How much treatment is enough?

steven12

The idea for this subject came to me after finding Polarprincess's: "How to know if you are getting enough chemo? All of your different regimens make me wonder". I am just opening a new item as I intend to question, beside chemo/radiation, also about some other important issues in our treatments.
I think this is the essential question, everybody will face soon or later in the course of the treatment. Most of Doctors, understandably, wants to kill the beast in our body by all means, ordering indefinite chemotherapy, radiation, CT's every 3 month's ( not MRI's, though !! ), PET scans, new Port's implanted with long fluoroscope, etc... Sometimes I wonder, would they do the same things if it is about there own body? Ever since I am on this Forum I didn't find anybody concerned about the radiation hazard we are exposed with every CT, PET or Port implantation which is prescribed by our onc's so easily without mentioning any risks. Just try to search the Net about the dose of radiation imposed by a single CT you will be terrified. Why we could not be screened instead of CT's by MRI's? Simply, because MRI is more costly for the health care and I believe the onc's are also instructed to refer all cancer patients to CT's and not MRI's. This patients already have cancer anyway and getting another ( leukemia with latency time ) is not a big deal. Claims that CT is better then MRI is simply not true, they both have comparable resolution and detection sensitivity. Every Port implantation is done with continuous fluoroscope which could last 20-30 minutes. Can you imagine the radiation dose from such procedure. You may found that a single CT scan is equivalent to 50-200 chest X-rays or getting the same dosage as the Hiroshima victim's just 2 miles away from the explosion. I think if we all start to ask for MRI's instead of CT's they would do something about.
So how much treatment is enough or not? I set to myself a goal. I can accept treatments as much and long until I don't feel that it will not ruin my health more then the cancer alone. And I know, and everybody around me should know, this is a decision which can be made only by myself and not by my oncologist's, surgeon's, mother, father, brother or sister, wife...
Best wishes,
Steven

Buzzard

In a few words.........
Doesn't matter to me....Im still alive, thats the ultimate goal........God Bless ya...

polarprincess

i do
i worry about the radiation issue as well. I am confused about all these every 3 month ct's because when you look up the recommendations for colon and rectal cancer follow ups for my stage anyway, it says ct scan once a year, and pet scan not routinely recommended. So why then are they doing them so often? I am assuming to catch mets early on, but it should probably be more for high risk patients and not just routine for the lower risk. I am definitely going to be asking about this when i am finished with treatment. I know my doctors at mayo don't recommend pet scans at all.

traci43

my thoughts
I too am concerned about the amout of radiation. My HMO will only do CT Scans every 6 months and that's both while getting chemo and while NED because of the potential effects. However, given that if they don't keep track of the current cancer I may not be around to get some radition-related disease in the future, I'd rather have the radiation now than not.

Also, I believe that that's what caused my problem int he first place. I had at least 20 IVP's from 11 - 21. Each IVP is a series of 8 - 12 xrays of my kidneys with IV dye, focusing on my left kidney. My cancer was located in the upper left section of the descending colon. Of course there's been no confirmation, but I find it hard to believe there's no connection.

My 2 cents

CherylHutch

Mileage may vary...
My oncologist DID explain to me the risks involved as well as the benefits (detection of new metastases vs not finding until there are symptoms). Some of us are at more of a risk to have MRIs (again, one has to weigh the risks vs the benefits), in my case, because I have metal clips on my abdominal wall to mark where the abscess was attached (hence where they had to radiate) and metal clips around where the right adrenal gland was removed (again, for monitoring for possible metastases).

I'm not sure where you are getting your information on the 'Net, Steven, but you have to remember that there is a lot of out of date hogwash out there and I would hate to be making decisions based on information I got from the 'Net, without having discussed the pros and cons with my Oncologist and team of doctors. Unless you don't trust the team you have, in which case my advise would be to quickly change to someone you can trust. Trust and respect for someone who is there to save your life is mandatory otherwise I think you will always be questioning everything that is done to/for you.

The CAT, PET and MRI scans all serve different purposes... and ALL are monitoring tools, just as the measurement of CEA in the blood is a monitoring tool. NONE of them are used solely on their own to make a decision, but combined and used as often as needed, can be the difference between life and death decisions. For those who are wondering just what IS the difference between the three of them, here is an article describing the differences:

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CT Scan, MRI and PET Scans…What are the differences?

CT, MRI and PET scans are all diagnostic tools to non-invasively (non-surgically) look inside the body. They are all based on the fact that certain things happen to atoms in our bodies when they absorb energy. Resonance refers to the level of absorption achieved by adjusting the frequency of the radiation and the strength of the magnetic field – like tuning a radio to a particular station.

CT (computerized tomography) uses a sophisticated X ray machine combined with a computer to create a detailed picture of the body’s tissues and structure. Usually a special dye called a contrast material will be injected prior to the scan. This makes it easier to see abnormal tissue due to specific absorption rates.

Nuclear magnetic resonance is produced by measuring the magnetism of spinning electrons and protons and their interactions with nearby atoms (usually protons) when they absorb energy. This provides information about the chemical structure of organic molecules. The use of the word “nuclear” has recently been avoided and Magnetic Resonance Imaging (MRI) is now preferred. MRI uses a magnetic field from super-cooled magnets and can often distinguish more accurately between healthy and diseased tissue. A contrast agent is usually used. MRI can provide pictures from various angles and construct a three dimensional image. Some patients who have received certain types of surgical clips, metallic fragments, cardiac monitors or pacemakers cannot receive this type of scan.

Positron Emission Tomography (PET) scans measure emissions from positron-emitting molecules. Because many useful, common elements have positron emitting forms (carbon, nitrogen, and oxygen), valuable functional information can be obtained. This is the main difference between the CT and MRI scans. The PET shows molecular function and activity not structure, and therefore can often differentiate between normal and abnormal (cancerous / tumor) or live versus dead tissue. Like SPECT (single photon emission tomography), PET also can product three dimensional images, and is usually used to compliment rather than replace the information obtained from CT or MRI scans.
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For me... I have no serious concerns about the radiation. We are bombarded with radiation every day, not to mention other frequencies (just think of the bandwidth of cell phone transmissions, computer transmissions, and everything bouncing around us... yet we don't worry about them). I realize that overuse of radiation CAN and MAY do harm down the road... but that is my goal, that I DO have a DOWN THE ROAD to worry about

Hugggggs,

Cheryl

lisa42

I'm also concerned about the
I'm also concerned about the radiation. During my first six months of treatment after diagnosis (during Folfox/Avastin), my oncologist was having me get scanned every 6 weeks, believe it or not. I didn't know any better then to say I didn't want it that often. Insurance would have me alternate CT then a PET the next time because I could only get each one every 3 months at the most. Later, my liver specialist who did my surgery said an MRI is really the best tool to see the liver with (he feels a CT is best to see the lungs with) & told this to my oncologist (who is not in the same network, unfortunately). My onc. still went ahead and said it was "easier" to just do the CT rather than separate CT for lungs and MRI for the liver and pelvic area (my colorectal specialist also said MRI is better for the colon and rectum, but CT was acceptable). I think I'll bring this up at my next Dr. appt w/ the onc- that I shouldn't get scanned so often & let's do MRI for the abdomen and pelvis, while saving the CT for the chest/lungs. We'll see what he says...
Lisa

steven12

lisa42 said:

I'm also concerned about the
I'm also concerned about the radiation. During my first six months of treatment after diagnosis (during Folfox/Avastin), my oncologist was having me get scanned every 6 weeks, believe it or not. I didn't know any better then to say I didn't want it that often. Insurance would have me alternate CT then a PET the next time because I could only get each one every 3 months at the most. Later, my liver specialist who did my surgery said an MRI is really the best tool to see the liver with (he feels a CT is best to see the lungs with) & told this to my oncologist (who is not in the same network, unfortunately). My onc. still went ahead and said it was "easier" to just do the CT rather than separate CT for lungs and MRI for the liver and pelvic area (my colorectal specialist also said MRI is better for the colon and rectum, but CT was acceptable). I think I'll bring this up at my next Dr. appt w/ the onc- that I shouldn't get scanned so often & let's do MRI for the abdomen and pelvis, while saving the CT for the chest/lungs. We'll see what he says...
Lisa

CT's, PET's and other tools
Cheryl,
By my profession I am very close to all these technologies and believe I know what I am talking about. Just try Yourself to search the Net and take only serious sites about the radiation doses and you'll find all that what I mentioned. CEA is a good tool, not harmful unfortunately reliable only for some. MRI is not harmful but I mentioned what is happening around. Just ask your oncologist, but ask her to answer honestly, if she would be in the same situation like you, would she go under CT every 3 months or rather under MRI? If you just look from these perspectives around, you will find people whose health were ruined just by these "tools" more then it were done by cancer itself. Don't you think there is a possibility that many cancer patients actually living shorter just because of unnecessary over treatments?
Lisa,
Good luck with your try to get MRI instead of CT. I have tried that once and what happened the radiologist turned over my onc's referral and redirected me to have CT. Of course this happened because my onc put a note on the referral that this is the patient's request and not his !! Finally he admitted that he will be able to send me for MRI but not more often than every 6 months. And all this just because of the higher cost for the Health care.
Best wishes,
Steven

neon356

Steven,
You don't
Steven,
You don't have to have the scans if you don't want them. Or the chemo, or the radiation. There are people on this forum who've opted out of many of the standard treatments,and managed to beat it. So the choice is yours. The medical statistics are always about 3-5 years behind, so when I was diagnosed several years back the odds of my winning the battle against the beast were 70/30 against me. Now the odds are considerably better. My point is that with all the cat scans, x-rays, radiation therapy, and heavy duty poisons that they inject into your body to kill the cancer the odds of surviving are much better. So they must be doing something right. Sure we worry about the effects, and sure we may have long lasting if not lifelong effects of all that cr*p they've subjected us to. Radiation caused much bone loss the loss of most of my teeth, and brain freeze that's taken away much of my short term memory.But I'm alive. and thrilled that I live in an age when I had a chance at survival.I'm no shrink, but to me you sound a bit angry, and feeling that you're not in control of your body. I think we all go through that when we first learn that we're certainly about to die if nothing is done. Our body has failed us, there's no justice. So how much treatment is a good thing and how much is bad. There is no answer to that and we must all decide and ultimately be the master of our fate. I trusted my doctors, and always felt that they had my interest at heart. Excuse my rantings here. You may have detected that some of what you've expressed has gotten me upset. But that's what this group is for- to express our feelings and experiences about this adventure that we're sharing.... Carl

CherylHutch

neon356 said:

Steven,
You don't
Steven,
You don't have to have the scans if you don't want them. Or the chemo, or the radiation. There are people on this forum who've opted out of many of the standard treatments,and managed to beat it. So the choice is yours. The medical statistics are always about 3-5 years behind, so when I was diagnosed several years back the odds of my winning the battle against the beast were 70/30 against me. Now the odds are considerably better. My point is that with all the cat scans, x-rays, radiation therapy, and heavy duty poisons that they inject into your body to kill the cancer the odds of surviving are much better. So they must be doing something right. Sure we worry about the effects, and sure we may have long lasting if not lifelong effects of all that cr*p they've subjected us to. Radiation caused much bone loss the loss of most of my teeth, and brain freeze that's taken away much of my short term memory.But I'm alive. and thrilled that I live in an age when I had a chance at survival.I'm no shrink, but to me you sound a bit angry, and feeling that you're not in control of your body. I think we all go through that when we first learn that we're certainly about to die if nothing is done. Our body has failed us, there's no justice. So how much treatment is a good thing and how much is bad. There is no answer to that and we must all decide and ultimately be the master of our fate. I trusted my doctors, and always felt that they had my interest at heart. Excuse my rantings here. You may have detected that some of what you've expressed has gotten me upset. But that's what this group is for- to express our feelings and experiences about this adventure that we're sharing.... Carl

Thanks, Carl... I'm with you!!
Carl, I think maybe you worded it better than I did... the bottom line is, we all can stop our treatments, any or all of them, at any time we want. No one is forcing us to take any of them, but if you have a good oncologist, one that you trust, then you work with them and have them explain what treatment he/she is recommending and why.

Steven, like Carl, I think you are showing a lot of anger, which I know is not directed at us, but when you open up a topic for discussion and someone responds with maybe not the answer or words you want to hear, you tend to get very short with them. I HAVE, like most everyone on this forum, done research on the 'Net... when I was working, I worked in the IT industry so I'm not a newbie who doesn't know what's out there or how to find it. I also know that half the information out there is pure crap and if you want to buy into it, then fair enough... I just personally think we shouldn't be wasting our time researching and finding as much negative information as we can. I also tend to use articles/quotes when I state something so it's not just a "I read on the internet" or "A friend told me...". A couple of times I have asked you WHERE you are getting your information, but you don't mention that or refer to your resources.

I'm not sure exactly what it is you want all of us to say when you state things like MRIs are the only way to go because they are not as "dangerous" as CATs or PETs. Some of us don't believe that and golly gee whiz, some of us are at more risk with MRIs than CATs or PETs because, surprise, surprise, we are all unique individuals that may have someone different than you, hence we do have different recommendations. The metal clips I have in me prevent me from running out and having MRIs instead of the other scans... but that doesn't mean someone else can't.

If you think your oncologist is betraying you by writing notes, then change oncologists. Personally, if I was the oncologist who recommended a CAT scan, for whatever the reason, and the patient insisted on an MRI... then I, too, would write a note to explain that it was the patient's request and what my original recommendation was and for what reason. Should down the road the patient decide or be told they should have had a CAT scan at this point and not an MRI since they all show things in different ways... I would want my recommendations documented so the patient can't come back at me. Your mileage may vary.

Since obviously, you don't like what I say when I participate in the topics you start, it's no skin off my nose not to participate. Every time I do, you say I am not understanding or that I should go out to the internet and do research... why? I don't have the same concerns as you, obviously, and what I've been told and how it's explained to me, suits me just fine. I also happen to have an oncologist I trust and wouldn't change for the world... and golly gee whiz, here it is 2 years later, I'm still fighting the battle, but am feeling great, don't have any internal problems and no one can believe I'm sick when they look at me... because I'm not! But then, I don't spend my time trying to find fault with what the medical industry is trying to do to keep me alive... again, everyone has the choice to believe what they want.

I wish you well in your fight... whatever you decide to do. With or without medical intervention. Others have done fine without and others do fine with what is recommended.

Cheryl

steven12

CherylHutch said:

Thanks, Carl... I'm with you!!
Carl, I think maybe you worded it better than I did... the bottom line is, we all can stop our treatments, any or all of them, at any time we want. No one is forcing us to take any of them, but if you have a good oncologist, one that you trust, then you work with them and have them explain what treatment he/she is recommending and why.

Steven, like Carl, I think you are showing a lot of anger, which I know is not directed at us, but when you open up a topic for discussion and someone responds with maybe not the answer or words you want to hear, you tend to get very short with them. I HAVE, like most everyone on this forum, done research on the 'Net... when I was working, I worked in the IT industry so I'm not a newbie who doesn't know what's out there or how to find it. I also know that half the information out there is pure crap and if you want to buy into it, then fair enough... I just personally think we shouldn't be wasting our time researching and finding as much negative information as we can. I also tend to use articles/quotes when I state something so it's not just a "I read on the internet" or "A friend told me...". A couple of times I have asked you WHERE you are getting your information, but you don't mention that or refer to your resources.

I'm not sure exactly what it is you want all of us to say when you state things like MRIs are the only way to go because they are not as "dangerous" as CATs or PETs. Some of us don't believe that and golly gee whiz, some of us are at more risk with MRIs than CATs or PETs because, surprise, surprise, we are all unique individuals that may have someone different than you, hence we do have different recommendations. The metal clips I have in me prevent me from running out and having MRIs instead of the other scans... but that doesn't mean someone else can't.

If you think your oncologist is betraying you by writing notes, then change oncologists. Personally, if I was the oncologist who recommended a CAT scan, for whatever the reason, and the patient insisted on an MRI... then I, too, would write a note to explain that it was the patient's request and what my original recommendation was and for what reason. Should down the road the patient decide or be told they should have had a CAT scan at this point and not an MRI since they all show things in different ways... I would want my recommendations documented so the patient can't come back at me. Your mileage may vary.

Since obviously, you don't like what I say when I participate in the topics you start, it's no skin off my nose not to participate. Every time I do, you say I am not understanding or that I should go out to the internet and do research... why? I don't have the same concerns as you, obviously, and what I've been told and how it's explained to me, suits me just fine. I also happen to have an oncologist I trust and wouldn't change for the world... and golly gee whiz, here it is 2 years later, I'm still fighting the battle, but am feeling great, don't have any internal problems and no one can believe I'm sick when they look at me... because I'm not! But then, I don't spend my time trying to find fault with what the medical industry is trying to do to keep me alive... again, everyone has the choice to believe what they want.

I wish you well in your fight... whatever you decide to do. With or without medical intervention. Others have done fine without and others do fine with what is recommended.

Cheryl

Misunderstandings
Hello and thanks to everybody for the replies. I think most of you completely misunderstood me I think due to my limited English vocabulary. I must point out:
1. I started this objective with the intention to give an example how I am trying to find an answer for myself if there is a right amount of treatments and what is that. I thought this could give some ideas to other people here. That is to repeat myself: I want as much treatment at any moment until I still not feeling that is degrading my health more then the cancer itself. All of my discussion is around this idea which indirectly includes the radiation hazard as well.
2. I am not angry and I believe in doctors but not unconditionally I must say. I know that they have the "tools" what they have and they have to use those. But please, they must respect us, cancer patients, the same way as any other patients with just a seasonal flu. If there is a less harmful screening method please refer us to those regardless that is more costly for the health care. I think for instance, that CAT scan every 3 months in many cases of slowly advancing disease is just unnecessary.
3. I intend to battle this beast the same way as everybody here even with periodical CAT scans if needed. But in all this, together with my doctors of course, I will try to find a balance between treatment options which should be reasonable ( whatever we find together that is ) at every moment.
Best wishes, Steven

CherylHutch

steven12 said:

Misunderstandings
Hello and thanks to everybody for the replies. I think most of you completely misunderstood me I think due to my limited English vocabulary. I must point out:
1. I started this objective with the intention to give an example how I am trying to find an answer for myself if there is a right amount of treatments and what is that. I thought this could give some ideas to other people here. That is to repeat myself: I want as much treatment at any moment until I still not feeling that is degrading my health more then the cancer itself. All of my discussion is around this idea which indirectly includes the radiation hazard as well.
2. I am not angry and I believe in doctors but not unconditionally I must say. I know that they have the "tools" what they have and they have to use those. But please, they must respect us, cancer patients, the same way as any other patients with just a seasonal flu. If there is a less harmful screening method please refer us to those regardless that is more costly for the health care. I think for instance, that CAT scan every 3 months in many cases of slowly advancing disease is just unnecessary.
3. I intend to battle this beast the same way as everybody here even with periodical CAT scans if needed. But in all this, together with my doctors of course, I will try to find a balance between treatment options which should be reasonable ( whatever we find together that is ) at every moment.
Best wishes, Steven

My apologies, Steven
Please accept my apologies, Steven... I wasn't aware that English wasn't your first language... you speak it very well! But now I realize that if it isn't your first language, then it's so easy for the rest of us, to see it in writing, we can misinterpret or misunderstand what you were trying to get across. So please do accept my apologies... I'm the first to say, never "assume" and here I was assuming

I do agree with you 100%... always, always keep searching and learning about what our options currently are and what may be just around the corner. I really do believe the people who are going to win the battle are those who, not only have the drive and desire to live, but put that drive into action by learning what is out there, why some treatments are recommended and others are not.

We do have to believe in our doctors, but hey, they are human too... and humans make mistakes. The minute we put doctors up on a pedastal and think they are above us humans, that's the day we are going to run into trouble. All the more reason we have a "team" of doctors and they should all be communicating with each other. If that isn't happening, then time to get on their cases and ask, "Why are you not talking to each other?? I demand the team work together, otherwise, we have to put together a new team that will work together!".

Since I am not a doctor and don't have the knowledge/training that they do, I guess that is why I put more trust in my doctors... but be rest assured, I let them explain what the treatment will be, I then ask questions at the time of learning about it, I then repeat the treatment plan from start to finish so that I understand it and my onc can let me know if I've missed out on something... and then when I go home, if/when more questions come up, I email them to her. She is amazing... I know she's busy with patients all day, but many a time she has answered my emails at 11pm, or 6am... I have no idea when she sleeps, but she always looks rested. The fact I can email her and she will answer, goes a long way for my comfort zone. Even the radiologist who will be doing my lung RFA... I was a little leary about him because I really do think he had a bit of a "God complex", but as I was getting ready to leave our consultation appt., he gave me his card and said if I have any questions or think up more after I've gone, I can email him at any time.

So battle on, we go!! Normally, I think I only have a CAT scan every 6 months and only because of the lung issue at the moment. Once we have that ablated, I'm going to find out how often I'll be having CAT scans. I know the radiologist will want one 3 months after the ablation procedure, and then I think it's 6 months and then a year (this is to make sure the scar tissue from the two ablated tumours is actually being absorbed and going away. And then I know they will want to monitor the other 3 tiny spots... but how often, I'm not sure.

I'll let you know what my onc says when I see her on the 26th after the lung ablation procedure

Hugggggs,

Cheryl