Anyone decline chemo and rad treatment?
Comments
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Not me
There are certainly folks who do as you suggest, even some who do not have 'clean' scans, preferring alternative treatment strategies, for example.
The thing is, generally your doctors want you to continue with these treatments in order to 'slay the strays' as I call it. Cancer is so small in its origin that they simply cannot see it necessarily, cannot be certain that they got all of it.
I, for one, wonder how any one would want to take chances with something that can be so devestatingly dangerous when even these additional chances to kill the stuff are not absolute guarantees of success but ARE reasonable methods for increasing the odds in your behalf. Strikes me as akin to playing Russian roulette.
Best wishes with your treatments and congratulations on your success to date!
Take care,
Joe0 -
Same As Joe
Not something that I was willing to take a lesser degree of success on given a choice....
In the middle of treatment after nine weeks of chemo and having my tonsils taken out. The tumor that I had as a secondary dissolved away (confirmed with a CT), it was gone. But I still did the additional seven weeks of chemo and 35 daily rads....
It's always your choice and your decision....one that you'll live with.
Best,
John0 -
too many variables with a "PET"Skiffin16 said:Same As Joe
Not something that I was willing to take a lesser degree of success on given a choice....
In the middle of treatment after nine weeks of chemo and having my tonsils taken out. The tumor that I had as a secondary dissolved away (confirmed with a CT), it was gone. But I still did the additional seven weeks of chemo and 35 daily rads....
It's always your choice and your decision....one that you'll live with.
Best,
John
and I certainly wouldn't base a treatment decision solely on the test result. From reading your other post my assumption is that you had a good surgery with clear margins on the tonsil and have no other spread at the moment?
Things to consider:
(1) I remember my Oncologist telling me that she classified everyone as "metastisized" as she really had no way of knowing. So your diagnosis is a best guess at best!
(2) The PET is not a 100% accurate test as it is wrong about 25% of the time in either direction.
(3) The PET has a 9mm size limit, that is it cannot find stuff much smaller than 9mm.0 -
Flip a coin!Skiffin16 said:Same As Joe
Not something that I was willing to take a lesser degree of success on given a choice....
In the middle of treatment after nine weeks of chemo and having my tonsils taken out. The tumor that I had as a secondary dissolved away (confirmed with a CT), it was gone. But I still did the additional seven weeks of chemo and 35 daily rads....
It's always your choice and your decision....one that you'll live with.
Best,
John
I can't add more than what was already said. I was on the fence about getting chemo. My initial doctor only wanted to do radiation. The 2nd and 3rd opinions wanted both chemo and radiation. In the end it was whether or not I COULD LIVE WITH MY DECISION. If the cancer comes back and I didn't do the chemo; then I would have been depressed beating myself up for not going with what is recommended. If your a strong person and can take the odds no matter what then don,t do anything a just wait and see; but if you can;t live with the odds then get the treatment. Maybe even just the radiation; which isn't as bad without the chemo.. In the end it's up! Get with your friends and family and maybe put a vote in a hat.....but in the end I think your mind is already made up it's justing having the guts to deal with it. NO Mater what this whole deal SUCKS ****; but we are here and have to learn to deal with it! Good Luck!!
Charles
P.S. My Radiation Doc thinks that new trials studies will show that just radiation and no chemo will be needed for HPV+16 tumors!!0 -
Joel4
You should share a email to Joel4. He didn't get chemo or rads!!! He was unknown primary too!!!!0 -
BkanterPam M said:Congrats
Always great to hear when someone gets a clean scan - even if it's in the middle of treatment. As for whether or not to continue treatment - it's a tough decision to make for many - good luck.
From another post you made, I gather you have problems with where the C&R will take you. Understandable. Thing is, you know what it takes to be most certain that you've done all you can to get rid of the C, and that is to finish the treatment your Dr. advises. Ain't a one of us like where treatment took us, but we went there. Suppose an optio would be to monitor it with the scans, but there's always the chance the C isn't gone, and it'll lead to mets where you will wish you had bit the bullet and finished treatment, because the problem will be far more extreme. It's your choice.
kcass0 -
Look DownKent Cass said:Bkanter
From another post you made, I gather you have problems with where the C&R will take you. Understandable. Thing is, you know what it takes to be most certain that you've done all you can to get rid of the C, and that is to finish the treatment your Dr. advises. Ain't a one of us like where treatment took us, but we went there. Suppose an optio would be to monitor it with the scans, but there's always the chance the C isn't gone, and it'll lead to mets where you will wish you had bit the bullet and finished treatment, because the problem will be far more extreme. It's your choice.
kcass
A good number of us made the same arguments a few weeks ago in a thread you will find below about three inches. It is called "To radiate or not to radiate" and it is a pretty complete and reasoned argument in all directions.
Perhaps this should be turned into a Super-Thread like "How to make a decision about radiation or not".
My opinion, of course, was to treat the thing and not let it come back again. But it will be your decision. Doug0 -
DougGoalie said:Look Down
A good number of us made the same arguments a few weeks ago in a thread you will find below about three inches. It is called "To radiate or not to radiate" and it is a pretty complete and reasoned argument in all directions.
Perhaps this should be turned into a Super-Thread like "How to make a decision about radiation or not".
My opinion, of course, was to treat the thing and not let it come back again. But it will be your decision. Doug
I can do that. I will work on it tonight, but after Castle. I don't want to be distracted watching 'Rick and Beckett'.
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Nothing to see hereGoalie said:Look Down
A good number of us made the same arguments a few weeks ago in a thread you will find below about three inches. It is called "To radiate or not to radiate" and it is a pretty complete and reasoned argument in all directions.
Perhaps this should be turned into a Super-Thread like "How to make a decision about radiation or not".
My opinion, of course, was to treat the thing and not let it come back again. But it will be your decision. Doug
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Chemo / Radiation
I have a different spin on this I guess than most people.
My tumors are massive and in various locations; some of which are inoperable but reachable with radiation.
That said, there is one location that is a no-win situation for me. I currently have tumors around my optic nerve and optic nerve chiasm. I had radiation around my optic nerve in 1996 and the tumors still came back there. They are now not able to be safely radiated due to the fact that I "maxed out" in that area before.
The doctors do however, want me to undergo another set of 30 traditional radiation treatments and after much discussion with my husband; we have decided not to do it.
It may sound crazy but I assure you it is not. I am a person about quality of time vs quantity of time. If I have the radiation I will definitely lose my vision. I've already lost most of my hearing and I am not about to become solely dependent on someone else to live my life in a severely compromised manner. The treatment (post-surgery) of 1996 also almost totally destroyed my hypothalmus, pituitary and thyroid. Needless to say, I have "issues". Thus my (and my husband's) decision regarding no more radiation.
Believe it or not, the doctors are starting to agree with me. They understand my decision about Quality vs. Quanity and I have their 100% support in this. I wish I had my extended family (parents, siblings, etc.) My children are in complete agreement with me and I spend as much time as I can with them and my 5 beautiful granddaughters.
This is an individual decision; one which can not be made lightly. But the side effects of the previous radiation are just now showing up 15 years later (right on time according to the radiologist) and I have been told that there will probably be more. I am not anxious to complicate the situation with more radiation.
Please remember though that every patient is unique and will not always have issues with radiation like others do.0 -
Yespalmyrafan said:Chemo / Radiation
I have a different spin on this I guess than most people.
My tumors are massive and in various locations; some of which are inoperable but reachable with radiation.
That said, there is one location that is a no-win situation for me. I currently have tumors around my optic nerve and optic nerve chiasm. I had radiation around my optic nerve in 1996 and the tumors still came back there. They are now not able to be safely radiated due to the fact that I "maxed out" in that area before.
The doctors do however, want me to undergo another set of 30 traditional radiation treatments and after much discussion with my husband; we have decided not to do it.
It may sound crazy but I assure you it is not. I am a person about quality of time vs quantity of time. If I have the radiation I will definitely lose my vision. I've already lost most of my hearing and I am not about to become solely dependent on someone else to live my life in a severely compromised manner. The treatment (post-surgery) of 1996 also almost totally destroyed my hypothalmus, pituitary and thyroid. Needless to say, I have "issues". Thus my (and my husband's) decision regarding no more radiation.
Believe it or not, the doctors are starting to agree with me. They understand my decision about Quality vs. Quanity and I have their 100% support in this. I wish I had my extended family (parents, siblings, etc.) My children are in complete agreement with me and I spend as much time as I can with them and my 5 beautiful granddaughters.
This is an individual decision; one which can not be made lightly. But the side effects of the previous radiation are just now showing up 15 years later (right on time according to the radiologist) and I have been told that there will probably be more. I am not anxious to complicate the situation with more radiation.
Please remember though that every patient is unique and will not always have issues with radiation like others do.
Indeed, there may come a time, and does all to frequently, when the quality v quantity becomes a substantive issue. I saw this with my mom, as many-years-old breast cancer suddenly seemed to appear in her brain.
She tried to fight it, this metastasis to the brain, but ultimately decided that it was no longer worth it, and her decision was one that I really could not argue with, just as I cannot argue with yours. There does indeed come a time, sadly, for some of us, when that is the last issue remaining.
I got the sense from the original post that this was not the case with this individual and if my assumption was incorrect, I stand corrected.
I wish you the best and hope that your time remaining is of the highest quality, that you are surrounded by family, friends and other loved ones, doing what you most want to do.
Take care,
Joe0 -
??Delayed side effects of Radiation??palmyrafan said:Chemo / Radiation
I have a different spin on this I guess than most people.
My tumors are massive and in various locations; some of which are inoperable but reachable with radiation.
That said, there is one location that is a no-win situation for me. I currently have tumors around my optic nerve and optic nerve chiasm. I had radiation around my optic nerve in 1996 and the tumors still came back there. They are now not able to be safely radiated due to the fact that I "maxed out" in that area before.
The doctors do however, want me to undergo another set of 30 traditional radiation treatments and after much discussion with my husband; we have decided not to do it.
It may sound crazy but I assure you it is not. I am a person about quality of time vs quantity of time. If I have the radiation I will definitely lose my vision. I've already lost most of my hearing and I am not about to become solely dependent on someone else to live my life in a severely compromised manner. The treatment (post-surgery) of 1996 also almost totally destroyed my hypothalmus, pituitary and thyroid. Needless to say, I have "issues". Thus my (and my husband's) decision regarding no more radiation.
Believe it or not, the doctors are starting to agree with me. They understand my decision about Quality vs. Quanity and I have their 100% support in this. I wish I had my extended family (parents, siblings, etc.) My children are in complete agreement with me and I spend as much time as I can with them and my 5 beautiful granddaughters.
This is an individual decision; one which can not be made lightly. But the side effects of the previous radiation are just now showing up 15 years later (right on time according to the radiologist) and I have been told that there will probably be more. I am not anxious to complicate the situation with more radiation.
Please remember though that every patient is unique and will not always have issues with radiation like others do.
What are the delayed side effects of radiation showing up 15 years later?
I thought we were all done with radiation side effects when recovered from initial radiation?
Thanks
Stacey0 -
Possibilitystaceya said:??Delayed side effects of Radiation??
What are the delayed side effects of radiation showing up 15 years later?
I thought we were all done with radiation side effects when recovered from initial radiation?
Thanks
Stacey
Well, the major would probably be the possibility of a secondary cancer....
They should have mentioned that or made you aware somewhere during your pretreatment documentation or orientation...
Of course there are other's not as life threatening such as the possibility of destroying your thyroid. Degradation of blood flow to your lower jaw bone, leading to many things most have been mentioned on here in the past.
JG0 -
Delayed, Indeedstaceya said:??Delayed side effects of Radiation??
What are the delayed side effects of radiation showing up 15 years later?
I thought we were all done with radiation side effects when recovered from initial radiation?
Thanks
Stacey
Stacey,
I'm with you - side effects starting 15 years out - man! I knew about the possibilities of permanent dry mouth, decreased blood flow, impaired thyroid (my prescription is waiting for me at the drug store), cavities and potential cancer, but wow - after 15 years - what a blow.0 -
15 yearsPam M said:Delayed, Indeed
Stacey,
I'm with you - side effects starting 15 years out - man! I knew about the possibilities of permanent dry mouth, decreased blood flow, impaired thyroid (my prescription is waiting for me at the drug store), cavities and potential cancer, but wow - after 15 years - what a blow.
I will be happy if I get to 15 years out.0 -
Sisweetblood22 said:15 years
I will be happy if I get to 15 years out.
15 years will be awesome!0 -
Dittosweetblood22 said:15 years
I will be happy if I get to 15 years out.
Got to take care of the short term before worrying about the long term side effects....
JG0 -
Delayed Side Effectsstaceya said:??Delayed side effects of Radiation??
What are the delayed side effects of radiation showing up 15 years later?
I thought we were all done with radiation side effects when recovered from initial radiation?
Thanks
Stacey
For me, the delayed side effects are tied directly to the location of the radiation; which for me was primarily the hypothalmus. I was on 34 at the time, but I immediately went through menopause following radiation therapy.
Fast forward to this year, and the side effects started snowballing. We discovered that my adrenal glands were underperforming, my thyroid was underperforming, I have developed photo phobia (sensitivity to different lighting conditions) and I have developed a serious facial tic in the right side of my face, usually brought on by fatigue. These have all shown up in the last 2 months. It was difficult to diagnose and required 2 separate hospital stays of 5 days each while the doctors scrambled to discover what was truly going on.
My hearing is also intermittent due to the tumors that are in my eustacian tube. I never know when I will be able to hear.
The doctors are also keeping an eye out for epileptic seizures which they said could possibly be an issue for me.
Right now, I am on prednisone, synthroid and I have special glasses with a prism and dark lenses to help with the photophobia. I am also getting new tubes in my ears and a proper hearing aid to help with the hearing.
As for delayed side-effects, we were told that I would have some, but the doctors weren't sure at the time what they would be. We feel Blessed that I have not become epileptic and at this time, the doctors, while keeping an eye on me, aren't too concerned about that either.0 -
Radiation Relatedpalmyrafan said:Delayed Side Effects
For me, the delayed side effects are tied directly to the location of the radiation; which for me was primarily the hypothalmus. I was on 34 at the time, but I immediately went through menopause following radiation therapy.
Fast forward to this year, and the side effects started snowballing. We discovered that my adrenal glands were underperforming, my thyroid was underperforming, I have developed photo phobia (sensitivity to different lighting conditions) and I have developed a serious facial tic in the right side of my face, usually brought on by fatigue. These have all shown up in the last 2 months. It was difficult to diagnose and required 2 separate hospital stays of 5 days each while the doctors scrambled to discover what was truly going on.
My hearing is also intermittent due to the tumors that are in my eustacian tube. I never know when I will be able to hear.
The doctors are also keeping an eye out for epileptic seizures which they said could possibly be an issue for me.
Right now, I am on prednisone, synthroid and I have special glasses with a prism and dark lenses to help with the photophobia. I am also getting new tubes in my ears and a proper hearing aid to help with the hearing.
As for delayed side-effects, we were told that I would have some, but the doctors weren't sure at the time what they would be. We feel Blessed that I have not become epileptic and at this time, the doctors, while keeping an eye on me, aren't too concerned about that either.
Not at all to dismiss your ordeal....but, how do they actually know that all of the effects that you are having were caused by the radiation?
I know once I reached 40, I started having differeing issues which were just age or heriditarily related. Now that I'm 57, I have even more issues, but those aren't that uncommon in persons my age with no cancer or radiation in their backgrounds.
I know that radiation to the H&N can cause Thyroid damage, but usually that shows up within the first few years.
I'm no medical professional by any means, and I'm not trying to second guess any of you or your MD's concerns....just curious what or how the effects were determined to be related to the radiation you had 15 years ago?
Thoughts & Prayers,
John0
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