Today's Oncologist Visit

CherylHutch

olgaT said:

Lund metastases versus benign nodules
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.

Welcome Olga!!
Welcome to the board here, Olga! What a fabulous post with great information in it. It's the kind of information that one has to absorb and file away but I thank you very much for all the research you have done to be able to share this much information with us!

In my case, I am considered to have "multiple" mets because I had 7 of them that showed up on the CAT scan (2 of them lit up the PET scan). Of the 2 that lit up the PET scan, the largest was the one that Dr. Halkier ablated... and I came through that procedure with flying colours (even with a General Anesthesia, I was able to be discharged later that afternoon). That now leaves me with 6. The second one that lit up the PET is about 7mm. The other 5 are under 5mm, hence did not show up on the PET but did show up on the CAT. 2 of those 5 they are pretty sure are scar tissue, so that leaves 3 that we are keeping our eye on, plus the 7mm one... and we will see how fast they grow. It's possible, we will ablate the 7mm one if it starts growing and the others don't. If all of them start growing (or others show up), then we may go back on chemo. I'm not sure if surgery will be an option since the spots I currently have are all over the place on both lungs... it would be easier if they were close together.

I feel great, so there are no "symptoms" to treat. No shortness of breath and when I did have a chest xray a couple of hours after the ablation procedure, both my radiologist and the xray technician were impressed with how strong and healthy my lungs were. So I'm happy about that.

The surgery your son had in Germany... that sounds really fascinating. I know it's just wishful thinking but I really wish when countries come up with these great treatments that ALL countries could pick up on them and offer them to their own citizens.

You mentioned that your son is doing great right now (yayayayaya!) and playing sports and basically living his life as a normal 23 year old. That is wonderful to hear!! Is he under any particular kind of treatment now, or is he in a wait and watch mode?

Hugggggs,

Cheryl

olgaT

CherylHutch said:

Welcome Olga!!
Welcome to the board here, Olga! What a fabulous post with great information in it. It's the kind of information that one has to absorb and file away but I thank you very much for all the research you have done to be able to share this much information with us!

In my case, I am considered to have "multiple" mets because I had 7 of them that showed up on the CAT scan (2 of them lit up the PET scan). Of the 2 that lit up the PET scan, the largest was the one that Dr. Halkier ablated... and I came through that procedure with flying colours (even with a General Anesthesia, I was able to be discharged later that afternoon). That now leaves me with 6. The second one that lit up the PET is about 7mm. The other 5 are under 5mm, hence did not show up on the PET but did show up on the CAT. 2 of those 5 they are pretty sure are scar tissue, so that leaves 3 that we are keeping our eye on, plus the 7mm one... and we will see how fast they grow. It's possible, we will ablate the 7mm one if it starts growing and the others don't. If all of them start growing (or others show up), then we may go back on chemo. I'm not sure if surgery will be an option since the spots I currently have are all over the place on both lungs... it would be easier if they were close together.

I feel great, so there are no "symptoms" to treat. No shortness of breath and when I did have a chest xray a couple of hours after the ablation procedure, both my radiologist and the xray technician were impressed with how strong and healthy my lungs were. So I'm happy about that.

The surgery your son had in Germany... that sounds really fascinating. I know it's just wishful thinking but I really wish when countries come up with these great treatments that ALL countries could pick up on them and offer them to their own citizens.

You mentioned that your son is doing great right now (yayayayaya!) and playing sports and basically living his life as a normal 23 year old. That is wonderful to hear!! Is he under any particular kind of treatment now, or is he in a wait and watch mode?

Hugggggs,

Cheryl

Cheryl - there is no way of
Cheryl - there is no way of telling if the nodules are scar tissue really, even if they do not grow it doesn't mean anything. We, people with sarcoma, have our big board on the Sarcoma Alliance web-site where we share the info reg. treatments and we have seen cases with nodules being stable for a few years and then they would start to grow and in doing so proving that they are metastases and not the benign nodules. But one can certainly hope that they are benign until is proven otherwise.
My son's nodules are also spread out in both lungs and all 5 lobes (our right lung has 3 lobes and our left lung has two lobes) and it was the reason(and also the number) for our local thoracic surgery department at VGH to deny the surgery as they use traditional way of doing it - they cut the piece of the lung with the mets inside of it in a shape of the pizza wedge, they said that the loss of the lung tissue will be to big. The surgery in Germany was done with the laser when the smaller mets were burned on the spot and bigger ones are getting circled around by the beam and the edges are fused together. This technology can only be used with the advantage when the mets are small.
Regarding the well being with the lung mets - generally people do not feel anything, no shortness of breath or coughing or pain until they are fairly big - 40-50 mm if there are not many of them. Our lungs keep functioning very well with the significant load in it and there are no nerves inside of the lung tissue to feel the mets. The problems and symptoms start when these mets are starting to push on something nearby - like artery or wind pipe or trachea, it is often to late to do a surgery by then.
My son is not under any treatment as his type of cancer is very chemoresistant because it is a slow growing one. Your oncologist is perfectly right not to giving you the traditional chemotherapy now as its chances to work are low when cancer is a slow growing one, chemotherapy affects cancer cells when they are in the fast dividing cycle. And generally there are not a lot of cancers that can be cured by the chemotherapy alone with no surgery, especially in a stage 4. There are targeted therapies in the development now that block specific receptors on the cancer cells that they use to grow - they are different for different types of cancer, they are only avail. on the clinical trials. We do not get a lot of clinical trials in Vancouver though. We are waiting for something appropriate to arrive here for the trial and in the meantime we are trying to tackle the residual mets by the surgery, now the RFA is considered for the one bigger met that is growing faster then the rest, they are all very small. Like we say on our sarcoma board, do anything to buy some time and hang around long enough for the cure to be found.
Thank you for posting your experience with this RFA doctor here in Vancouver, we have been referred to see him in a few next weeks. I was very skeptical about his possible level of experience and now he looks more credible to me and also I know what type of manners to expect. Not like I really care about his manners, I only care about his expertise in this field. Have you asked how long ago he started doing this and how many patients he's done?

CherylHutch

olgaT said:

Cheryl - there is no way of
Cheryl - there is no way of telling if the nodules are scar tissue really, even if they do not grow it doesn't mean anything. We, people with sarcoma, have our big board on the Sarcoma Alliance web-site where we share the info reg. treatments and we have seen cases with nodules being stable for a few years and then they would start to grow and in doing so proving that they are metastases and not the benign nodules. But one can certainly hope that they are benign until is proven otherwise.
My son's nodules are also spread out in both lungs and all 5 lobes (our right lung has 3 lobes and our left lung has two lobes) and it was the reason(and also the number) for our local thoracic surgery department at VGH to deny the surgery as they use traditional way of doing it - they cut the piece of the lung with the mets inside of it in a shape of the pizza wedge, they said that the loss of the lung tissue will be to big. The surgery in Germany was done with the laser when the smaller mets were burned on the spot and bigger ones are getting circled around by the beam and the edges are fused together. This technology can only be used with the advantage when the mets are small.
Regarding the well being with the lung mets - generally people do not feel anything, no shortness of breath or coughing or pain until they are fairly big - 40-50 mm if there are not many of them. Our lungs keep functioning very well with the significant load in it and there are no nerves inside of the lung tissue to feel the mets. The problems and symptoms start when these mets are starting to push on something nearby - like artery or wind pipe or trachea, it is often to late to do a surgery by then.
My son is not under any treatment as his type of cancer is very chemoresistant because it is a slow growing one. Your oncologist is perfectly right not to giving you the traditional chemotherapy now as its chances to work are low when cancer is a slow growing one, chemotherapy affects cancer cells when they are in the fast dividing cycle. And generally there are not a lot of cancers that can be cured by the chemotherapy alone with no surgery, especially in a stage 4. There are targeted therapies in the development now that block specific receptors on the cancer cells that they use to grow - they are different for different types of cancer, they are only avail. on the clinical trials. We do not get a lot of clinical trials in Vancouver though. We are waiting for something appropriate to arrive here for the trial and in the meantime we are trying to tackle the residual mets by the surgery, now the RFA is considered for the one bigger met that is growing faster then the rest, they are all very small. Like we say on our sarcoma board, do anything to buy some time and hang around long enough for the cure to be found.
Thank you for posting your experience with this RFA doctor here in Vancouver, we have been referred to see him in a few next weeks. I was very skeptical about his possible level of experience and now he looks more credible to me and also I know what type of manners to expect. Not like I really care about his manners, I only care about his expertise in this field. Have you asked how long ago he started doing this and how many patients he's done?

nodules
Geez... lots of info to digest in both posts, Olga... but you are definitely a wealth of information. I sort of realized there was no way of knowing if a nodule is benign or not, unless one can take a biopsy... and obviously one can't biopsy every tiny spot that pops up. The fact that there is even one met, and in my case, the colon cancer had spread to the adrenal gland (which was surgically removed), the chances the other spots/nodules in the lungs are mets as well. On the other hand, maybe this is just my positive thinking in play, but the fact that people who do not have cancer can have benign nodules and/or scaring tissue from bouts of pneumonia (I have had bronchial pneumonia in the past), there is the possibility that some of these spots are benign or scar tissue.

Granted, I've only had the one met ablated, so this certainly doesn't make me an expert by any stretch, but I stand by my original post where I think Dr. Halkier did a fantastic job. I certainly have no qualms at all about recommending him for this lung RFA procedure. His manner is very blunt and that is what rubbed me the wrong way. I was/am not used to that. There's also the added risk factor that I am not a small gal, so that can produce problems both from a procedure point of view and from a General Anesthetic point of view. Depending on the location of the met(s) and from what angle he may have to go in at, in my case a General Anesthetic was recommended... but other times it can be done with a local. When I was there for the procedure, he did try to talk me out of it. His reason being that I was not having any uncomfortable symptoms, my quality of life was fine right now and there was a risk both with the procedure (potential of a collapsed or partially collapsed lung, or "leaking"), as well as the risks of being put under a General Anesthetic (for any kind of surgery). Originally, he was going to go after the 2 mets, but since they were on different lungs, he said he would only go after the largest... he was not going to put me under the added risk of two potentially collapsed lungs (not that that would happen and it is actually quite rare, but the potential is always there). Again, I'm sure each case is individual depending on what other factors are involved (IE: age, general health, weight, etc). I happen to be very healthy and not considered that old, but I do have the weight factor.

Anywho... suffice it to say, the procedure went as smooth as can be. I wasn't really concerned about the General Anesthetic since I have had it numerous times in the past for other surgeries and it was never a problem... and it wasn't this time. I came out of it very easily and I think as I mentioned above, from the time I came out of it, I was wide awake. About 3 hours after the procedure, they then do an xray to see how the lung and ablated area is doing. Both Dr. Halkier and the xray technicians were surprised at how alert I was and once he saw my xray that showed everything was perfectly fine, he wrote out my discharge order so that I could go home and did not have to stay overnight (which I was told I would have to because of the General Anesthetic).

Royal Columbian has called me to tell me they have set me up with a CAT scan on March 27th and I will be seeing Dr. Halkier again then for my followup. He does a followup CAT scan 6-8 weeks after the procedure.

Now, I know he told me when he started doing this procedure himself, but that has slipped my mind. The procedure itself is "relatively" new in that I believe he said it has only been done since 2003. I'm not sure if he meant here in Canada, or in all of North America. He said that he has done about 100 of these lung ablations. He told me that that may not sound like a lot but in fact it is because not everyone who has cancer nodules in their lungs are eligible for the procedure. I'm not sure if this is his criteria or a standard form of criteria... but he will only do the procedure if 1) there's a potential for a cure or 2) it will give someone a better quality of life. He said he has had to turn away 50% of the patients who are referred to him because they don't meet the criteria. I'm not sure why/where I fell in the criteria, but he did try to talk me out of it when he said he wouldn't do both mets (because of them being on two lungs) and he felt I was putting myself at more risk than the benefit I would receive. But I told him I did want both mets out, but if he could only do the one, then I wanted to go ahead and have the largest out.

So, don't be turned off if you find his manner blunt... and be forewarned that he does have this criteria. At the same time, I wouldn't hesitate to recommend him and I think he is very good at his job.

olgaT

CherylHutch said:

nodules
Geez... lots of info to digest in both posts, Olga... but you are definitely a wealth of information. I sort of realized there was no way of knowing if a nodule is benign or not, unless one can take a biopsy... and obviously one can't biopsy every tiny spot that pops up. The fact that there is even one met, and in my case, the colon cancer had spread to the adrenal gland (which was surgically removed), the chances the other spots/nodules in the lungs are mets as well. On the other hand, maybe this is just my positive thinking in play, but the fact that people who do not have cancer can have benign nodules and/or scaring tissue from bouts of pneumonia (I have had bronchial pneumonia in the past), there is the possibility that some of these spots are benign or scar tissue.

Granted, I've only had the one met ablated, so this certainly doesn't make me an expert by any stretch, but I stand by my original post where I think Dr. Halkier did a fantastic job. I certainly have no qualms at all about recommending him for this lung RFA procedure. His manner is very blunt and that is what rubbed me the wrong way. I was/am not used to that. There's also the added risk factor that I am not a small gal, so that can produce problems both from a procedure point of view and from a General Anesthetic point of view. Depending on the location of the met(s) and from what angle he may have to go in at, in my case a General Anesthetic was recommended... but other times it can be done with a local. When I was there for the procedure, he did try to talk me out of it. His reason being that I was not having any uncomfortable symptoms, my quality of life was fine right now and there was a risk both with the procedure (potential of a collapsed or partially collapsed lung, or "leaking"), as well as the risks of being put under a General Anesthetic (for any kind of surgery). Originally, he was going to go after the 2 mets, but since they were on different lungs, he said he would only go after the largest... he was not going to put me under the added risk of two potentially collapsed lungs (not that that would happen and it is actually quite rare, but the potential is always there). Again, I'm sure each case is individual depending on what other factors are involved (IE: age, general health, weight, etc). I happen to be very healthy and not considered that old, but I do have the weight factor.

Anywho... suffice it to say, the procedure went as smooth as can be. I wasn't really concerned about the General Anesthetic since I have had it numerous times in the past for other surgeries and it was never a problem... and it wasn't this time. I came out of it very easily and I think as I mentioned above, from the time I came out of it, I was wide awake. About 3 hours after the procedure, they then do an xray to see how the lung and ablated area is doing. Both Dr. Halkier and the xray technicians were surprised at how alert I was and once he saw my xray that showed everything was perfectly fine, he wrote out my discharge order so that I could go home and did not have to stay overnight (which I was told I would have to because of the General Anesthetic).

Royal Columbian has called me to tell me they have set me up with a CAT scan on March 27th and I will be seeing Dr. Halkier again then for my followup. He does a followup CAT scan 6-8 weeks after the procedure.

Now, I know he told me when he started doing this procedure himself, but that has slipped my mind. The procedure itself is "relatively" new in that I believe he said it has only been done since 2003. I'm not sure if he meant here in Canada, or in all of North America. He said that he has done about 100 of these lung ablations. He told me that that may not sound like a lot but in fact it is because not everyone who has cancer nodules in their lungs are eligible for the procedure. I'm not sure if this is his criteria or a standard form of criteria... but he will only do the procedure if 1) there's a potential for a cure or 2) it will give someone a better quality of life. He said he has had to turn away 50% of the patients who are referred to him because they don't meet the criteria. I'm not sure why/where I fell in the criteria, but he did try to talk me out of it when he said he wouldn't do both mets (because of them being on two lungs) and he felt I was putting myself at more risk than the benefit I would receive. But I told him I did want both mets out, but if he could only do the one, then I wanted to go ahead and have the largest out.

So, don't be turned off if you find his manner blunt... and be forewarned that he does have this criteria. At the same time, I wouldn't hesitate to recommend him and I think he is very good at his job.

Thanks, I'll let you know
Thanks, I'll let you know how did it go although it doesn't look like it is going to be anytime soon - there is probably a long waiting list, we have not heard from the Royal Columbian yet. Do you know anyone else who had the RFA done by Dr. Halkier? 100 ablations is not that many and not that few, medium I would say. First 50 patients that are getting ablations done by a new ablation doctor are at VERY big risk of the pneumothorax, lung collapse, puncture, internal bleeding - about 50 % of them are getting something bad...Then it gets better. The ideal doctors are the ones that do a LOT of cases for a few years, their complications rate gets down to the 10 %, in some cases the complications unavoidable, when they do ablation of the tumor bigger then 30 mm or in a very bad location.

If there is anything else you will need to know about lung mets - surgeries, different ablations, different types of the radio surgeries or radiation therapies used on lungs, complications - pleural effusions, pneumothorax, painkillers - ask me. I am deep in all of this staff for a few years already.

CherylHutch

olgaT said:

Thanks, I'll let you know
Thanks, I'll let you know how did it go although it doesn't look like it is going to be anytime soon - there is probably a long waiting list, we have not heard from the Royal Columbian yet. Do you know anyone else who had the RFA done by Dr. Halkier? 100 ablations is not that many and not that few, medium I would say. First 50 patients that are getting ablations done by a new ablation doctor are at VERY big risk of the pneumothorax, lung collapse, puncture, internal bleeding - about 50 % of them are getting something bad...Then it gets better. The ideal doctors are the ones that do a LOT of cases for a few years, their complications rate gets down to the 10 %, in some cases the complications unavoidable, when they do ablation of the tumor bigger then 30 mm or in a very bad location.

If there is anything else you will need to know about lung mets - surgeries, different ablations, different types of the radio surgeries or radiation therapies used on lungs, complications - pleural effusions, pneumothorax, painkillers - ask me. I am deep in all of this staff for a few years already.

Thanks, Olga
No, I can't say that I know anyone else who has been to Dr. Halkier... but then, since I don't have any of my circle of friends or family in this condition itself, it isn't surprising that I wouldn't know any of his patients

I don't tend to go by statistics...and as far as trusting someone, I do tend to rely on my gut instinct and what they have to say for themselves. I felt very comfortable with Dr. Halkier's confidence on what he could offer and he was very thorough with the potential problems we could run up against. He was also very thorough in explaining to me his feelings about why he wasn't sure I was going to get a lot of benefit from the procedure since I was not having any symptoms or poor quality of life and all procedures come with a risk. But I wanted the one tumour gone (19mm)... so he went ahead and did it. I have had 0 complications and even though I had a general anesthetic, I came through it just fine and as easy, if not easier, than a local. I had NO pain afterwards, not even any discomfort. As far as I'm concerned, I could have very easily have hopped into my car and driven home to the West End from New West... but, of course, that is not allowed, so I did stay with a friend overnight who lives in New West... and I drove home the next morning. Back to my normal activities and it's as if nothing has happened. I go for my 6-8 week followup scan and appt. with Dr. H. on March 27th and there's no doubt he's going to tell me that everything is totally normal/fine/no sign of any problem.

Good luck when you and your son get to see him... and yes, I'd love to hear what your impressions were/are

Hugggggs,

Cheryl