has anyone else experienced this??

BudStamm

While talking to my radiation doctor about being fitted for my maks ( I have two one for rad and one for chemo) I found out I will be getting radiation treatments on both sides of my neck even though I only had cancer on the right side of my neck. He said its just precautionary....nothing to worry about. Nothing to worry about?....its not his neck...lol

After first having surgery to remove My right tonsil and removal of lymph nodes on the right side of my neck now finding out I am getting a radiation treatments on both side of neck I am a bit surprised as I have never read any posts of people getting radiation on both sides of their neck especially when they havent tested postive on the other side (my left side)...radiation just because??

Skiffin16

Very Common...

I had STGIII Toncil Cancer SCC HPV+, also right side and a lymphnode...

I had radiation on both sides... somewhere in the range of 6,000 rads on the right side and less on the left side. But I didn't really notice the difference..

Same amount of rotations of the IMRT machine, and same time frame and number of zaps, pops, and sizzles...

Many on here also had rads to both sides, even though Dx onlt on one side..

 

Now what's uncommon to me in something you said..., I have never heard of anyone having a mask for chemo...?

 

Best,

John

CivilMatt

not to worry

Bud,

I had cancer on left side and had treatment to both sides and all around, kind of like a good sprinkler.

I had 3 masks, one for the ride home (just kidding).

Matt

BudStamm

Skiffin16 said:

Very Common...

I had STGIII Toncil Cancer SCC HPV+, also right side and a lymphnode...

I had radiation on both sides... somewhere in the range of 6,000 rads on the right side and less on the left side. But I didn't really notice the difference..

Same amount of rotations of the IMRT machine, and same time frame and number of zaps, pops, and sizzles...

Many on here also had rads to both sides, even though Dx onlt on one side..

 

Now what's uncommon to me in something you said..., I have never heard of anyone having a mask for chemo...?

 

Best,

John

no mask for chemo

John....the mask is for My radiation I was just told about both sides of my neck being radiated the day My mask was being fitted which also was the day I had My first chemo treatment....they all just happened on the same day.....

 

Sorry I did not make myself clear

BudStamm

CivilMatt said:

not to worry

Bud,

I had cancer on left side and had treatment to both sides and all around, kind of like a good sprinkler.

I had 3 masks, one for the ride home (just kidding).

Matt

lol....

Matt....some have said I should wear a mask all the time....not to scare the kids.....lol

Sailor123

Hi Bud:
I think its standard

Hi Bud:

I think its standard to have it on both sides.  Its also STANDARD to give every person despite the size of tumor, age, health etc. the same number of rads. (33)

It is a cookie cutter approach.  

If I could go back I would have stopped at 25 rads.  The doctors don't know how many rounds you need to kill the tumor so they give everyone the maximum dose and as you will learn most of the long term damage we sustain is from the radiation.  Many decisions are made in haste as we all want the cancer expelled as quickly as possible.  I wanted to quit after 25 but my husband strong armed me into continuing.  He was afraid for me but looking back, I should have listened to my instincts.  On the other hand, things turned out pretty well for me.  I don't have ANY taste and saliva production is low but aside from that I'm thriving for sure.

Its a judgement call, but there is no question that your personal cirmumstances are not being weighed in the treatment approach.  We all were given the same recipe for success.  2 or 3 chemos, 33 rads, diet of ensure/jevity.

Some of us had tumors 1/3 the size of others, but the recipe is always the same.

These things are tough to call.  I can only tell you my personal stance.  Most importantly make sure you get EXCELLENT nutrition and plenty of water and rest through your treatment.  Thats really the most we can do as we know so little about this process when we begin it.

Its so much to take in, but you will get there.  You don't have to know everything going in.  There are lots of helpful people here to answer your questions.  

I wrote a short piece about my experience under expressions.  You might enjoy it.  

Shirley

debbiejeanne

welcome Bud, sorry you need

welcome Bud, sorry you need to be here.  i have nothing to add, just wanted to welcome you to our family.  we will be here to cheer you on as you go thru tx and here to celebrate with you when you finish!!

God bless you,

dj

Skiffin16

BudStamm said:

no mask for chemo

John....the mask is for My radiation I was just told about both sides of my neck being radiated the day My mask was being fitted which also was the day I had My first chemo treatment....they all just happened on the same day.....

 

Sorry I did not make myself clear

Ahhh...

No problem...., you meant you have two MD's.. I did also.. Well actually three including the ENT that Dx me, and also took the tonsils out. I had a team of MD's.. rads, onco, and ENT..

Welcome to the club..., hang on for the ride..

JG

phrannie51

Sailor123 said:

Hi Bud:
I think its standard

Hi Bud:

I think its standard to have it on both sides.  Its also STANDARD to give every person despite the size of tumor, age, health etc. the same number of rads. (33)

It is a cookie cutter approach.  

If I could go back I would have stopped at 25 rads.  The doctors don't know how many rounds you need to kill the tumor so they give everyone the maximum dose and as you will learn most of the long term damage we sustain is from the radiation.  Many decisions are made in haste as we all want the cancer expelled as quickly as possible.  I wanted to quit after 25 but my husband strong armed me into continuing.  He was afraid for me but looking back, I should have listened to my instincts.  On the other hand, things turned out pretty well for me.  I don't have ANY taste and saliva production is low but aside from that I'm thriving for sure.

Its a judgement call, but there is no question that your personal cirmumstances are not being weighed in the treatment approach.  We all were given the same recipe for success.  2 or 3 chemos, 33 rads, diet of ensure/jevity.

Some of us had tumors 1/3 the size of others, but the recipe is always the same.

These things are tough to call.  I can only tell you my personal stance.  Most importantly make sure you get EXCELLENT nutrition and plenty of water and rest through your treatment.  Thats really the most we can do as we know so little about this process when we begin it.

Its so much to take in, but you will get there.  You don't have to know everything going in.  There are lots of helpful people here to answer your questions.  

I wrote a short piece about my experience under expressions.  You might enjoy it.  

Shirley

I had 35 rads....

and tho the cancer was on the right side, they did both sides of my neck.....I had NPC, John (Skiffen) had tonsil, Matt had BOT....and it appears "both sides" must be some what standard for the rads. 

Shirley....when they say healing takes time....they aren't kidding.  I can't believe how much better my taste buds are now than they were 6 months ago....and I'm about 2 1/2 years out.....so the improvement keeps happening...it's just slow.

p

MrsBD

Both sides

My tumor was base of tongue, left side. I felt a hard lymph node on that side , but a PET scan picked up activity on the other side as well. Radiation was to both sides. I have a PowerPoint for chemo, not a mask like I had for radiation. My thoughts will be with you as you start the next phase of your treatment. Oops. Power Port. Stupid Autocorrect! 

Skiffin16

Sailor123 said:

Hi Bud:
I think its standard

Hi Bud:

I think its standard to have it on both sides.  Its also STANDARD to give every person despite the size of tumor, age, health etc. the same number of rads. (33)

It is a cookie cutter approach.  

If I could go back I would have stopped at 25 rads.  The doctors don't know how many rounds you need to kill the tumor so they give everyone the maximum dose and as you will learn most of the long term damage we sustain is from the radiation.  Many decisions are made in haste as we all want the cancer expelled as quickly as possible.  I wanted to quit after 25 but my husband strong armed me into continuing.  He was afraid for me but looking back, I should have listened to my instincts.  On the other hand, things turned out pretty well for me.  I don't have ANY taste and saliva production is low but aside from that I'm thriving for sure.

Its a judgement call, but there is no question that your personal cirmumstances are not being weighed in the treatment approach.  We all were given the same recipe for success.  2 or 3 chemos, 33 rads, diet of ensure/jevity.

Some of us had tumors 1/3 the size of others, but the recipe is always the same.

These things are tough to call.  I can only tell you my personal stance.  Most importantly make sure you get EXCELLENT nutrition and plenty of water and rest through your treatment.  Thats really the most we can do as we know so little about this process when we begin it.

Its so much to take in, but you will get there.  You don't have to know everything going in.  There are lots of helpful people here to answer your questions.  

I wrote a short piece about my experience under expressions.  You might enjoy it.  

Shirley

Loose Standard...

Actually, I think the standard is pretty loose....

Most on here have had a standard of 35 rads.., those that could tolerate the full course.. Most have, but a few needed to switch to a different plan.

Some facilities give less, not many more. Though I have seen a few that had less days, but doubled up rads sessions...

Same with chemo.., some have had no chemo, some one, two, three and more.., myself I had four.

The protocul that I had back a few years ago, several on here had the exact same, some less, and a few with different types of chemo or Erbitux..

There's one thing that is standard.., we all (or most) end up having one or three Tx plans.. Surgery, chemo and/or rads.., or some combination of the three.

As for you not having your taste back yet Shirley.., It took all of two plus years for me to completely get my taste back and nearly all saliva.. Matt is three years out and still seeing some improvement.. I'd be willing to venture, yours will continue to improve also...

its easy to second guess Tx once finished and successfully completed. Who knows the actual amount of Tx each of us really need. But the cookie cutter approach is one that has a fairly proven track record. As can be seen from the many survivors just on this site.

its rough for sure, and Im glad for every minute that I endured to be in the place that I'm at  

Thoughts, prayers and good vibes your way..

John

jackflash22

Rads

I had rads on my left side, no chemo, I thought the Rays hit the Cancer on affected side and carried on through so you get weaker ones on the other side. It seems ages ago now since rads and at the time I didn't want to listen. It may be I got regular dosage on the right side and weaker on the left. It's strange but I can't remember a lot about my dissection or rads. I know I was scared of the mask but got used to it and the treatment went faster than I thought it would, I had 30 sessions 5 days a week. I didn't have mouth sores but had mild burns to the neck, I lost my taste buds, later side effects were deafness, damaged thyroid, complete stricture to the throat and a damaged droopy lip and shoulder damage from op. Most things haven't bothered me except the tube feeding, I'm intolerant to formulas and have a painful bloated stomach as soon as I feed, which stops me doing normal activities. I've just had my throat opened and as soon as I can swallow more than water I'll go on to soups and smoothies. I wanted to go on to real food but the hospital said no, it reckoned I wouldn't be able to guarantee enough calories. I live at the moment on 1500 calories ...5 bottles of vital 1.5. I've lost nearly 3 stone in 18 months.....

Ron Silver

cancer on one side.  Radition

cancer on one side.  Radition on both.  Ditto to the treatment.  Seven weeks of chemo (1x per week) and rads (35).  The results on the studies keep coming out.  HPV+ means 80+% 5 year survival assuming no tobacco use.  Prior tobacco use-stats  not good.