I have been receiving some inquiries from people concerned about my welfare urging me to spend more time scribbling a few notes about what's happening to me.
So first - let me apologise for not keeping you informed.
The brief answer to your inquiries is nothing is happening right now.
I have some appointments scheduled to have an endoscopy so that the snake can be slid down my throat and the doctors can see what they can see from inside. If there is anything there then they will take a biopsy and have this analysed and then we will be better informed.
Meanwhile - I have also found a thoracic surgeon who may well be willing to see me however I suspect that the sequence of events needs to be:
a) have the endoscopy and see what if anything this find or adds to the information listing
b) make an appointment with the thoracic surgeon or at least communicate with him about what's been happening and ask for a preliminary interview so that he can become familiar with the situation to this point.
c) to wait until we can actually obtain a new CT scan and see what if any changes have taken place
d) based on the results of this scan have yet another discussion with the thoracic surgeon to see if what is in the lungs needs to be operated on either to find out for sure what it is and/or to remove it - if at all possible and hope that this does the job.
I am still of course communicating with my doctors and there will be a second opinion which I will be obtaining within a couple of weeks from yet another oncologist to see what if any other views can be obtained about the future.
Meanwhile, I am taking my medicines, and occasionally taking a paracetamol pill (pain killer) to deal with the pain in the shoulders that I am currently attributing to arthritis.
I hope that this puts everyone into the picture - at least to the extent that I can provide it.
More as and when events unfold!
Wednesday, June 27, 2007
Thursday, June 07, 2007
I am not normally and indecisive person but . . . .
I am not normally and indecisive person but . . . .
On this occasion I have to admit I am stumped.
Following discussions with my radiation oncologist I am not entirely sure I am further advanced with information about what is going on nor able to express what I would like to do about things.
Let me explain.
On the one hand it is absolutely clear that in the lung area there is a small 22 mm irregular mass that the radiologist who did the CT scan suggests is suspicious of being a metastasis.
Following the PET scan the radiologist there suggests that since the mass did not absorb the radioactive glucose it is more likely to be benign.
What is incontrovertible is that this mass did NOT exist in the lung area when the previous scan was taken in December.
So if it is NOT a new growth of the cancer then what could it be?
Well it is remotely possible that it is some scar tissue - but I am told this is unlikely. It is also possible that it is a cancerous growth which has nothing to do with the original cancer and so may well be benign as a result.
On the other hand it could be a growth that is so fibrous that it does not absorb the contrast medium and since the growth that was in the lymph nodes last year was also negative to a PET scan and was unable to be tested by means of a biopsy because it was too fibrous in nature. So it it possible that this new growth in the lung is also cancerous and also fibrous in nature and so not absorbing the radioactive glucose.
One really sure way of finding out what it is would be to ask for surgery to remove it and then check to see. Given that this would create hazards of its own - after all, any operation is a risk is this worth while? One could of course ask for a biopsy using a fine needle biopsy, but if the mass is once again as fibrous as the last one was, then there would be no result, for quite a bit of risk - for example a collapsed lung and/or complications.
Another pretty sure way of finding out what's going on is to wait and see and have a CT scan in 3 months after the one in April and then check to see what if any changes have taken place.
Obviously if the mass is benign then it should not have grown - if of course it is not benign then you have given the cancer a chance to take an event better hold and possibly to seed itself elsewhere as well.
There is of course no reassurance that the cancer has not already spread elsewhere, but is still in such microscopic form that it is still undetectable.
So let's look at the other site where there is some problem - at the apex of the lung and in the area which is where the remnants of the oesophagus and the stomach were joined. The scans show, on the one hand undifferentiated and diffuse results - ie there is not a discernible mass there at present, but there is something going on because the area did absorb the radioactive glucose.
One explanation is that after radiation treatment scar tissue can form for some years after the end of the treatment and this scar tissue could be responsible for what is showing up in the scans. On the other hand it could also be a recurrence of the cancer or more likely something that was not entirely eradicated by the treatment and the surgery. Once again if this grows then there is not much room to manoeuvre in there and there are heaps of pretty vital things that you need to keep on breathing in the area.
So once again you can check with an endoscopy what is happening inside the tubes, but this will not show what is happening on the outside of both the airway and what's left of the oesophagus nor indeed what if anything is happening in some of the major blood vessels in the area.
So if it is scar tissue - well and good, if not there is really no great and easy way to tell.
Meanwhile the cancer markers in the blood tests did not show any elevation and so we did decide to have another test today to see if these have increased - as they are most likely to be elevated if the things are active cancers.
If they are, then we know for certain that the cancer is back in at least one or more spots.
If the test is negative it still does not rule things out.
If there is more than one spot is in question then there are some other realities that have to be faced.
In the first place it is not possible to irradiate the areas that have already been treated - the safe dosage levels would be exceeded and this could actually make things worse rather than better.
Also if there is nothing to cut out then chemo therapy seems to be the only alternative and this too has a number of downsides - besides the bleeding obvious which is that it is particularly nasty to take into your system some of the most toxic chemicals on the planet. The stuff may well kill fast replicating cells like cancer cells, but it also kills you immune system and plays havoc with the kidneys which have to clear all this crap and also plays havoc with the bone marrow cells. Indeed I am advised that when you have had three of four chemo therapy treatments even this is no longer effective because your system cannot tolerate any more of it.
What's worse of course, is that chemo therapy lasts around 3 months and while it MAY give you some remission time, during its course it makes life not all that worth living.
So I have been asked questions about "quality of life" issues.
If I wait for the next few weeks until such time as we can have a CT scan again then we will be able to see whether the mass has grown or not. If it has then we can start the chemo therapy and hope that it reduces the growth and gives some remission time. Meanwhile there are at least a few weeks during which I can actually DO things.
If I start chemo therapy immediately then of course after the first week, the side effects usually kick in and once again I will be subject to increasing vulnerability to illness of any other kind as the white cells die along with the cancer cells.
So my question is how the hell do you make this decision? What do you base your judgement on?
Either way it seems to be what the Americans call a 'crap shoot' and one that is likely to produce not all that pleasant a journey along the way and certainly reduces the chances of yet another round of treatment thereafter especially if it does not succeed.
Then we have the situation I am afraid I am very familiar with where the ill person is in a bed and not really with it for some time before the end happens.
All in all not a great set of choices.
Getting a second opinion is possible - with all the consequent delays that this means and give the same evidence is there really a hope that a different conclusion will be drawn. I guess it's possible.
So this is the situation I find myself in at the end of today. Frankly I have NO idea what to do next. It's not that I am paralysed with fear, it's more that I can't for the life of me see what other possibilities another doctor could suggest.
Anyway I do not have all that much time to muse about it all - I will have to make a decision in some direction very soon - and the only one that offers any 'time out' is the one that suggests that I adopt a wait and see attitude for the next few weeks and not rush in to the only treatment that seems to be on offer at present which is the chemo therapy.
I am NOT going to ask anyone what they would do in my place - but for anyone who has had some risk management experience in their working life - THIS would be a wonderful opportunity to put the formulas into action!
On this occasion I have to admit I am stumped.
Following discussions with my radiation oncologist I am not entirely sure I am further advanced with information about what is going on nor able to express what I would like to do about things.
Let me explain.
On the one hand it is absolutely clear that in the lung area there is a small 22 mm irregular mass that the radiologist who did the CT scan suggests is suspicious of being a metastasis.
Following the PET scan the radiologist there suggests that since the mass did not absorb the radioactive glucose it is more likely to be benign.
What is incontrovertible is that this mass did NOT exist in the lung area when the previous scan was taken in December.
So if it is NOT a new growth of the cancer then what could it be?
Well it is remotely possible that it is some scar tissue - but I am told this is unlikely. It is also possible that it is a cancerous growth which has nothing to do with the original cancer and so may well be benign as a result.
On the other hand it could be a growth that is so fibrous that it does not absorb the contrast medium and since the growth that was in the lymph nodes last year was also negative to a PET scan and was unable to be tested by means of a biopsy because it was too fibrous in nature. So it it possible that this new growth in the lung is also cancerous and also fibrous in nature and so not absorbing the radioactive glucose.
One really sure way of finding out what it is would be to ask for surgery to remove it and then check to see. Given that this would create hazards of its own - after all, any operation is a risk is this worth while? One could of course ask for a biopsy using a fine needle biopsy, but if the mass is once again as fibrous as the last one was, then there would be no result, for quite a bit of risk - for example a collapsed lung and/or complications.
Another pretty sure way of finding out what's going on is to wait and see and have a CT scan in 3 months after the one in April and then check to see what if any changes have taken place.
Obviously if the mass is benign then it should not have grown - if of course it is not benign then you have given the cancer a chance to take an event better hold and possibly to seed itself elsewhere as well.
There is of course no reassurance that the cancer has not already spread elsewhere, but is still in such microscopic form that it is still undetectable.
So let's look at the other site where there is some problem - at the apex of the lung and in the area which is where the remnants of the oesophagus and the stomach were joined. The scans show, on the one hand undifferentiated and diffuse results - ie there is not a discernible mass there at present, but there is something going on because the area did absorb the radioactive glucose.
One explanation is that after radiation treatment scar tissue can form for some years after the end of the treatment and this scar tissue could be responsible for what is showing up in the scans. On the other hand it could also be a recurrence of the cancer or more likely something that was not entirely eradicated by the treatment and the surgery. Once again if this grows then there is not much room to manoeuvre in there and there are heaps of pretty vital things that you need to keep on breathing in the area.
So once again you can check with an endoscopy what is happening inside the tubes, but this will not show what is happening on the outside of both the airway and what's left of the oesophagus nor indeed what if anything is happening in some of the major blood vessels in the area.
So if it is scar tissue - well and good, if not there is really no great and easy way to tell.
Meanwhile the cancer markers in the blood tests did not show any elevation and so we did decide to have another test today to see if these have increased - as they are most likely to be elevated if the things are active cancers.
If they are, then we know for certain that the cancer is back in at least one or more spots.
If the test is negative it still does not rule things out.
If there is more than one spot is in question then there are some other realities that have to be faced.
In the first place it is not possible to irradiate the areas that have already been treated - the safe dosage levels would be exceeded and this could actually make things worse rather than better.
Also if there is nothing to cut out then chemo therapy seems to be the only alternative and this too has a number of downsides - besides the bleeding obvious which is that it is particularly nasty to take into your system some of the most toxic chemicals on the planet. The stuff may well kill fast replicating cells like cancer cells, but it also kills you immune system and plays havoc with the kidneys which have to clear all this crap and also plays havoc with the bone marrow cells. Indeed I am advised that when you have had three of four chemo therapy treatments even this is no longer effective because your system cannot tolerate any more of it.
What's worse of course, is that chemo therapy lasts around 3 months and while it MAY give you some remission time, during its course it makes life not all that worth living.
So I have been asked questions about "quality of life" issues.
If I wait for the next few weeks until such time as we can have a CT scan again then we will be able to see whether the mass has grown or not. If it has then we can start the chemo therapy and hope that it reduces the growth and gives some remission time. Meanwhile there are at least a few weeks during which I can actually DO things.
If I start chemo therapy immediately then of course after the first week, the side effects usually kick in and once again I will be subject to increasing vulnerability to illness of any other kind as the white cells die along with the cancer cells.
So my question is how the hell do you make this decision? What do you base your judgement on?
Either way it seems to be what the Americans call a 'crap shoot' and one that is likely to produce not all that pleasant a journey along the way and certainly reduces the chances of yet another round of treatment thereafter especially if it does not succeed.
Then we have the situation I am afraid I am very familiar with where the ill person is in a bed and not really with it for some time before the end happens.
All in all not a great set of choices.
Getting a second opinion is possible - with all the consequent delays that this means and give the same evidence is there really a hope that a different conclusion will be drawn. I guess it's possible.
So this is the situation I find myself in at the end of today. Frankly I have NO idea what to do next. It's not that I am paralysed with fear, it's more that I can't for the life of me see what other possibilities another doctor could suggest.
Anyway I do not have all that much time to muse about it all - I will have to make a decision in some direction very soon - and the only one that offers any 'time out' is the one that suggests that I adopt a wait and see attitude for the next few weeks and not rush in to the only treatment that seems to be on offer at present which is the chemo therapy.
I am NOT going to ask anyone what they would do in my place - but for anyone who has had some risk management experience in their working life - THIS would be a wonderful opportunity to put the formulas into action!
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