- January 8, 2015 at 5:33 pm
Well never mind. Just got the call the surgeon is not willing to do the surgery. He'll do multiple biopsies for tissue samples and that is it. Soooo I guess after that is done I'm either off to get into a trial or I get it radiated then off to trial. I dunno.
Artie
-
- January 8, 2015 at 7:27 pm
Well Artie, it seems your doctors are not giving you many options here. Has anyone suggested Palladium seeding? My thoracic surgeon suggested this for me (which I haven't done yet). The way he explained it, they insert a needle to the center of the tumor and inject a Palladium "seed" (small pellet) which has a destructive impact on cells within 1 cm of the seed (so 1 seed would work for a 2 cm tumor. Presumably a larger tumor would use more seeds spread out). I'm afraid I don't know much more about it than that nor do I know its effectiveness when compared with traditional radiation. But it seems more targeted and might be worth a conversation…
Best of luck to you, Artie. I'm pulling hard for you! (I'm almost finished with the Radical Remission book. Really some amazing stories in there with health turnarounds happening at the 11th hour for some people).
Maggie
-
- January 8, 2015 at 7:27 pm
Well Artie, it seems your doctors are not giving you many options here. Has anyone suggested Palladium seeding? My thoracic surgeon suggested this for me (which I haven't done yet). The way he explained it, they insert a needle to the center of the tumor and inject a Palladium "seed" (small pellet) which has a destructive impact on cells within 1 cm of the seed (so 1 seed would work for a 2 cm tumor. Presumably a larger tumor would use more seeds spread out). I'm afraid I don't know much more about it than that nor do I know its effectiveness when compared with traditional radiation. But it seems more targeted and might be worth a conversation…
Best of luck to you, Artie. I'm pulling hard for you! (I'm almost finished with the Radical Remission book. Really some amazing stories in there with health turnarounds happening at the 11th hour for some people).
Maggie
-
- January 8, 2015 at 7:27 pm
Well Artie, it seems your doctors are not giving you many options here. Has anyone suggested Palladium seeding? My thoracic surgeon suggested this for me (which I haven't done yet). The way he explained it, they insert a needle to the center of the tumor and inject a Palladium "seed" (small pellet) which has a destructive impact on cells within 1 cm of the seed (so 1 seed would work for a 2 cm tumor. Presumably a larger tumor would use more seeds spread out). I'm afraid I don't know much more about it than that nor do I know its effectiveness when compared with traditional radiation. But it seems more targeted and might be worth a conversation…
Best of luck to you, Artie. I'm pulling hard for you! (I'm almost finished with the Radical Remission book. Really some amazing stories in there with health turnarounds happening at the 11th hour for some people).
Maggie
-
- January 9, 2015 at 3:58 pm
Thanks Maggie. I remember reading about those pellets from someone on here before but never thought of asking my docs about it.
Artie
-
- January 9, 2015 at 3:58 pm
Thanks Maggie. I remember reading about those pellets from someone on here before but never thought of asking my docs about it.
Artie
-
- January 9, 2015 at 3:58 pm
Thanks Maggie. I remember reading about those pellets from someone on here before but never thought of asking my docs about it.
Artie
-
- January 8, 2015 at 7:42 pm
Artie,
So sorry you are dealing with this "new" sensation/situation. That cannot be fun!! You have responded well to radiation in the past. So I am hopeful that you will again if that is what you decide to do. Any other thoughts I have are related to things you really already know.
Can the surgeon at least bank cells for TIL, should you decide to do that? I know you've been looking into several of those options.
Intralesional therapy? Sounds like your tumor might be accesible for that. What the heck? Some folks are seeing good responses.
Anti-LAG3? I know you had been considering that as well.
Guess that's about all the brilliant ideas I have at the moment. Hang in there!! Love, c
-
- January 9, 2015 at 4:23 pm
Thanks Celeste. I hope the radiation when I finally can get to it works good.
For that type of TIL with that n receptor thing yeah I think that is what some of the multiple biopsies will be used for. When they finally get around to the multiple biopsies that is. Over three weeks and counting.
Most intralesional I'm excluded from or they are just that which would leave the rest of my tumors untreated. But there is an awesome one coming up that I could do which sounds perfect. It combines keytruda with il-12. But it hasn't started yet. I called the San fransisco trial coordinator and the public relations folks and got no answers. So I really can't wait for something that might happen. But that il-12 just by itself had an over 50% response plus I think about that on even untreated tumors. So if it was available now I would jump on that in heart beat. After radiation though it did say if the lesions are still growing I would still be eligible. Of course I hope the radiation takes care of it.
Yeah anti lag3 is in Chicago with opdivo. My concern is the tumors thst did not respond to pd1 will they respond just by adding anti lag3. Or is anti lag really for tumors that initially responded but no longer respond. For me when I see my pet scan as best as I can tell the tumors that responded have done so in a big way in that they must be so small I can't see the dot anymore. But the tumors that didn't respond it is obvious they are still there and getting bigger. So I dunno. Something to ask the doc if I hopefully get to Chicago. I went shopping with dad yesterday for less than an hour including over half that was his driving. It took me a three hour nap to recover. So I dunno I'm just not in great health. But like dad said he thinks it is the radiation they finished on my hip and leg three weeks ago that is tiring me out. I dunno but definitely not in good shape for a trip. At least keytruda is still working a lot so I'm thankful for that it just isnt enough by itself.
Artie
-
- January 9, 2015 at 4:23 pm
Thanks Celeste. I hope the radiation when I finally can get to it works good.
For that type of TIL with that n receptor thing yeah I think that is what some of the multiple biopsies will be used for. When they finally get around to the multiple biopsies that is. Over three weeks and counting.
Most intralesional I'm excluded from or they are just that which would leave the rest of my tumors untreated. But there is an awesome one coming up that I could do which sounds perfect. It combines keytruda with il-12. But it hasn't started yet. I called the San fransisco trial coordinator and the public relations folks and got no answers. So I really can't wait for something that might happen. But that il-12 just by itself had an over 50% response plus I think about that on even untreated tumors. So if it was available now I would jump on that in heart beat. After radiation though it did say if the lesions are still growing I would still be eligible. Of course I hope the radiation takes care of it.
Yeah anti lag3 is in Chicago with opdivo. My concern is the tumors thst did not respond to pd1 will they respond just by adding anti lag3. Or is anti lag really for tumors that initially responded but no longer respond. For me when I see my pet scan as best as I can tell the tumors that responded have done so in a big way in that they must be so small I can't see the dot anymore. But the tumors that didn't respond it is obvious they are still there and getting bigger. So I dunno. Something to ask the doc if I hopefully get to Chicago. I went shopping with dad yesterday for less than an hour including over half that was his driving. It took me a three hour nap to recover. So I dunno I'm just not in great health. But like dad said he thinks it is the radiation they finished on my hip and leg three weeks ago that is tiring me out. I dunno but definitely not in good shape for a trip. At least keytruda is still working a lot so I'm thankful for that it just isnt enough by itself.
Artie
-
- January 10, 2015 at 12:34 pm
Artie, one of my dad's oncs at UCSF is heading that trial. They did start a a month or so ago, but when I asked him about it a couple weeks ago, he said they're still enrolling.
-
- January 10, 2015 at 12:34 pm
Artie, one of my dad's oncs at UCSF is heading that trial. They did start a a month or so ago, but when I asked him about it a couple weeks ago, he said they're still enrolling.
-
- January 10, 2015 at 12:34 pm
Artie, one of my dad's oncs at UCSF is heading that trial. They did start a a month or so ago, but when I asked him about it a couple weeks ago, he said they're still enrolling.
-
- January 10, 2015 at 12:38 pm
I mean the Keytruda/IL-12 trial. I'll try to find a better contact person for you.
-
- January 10, 2015 at 12:38 pm
I mean the Keytruda/IL-12 trial. I'll try to find a better contact person for you.
-
- January 10, 2015 at 12:38 pm
I mean the Keytruda/IL-12 trial. I'll try to find a better contact person for you.
-
- January 10, 2015 at 3:53 pm
Wow that would be awesome. Thanks so much.
Artie
-
- January 10, 2015 at 3:53 pm
Wow that would be awesome. Thanks so much.
Artie
-
- January 10, 2015 at 3:53 pm
Wow that would be awesome. Thanks so much.
Artie
-
- January 11, 2015 at 5:02 am
I sent an e-mail to the girl who coordinated the last trial they started to find out if she's the coordinator for this one or if she can direct me to the person who is. I let her know that you had already tried to contact them a couple times. She's a sweetheart, so hopefully she'll get back to me on Monday. I'll let you know what I hear!
-
- January 13, 2015 at 8:13 pm
Ok thanks much. I'm still waiting on the docs to do the multiple biopsy for tissue samples for the future. Almost 4 weeks and counting. Yesterday we tried at my radiation doc hospital but still nowhere. Oh well.
Artie
-
- January 13, 2015 at 8:13 pm
Ok thanks much. I'm still waiting on the docs to do the multiple biopsy for tissue samples for the future. Almost 4 weeks and counting. Yesterday we tried at my radiation doc hospital but still nowhere. Oh well.
Artie
-
- January 13, 2015 at 8:13 pm
Ok thanks much. I'm still waiting on the docs to do the multiple biopsy for tissue samples for the future. Almost 4 weeks and counting. Yesterday we tried at my radiation doc hospital but still nowhere. Oh well.
Artie
-
- January 11, 2015 at 5:02 am
I sent an e-mail to the girl who coordinated the last trial they started to find out if she's the coordinator for this one or if she can direct me to the person who is. I let her know that you had already tried to contact them a couple times. She's a sweetheart, so hopefully she'll get back to me on Monday. I'll let you know what I hear!
-
- January 11, 2015 at 5:02 am
I sent an e-mail to the girl who coordinated the last trial they started to find out if she's the coordinator for this one or if she can direct me to the person who is. I let her know that you had already tried to contact them a couple times. She's a sweetheart, so hopefully she'll get back to me on Monday. I'll let you know what I hear!
-
- January 9, 2015 at 4:23 pm
Thanks Celeste. I hope the radiation when I finally can get to it works good.
For that type of TIL with that n receptor thing yeah I think that is what some of the multiple biopsies will be used for. When they finally get around to the multiple biopsies that is. Over three weeks and counting.
Most intralesional I'm excluded from or they are just that which would leave the rest of my tumors untreated. But there is an awesome one coming up that I could do which sounds perfect. It combines keytruda with il-12. But it hasn't started yet. I called the San fransisco trial coordinator and the public relations folks and got no answers. So I really can't wait for something that might happen. But that il-12 just by itself had an over 50% response plus I think about that on even untreated tumors. So if it was available now I would jump on that in heart beat. After radiation though it did say if the lesions are still growing I would still be eligible. Of course I hope the radiation takes care of it.
Yeah anti lag3 is in Chicago with opdivo. My concern is the tumors thst did not respond to pd1 will they respond just by adding anti lag3. Or is anti lag really for tumors that initially responded but no longer respond. For me when I see my pet scan as best as I can tell the tumors that responded have done so in a big way in that they must be so small I can't see the dot anymore. But the tumors that didn't respond it is obvious they are still there and getting bigger. So I dunno. Something to ask the doc if I hopefully get to Chicago. I went shopping with dad yesterday for less than an hour including over half that was his driving. It took me a three hour nap to recover. So I dunno I'm just not in great health. But like dad said he thinks it is the radiation they finished on my hip and leg three weeks ago that is tiring me out. I dunno but definitely not in good shape for a trip. At least keytruda is still working a lot so I'm thankful for that it just isnt enough by itself.
Artie
-
- January 8, 2015 at 7:42 pm
Artie,
So sorry you are dealing with this "new" sensation/situation. That cannot be fun!! You have responded well to radiation in the past. So I am hopeful that you will again if that is what you decide to do. Any other thoughts I have are related to things you really already know.
Can the surgeon at least bank cells for TIL, should you decide to do that? I know you've been looking into several of those options.
Intralesional therapy? Sounds like your tumor might be accesible for that. What the heck? Some folks are seeing good responses.
Anti-LAG3? I know you had been considering that as well.
Guess that's about all the brilliant ideas I have at the moment. Hang in there!! Love, c
-
- January 8, 2015 at 7:42 pm
Artie,
So sorry you are dealing with this "new" sensation/situation. That cannot be fun!! You have responded well to radiation in the past. So I am hopeful that you will again if that is what you decide to do. Any other thoughts I have are related to things you really already know.
Can the surgeon at least bank cells for TIL, should you decide to do that? I know you've been looking into several of those options.
Intralesional therapy? Sounds like your tumor might be accesible for that. What the heck? Some folks are seeing good responses.
Anti-LAG3? I know you had been considering that as well.
Guess that's about all the brilliant ideas I have at the moment. Hang in there!! Love, c
-
- January 9, 2015 at 5:02 am
Artie, I have been praying for you. I go to Siteman as well. I pray that you will know what to do and that you get relief! You are so encouraging to others. Just wanted you to know that I can see that you care about others…and we care about you. God bless.
-
- January 9, 2015 at 4:27 pm
Thank you so much. I really appreciate the kind words a lot. Lots and lots of prayers are good too 🙂
Maybe I'll see you at Siteman some day. Lol
Artie
-
- January 9, 2015 at 4:27 pm
Thank you so much. I really appreciate the kind words a lot. Lots and lots of prayers are good too 🙂
Maybe I'll see you at Siteman some day. Lol
Artie
-
- January 9, 2015 at 4:27 pm
Thank you so much. I really appreciate the kind words a lot. Lots and lots of prayers are good too 🙂
Maybe I'll see you at Siteman some day. Lol
Artie
-
- January 9, 2015 at 5:02 am
Artie, I have been praying for you. I go to Siteman as well. I pray that you will know what to do and that you get relief! You are so encouraging to others. Just wanted you to know that I can see that you care about others…and we care about you. God bless.
-
- January 9, 2015 at 5:02 am
Artie, I have been praying for you. I go to Siteman as well. I pray that you will know what to do and that you get relief! You are so encouraging to others. Just wanted you to know that I can see that you care about others…and we care about you. God bless.
-
- January 9, 2015 at 9:43 am
Artie, I'm coming at this with zero knowledge on the topic, but my first thought before reading your follow-up post was to do the radiation since you've had luck with that before and then follow with surgery later if necessary. What was the surgeon's rationale for refusing surgery? If it was because of the size of the tumor, might he be willing to do it if the radiation shrinks it? Would this be something you might want a second surgical opinion on?
Anyway, I don't think the radiation is a bad start at all, especially if it helps with the pain and maybe shrinks things a bit to ease your swallowing.
-
- January 9, 2015 at 9:43 am
Artie, I'm coming at this with zero knowledge on the topic, but my first thought before reading your follow-up post was to do the radiation since you've had luck with that before and then follow with surgery later if necessary. What was the surgeon's rationale for refusing surgery? If it was because of the size of the tumor, might he be willing to do it if the radiation shrinks it? Would this be something you might want a second surgical opinion on?
Anyway, I don't think the radiation is a bad start at all, especially if it helps with the pain and maybe shrinks things a bit to ease your swallowing.
-
- January 9, 2015 at 4:38 pm
Thanks. That is funny because my Mayo doc also said I should do radiation because it has worked for me before.
Those are good things to ask the surgeon. I haven't heard yet when I'm supposed to see him. All I know is I waited three weeks for my medical onc to talk to the surgeon. Then I heard from my medical onc nurse that they wouldn't do surgery but she didn't know specifics just that I should hear from the surgeons nurse to start the process of getting multiple biopsies done. It wouldn't surprise me if they only talked about the shoulder tumor and not the collar tumor which is what is causing the choking.
We shall see.
Artie
-
- January 9, 2015 at 4:38 pm
Thanks. That is funny because my Mayo doc also said I should do radiation because it has worked for me before.
Those are good things to ask the surgeon. I haven't heard yet when I'm supposed to see him. All I know is I waited three weeks for my medical onc to talk to the surgeon. Then I heard from my medical onc nurse that they wouldn't do surgery but she didn't know specifics just that I should hear from the surgeons nurse to start the process of getting multiple biopsies done. It wouldn't surprise me if they only talked about the shoulder tumor and not the collar tumor which is what is causing the choking.
We shall see.
Artie
-
- January 9, 2015 at 4:38 pm
Thanks. That is funny because my Mayo doc also said I should do radiation because it has worked for me before.
Those are good things to ask the surgeon. I haven't heard yet when I'm supposed to see him. All I know is I waited three weeks for my medical onc to talk to the surgeon. Then I heard from my medical onc nurse that they wouldn't do surgery but she didn't know specifics just that I should hear from the surgeons nurse to start the process of getting multiple biopsies done. It wouldn't surprise me if they only talked about the shoulder tumor and not the collar tumor which is what is causing the choking.
We shall see.
Artie
-
- January 9, 2015 at 9:43 am
Artie, I'm coming at this with zero knowledge on the topic, but my first thought before reading your follow-up post was to do the radiation since you've had luck with that before and then follow with surgery later if necessary. What was the surgeon's rationale for refusing surgery? If it was because of the size of the tumor, might he be willing to do it if the radiation shrinks it? Would this be something you might want a second surgical opinion on?
Anyway, I don't think the radiation is a bad start at all, especially if it helps with the pain and maybe shrinks things a bit to ease your swallowing.
-
- You must be logged in to reply to this topic.