Lisa42 - Question re Lung Mets
I just copied a bit of information from another post you made because I have a question or two and am curious because we seem to be in a similar, although not exactly the same situation.
-8/08- PET scan showed recurrence- 1 lesion in liver & numerous in lungs- back on chemo
-3/09- CT scan showed liver lesion and hilar lymph gone, but nodules in lungs still no change.
-4/2/09- had PET scan- it showed "no evidence of any metabolically active metastases"
I'll be starting soon on "maintenance" treatment to keep it from growing or becoming active again.
When you had the PET scan on 8/08 and they found the numerous nodules in the lungs, did all these lung nodules light up the PET scan? Were they big enough so that they registered on the PET scan?
On 3/09, a CAT scan was done and when you say there was no change in the nodules in the lungs, does that mean they were still the same size as they originally were on the PET scan 7 months before in August... hence still lit up the PET?
So now we come to yesterday and the PET shows "no evidence of any metabolically active metastases" (which is fabulous!!!) which I take to mean that none of the nodules lit up the PET scan. So am I correct in thinking that the chemo you were on has managed to shrink the nodules so they are now small enough that they don't light up the PET scan? Hence you are now going to be going on Maintenance chemo to try and make sure the nodules remain small and don't get to the size where they are now detected by a PET?
I know our situations are slightly different... I, too, have numerous nodules in the lungs but mine have not grown to a size where they are detected on the PET and are the size that we would want chemo to shrink them to...so as long as they stay small, we are not starting any chemo. But should they start to grow, then chemo would be one of my options.
Thanks!
Cheryl
Comments
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PET scans
Hi Cheryl,
From my understanding of what my doctors have told me, my lung nodules are the exact same size now as they were back in 8/08 when they lit up on the PET- their size had nothing to do with them lighting up on the PET or not. My chemo apparently did not shrink them (although the chemo did shrink away a couple of them, but not most), but the chemo did affect them by making them no longer metabolically active (or at least not enough to register on the PET). But they did register on the PET at this same size with what the radiologist wrote as "quite intense metabolic uptake". I remember before when I mentioned my Dr. was wanting a PET that you commented that it may not be warranted if everything is under a centimeter- but they were all under a centimeter when they lit up before in August.
I think it has to do with the intensity of the metabolic activity that determines whether they light up or not, although size may have something to do with it, too.
Because of the intensity of the nodules on the PET in August, this is why they were so concerned and why I definitely agree that I don't want to just wait and see what happens while being off chemo. Your situation must obviously be different in that you've been off chemo for 17 months (I think that's what you said) and it's all still subcentimeter.
I still haven't ever actually found out how many lung nodules I have. A few scans ago talked about 3 nodules, then the next one identified more. This time it called them "multiple nodules", but then said there were no new nodules- kind of like you finding out you had 11 when you thought it was less. I'm seeing my oncologist on Monday & he was supposed to be looking at my CT and PET before then, so hopefully he can tell me or maybe even show me how many "multiple" is!
Take care!
Lisa0 -
Confusing myselflisa42 said:PET scans
Hi Cheryl,
From my understanding of what my doctors have told me, my lung nodules are the exact same size now as they were back in 8/08 when they lit up on the PET- their size had nothing to do with them lighting up on the PET or not. My chemo apparently did not shrink them (although the chemo did shrink away a couple of them, but not most), but the chemo did affect them by making them no longer metabolically active (or at least not enough to register on the PET). But they did register on the PET at this same size with what the radiologist wrote as "quite intense metabolic uptake". I remember before when I mentioned my Dr. was wanting a PET that you commented that it may not be warranted if everything is under a centimeter- but they were all under a centimeter when they lit up before in August.
I think it has to do with the intensity of the metabolic activity that determines whether they light up or not, although size may have something to do with it, too.
Because of the intensity of the nodules on the PET in August, this is why they were so concerned and why I definitely agree that I don't want to just wait and see what happens while being off chemo. Your situation must obviously be different in that you've been off chemo for 17 months (I think that's what you said) and it's all still subcentimeter.
I still haven't ever actually found out how many lung nodules I have. A few scans ago talked about 3 nodules, then the next one identified more. This time it called them "multiple nodules", but then said there were no new nodules- kind of like you finding out you had 11 when you thought it was less. I'm seeing my oncologist on Monday & he was supposed to be looking at my CT and PET before then, so hopefully he can tell me or maybe even show me how many "multiple" is!
Take care!
Lisa
Hi Lisa,
Now I think I've confused myself and it's quite possible I'm confusing the size of a nodule before the lung surgeon originally said he would do lung surgery, or maybe it's the RFA procedure (I know he won't do them on small nodules and he didn't even really want to do it on my 17 - 19mm nodule, which he did do in January because he didn't consider it to be causing any significant decrease in quality of life).
Now, when I think about how the PET scan works... it detects on the cellular level (I think the correct term is molecular level) and the radioactive glucose sticks to cells that are metabolically active... so you are correct, it could be that a nodule less than 1 cm would, in fact, light up on a PET scan. I do know my oncologist, radiologist and surgeon did say that when nodules are too small, then they won't light up on a PET but I'm now not sure what is considered "too small". The 1cm measurement doesn't add up here because of course a malignant nodule smaller than 1cm would/could light up.
My onc is keeping a very close eye on my lung nodules. My CEA is a great indicator if/when something is going on and right now, it is still at 1.5 which is totally normal, no cancer activity. Every 4 months, we will be doing a CAT scan to 1) check on whether the nodules are growing and 2) keeping an eye on any new nodules showing up. Apparently, I have had no new nodules in a year... and those that I have had are growing incredibly slow, even the one we had ablated in January.
Yes, I stopped my 8 months of chemo at the end of Oct 2007... and these nodules have not grown much at all in the last 12 months when we first discovered them. They have always called mine "multiple" nodules, although they were paying particular attention to the one that we recently had ablated and the second largest one which measures 7-8mm. It will be the next to go if it decides to misbehave
It's interesting, isn't it, how different treatments do different things to different people. When we talked yesterday, she said that the longer we stay off chemo and the nodules don't have much growth activity, the better. Actually, I feel better today about it all because if I have 11 nodules but none of them are actually metabolically active, then that's great! It's only if they decide they are going to go that root that we have to be concerned and then possibly do more chemo. If that's the case, I certainly wouldn't turn chemo down... my only fears about it are that some people's lung nodules resist the chemo and I don't want to be one of those people <grin... is there anyone on this earth who does???)
But yes, I'm guessing there must be sufficient difference in our cases because I am not in need of chemo at this point and you are about to do maintenance chemo. It'll be interesting to hear what your oncologist has to say about your current CT and PET scans.
Thanks!!
Cheryl0 -
saw the onclisa42 said:Cheryl,
I'll get back to you
Cheryl,
I'll get back to you again after my onc appt Monday, so I can see what else he might have to say or add. It's a late afternoon appt, so I'll get back to you either Mon pm or Tues a.m.
Take care-
Hi again Cheryl,
Well, I had the appt with the onc today. I didn't know it the day I saw him in the hospital parking lot (when I had just gotten my PET scan results from radiology and saw them before he did)- well he told me today that he was actually on his way to a "tumor board" mtg & he looked over and presented my scans and situation. He wanted to run by the others my situation and what they thought re. maintenance chemo. He told me they all concurred that I should definitely do maintenance of some sort- that it would not be wise in my case to forego it. They did not all concur, however, about what that maintenance should be. Five gave their opinions, in addition to my oncologist. One supposedly thought I should just continue on the treatment I've been on indefinitely (irinotecan, Avastin, Xeloda 2,000 mg/day). A couple thought Avastin alone was what I should do & a couple thought that I should take Xeloda in addition to the Avastin. So, after discussing the pros and cons of all situations, we decided that I'm going to have Avastin and Xeloda. The Xeloda will be half of what I took before- a fairly tolerable dose at 1,000 mg/day. We discussed pros/cons of getting the Avastin every two vs. every three weeks. The disadvantage of getting it just every three weeks, according to my onc, is that it would be at a higher dose and it would have the possibility of it bumping up my blood pressure more (which has been an issue) and having more possible bleeding issues (I've had bloody noses. So, we decided on Avastin once every two weeks and I'll be on a two weeks on/two weeks off schedule with the Xeloda. That will coordinate well with the Avastin schedule. Studies have only gone up to a year on the Avastin. He said he's hoping that we'll evaluate it at 6 months, but I'll probably be on it a year. At that point, he's hoping that more data will be out and we'll have more direction of the "what next" from there. I'll probably get scanned in another 4 months.
Geez- I've had so much radiation from all the scans I've had- I've lost count how many. If I'm around in another decade, I'll probably start having things pop up in me just from the radiation from the scans alone- kind of a scary thought!
I'm okay with all of this- since everything grew back so quickly before when I wasn't on anything, I think I'd worry to death if I wasn't on anything. I'm so glad for you (truly) that you're able to keep off the chemo.
Well, that's about it re. my news-
Take care,
Lisa0 -
Thanks, Lisa!lisa42 said:saw the onc
Hi again Cheryl,
Well, I had the appt with the onc today. I didn't know it the day I saw him in the hospital parking lot (when I had just gotten my PET scan results from radiology and saw them before he did)- well he told me today that he was actually on his way to a "tumor board" mtg & he looked over and presented my scans and situation. He wanted to run by the others my situation and what they thought re. maintenance chemo. He told me they all concurred that I should definitely do maintenance of some sort- that it would not be wise in my case to forego it. They did not all concur, however, about what that maintenance should be. Five gave their opinions, in addition to my oncologist. One supposedly thought I should just continue on the treatment I've been on indefinitely (irinotecan, Avastin, Xeloda 2,000 mg/day). A couple thought Avastin alone was what I should do & a couple thought that I should take Xeloda in addition to the Avastin. So, after discussing the pros and cons of all situations, we decided that I'm going to have Avastin and Xeloda. The Xeloda will be half of what I took before- a fairly tolerable dose at 1,000 mg/day. We discussed pros/cons of getting the Avastin every two vs. every three weeks. The disadvantage of getting it just every three weeks, according to my onc, is that it would be at a higher dose and it would have the possibility of it bumping up my blood pressure more (which has been an issue) and having more possible bleeding issues (I've had bloody noses. So, we decided on Avastin once every two weeks and I'll be on a two weeks on/two weeks off schedule with the Xeloda. That will coordinate well with the Avastin schedule. Studies have only gone up to a year on the Avastin. He said he's hoping that we'll evaluate it at 6 months, but I'll probably be on it a year. At that point, he's hoping that more data will be out and we'll have more direction of the "what next" from there. I'll probably get scanned in another 4 months.
Geez- I've had so much radiation from all the scans I've had- I've lost count how many. If I'm around in another decade, I'll probably start having things pop up in me just from the radiation from the scans alone- kind of a scary thought!
I'm okay with all of this- since everything grew back so quickly before when I wasn't on anything, I think I'd worry to death if I wasn't on anything. I'm so glad for you (truly) that you're able to keep off the chemo.
Well, that's about it re. my news-
Take care,
Lisa
Thanks for getting back so quickly! I've been thinking about you today and wondering how the appt. with your onc went. It's interesting that we both have small lung mets but are approaching it two different ways. Mind you, it also goes to show that even though we both are dealing with lung mets in different ways, our situations are different enough that having two different approaches makes sense.
Like you say, yours were growing quite quickly when you weren't on anything... but that is really good news that they are responding to the chemo. I think the scariest situation would be if they were growing, you go on chemo and they don't respond to the chemo! Yikes!
The chemo combos you mentioned above, I had mentioned them all to my oncologist. She had said that IF/WHEN I have to go on chemo, we would probably go with the FOLFIRI and Avastin. But this appt. I mentioned the Xeloda (which goes by a different name up here) and Avastin, or just the Avastin alone. She smiled and said, "You've been doing your homework!" and I mentioned that yes, I'm on this board and learning the lingo and what others are doing, so am getting a feel for the whole concept of chemo and different treatments. She said that that was good but for now, we aren't going to talk chemo since the longer I can stay off of it, the better, and if I need to go on it 4 months from now or a year from now... we will discuss what would be best at that time since it would probably depend on what is happening. For instance, if only one nodule were to grow, then we'd probably do RFA, but if a few of them grew, then we would discuss chemo at that time.
So, I think the difference between you and me at the moment is that yours did grow and they had to be stopped (or slowed down). Mine haven't grown so we don't even know which ones are malignant, or will be malignant, and which ones are scar tissue and will never grow. Wouldn't that be ideal if they ALL are scar tissue or benign nodules? The thing is, we will never really know and statistically, since I did have one malignant nodule, then chances are some of these others will become malignant, even though they don't appear to be right now.
I look at it this way... I am really in a very lucky position!! If I wasn't already in the "system" and being checked, we would never have known about the lung nodules since they don't cause any symptoms. Buy the time they did and would have been discovered, it would probably be too late. So having the colon cancer and having it discovered and removed, was the best thing that could happen because now I'm in the system where they watch me like a hawk. Someone who has not been diagnosed with cancer may have it in their colon and mets in their lungs and adrenal and would not know it. It would only be the luck of the draw if they got screening of any kind and it was found.
I always like to see the positive to why we are the lucky ones who have this disease... and I figure it's because, if we didn't get diagnosed, it probably would have gotten us unawares
Huggggggs,
Cheryl0 -
luckyCherylHutch said:Thanks, Lisa!
Thanks for getting back so quickly! I've been thinking about you today and wondering how the appt. with your onc went. It's interesting that we both have small lung mets but are approaching it two different ways. Mind you, it also goes to show that even though we both are dealing with lung mets in different ways, our situations are different enough that having two different approaches makes sense.
Like you say, yours were growing quite quickly when you weren't on anything... but that is really good news that they are responding to the chemo. I think the scariest situation would be if they were growing, you go on chemo and they don't respond to the chemo! Yikes!
The chemo combos you mentioned above, I had mentioned them all to my oncologist. She had said that IF/WHEN I have to go on chemo, we would probably go with the FOLFIRI and Avastin. But this appt. I mentioned the Xeloda (which goes by a different name up here) and Avastin, or just the Avastin alone. She smiled and said, "You've been doing your homework!" and I mentioned that yes, I'm on this board and learning the lingo and what others are doing, so am getting a feel for the whole concept of chemo and different treatments. She said that that was good but for now, we aren't going to talk chemo since the longer I can stay off of it, the better, and if I need to go on it 4 months from now or a year from now... we will discuss what would be best at that time since it would probably depend on what is happening. For instance, if only one nodule were to grow, then we'd probably do RFA, but if a few of them grew, then we would discuss chemo at that time.
So, I think the difference between you and me at the moment is that yours did grow and they had to be stopped (or slowed down). Mine haven't grown so we don't even know which ones are malignant, or will be malignant, and which ones are scar tissue and will never grow. Wouldn't that be ideal if they ALL are scar tissue or benign nodules? The thing is, we will never really know and statistically, since I did have one malignant nodule, then chances are some of these others will become malignant, even though they don't appear to be right now.
I look at it this way... I am really in a very lucky position!! If I wasn't already in the "system" and being checked, we would never have known about the lung nodules since they don't cause any symptoms. Buy the time they did and would have been discovered, it would probably be too late. So having the colon cancer and having it discovered and removed, was the best thing that could happen because now I'm in the system where they watch me like a hawk. Someone who has not been diagnosed with cancer may have it in their colon and mets in their lungs and adrenal and would not know it. It would only be the luck of the draw if they got screening of any kind and it was found.
I always like to see the positive to why we are the lucky ones who have this disease... and I figure it's because, if we didn't get diagnosed, it probably would have gotten us unawares
Huggggggs,
Cheryl
Funny thing, I also try to think of the "good reasons for getting cancer"- not that any of it's really good, but I try to "see the silver lining" in things. For me, if I had not gotten diagnosed when I did, I probably would have died within 4 months or so. I imagine something worse would have put me in the emrgency room eventually, though, anyway.
I'm now a stay at home mom- something I always wanted to be, but felt we could never afford for me to stay home. Well, it hasn't been easy financially, but I am now getting disability- about 2/3 of what I was making working full time (maybe a litle less actually because now I have to pay for my health benefits and they were covered by my employer before). But I'm still making more than the two years that I worked half-time job-sharing (another teacher and I shared a class and classrrom, each teaching half the week).
I also now have great compassion and interest in others' who have cancer or other illnesses. To have more empathy and to be able to offer advice and support to others is a good thing- something I wouldn't be able to do otherwise. There you go- a couple of "silver linings"!
You take care-
Lisa0 -
lung metsCherylHutch said:Confusing myself
Hi Lisa,
Now I think I've confused myself and it's quite possible I'm confusing the size of a nodule before the lung surgeon originally said he would do lung surgery, or maybe it's the RFA procedure (I know he won't do them on small nodules and he didn't even really want to do it on my 17 - 19mm nodule, which he did do in January because he didn't consider it to be causing any significant decrease in quality of life).
Now, when I think about how the PET scan works... it detects on the cellular level (I think the correct term is molecular level) and the radioactive glucose sticks to cells that are metabolically active... so you are correct, it could be that a nodule less than 1 cm would, in fact, light up on a PET scan. I do know my oncologist, radiologist and surgeon did say that when nodules are too small, then they won't light up on a PET but I'm now not sure what is considered "too small". The 1cm measurement doesn't add up here because of course a malignant nodule smaller than 1cm would/could light up.
My onc is keeping a very close eye on my lung nodules. My CEA is a great indicator if/when something is going on and right now, it is still at 1.5 which is totally normal, no cancer activity. Every 4 months, we will be doing a CAT scan to 1) check on whether the nodules are growing and 2) keeping an eye on any new nodules showing up. Apparently, I have had no new nodules in a year... and those that I have had are growing incredibly slow, even the one we had ablated in January.
Yes, I stopped my 8 months of chemo at the end of Oct 2007... and these nodules have not grown much at all in the last 12 months when we first discovered them. They have always called mine "multiple" nodules, although they were paying particular attention to the one that we recently had ablated and the second largest one which measures 7-8mm. It will be the next to go if it decides to misbehave
It's interesting, isn't it, how different treatments do different things to different people. When we talked yesterday, she said that the longer we stay off chemo and the nodules don't have much growth activity, the better. Actually, I feel better today about it all because if I have 11 nodules but none of them are actually metabolically active, then that's great! It's only if they decide they are going to go that root that we have to be concerned and then possibly do more chemo. If that's the case, I certainly wouldn't turn chemo down... my only fears about it are that some people's lung nodules resist the chemo and I don't want to be one of those people
Hi Cheryl
Bravo for your continued good survival.....Where are you being treated?
My onc is making noises about me going on maintenance chemo and I am reluctant to do any more chemo if it is not necessary. I'd like your input about where you are going for treatment/followup etc
Serrana0 -
Locationserrana said:lung mets
Hi Cheryl
Bravo for your continued good survival.....Where are you being treated?
My onc is making noises about me going on maintenance chemo and I am reluctant to do any more chemo if it is not necessary. I'd like your input about where you are going for treatment/followup etc
Serrana
Hey Serrana,
I'm up here in the Great White North (Canada) in the province of BC. I live on the west coast in Vancouver, so as has been discussed in other topics, I think our treatment centres are different from how it is down in the States. The treatment and standard protocols seem to be the same... but there are differences in the actual administration/procedures.
How it is done (or at least was for me), I was at the hospital having a sigmoidoscopy by my colorectal surgeon and he found the tumour... and was the one who did the colon resection surgery. Once you have been diagnosed with cancer up here, you are referred to the BC Cancer Agency and an oncologist (who works out of the BC Cancer Agency). If you don't hit it off with that oncologist, of course you can request another one until you find one that you are happy with. I happened to luck out with my oncologist who is brilliant, compassionate and there are not enough wonderful words to say about her (plus, on doing some checking, she is considered one of the top colorectal oncologists in BC). She is the head of my team and as I need various specialists in their field, she rounds them up so they all work together. She discusses and explains everything to me in language that I can understand, and goes over any and all options that we may have.
You say your onc is making noises about you going on maintenance chemo... did he/she explain why they think this might be a good idea? Our situations could be very different so you shouldn't go by what someone else's treatment/no treatment plans are because you may be missing a very key piece as to why someone is on maintenance and why someone isn't, even though they both have, what seem like, the same mets.
Lisa42 and I were discussing this very issue since we both have "multiple" nodules in our lungs. One of the key differences for us is, she mentioned that when she stopped chemo, her mets started growing relatively quickly... but when put back on the chemo they either shrunk or remained stable (no sign of metabolical activity). So it makes sense that she stay on maintenance chemo rather than have those nodules start growing again. In my case, the nodules are there, but either they are not growing or growing so incredibly slowly, the chemo would not be effective for them right now. So we want to not use chemo until the time comes that it would actually be effective. Again, that will depend on how fast the nodules start growing and how many of them actually grow. If only one or two of them start growing, then we would look at ablating them like the one we did in January. If all of them start growing, then we would look at chemo.
So if your onc is making noises now of you going on maintenance chemo... there must be a reason. Did he/she explain that reason?
Hugggggggs,
Cheryl0 -
well said Lisalisa42 said:lucky
Funny thing, I also try to think of the "good reasons for getting cancer"- not that any of it's really good, but I try to "see the silver lining" in things. For me, if I had not gotten diagnosed when I did, I probably would have died within 4 months or so. I imagine something worse would have put me in the emrgency room eventually, though, anyway.
I'm now a stay at home mom- something I always wanted to be, but felt we could never afford for me to stay home. Well, it hasn't been easy financially, but I am now getting disability- about 2/3 of what I was making working full time (maybe a litle less actually because now I have to pay for my health benefits and they were covered by my employer before). But I'm still making more than the two years that I worked half-time job-sharing (another teacher and I shared a class and classrrom, each teaching half the week).
I also now have great compassion and interest in others' who have cancer or other illnesses. To have more empathy and to be able to offer advice and support to others is a good thing- something I wouldn't be able to do otherwise. There you go- a couple of "silver linings"!
You take care-
Lisa
I have been reading your chats with Cheryl and finding it all very ineresting. Just a note on the xeloda that i can relate to....I currently do 3300 so if you go down to 1000 that seems to me it would be do-able.
I agree with you how cancer changes your life and I am glad you are now able to be a stay at home mom.
I have always found your posts intelligent and filled with support.
Best love,
Mags0 -
lung mets/maintenance chemoCherylHutch said:Location
Hey Serrana,
I'm up here in the Great White North (Canada) in the province of BC. I live on the west coast in Vancouver, so as has been discussed in other topics, I think our treatment centres are different from how it is down in the States. The treatment and standard protocols seem to be the same... but there are differences in the actual administration/procedures.
How it is done (or at least was for me), I was at the hospital having a sigmoidoscopy by my colorectal surgeon and he found the tumour... and was the one who did the colon resection surgery. Once you have been diagnosed with cancer up here, you are referred to the BC Cancer Agency and an oncologist (who works out of the BC Cancer Agency). If you don't hit it off with that oncologist, of course you can request another one until you find one that you are happy with. I happened to luck out with my oncologist who is brilliant, compassionate and there are not enough wonderful words to say about her (plus, on doing some checking, she is considered one of the top colorectal oncologists in BC). She is the head of my team and as I need various specialists in their field, she rounds them up so they all work together. She discusses and explains everything to me in language that I can understand, and goes over any and all options that we may have.
You say your onc is making noises about you going on maintenance chemo... did he/she explain why they think this might be a good idea? Our situations could be very different so you shouldn't go by what someone else's treatment/no treatment plans are because you may be missing a very key piece as to why someone is on maintenance and why someone isn't, even though they both have, what seem like, the same mets.
Lisa42 and I were discussing this very issue since we both have "multiple" nodules in our lungs. One of the key differences for us is, she mentioned that when she stopped chemo, her mets started growing relatively quickly... but when put back on the chemo they either shrunk or remained stable (no sign of metabolical activity). So it makes sense that she stay on maintenance chemo rather than have those nodules start growing again. In my case, the nodules are there, but either they are not growing or growing so incredibly slowly, the chemo would not be effective for them right now. So we want to not use chemo until the time comes that it would actually be effective. Again, that will depend on how fast the nodules start growing and how many of them actually grow. If only one or two of them start growing, then we would look at ablating them like the one we did in January. If all of them start growing, then we would look at chemo.
So if your onc is making noises now of you going on maintenance chemo... there must be a reason. Did he/she explain that reason?
Hugggggggs,
Cheryl
Hi Cheryl
Sounds like BC is the place to be for cancer tx.
I grew up in Washington State and have always loved upper BC and the coast.....fabulous, wild, fun.
You asked why my onc was making noises about maintenance chemo.........I just finished 6 months of FOLFIRI and Avastin post op from a solitary lung met thoracotomy last summer. Right after ( 2 weeks after) the surgery they did a "baseline" scan before the Folfiri and found a "diffuse hillar area FDG uptake" which the surgeon insists is healing tissue from the surgery. The onc insists it is a new met. The surgeon and the articles on www.pubmed.gov report that scans should not be done right after thoracotomies because the healing tissue always lights up.It has decreased in size. Onc says this proves it was a met; surgeon insists that healing effects diminish w/ time. The onc is insisting the surgeon is wrong but won't discuss it with him.Surgeon says if onc wants me on more chemo because of this he will contact him. I am getting another scan next week so we'll have new news to process with second/third opinions. This is why I am researching the maintenance chemo subject so I will know what is what in the world of real patients.
Your story was important to me because so often folks are on chemo for any little thing and my concern is that we don't know alot about the long term effects AND I have already been on 12 months total chemo.......FOLFOX, Xeloda, FOLFIRI, Avastin, Leucovorin, etc and I don't want to subject my bod to anything unnecessary.
Anyway this is getting too long. If you have any comments...fire away.
Serrana0 -
Lots to digestserrana said:lung mets/maintenance chemo
Hi Cheryl
Sounds like BC is the place to be for cancer tx.
I grew up in Washington State and have always loved upper BC and the coast.....fabulous, wild, fun.
You asked why my onc was making noises about maintenance chemo.........I just finished 6 months of FOLFIRI and Avastin post op from a solitary lung met thoracotomy last summer. Right after ( 2 weeks after) the surgery they did a "baseline" scan before the Folfiri and found a "diffuse hillar area FDG uptake" which the surgeon insists is healing tissue from the surgery. The onc insists it is a new met. The surgeon and the articles on www.pubmed.gov report that scans should not be done right after thoracotomies because the healing tissue always lights up.It has decreased in size. Onc says this proves it was a met; surgeon insists that healing effects diminish w/ time. The onc is insisting the surgeon is wrong but won't discuss it with him.Surgeon says if onc wants me on more chemo because of this he will contact him. I am getting another scan next week so we'll have new news to process with second/third opinions. This is why I am researching the maintenance chemo subject so I will know what is what in the world of real patients.
Your story was important to me because so often folks are on chemo for any little thing and my concern is that we don't know alot about the long term effects AND I have already been on 12 months total chemo.......FOLFOX, Xeloda, FOLFIRI, Avastin, Leucovorin, etc and I don't want to subject my bod to anything unnecessary.
Anyway this is getting too long. If you have any comments...fire away.
Serrana
Thanks for explaining that, Serrana. I wasn't sure, with your original post, if you were just hoping to not continue with the chemo but your onc had good reason to or what the situation was. And, as I and others have stated, we are not doctors so don't have the right to give advice for or against what your doctors have said.
But, you do seem to be caught between a rock and a hard place here where the surgeon and oncologist are not seeing eye to eye on this decision.
I agree that chemo is a wonderful med in this fight with cancer but should be used on an as needed basis... not just for the sake of taking chemo. In the case of the area that showed up on your scan right after surgery and now decreasing in size... your onc feels it's decreasing because you've been on chemo (FOLFIRI/Avastin) and the surgeon feels it's decreasing because the area is healing from surgery. Two very different explanations, but either one could be accurate. The problem being, if the surgeon is right and this area is NOT cancer, then you'd be taking chemo for no reason. On the other hand, if the onc is right, then the last 6 months of chemo has actually been doing it's job.
If the two really can't agree on whether this is a met or not... has anyone suggested doing a needle biopsy? I (and this is purely my own opinion) would think that the onc would not want to give more chemo unless there is proof that this is a cancer met and not just an assumption on his part.
Please keep us posted on the upcoming scan and what the outcome is! What you are going through, I'm sure many others will be able to relate to.
Huggggs,
Cheryl0
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