Today's Oncologist Visit
(Gee, why does that remind me of Shirley Temple??? )
Anywho... just thought I would post about my visit with my oncologist who, I think I've bored you all before with how much I love and adore her! It just reminds me of how incredibly important it is to have a really good rapport with your oncologist since he/she is really the leader of your team and your biggest advocate
As you all know, last week I had my Lung Ablation (RFA) procedure done to one tumour on my right lung. Now, don't get me wrong, the radiologist (Dr. Halkier) did a fabulous job, which I think is evident by how I had no after-effects, and no problems with the lung, no pain, no nuthin'. BUT, Dr. Halkier and I just don't click in our attitudes. I guess I have just been too spoilt having such a fabulous oncologist (Dr. Sharlene Gill). I kept getting this feeling of doom and gloom from Dr. Halkier ... he would keep reminding me that there was no "cure" for me, that obviously I knew that I would have to go on chemo, that he even wanted to talk me out of the RFA procedure because he didn't really see that I would get any benefit from the procedure and as far as he was concerned, I should go back on chemo.
Anywho... I just don't think Dr. Halkier and I are on the same page... yet, when I analyze the info he gave me and the reasons he didn't think the procedure would be all that beneficial, I can sort of understand where he's coming from. I would like to be able to use his skill to accomplish the RFA should I need it in the future... but save me the doom and gloom talk
So, I told Sharlene how I felt and that I, in no way, was disappointed with Dr. H's work or skill, but I didn't feel the two of us saw eye to eye on the same problem. She agreed, that it is really important that both Dr. and patient have a good feeling of communication because without that, nothing is going to work the way anyone expects it to. I also mentioned that Dr. H. had, off the cuff, let it drop that a radiologist from California either HAD moved to Vancouver or was about to move to Vancouver and does these Lung Ablation procedures and he would be working out of VGH, a hospital here in Vancouver (much closer to where I live and who Sharlene happens to be affiliated with). So she just smiled and said, "Don't give it another thought... I know who you mean and he isn't quite set up yet at VGH to do these but if we need another RFA done, then I will be on top of this as soon as he is set up to practice in BC"
Meanwhile, it's not the doom and gloom that I was led to believe. We will have the CEA results tomorrow and so far, CEA has been a good indicator for me. She does not see throwing me on Chemo just for the sake of blanketing my system with chemo... unless there is some reason to indicate we should. The examples she gave:
1) Depending on the CEA levels, if they haven't changed, then we will hold off doing a PET scan because there is no dire need for one if there is no indication of activity. If my CEA level has gone up a couple of points, she's not going to get excited by that because that's not uncommon after a surgery or RFA procedure.
2) She will schedule me to have a lung CAT scan in 6-8 weeks. I mentioned that Dr. H. had told me he would have his office order one in 6 weeks but I haven't been too impressed with his office communication so I may have to hound them for it if I don't hear from them. She told me not to do that, if I did hear from them, then she would cancel the one she orders for me, but if I don't hear from them, then we will have one set up through her in town.
IF a couple of the spots on my lungs have grown "sufficiently", but no other change anywhere else (IE: no new spots, no indication of activity anywhere else in my body, etc.) then we will look at doing the RFA to the grown spots.
IF more spots have shown up on my lungs, then we will address the chemo question... depending on how many and how fast they indicate they are growing.
IF my CEA goes up, then we will wait a month and re-test it... if it still is going up, then we will do a PET scan to see what's happening
IF nothing changes, then we will continue monitoring every 2-3 months.
In other words... there is absolutely no need to panic, no need to jump into a treatment if there's nothing indicating a need to treat... and meanwhile, life goes on.
So, I was thrilled with my appt. with her... and am back to being confident that all is fine and if something changes, then we treat that... we don't go into panic mode and treat without knowing what it is we are treating.
Hugggggs,
Cheryl
Comments
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just one question
Cheryl, are you okay with just waiting? My concern is that if you wait 6-8 weeks then it could grow. Maybe I am not understanding what you wrote correctly. I would want a PET to see if those other spots were in fact cancer or not. Has that been done?
Beth0 -
Good for you Cheryl
Glad you had a good visit with your oncologist, I too have a great rapport with my oncologist and it makes a big difference. I don't believe in loads of Pet scans, in fact a Pet might light up where your just had the spot ablated due to scar and surrounding tissue inflamation. It sounds like your oncologist is reasonable and patient centered. I hope your CEA is low and you can relax for a while.
MIke0 -
Your question, Bethdorookie said:just one question
Cheryl, are you okay with just waiting? My concern is that if you wait 6-8 weeks then it could grow. Maybe I am not understanding what you wrote correctly. I would want a PET to see if those other spots were in fact cancer or not. Has that been done?
Beth
Beth, I'm ok with waiting because of all the monitoring we've done to get to this point. The first time we knew I had spots (7 of the critters) in my lungs was last March (2008) when I had my first PET scan. At that time, we were not at all suspicious of anything, other than my CEA had gone from a 1.5 to and 18 in 4 months. Since it was going up rather than back down, Sharlene ordered the PET scan and that's when we found 2 lung spots and the right adrenal gland that lit up the PET scan. So, Sharlene was thinking of putting me back on chemo at that point, but was concerned about the arenal gland (since this is not a common area for colon cancer to spread to... and if it was a second primary cancer, then adrenal cancer is known to be very aggressive and would have required a different chemo treatment). So, my case went to Case Conference it it was decided to do the adrenal surgery first, then lung surgery on the 2 lung spots.
It was during the subsequent CAT scans that the other spots were found on the lungs... the 5 that don't light up the PET scan.
It's possible that I will need to get the second one ablated if it starts to grow. The others may not be cancer at all so she does not want to bombard me with chemo for one spot (if the others aren't cancer). The second PET scan still only showed these two spots.
Now, having said that... if she had told me today that she thinks we should do the "better safe than sorry... let's bombard your system with a refresher of chemo", I would have done it without batting an eyelash.
So Beth... yes, I've had a bunch of CAT scans and 2 PET scans. 2 spots lit up, one of them is now gone. 5 are not big enough to biopsy or determine if they are cancer. So that leaves just the one spot and if it is the only one that ends up being of concern, then it's possible we can get that one ablated too... but we would have to wait until the current lung is completely healed.
Where I'm really lucky is that nothing is growing at all quickly... so we have time on our side. If any of them were growing quickly, with other seedlings starting... well then yes, there would be no ifs, ands or buts... we'd be starting chemo asap
Hugggggs,
Cheryl
PS: As you can see... every case is individual and has to be treated as an individual case. Someone else, depending on how long they've had the spots, how quickly they are growing, if they are growing, would determine what their treatment would be, which might be totally different than what Sharlene has suggested for me.0 -
If your okay then I am okayCherylHutch said:Your question, Beth
Beth, I'm ok with waiting because of all the monitoring we've done to get to this point. The first time we knew I had spots (7 of the critters) in my lungs was last March (2008) when I had my first PET scan. At that time, we were not at all suspicious of anything, other than my CEA had gone from a 1.5 to and 18 in 4 months. Since it was going up rather than back down, Sharlene ordered the PET scan and that's when we found 2 lung spots and the right adrenal gland that lit up the PET scan. So, Sharlene was thinking of putting me back on chemo at that point, but was concerned about the arenal gland (since this is not a common area for colon cancer to spread to... and if it was a second primary cancer, then adrenal cancer is known to be very aggressive and would have required a different chemo treatment). So, my case went to Case Conference it it was decided to do the adrenal surgery first, then lung surgery on the 2 lung spots.
It was during the subsequent CAT scans that the other spots were found on the lungs... the 5 that don't light up the PET scan.
It's possible that I will need to get the second one ablated if it starts to grow. The others may not be cancer at all so she does not want to bombard me with chemo for one spot (if the others aren't cancer). The second PET scan still only showed these two spots.
Now, having said that... if she had told me today that she thinks we should do the "better safe than sorry... let's bombard your system with a refresher of chemo", I would have done it without batting an eyelash.
So Beth... yes, I've had a bunch of CAT scans and 2 PET scans. 2 spots lit up, one of them is now gone. 5 are not big enough to biopsy or determine if they are cancer. So that leaves just the one spot and if it is the only one that ends up being of concern, then it's possible we can get that one ablated too... but we would have to wait until the current lung is completely healed.
Where I'm really lucky is that nothing is growing at all quickly... so we have time on our side. If any of them were growing quickly, with other seedlings starting... well then yes, there would be no ifs, ands or buts... we'd be starting chemo asap
Hugggggs,
Cheryl
PS: As you can see... every case is individual and has to be treated as an individual case. Someone else, depending on how long they've had the spots, how quickly they are growing, if they are growing, would determine what their treatment would be, which might be totally different than what Sharlene has suggested for me.
Cheryl,
Now I understand better, thank you I was a bit worried at first, but you cleared it all up for me. Sounds like you have a great ONC and I am so glad for you. SO I will keep asking God to get rid of those spots and then one day you wont have to worry at all. Its great to see you so positive.
Okay next question, where does this leave you as far as going back to work? If its none of my business please feel free to say so, just curious as to if your in a hurry to get back to work, or do you feel healthy enough to go back now? Just curious
Beth0 -
Good for you and your doc
Cheryl,
Thanks for all the sharing you do. It is really helpful to the rest of us. I am glad you have such a great oncologist. I do as well and I can ask him anything. He's the first one I call when I don't understand something from another doctor. He usually makes me see the sense of what that doc is talking about.
We are with you! Keep on keepin' on.
Vicki0 -
now you have a planVickiCO said:Good for you and your doc
Cheryl,
Thanks for all the sharing you do. It is really helpful to the rest of us. I am glad you have such a great oncologist. I do as well and I can ask him anything. He's the first one I call when I don't understand something from another doctor. He usually makes me see the sense of what that doc is talking about.
We are with you! Keep on keepin' on.
Vicki
good girl! that all sounds like a good solid plan. Your onc sounds wonderful. thank you for taking the time to keep us up to date Cheryl.
Best regards,
Mags0 -
Darn good question, Beth!dorookie said:If your okay then I am okay
Cheryl,
Now I understand better, thank you I was a bit worried at first, but you cleared it all up for me. Sounds like you have a great ONC and I am so glad for you. SO I will keep asking God to get rid of those spots and then one day you wont have to worry at all. Its great to see you so positive.
Okay next question, where does this leave you as far as going back to work? If its none of my business please feel free to say so, just curious as to if your in a hurry to get back to work, or do you feel healthy enough to go back now? Just curious
Beth
Beth... that's an excellent question and one I certainly don't mind sharing... although, I don't really have a definitive answer to it. Again, nothing is just black and white... there are so many shades of gray involved.
In all honesty, I'm not sure that I have the strength/energy to go back to work full time, although, there are times during the day when I could beat anyone under the table when it comes to energy. One of my problems, and probably my main complaint, is my #$()#*$ feet and legs!! As I have mentioned before, I did have some arthritis in my knees prior to the cancer DX, but it certainly didn't hold me back. I would walk to/from work (1.5 miles one way), then come home and walk the dog for 1.5 miles, plus a morning walk before work and a short walk in the evening. At the moment, I can not walk around the block without being in a lot of pain... not to mention, my knees (especially the left knee) seems to lock up in stiffness and pain (having been aggravated by the chemo)... and my feet are totally unreliable because of the chemo-related neuropathy. Even now, as I type this... I went to bed about 11pm last night and have been up since 3am because my leg is bothering me. Since my job required a fair amount of standing (I would teach government employees on various government mainframe computer programs/systems), I would not be able to do the job I once did... at least, not in the capacity I did it.
On the other hand, I have been thoroughly enjoying spending a couple of afternoons/week down at the theatre office doing theatre administration work (updating the website, answering phones, updating the patron database, helping organize the auditions that are coming up for two full Broadway musicals, etc). Since I am on Long Term Disability, I can't "work" and make money, but I am allowed to volunteer and keep active. And that's one thing I need to do to keep my sanity... keep active with people and friends
Right now, my oncologist does not want me to go back to work. She feels that part of my current success is definitely due to not having the pressure of being at work full-time, being able to spend whatever time is necessary running to the various appts. and being able to rest/relax when needed. Not everyone has this luxury of not having to work to support themselves/family, but I happen to be extremely blessed with wonderful employee benefits when it comes to disability. She is also ordering me a bone density scan to be done around the same time as the next CAT scan (6-8 weeks) to find out if my leg pain is strictly arthritic or if there has been damage done to the bone.
The fact that I may have to go on chemo 6-8 weeks from now, or may not for another year, or ?? there is no guarantee I wouldn't go back to work and have to come back off. Then add to that, I do have all my pensionable years in (yes, I know , I look way too young to have 35 years put in with the company) but I can't officially retire and collect my full pension until I'm 55 yrs old... which will be this time next year. Only 1 year to go and I can retire on full pension... and at the same time, I think I'd get to continue collecting my CP Disability Pension (the equivalent of your SS Disability Pension). I would have to give up my company disability pension in exchange for my retirement pension. But if I were to go back to work for this next year, then it would mean I'm not eligible for the government disability pension... and it would be very difficult to get it back once I went back to work and then retired.
Soooo... my goal for the next year IS to work on my strength and energy where I would feel confident that I could put in an 8 hour day/5 days a week, but first have got to deal with the leg pain so I can walk properly again. If I can get that all in order and I still haven't had to go back on treatment, then I would have no problems retiring at 55 and taking on a job that I could handle physically that maybe doesn't require a lot of standing or walking around a classroom setting
Hugggggs,
Cheryl0 -
good news!
it's always good to read how well you and your onc communicate! It is definitely important that your team sees this battle the same way you do! And since I don't believe in coincidences, that new guy moving into town to work at a hospital your onc is affiliated with who is experience with RFA is just another means to get you to where you need to be; confident that everything that needs to be done is being done and will be done in the future! Continue on, gal!
mary0 -
a question on RFA
Hi Cheryl,
Thanks for sharing everything you have. I'm so glad to hear about your good appointment and rapport w/ your oncologist. I've had a good rapport w/ mine also, but I still am always cautious and do a lot of my own research and am always ready w/ ideas and suggetions when I have an appt. with him. I have a question for you on the RFA... were you ever told there is a certain minimum size that the spots have to be before RFA would be considered? I have several lung spots, but all were a cm. or less. I know that's a good thing that they're small, but they've been stubborn with the chemo- just mostly staying "stable". I know stable's also a good thing, but I just wonder why they can't just blast them out of there with RFA or something like that. I've been told they need to be over a cm to do cyberknife or RFA on them. My oncologist seems more bent to cyberknife if it could be done and never has even mentioned RFA, except when I've brought it up or asked about it.
What do you think on that?0 -
Good Newslisa42 said:a question on RFA
Hi Cheryl,
Thanks for sharing everything you have. I'm so glad to hear about your good appointment and rapport w/ your oncologist. I've had a good rapport w/ mine also, but I still am always cautious and do a lot of my own research and am always ready w/ ideas and suggetions when I have an appt. with him. I have a question for you on the RFA... were you ever told there is a certain minimum size that the spots have to be before RFA would be considered? I have several lung spots, but all were a cm. or less. I know that's a good thing that they're small, but they've been stubborn with the chemo- just mostly staying "stable". I know stable's also a good thing, but I just wonder why they can't just blast them out of there with RFA or something like that. I've been told they need to be over a cm to do cyberknife or RFA on them. My oncologist seems more bent to cyberknife if it could be done and never has even mentioned RFA, except when I've brought it up or asked about it.
What do you think on that?
Great to hear that you did not have any problems with the RFA amd that an
expert is moving to your area; you also seem to be blessed with an oncologist
who knows how to communicate well. Think most MDs need to go to communcation
school as part of their training.
Lisa42, a couple of questions popped in my head.....is there a chance that
the spots on the lungs are not CA and that is reason they are staying pretty
much same size....maybe benign nodes? Cyberknife is not always covered by
insurance plans and there may be a difference in the precision of cyberknife
as opposed to RFA.....there is a cyberknife facility in LExington Ky. not far
from Cincinnati....and I have heard it is a good procedure.0 -
to Dixchidixchi said:Good News
Great to hear that you did not have any problems with the RFA amd that an
expert is moving to your area; you also seem to be blessed with an oncologist
who knows how to communicate well. Think most MDs need to go to communcation
school as part of their training.
Lisa42, a couple of questions popped in my head.....is there a chance that
the spots on the lungs are not CA and that is reason they are staying pretty
much same size....maybe benign nodes? Cyberknife is not always covered by
insurance plans and there may be a difference in the precision of cyberknife
as opposed to RFA.....there is a cyberknife facility in LExington Ky. not far
from Cincinnati....and I have heard it is a good procedure.
Hi Dixchi,
The nodes formerly all lit up on the PET, so I'm assuming that means that they are all cancerous. There is a cyberknife facility just 18 miles from my house & I've heard good things about it. I know, however, that my liver surgeon was very leery of it back when I talked to him about it before I had my liver resection. I guess that's because he's a surgeon! Anyhow, I was trying to find out more info on RFA as opposed to the cyberknife.
Thanks for your response.0 -
Question on RFAlisa42 said:a question on RFA
Hi Cheryl,
Thanks for sharing everything you have. I'm so glad to hear about your good appointment and rapport w/ your oncologist. I've had a good rapport w/ mine also, but I still am always cautious and do a lot of my own research and am always ready w/ ideas and suggetions when I have an appt. with him. I have a question for you on the RFA... were you ever told there is a certain minimum size that the spots have to be before RFA would be considered? I have several lung spots, but all were a cm. or less. I know that's a good thing that they're small, but they've been stubborn with the chemo- just mostly staying "stable". I know stable's also a good thing, but I just wonder why they can't just blast them out of there with RFA or something like that. I've been told they need to be over a cm to do cyberknife or RFA on them. My oncologist seems more bent to cyberknife if it could be done and never has even mentioned RFA, except when I've brought it up or asked about it.
What do you think on that?
I have to admit, I don't know a whole lot about the Cyberknife process, Lisa. It sounds pretty difficult in that you have to have extremely good breath control (imagine holding your breath for 15 seconds... and then doing that 150 times with one minute intervals). I figure I have pretty good breath control but even I'd find that hard to do, especially while lying on your back with your arms above your head... for 4 hours! Yikes! Also, this might not be an option for everyone because of the shortage of facilities... apparently there are only 15 facilities in the USA and 2 in Japan.
Now... with the lung RFA, I was not given an actual size that the tumours had to be. Although, I was told that 5 (out of 7) of mine were too small to go after. It would be like hunting for a needle in a haystack even with the guidance of the CAT scan. The two he was willing to go after were 19mm (which was approx 2cm) and 7mm (.7cm). He ended up taking out the 19mm spot and left the 7mm since it was on the other lung. My other 5 spots are all 5mm or less (.5cm or less).
Keeping in mind, to blast them, they have to pinpoint them accurately, then have the needle go into the middle of them and then the probe (which looks like an inverted open umbrella without the fabric) surrounds the tumour which the needle is in the middle of and the zap of Radio Frequency is shot in this area within the probe or inverted umbrella. Anything within the probe's clutches will get nuked and the idea is to only nuke the tumour, not the surrounding tissue. So if the tumour is too small, surrounding tissue would get nuked as well.
One of the criterias my radiologist had was that a patient did not have more than 5 tumours. If there are more than 5 then it's quite possible that these are seedlings with many more to surface. Since each tumour has to be zapped individually, that would mean way too many punctures of the needle into the lung(s), trying to zap all the tumours, with the end result possibly being that your tumours are zapped, but your lungs are now permanently damaged... and you would have to live the rest of your life dependant on oxygen. Hence, he (and I'm assuming other radiologists) will not do RFA on multiple tumours.
As in any procedure, they measure benefit vs risk. If you have multiple tumours, then the risk becomes higher each time you have to puncture the lung one more time with the needle. If the tumours/spots are too small, then not only are you risking puncturing the lung each time, but also doing damage to the lung tissue because the probe has more lung tissue in it than tumour. And of course, if the spots are sooo small, then they won't have registered as lighting up on a PET scan and it's possible that they may very well be scar tissue or benign growths (caused by infections), so they wouldn't want to be risking your lungs for zapping something that doesn't need to be zapped.
I know... it's a lot to take in and so many variables, but that is why they do a thorough check before determining if someone is eligible for the procedure, if the procedure is even offered in one's area.
Hugggggs
Cheryl0 -
CEA LevelCherylHutch said:Question on RFA
I have to admit, I don't know a whole lot about the Cyberknife process, Lisa. It sounds pretty difficult in that you have to have extremely good breath control (imagine holding your breath for 15 seconds... and then doing that 150 times with one minute intervals). I figure I have pretty good breath control but even I'd find that hard to do, especially while lying on your back with your arms above your head... for 4 hours! Yikes! Also, this might not be an option for everyone because of the shortage of facilities... apparently there are only 15 facilities in the USA and 2 in Japan.
Now... with the lung RFA, I was not given an actual size that the tumours had to be. Although, I was told that 5 (out of 7) of mine were too small to go after. It would be like hunting for a needle in a haystack even with the guidance of the CAT scan. The two he was willing to go after were 19mm (which was approx 2cm) and 7mm (.7cm). He ended up taking out the 19mm spot and left the 7mm since it was on the other lung. My other 5 spots are all 5mm or less (.5cm or less).
Keeping in mind, to blast them, they have to pinpoint them accurately, then have the needle go into the middle of them and then the probe (which looks like an inverted open umbrella without the fabric) surrounds the tumour which the needle is in the middle of and the zap of Radio Frequency is shot in this area within the probe or inverted umbrella. Anything within the probe's clutches will get nuked and the idea is to only nuke the tumour, not the surrounding tissue. So if the tumour is too small, surrounding tissue would get nuked as well.
One of the criterias my radiologist had was that a patient did not have more than 5 tumours. If there are more than 5 then it's quite possible that these are seedlings with many more to surface. Since each tumour has to be zapped individually, that would mean way too many punctures of the needle into the lung(s), trying to zap all the tumours, with the end result possibly being that your tumours are zapped, but your lungs are now permanently damaged... and you would have to live the rest of your life dependant on oxygen. Hence, he (and I'm assuming other radiologists) will not do RFA on multiple tumours.
As in any procedure, they measure benefit vs risk. If you have multiple tumours, then the risk becomes higher each time you have to puncture the lung one more time with the needle. If the tumours/spots are too small, then not only are you risking puncturing the lung each time, but also doing damage to the lung tissue because the probe has more lung tissue in it than tumour. And of course, if the spots are sooo small, then they won't have registered as lighting up on a PET scan and it's possible that they may very well be scar tissue or benign growths (caused by infections), so they wouldn't want to be risking your lungs for zapping something that doesn't need to be zapped.
I know... it's a lot to take in and so many variables, but that is why they do a thorough check before determining if someone is eligible for the procedure, if the procedure is even offered in one's area.
Hugggggs
Cheryl
Yayayaya!! My oncologist emailed me with my CEA results! She had warned me that they might be a little higher since it was only last week that I had my lung ablation procedure so it would not be at all surprising if my levels went up a few points. My CEA levels have been a very good indicator if there is cancer activity happening for me.
My test results came back at 1.4!! YAAYAYAYA!! When all is going well, my levels read between 1.2 - 1.7... so a 1.4 is excellent!! And the lung ablation didn't seem to affect it at all
Huggggs,
Cheryl0 -
Dancing with you!CherylHutch said:CEA Level
Yayayaya!! My oncologist emailed me with my CEA results! She had warned me that they might be a little higher since it was only last week that I had my lung ablation procedure so it would not be at all surprising if my levels went up a few points. My CEA levels have been a very good indicator if there is cancer activity happening for me.
My test results came back at 1.4!! YAAYAYAYA!! When all is going well, my levels read between 1.2 - 1.7... so a 1.4 is excellent!! And the lung ablation didn't seem to affect it at all
Huggggs,
Cheryl
That is good news, I know you are feeling great after hearing that! Just reinforcement of your positive vibes!
mary0 -
hooorahmsccolon said:Dancing with you!
That is good news, I know you are feeling great after hearing that! Just reinforcement of your positive vibes!
mary
good news Cheryl.....love those low CEA's...you must be feeling terrific to get that news.
All the best,
Mags0 -
Hi!CherylHutch said:CEA Level
Yayayaya!! My oncologist emailed me with my CEA results! She had warned me that they might be a little higher since it was only last week that I had my lung ablation procedure so it would not be at all surprising if my levels went up a few points. My CEA levels have been a very good indicator if there is cancer activity happening for me.
My test results came back at 1.4!! YAAYAYAYA!! When all is going well, my levels read between 1.2 - 1.7... so a 1.4 is excellent!! And the lung ablation didn't seem to affect it at all
Huggggs,
Cheryl
I have been thinking of you and tonight wanted to sit down and "catch up" with your treatment - sounds like it all went as well as can be and I am so glad your doing well. I thank you for your amazing writing and details - you fill us in so well, and you educate others in the process. I think we are so fortunate to have RFA as an option - I am thririlled it went so well for both s us - we can take a breath , pat ourselves on the back and get on with our lives...proud of how you and I handled our little detour - On we go sister!0 -
Hi back at ya!!mykidsmommy said:Hi!
I have been thinking of you and tonight wanted to sit down and "catch up" with your treatment - sounds like it all went as well as can be and I am so glad your doing well. I thank you for your amazing writing and details - you fill us in so well, and you educate others in the process. I think we are so fortunate to have RFA as an option - I am thririlled it went so well for both s us - we can take a breath , pat ourselves on the back and get on with our lives...proud of how you and I handled our little detour - On we go sister!
Hey Honor! I've been thinking of you too and wondering how you are doing! If I recall, did you only have the one nodule that was ablated with the RFA procedure or do you still have other spots in your lung?
I still have some, but I heard an interesting tidbit of information from the brother of my neighbour. He (the brother) also has colon cancer and it metastacized to his lungs and adrenal gland (same scenerio as mine). My neighbour had told him that I had these spots on my lung but that they are so slow growing that we are still not sure what they all are... 2 of them we are pretty sure are just scarring from pneumonia, which means we are watching 4 small ones. He said that his oncologist told him that everyone (cancer as well as non-cancer) has spots on our lungs and it's just a matter of some of them are benign and some of them grow into cancerous growths... and some may be benign but another cancer in the body metasticizes to them.
I had not heard that before... that everyone has spots/growths/nodules in their lungs and that some are totally harmless whereas others grow into cancer.
But yes... onward we go! Speaking of which... I really must get myself to bed! It's almost 11:30pm and I have to get up at 6am tomorrow. We have auditions starting at 9:00am and I have to be there by 8am to set up our computer equipment at the theatre for registering folk who are auditioning.
Never a dull moment around here
Hugggggs,
Cheryl0 -
Lund metastases versus benign nodulesCherylHutch said:Hi back at ya!!
Hey Honor! I've been thinking of you too and wondering how you are doing! If I recall, did you only have the one nodule that was ablated with the RFA procedure or do you still have other spots in your lung?
I still have some, but I heard an interesting tidbit of information from the brother of my neighbour. He (the brother) also has colon cancer and it metastacized to his lungs and adrenal gland (same scenerio as mine). My neighbour had told him that I had these spots on my lung but that they are so slow growing that we are still not sure what they all are... 2 of them we are pretty sure are just scarring from pneumonia, which means we are watching 4 small ones. He said that his oncologist told him that everyone (cancer as well as non-cancer) has spots on our lungs and it's just a matter of some of them are benign and some of them grow into cancerous growths... and some may be benign but another cancer in the body metasticizes to them.
I had not heard that before... that everyone has spots/growths/nodules in their lungs and that some are totally harmless whereas others grow into cancer.
But yes... onward we go! Speaking of which... I really must get myself to bed! It's almost 11:30pm and I have to get up at 6am tomorrow. We have auditions starting at 9:00am and I have to be there by 8am to set up our computer equipment at the theatre for registering folk who are auditioning.
Never a dull moment around here
Hugggggs,
Cheryl
Hi Cheryl, hi all, I was looking for the information about the Dr. Halkier and RFA done in Vancouver and found this page (and we live in Richmond, BC). My son, who is 23 now, was Dx with the very rare sarcoma in 2003 (it is a type of cancer that originated in the connective tissue), he has multiple lung metastases in both lungs for the last 4 years so I am very familiar with the subject and thought that I can clarify some questions that were asked in this thread.
Lung metastases smaller then 10 mm very often do not lit up on the PET scan especially if they are slow growing so PET is very often useless for the smaller lung mets. PET scan detects increased glucose metabolism and it is low in the small slow growing lung mets.
It is true that people often have undetermined small lung nodules that are mostly benign, but if they are bigger the 5 mm, grow between two or more consecutive scans (even slow) and located in the lower part of the lungs or there is getting visible more of them, the level of suspicion increases.
When metastases are multiple and all are small, RFA doesn't make a sense as to ablate them all would be a big trauma to the lung and every procedure carries a risk of the pneumothorax - about 20-30 % depends on the skills of the doctor, even bigger then the surgery which often can be done and actually all the patients with the limited number of the lung metastases and no other metastatic sites should be evaluated for the surgery. There are numerous articles on the Pubmed.gov that show a survival advantage for the people who's lung mets were resected, do a search by "metastases"+ your type of cancer.
The resectability is the very important question, it depends on the situation in the lungs (number, location) and the skills/technical devices avail. at the local thoracic surgery. In my son's case his lung mets were small/multiple and our local thoracic surgeon can not resect them but we found a brilliant thoracic surgeon in Germany with the unique advanced technology that allows him to resect dozens of the lung mets without loss of the big chunks of the lungs like it is done in US and Canada. My son had 3 surgeries in Germany during 3 years. His situation is worse then may other people with the lung mets as the number is very high but he is doing really good, playing all kinds of sport, has finished the university and leads very normal life after the recovery period is over (about the month).
The CyberKnife has an advantage of being non-invasive but its disadvantage is the radiation damage to the lungs, in some cases people's lungs can not tolerate even smaller radiation damage and it cases radiation pneumonitis, when the normal tissue turns into fibrotic tissue - like a scar - and is not working for the oxygen exchange.
There is a cryoablation that can be also done (the same as RFA but freezing) it is better then RFA as causes less damage but it is rarely avail., Dr.Littrup from the Karmanos cancer institute in Detroit is the best doctor in this field.0
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