TO Radiate or NOT Radiate... That is the ?????
All this being said... treatment is really kicking his ****. He is back in the hospital with a swollen abdomen and feeling very very weak. A 7 week Radiation Treatment with ERBITUX is going to be given starting on January 9 th (providing they get this intestinal issue taken care of). I am VERY concerned about my Dad receiving radiation because he is have a very difficult time as it is. His not exactly a picture of health... He is overweight and has diabetes. But his heart is strong and he has an amazing attitude. Even today he said "I just need to be paient and let everything work so I can get better".
How many people out there opted out of Radiation and why? I am having a hard time wrapping my head around the idea of radiation when the primary is unknown, and he is having good results with the upfront Chemo... Should we be asking for another PET scan? What should we be asking the doctors?
Thank you,
-Margaret
Comments
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Trust
You either trust your MD's the Medical Professionals, or you don't and get other opinions.
Cancer is not something to be played with..especially presuming since you mentioned he has areas on both sides of his neck. That would indicate to me a minimum of STGIII if not STGIV.
Radiation is more precise and concentrated to a specific area, namely both sides of the neck as you mentioned.
From my un-professional thoughts....
The chemo was for the unknown cancer cells (and known areas), the radiation is for the specifically known areas. The addition of Erbitux, compliments the radiation to do a better job at disrupting the cancer cell reproduction.
It's natural for you to be worried, your father sounds like he is receptive of doing what he needs to do and his MD's suggest for survival.
Best,
John0 -
Very Insightful!Skiffin16 said:Trust
You either trust your MD's the Medical Professionals, or you don't and get other opinions.
Cancer is not something to be played with..especially presuming since you mentioned he has areas on both sides of his neck. That would indicate to me a minimum of STGIII if not STGIV.
Radiation is more precise and concentrated to a specific area, namely both sides of the neck as you mentioned.
From my un-professional thoughts....
The chemo was for the unknown cancer cells (and known areas), the radiation is for the specifically known areas. The addition of Erbitux, compliments the radiation to do a better job at disrupting the cancer cell reproduction.
It's natural for you to be worried, your father sounds like he is receptive of doing what he needs to do and his MD's suggest for survival.
Best,
John
Thank you John!!! This is all very very overwhelming for my Mom and I. We have an amazing doctor who we trust (we got a second opinion from Dana-Farber and they said that the Doctor's plan is right on the money). It is just hard for me, with my non-medical brain to understand why the radiation is necessary when the primary is unknown. Especially because I am very concerned about the reaction. He has already been in the hospital twice, and we haven't gotten to the hardest part yet.
Thank you for your wonderful insight!
-Margaret0 -
Here are more threads on
Here are more threads on whether to radiate or not you may want to look at.
TO RADIATE OR NOT RADIATE that is the question
IF THEY CANNOT FIND THE PRIMARY TUMOR DO WE RADIATE?
Also towards the bottom of the Superthread, in the section with the contribution from members is a list of questions to ask the doctors contributed by daddysgirl that might be helpful.
HNC SUPERTHREAD
If the cancer is in his lymph nodes then I do not think I would risk not having radiation if he wants to survive. That's just my opinion. I was unknown primary. I had a CT Scan, PET, and exploratories looking for a primary. Had a neck dissection, my left salivary gland, the tumor, and 23 lymph nodes removed, 3 were cancerous. Had 30 rads. Treatment ended 5/15/09.0 -
Thank you!!! Great Threads!!!sweetblood22 said:Here are more threads on
Here are more threads on whether to radiate or not you may want to look at.
TO RADIATE OR NOT RADIATE that is the question
IF THEY CANNOT FIND THE PRIMARY TUMOR DO WE RADIATE?
Also towards the bottom of the Superthread, in the section with the contribution from members is a list of questions to ask the doctors contributed by daddysgirl that might be helpful.
HNC SUPERTHREAD
If the cancer is in his lymph nodes then I do not think I would risk not having radiation if he wants to survive. That's just my opinion. I was unknown primary. I had a CT Scan, PET, and exploratories looking for a primary. Had a neck dissection, my left salivary gland, the tumor, and 23 lymph nodes removed, 3 were cancerous. Had 30 rads. Treatment ended 5/15/09.
Thank you so much for posting the Threads... Got through the first two, now I am working on the Superthread! So insightful... I am starting to get a better understanding of this Cancer and why they need to do the treatment the way they do!
So much to learn is a short period of time!
Thank you again!0 -
You're welcome.Matisse20 said:Thank you!!! Great Threads!!!
Thank you so much for posting the Threads... Got through the first two, now I am working on the Superthread! So insightful... I am starting to get a better understanding of this Cancer and why they need to do the treatment the way they do!
So much to learn is a short period of time!
Thank you again!
You're welcome.0 -
Info HelpsMatisse20 said:Thank you!!! Great Threads!!!
Thank you so much for posting the Threads... Got through the first two, now I am working on the Superthread! So insightful... I am starting to get a better understanding of this Cancer and why they need to do the treatment the way they do!
So much to learn is a short period of time!
Thank you again!
Glad Sweetblood's threads are useful for you. For me, not having info makes a bad situation even more hard to bear.
I went into treatment as an obese, diabetic person - also with what I assumed to be a strong heart, since I'd never had any problems. I had a good attitude (most of the time), and came through treatment all right (even able to not go back on diabetes meds). His good attitude and loving support will really help him in this fight. Do well.0 -
Chemotherapy
Has never been shown to cure a a single squamous cell carcinoma. It is used as "induction" prior to definitive treatment like radiation. It will absolutely not cure his SCC. The radiation is mandatory; without it his disease will return.
Best regards
Pat0 -
Welcome MargaretMatisse20 said:Very Insightful!
Thank you John!!! This is all very very overwhelming for my Mom and I. We have an amazing doctor who we trust (we got a second opinion from Dana-Farber and they said that the Doctor's plan is right on the money). It is just hard for me, with my non-medical brain to understand why the radiation is necessary when the primary is unknown. Especially because I am very concerned about the reaction. He has already been in the hospital twice, and we haven't gotten to the hardest part yet.
Thank you for your wonderful insight!
-Margaret
Cancer definitely will give you a quick learning curve... I bascially went in thinking of pale, frail, no hair people eventually whithering away and dying.
That is deifnitely not the case these days.... I was amazed at the people in my chemo center. I'd see guys in there with laptops, 2 - 3 cell phones doing their business work all while receiving chemo....I was amzed to say the least...you'll learn quickly if you allow yourself.
I'm sorry if I sounded mean in my post above, I didn't intend for that...I'm just passionate about life.
As for hospitilization, I can only offer that when I was going through treatment;
(STGIII SCC Tonsils (primary), HPV+ and a Lymhnode (secondary) - January 2009, completed treatment June 2009. Sixteen weeks of four types of chemo, seven weeks of which were concurrent with daily radiation. Clean and clear on all scans since...)
That at least I always had comfort in the fact, that if something did happen or I became sick, whatever.
That I had more people looking at and over me than anyone could imagine. Usually always at or close to a facility. So I was in a situation that I could not recieve more attention than I was getting other than actually being admitted.
Even if admitted, think about it...you are in the ideal place, constantly monitored, immediate response to anything going on...how could it be any better than that...take comfort in that thought.
It's rough like you say, your dad sounds like a fighter. The humna body is definitely a fighter, you'd be amazed at the survivor instinct.
For some here it's often said that ireatment is actually harder on the caregivers than the patients.
I tend to agree, for me, I just did what the MD's prescribed (I also had complete faith and trust in them), and actually didn't consider the alternative. I was doing all that I could do, as were my MD's, the rest was up to Faith.
Thoughts and Prayers,
John0 -
Politely Disagreelongtermsurvivor said:Chemotherapy
Has never been shown to cure a a single squamous cell carcinoma. It is used as "induction" prior to definitive treatment like radiation. It will absolutely not cure his SCC. The radiation is mandatory; without it his disease will return.
Best regards
Pat
Pat, I know that your heart is in the right place...but, I'll have to politely disagree.
You can't definitively guarantee those statements, nobody can....
Radiation is not mandatory, and there is not a guarantee that cancer will return.
I do believe that your odds are better, but can't say there is any definite plan that always works. If so, they'd use that protocul for everyone.
At least in my opinion.....
Best,
John0 -
It's certainly a good idea at minimumSkiffin16 said:Politely Disagree
Pat, I know that your heart is in the right place...but, I'll have to politely disagree.
You can't definitively guarantee those statements, nobody can....
Radiation is not mandatory, and there is not a guarantee that cancer will return.
I do believe that your odds are better, but can't say there is any definite plan that always works. If so, they'd use that protocul for everyone.
At least in my opinion.....
Best,
John
Hi Margaret, sorry about your Dad's diagnosis and upcoming treatment but the main thing to keep in mind is that he will exit the other end of this treatment cycle with a good chance the disease likely cured. Pam M. answered some of the medical concerns, so assuming his physical condition and medical history permit, it comes down to a choice about success. Your looking at the problem from the wrong end. It isn't, "Can he withstand the treatment, it's can he live without at least trying it?" His best shot is to include radiation. Radiation has a proven track record of killing and death. We know that nuclear accidents kill from radiation. We know that nuclear bombs leave thousands dyning because of radiation fallout. We also know his cancer is not yet gone, only shrinking. There is nothing definitive with cancer since total control is never guaranteed. Radiation is not mandatory by definition, but is very prudent and standard protocol!0 -
It depends only on if you want to cure the cancerSkiffin16 said:Politely Disagree
Pat, I know that your heart is in the right place...but, I'll have to politely disagree.
You can't definitively guarantee those statements, nobody can....
Radiation is not mandatory, and there is not a guarantee that cancer will return.
I do believe that your odds are better, but can't say there is any definite plan that always works. If so, they'd use that protocul for everyone.
At least in my opinion.....
Best,
John
or merely prolong lifespan. There is a tremendous diffference between one or five year survival rate, and permanent cure. Chemotherapy is not an option by itself, if cure is the purpose of the treatment. It is, if prolonging life-span is the only objective. Let me restate the fact: chemotherapy ALONE has never been demonstrated to cure a single squamous carcinoma.
Pat0 -
so hard
it is so hard when everything is new to you and someone close is going thru it.
for me it comes down to positive mental attitude and it sure sounds like you dad has that and is more than willing to do what is needed.
PMA starts mostly with trusting your doctors, if you do not trust them find one/team that you will trust and go with their game plan. having a Positive Mental Attitude (PMA) i believe is 70-80% of kicking cancers butt.
unknown primary to me means they just can not find it. that primary only needs to be the size of a pin head, and that can not be found very easy.... so my thoughts are they just can not fine. in january it will be 16 years since i was told i had an unknown primary after they spent 3-4 hours looking for it. with Gods blessing i am able to type and share.
please take the time to check out and ask if they use tomotherapy for the radiation. it is the best equipment in my opinion to use for treatment. over the years i have learned and believe that radiation and chemo give the best chance of getting rid of the cancer. also talk to the nurses and doctors and make sure your dad gets IV fluids thru all the treatments, this might have to be done several times a week but being hydrated is huge and trust me he will not be able to drink enough fluids to keep him hydrated.
the worst side effect i understand with ERBITUX is rash that is on the upper body mostly. being over weight was good for me as i and as many others here have lost alot of weight thru treatment and recovery.
it was said in an earlier post or posts that it is harder on the caregivers... i totally agree as the survivor has mostly only one thing to do and that is take care of themselves.
prayers going out for you, your mother and your dad
john0 -
unknown Primaryfisrpotpe said:so hard
it is so hard when everything is new to you and someone close is going thru it.
for me it comes down to positive mental attitude and it sure sounds like you dad has that and is more than willing to do what is needed.
PMA starts mostly with trusting your doctors, if you do not trust them find one/team that you will trust and go with their game plan. having a Positive Mental Attitude (PMA) i believe is 70-80% of kicking cancers butt.
unknown primary to me means they just can not find it. that primary only needs to be the size of a pin head, and that can not be found very easy.... so my thoughts are they just can not fine. in january it will be 16 years since i was told i had an unknown primary after they spent 3-4 hours looking for it. with Gods blessing i am able to type and share.
please take the time to check out and ask if they use tomotherapy for the radiation. it is the best equipment in my opinion to use for treatment. over the years i have learned and believe that radiation and chemo give the best chance of getting rid of the cancer. also talk to the nurses and doctors and make sure your dad gets IV fluids thru all the treatments, this might have to be done several times a week but being hydrated is huge and trust me he will not be able to drink enough fluids to keep him hydrated.
the worst side effect i understand with ERBITUX is rash that is on the upper body mostly. being over weight was good for me as i and as many others here have lost alot of weight thru treatment and recovery.
it was said in an earlier post or posts that it is harder on the caregivers... i totally agree as the survivor has mostly only one thing to do and that is take care of themselves.
prayers going out for you, your mother and your dad
john
I was a 54-year old with NPC, unknown Primary in late-08. They even did a last-minute second biopsy and scoping trying to find it, or so I was told. And I got both chemo and rads, together, right from the get-go, with that chemo delivery being the most extreme dealt to any of us on this forum. Was told my first Onco visit that I had to get a PEG and Port, and would be on Morphine, if that helps you to understand the source I am. Treatment ended in 4/09, and was no cakewalk- but it's not a cakewalk for any of us, and my longterm side-effects are fewer than most on our forum. 4/09, Margaret, was my last rad.
It is my understanding, Margaret, that both chemo and rads are the standard for H&N, and typically only when there are complications is one or the other not included. You describe his C as "late SCC." I would think that the only way chemo, alone, is sufficient for dealing with the C is if that C is caught at the very earliest, and scarcely exists. The C has to be of a certain size before the PET will show it, you must realize. If it is in the lymph system, it could've spread to many places, with some more likely than others, and your Father's best shot at beating the C is- 1)go with your Dr's advice, as said Drs know best the specifics of your Dad's C; and, 2)error only on the side of the aggressive, because this is C.
That said, I must side with John on the SCC chemo issue, in that it is my understanding that the chemo is whole body, and not only stops the growth of where the minor spots of C has spread via the lymph system, but also eliminates it to the extent the body's defenses can take care of the rest- as it does with the many people who do not develop tumors, but do have C cells floating around in them. I know of a case via Mayos where SCC skin C was successfully treated with only chemo, though we of H&N are of a different SCC animal, also. STILL, I can't for the life of me imagine why anyone who could handle it would opt to only get chemo, so long as the rad Dr had places in his/her sights to zap with the rads. C is as serious as it gets, Margaret, and H&N C which wins the battle over the Patient is not a pretty sight.
Also, be advised that the Cisplatin and FU-5 does cause a lotta sickness, as is evidenced by some people who can't handle a third session. Could be your Dad's been thru the worst of it, as the rads, for the most part, only damages tissue with burning/soreness, and what results from that.
kcass
(Hint: if your Dr advises, and your Dad is cool with it- get the rads. You can always stop them when it gets a bit too much, if that happens)0 -
Rads,My opinion
Please learn the lasting side effects of radiation treatments and then let your dad make the decision.Sometimes quality over quanity can apply.I am not stating that is the case with your dad but I am 60 and can honestly say if I could go back 2 years I would skip the radiation and whatever that leads to so be it.That would be my decision for me and in no way is it meant as a guide for anyone.0 -
Chemo, Chemo and Rads
Good Morning Margaret,
In reading all the previous post it's obvious we all have our opinions on courses of treatment and how they affected us. In my case I had 3 infudions of cisplatin/taxotore/5fu, 1 infusion every 21 days, the next course of which I will finish this thursday was 39 rad treatments with 1 concurrent week of carboplatin. For me it was all doable, I guess what it boils down to is just as with our C diagnosis everyone is different and how we come thru and tolerate the treatments is different. I would say the major factors for me coming thru this is attitude, support of family and friends and trust in my doctors.I didn't have any issues with the radiation except for the loss of taste, the rad techs were great and will work with you. Ask questions at each doctors visit,tell them of any changes in your health, do your research , but keep in mind some of the stuff on the internet is "doom & gloom" and may not apply to your situation. As far as opting out of suggested treatments you may want to discuss with docs the pluses and minuses of doing so, I never questioned the treatment plan, after all they , the docs are the experts in this journey not me, yes I am the patient and have my rights. Your dad sounds like he has a good outlook and I wish him the best in whatever treatment option(s) he finally chooses.
Linda0
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