Low Dose v. Regular Dose Radiation

big G

BeagleDad said:

Thank you

i UNDERSTAND!!!   I had a HORRIBLE time after TORS!!!!   I am slated for 60/54 but radiation oncologist said I am going to be getting zapped bilaterally...I imagine this is a preventative measure as I only had my cancer on one side.  But then my TORS was only on left side.  I'll reserve judgement until after treatment, but at this point I am not so sure I would recommend the TORS.  The whole reason we went that direction was to (hopefully) avoid chemo/radiation.  Instead we got to deal with BOTH!  Had I started chemo/rads weeks ago I would be almost done today.  I have a Gtube insertion now since they had left the NG tube in after TORS.  Not using it as of yet, but expect to use it some during treatment.  My swallowing is mostly back now post TORS but still cannot consider fully solid foods.  
I have become very familiar with my Vitamix and am enjoying several shake concoctions.  I expect to use this alot during tx.  I hope I am as "fortunat" as your hubby having such limited bad side effects.  I do not look forward to losing my taste, and certainly not excited about lack of saliva, but if those are the wrost of my side effects, I will consider myself fortunate.  Many that have gone before me have had it much worse.  And after that post TORS pain, I feel like I can weather anything!  
Funny you mentionend one hour at a time .... I remember those late ngihts/early mornings post-TORS when I was existing second by second minute by minute just waiting for the next hour to strike.  That was truly a horrible period in my life.  I will honestly have a hard time recommending TORS to anyone in the future....on the upside... most of my cancer is in some hazardous waste bin dying on its own now rather than living in my neck.  So there is that.
Thank you for your words and support..I start treatment first week in January.  Not excited but looking forward to getting my 33 visits over and done with and moving on toward healing.  

Don (Beagledad)

Chemo/radiation

Hello Beagle dad, I was reading your post about the chemo/rads after the TORS. I was just curious was the chemo because of the path report I know I read you were HPV+?

Yes the TORS was painful but I would choose the same thing again. I also had 33 rad tx but did not have chemo.

BeagleDad

big G said:

Chemo/radiation

Hello Beagle dad, I was reading your post about the chemo/rads after the TORS. I was just curious was the chemo because of the path report I know I read you were HPV+?

Yes the TORS was painful but I would choose the same thing again. I also had 33 rad tx but did not have chemo.

Not sure why the chermo.  The oncologist told me even before TORS that he was going to do "light" chemo with low dose radiation to kill off any wayward cancer cells that MAY exist.  He said the chemo is going to be so light that my main side effect wil be having to pee a lot.  All that was before the path report from post surgery (which found I had positive carcinoma in my deep margin).  So I am presuming the chemo is there to merely assist the radiation.  33 treatments for you, too, eh?  What was your levels?  Radiation doc said mine will be 60/54 bilaterally ..even though primary was just on left side.  Again, I am assuming preventative or speculatory.  

One piece of advice I read over and over again onthis site was to trsut the care team and go with what they say.  So I am not arguing it, butgonna go through it.  The very last thing I want is any repeat of this crap.  So if I have to usffer a bit now to avoid that, I believe I will find it worthwhile.  

But, MAN, that TORS recovery (still in process) .... yeach!  I'll have to wait till post tx to make my claim firmly, but as I sit here now, I still think Iwould have preferred to start chemo/rad back in early Nov and be done with it already rather than go through BOTH sets of pain/recovery.  We will see.  

Don(Beagledad)

ERomanO

BeagleDad said:

Thank you

i UNDERSTAND!!!   I had a HORRIBLE time after TORS!!!!   I am slated for 60/54 but radiation oncologist said I am going to be getting zapped bilaterally...I imagine this is a preventative measure as I only had my cancer on one side.  But then my TORS was only on left side.  I'll reserve judgement until after treatment, but at this point I am not so sure I would recommend the TORS.  The whole reason we went that direction was to (hopefully) avoid chemo/radiation.  Instead we got to deal with BOTH!  Had I started chemo/rads weeks ago I would be almost done today.  I have a Gtube insertion now since they had left the NG tube in after TORS.  Not using it as of yet, but expect to use it some during treatment.  My swallowing is mostly back now post TORS but still cannot consider fully solid foods.  
I have become very familiar with my Vitamix and am enjoying several shake concoctions.  I expect to use this alot during tx.  I hope I am as "fortunat" as your hubby having such limited bad side effects.  I do not look forward to losing my taste, and certainly not excited about lack of saliva, but if those are the wrost of my side effects, I will consider myself fortunate.  Many that have gone before me have had it much worse.  And after that post TORS pain, I feel like I can weather anything!  
Funny you mentionend one hour at a time .... I remember those late ngihts/early mornings post-TORS when I was existing second by second minute by minute just waiting for the next hour to strike.  That was truly a horrible period in my life.  I will honestly have a hard time recommending TORS to anyone in the future....on the upside... most of my cancer is in some hazardous waste bin dying on its own now rather than living in my neck.  So there is that.
Thank you for your words and support..I start treatment first week in January.  Not excited but looking forward to getting my 33 visits over and done with and moving on toward healing.  

Don (Beagledad)

Pardon my ignorance, but what

Pardon my ignorance, but what does TORS stand for? Some sort of Robotic Surgery?  Sorry it was a bad experince and very sorry that you have to endure chmo and radiation anyway.  A friend of mine had recently been doagnosed with stage 1 colon cancer and said that chemo would likely not be necessary due to it being caught so early.  But when I checked up on him he said that the doctor removed 30% of his colon and 21 lymph nodes, and that he'd be getting chemo in Jan.  I remember thinking that avoiding chemo was wishful thinking on his part, and I don't know why his doctor even suggested it.  I think oncologists are going to err on the side of caution... period.

Hopefully your swallowing will be back to normal by the time you begin the chemo and radiation.  Just keep in mind that you should be well on your way to recovering with the arrival of spring.  That doesn't sound too bad, now does it? :-)

PipLily

ERomanO said:

Pardon my ignorance, but what

Pardon my ignorance, but what does TORS stand for? Some sort of Robotic Surgery?  Sorry it was a bad experince and very sorry that you have to endure chmo and radiation anyway.  A friend of mine had recently been doagnosed with stage 1 colon cancer and said that chemo would likely not be necessary due to it being caught so early.  But when I checked up on him he said that the doctor removed 30% of his colon and 21 lymph nodes, and that he'd be getting chemo in Jan.  I remember thinking that avoiding chemo was wishful thinking on his part, and I don't know why his doctor even suggested it.  I think oncologists are going to err on the side of caution... period.

Hopefully your swallowing will be back to normal by the time you begin the chemo and radiation.  Just keep in mind that you should be well on your way to recovering with the arrival of spring.  That doesn't sound too bad, now does it? :-)

You are far from ignorant!

 You are a great resource on this forum

It stands for “Trans-oral Robotic Surgery “. Less invasive than traditional surgical techniques. But not always an option, depending on location, tumor stage, etc. My husband had this, along with a bilateral neck dissection. 

BeagleDad

ERomanO said:

Pardon my ignorance, but what

Pardon my ignorance, but what does TORS stand for? Some sort of Robotic Surgery?  Sorry it was a bad experince and very sorry that you have to endure chmo and radiation anyway.  A friend of mine had recently been doagnosed with stage 1 colon cancer and said that chemo would likely not be necessary due to it being caught so early.  But when I checked up on him he said that the doctor removed 30% of his colon and 21 lymph nodes, and that he'd be getting chemo in Jan.  I remember thinking that avoiding chemo was wishful thinking on his part, and I don't know why his doctor even suggested it.  I think oncologists are going to err on the side of caution... period.

Hopefully your swallowing will be back to normal by the time you begin the chemo and radiation.  Just keep in mind that you should be well on your way to recovering with the arrival of spring.  That doesn't sound too bad, now does it? :-)

You got THAT right!  Yeah  TORS is where to surgeon uses a robo to get into places where their hands cannot fit.  The surgery itself was a cauterization, not a slice and dice.  So basically he burned my tonsil off.  The neck dissection was scalple-driven.  A little bit of everything for me. 
Yeah.... by mid Feb I should be done with rads, then the two week period I hear so much about after that and March things should start looking up.  2 months down two to go.

Don (Beagledad)

big G

BeagleDad said:

You got THAT right!  Yeah  TORS is where to surgeon uses a robo to get into places where their hands cannot fit.  The surgery itself was a cauterization, not a slice and dice.  So basically he burned my tonsil off.  The neck dissection was scalple-driven.  A little bit of everything for me. 
Yeah.... by mid Feb I should be done with rads, then the two week period I hear so much about after that and March things should start looking up.  2 months down two to go.

Don (Beagledad)

Beagle dad

Mine was bot primary to the right side with several right side positve nodes.The left side nodes were clear. No extranodal extension

I had clear margins after TORS. I received 33tx to the right side only @ 54gy and 60+to the bot site on the last 4tx. My team decided no chemo after clear margins and final path report.

 

big G

big G said:

Beagle dad

Mine was bot primary to the right side with several right side positve nodes.The left side nodes were clear. No extranodal extension

I had clear margins after TORS. I received 33tx to the right side only @ 54gy and 60+to the bot site on the last 4tx. My team decided no chemo after clear margins and final path report.

 

TORS

Eromano, TORS or robotic surgery (tiny hands controlled with a joy stick) were the difference for me being in surgery 2.5 hrs vs 12hrs if I had chosen the free flap. It also uses a laser to excise the tumor. Other wise they would have broken my jaw to be able to reach the bot site and then 7 days in ICU vs going home the next day. Also after much research many patients with TORS had positve outcomes with reoccurrance, survival rates,etc.

Every sitiuation stands on its on but just a few reasons why I chose TORS

ERomanO

big G said:

TORS

Eromano, TORS or robotic surgery (tiny hands controlled with a joy stick) were the difference for me being in surgery 2.5 hrs vs 12hrs if I had chosen the free flap. It also uses a laser to excise the tumor. Other wise they would have broken my jaw to be able to reach the bot site and then 7 days in ICU vs going home the next day. Also after much research many patients with TORS had positve outcomes with reoccurrance, survival rates,etc.

Every sitiuation stands on its on but just a few reasons why I chose TORS

The first ENT I saw while

The first ENT I saw while waiting for an official diagnosis seemed eager to go the surgery route.  But my team up at Cleveland Clinic chose to "put surgery in our back pocket" and I hope it stays there.

Mattie65

BeagleDad said:

Not sure why the chermo.  The oncologist told me even before TORS that he was going to do "light" chemo with low dose radiation to kill off any wayward cancer cells that MAY exist.  He said the chemo is going to be so light that my main side effect wil be having to pee a lot.  All that was before the path report from post surgery (which found I had positive carcinoma in my deep margin).  So I am presuming the chemo is there to merely assist the radiation.  33 treatments for you, too, eh?  What was your levels?  Radiation doc said mine will be 60/54 bilaterally ..even though primary was just on left side.  Again, I am assuming preventative or speculatory.  

One piece of advice I read over and over again onthis site was to trsut the care team and go with what they say.  So I am not arguing it, butgonna go through it.  The very last thing I want is any repeat of this crap.  So if I have to usffer a bit now to avoid that, I believe I will find it worthwhile.  

But, MAN, that TORS recovery (still in process) .... yeach!  I'll have to wait till post tx to make my claim firmly, but as I sit here now, I still think Iwould have preferred to start chemo/rad back in early Nov and be done with it already rather than go through BOTH sets of pain/recovery.  We will see.  

Don(Beagledad)

Not wrong to seek a second opinion

Trusting your care team is important. Nevertheless, I think it's not wrong to seek a second opinion.

I had surgery and recovery in one city, decided to have the radiation in another (my home town). In the first hospital, I was introduced to a radiation doctor who calculated a plan for me, even though I had said I wouldn't go through radiation at that place. Anyway, his plan was to give me 70/60 on the left side. Possibly also 60 on the right, but I'm not sure. In any case, I wasn't going to get the radiation treatment there.

When I introduced myself to the radiation oncologist at my local clinic, he said the dose they offered me at the first clinic was way too high. You see, there has been a lot of change in the way doses are administered, depending on HPV status, as well as other factors, including the radiation technique, of which there are quite a lot. I got OptiArc at the clinic where I was treated. It's a newer form that offers more precise targeting.

I also tried to get a clinic to check me for Proton therapy, because this might be, if available in a specific case, the least harmful alternative, but the only one available didn't do post-operative treatments, but only full ones.

In any case, getting a second opinion isn't bad at all. But once you chose your team, you better stick with it. That I'm absolutely convinced of.