Treatment choice.

Skiffin16

navy261991 said:

Treatment Choice Reply
Tonsil Dad - I was diagnosed with stage 3 SCCA tonsilar cancer in Dec 10. Had a 4 CM tumor on the right tonsil and a 3 CM and !.5 CM on the right lymph nodes. No further speading to any remote sites. I saw 3 ENT docs who all recommended radiation and concommitant chemo rather than surgery. Their rationale was that surgery would have side effects including swallowing and talking impacts as well as visible effects from the neck dissection. However, the most important point was they all said that the radiation and chemo treatment has the best results. Of course rad/chemo has its own side effects; mucositis, dry mouth, salivary imbalance, possible dental problems and more. However, the main goal is to cure the cancer and rad/chemo appears to provide the best results. On this forum there is another thread about a drug that can be taken during treatment that is aimed at reducing the effect on salivary glands. Recommend you ask about it if you elect to go with rad/chem.

The other important factor for me in choosing treatment was who would perform it. My choice was between local doctors and hospitals in south Florida which were less than an hour away or a Comprehensive Cancer Center not as conveniently located. I chose Moffitt Cancer Center in Tampa which is over two hours away and meant that I would have to stay in Tampa during the week to get the Mon thru Fri radiation treatments. Of course this can cause you extra expenses for a place to stay; however most of the Comprehensive Cancer Centers have free lodging on their campus for the patient and their caregiver simply for the asking. My rationale for choosing Moffitt was the fact that they had more experience in my specific type of cancer than the local hospital alternatives. Moffitt treats 100's if not 1000's of head and neck patients a year while the local alternatives can't match that level of experience. For the IMRT radiation treatment it is particularly important to have a highly experienced team. Success depends not only on the radiation oncologist but also on his team of computer techicians and physicists that must accurately plan and implement the radiation treatment. In conclusion I'm very glad I chose Moffitt and believe it was a key factor in my successful results. Finished treatment in Mar 11; all clear for 9 months after 2 follow-up PET/CT scans.

Good luck and let us know how it goes. Prayers are with you.
Dave - navy261991

Navy Guy - Moffitt - Tampa
Hey Navy guy...LOL, USMC here.

Where are you located, Lakeland here, I had my treatment at Center for Cancer Care & Research Watson Clinc - Lakeland, it's affilliated with Moffitt.

Just a shout out, and wiching you further success.

Best,
John

Pam M

Welcome Tonsil Dad
It IS a tough decision. I really wanted surgery to remove my base of tongue tumor (my primary tumor was not huge - I was only stage four because I had spread to two nodes with one node very large). I wanted the cancer out ASAP. My doctors did not consider surgery an option, so we went with the chemo, more chemo and rads route in the hope of avoiding a radical modified neck dissection (one of my nodes resisted treatment, so I had to have the dissection later, but finally got clean scans with no surgery (other than biopies)on my tongue base. Two of my doctors compared the decision process to deciding to drive somewhere by car - there are very often different routes you can take to reach the same destination. Good luck with your process - I know making the decisions was a hard, stressful time for me.

Tonsil Dad

Pam M said:

Welcome Tonsil Dad
It IS a tough decision. I really wanted surgery to remove my base of tongue tumor (my primary tumor was not huge - I was only stage four because I had spread to two nodes with one node very large). I wanted the cancer out ASAP. My doctors did not consider surgery an option, so we went with the chemo, more chemo and rads route in the hope of avoiding a radical modified neck dissection (one of my nodes resisted treatment, so I had to have the dissection later, but finally got clean scans with no surgery (other than biopies)on my tongue base. Two of my doctors compared the decision process to deciding to drive somewhere by car - there are very often different routes you can take to reach the same destination. Good luck with your process - I know making the decisions was a hard, stressful time for me.

sorry
Thank you for all your reply's. You all sound very educated about everything. Well here's what is going on, I'm actually being seen by a Ent surgeon at University of Miami head and neck cancer hospital. As I said, he did blood all came back normal, CT scan looks like it is localized in the left tonsil and my PET scan came back all clear ( except for the left tonsil ) . Now I meet with the Radiologist on the 20th of December again from the U of M. It just seems to me that they are both wanting my business if you know what I mean, one wants me to have surgery and the other (when I see her) radiation. No one is really telling me anything, my primary Dr called me and I spoke with him and he told me to get an appointment with a regular medical oncologist so he will be able to help me with the treatment option from a neutral standpoint. Thank the lord this is a very slow growing tumor so it will buy me some time to get all my pieces of the puzzle in order and make the right choice of treatment what's best for me.

Thank you to everyone for your kind support and well wishes.

May God bless each and everyone of you,

Tonsil Dad

sweetblood22

Tonsil Dad said:

sorry
Thank you for all your reply's. You all sound very educated about everything. Well here's what is going on, I'm actually being seen by a Ent surgeon at University of Miami head and neck cancer hospital. As I said, he did blood all came back normal, CT scan looks like it is localized in the left tonsil and my PET scan came back all clear ( except for the left tonsil ) . Now I meet with the Radiologist on the 20th of December again from the U of M. It just seems to me that they are both wanting my business if you know what I mean, one wants me to have surgery and the other (when I see her) radiation. No one is really telling me anything, my primary Dr called me and I spoke with him and he told me to get an appointment with a regular medical oncologist so he will be able to help me with the treatment option from a neutral standpoint. Thank the lord this is a very slow growing tumor so it will buy me some time to get all my pieces of the puzzle in order and make the right choice of treatment what's best for me.

Thank you to everyone for your kind support and well wishes.

May God bless each and everyone of you,

Tonsil Dad

A second neutral opinion is a good idea
I went for three opinions, long story why, won't bore you. My hospital I was treated at, get have a tumor board when you get diagnosed, and they all meet together to come up with what they believe should be your treatment plan. Much better that way, than hearing conflicting info from each doctor. On my team was my ENT, my RO, my dentist, a Hematologist Onc, Gastro, and a nutritionist.

Skiffin16

Tonsil Dad said:

sorry
Thank you for all your reply's. You all sound very educated about everything. Well here's what is going on, I'm actually being seen by a Ent surgeon at University of Miami head and neck cancer hospital. As I said, he did blood all came back normal, CT scan looks like it is localized in the left tonsil and my PET scan came back all clear ( except for the left tonsil ) . Now I meet with the Radiologist on the 20th of December again from the U of M. It just seems to me that they are both wanting my business if you know what I mean, one wants me to have surgery and the other (when I see her) radiation. No one is really telling me anything, my primary Dr called me and I spoke with him and he told me to get an appointment with a regular medical oncologist so he will be able to help me with the treatment option from a neutral standpoint. Thank the lord this is a very slow growing tumor so it will buy me some time to get all my pieces of the puzzle in order and make the right choice of treatment what's best for me.

Thank you to everyone for your kind support and well wishes.

May God bless each and everyone of you,

Tonsil Dad

Chemo...
You new MD will suggest Chemo..., LOL...

Sorry, I know it's not a funny situation for you...

Hopefully, the new MD will make the best choice given the information and hopefully neutrality.

Best.
John

Bigfuzzydoug

Tonsil Dad said:

sorry
Thank you for all your reply's. You all sound very educated about everything. Well here's what is going on, I'm actually being seen by a Ent surgeon at University of Miami head and neck cancer hospital. As I said, he did blood all came back normal, CT scan looks like it is localized in the left tonsil and my PET scan came back all clear ( except for the left tonsil ) . Now I meet with the Radiologist on the 20th of December again from the U of M. It just seems to me that they are both wanting my business if you know what I mean, one wants me to have surgery and the other (when I see her) radiation. No one is really telling me anything, my primary Dr called me and I spoke with him and he told me to get an appointment with a regular medical oncologist so he will be able to help me with the treatment option from a neutral standpoint. Thank the lord this is a very slow growing tumor so it will buy me some time to get all my pieces of the puzzle in order and make the right choice of treatment what's best for me.

Thank you to everyone for your kind support and well wishes.

May God bless each and everyone of you,

Tonsil Dad

Some more to think about...
OK. That's better info you provided. Here are my thoughts based on the LITTLE INFORMATION I KNOW and are total SWAGs.

Of the three:

Surgery (TORS)
PROS: Less side-effects, faster recovery, less permanent effects, tonsils are easily removed and have been done in millions of kids. It leaves you with many other options in the future if God-forbid, you should need it.
CONS: No guarantees that you get all of it. PET and CT are only accurate to about 5mm. There could be neoplastic cells elsewhere. Usually surgery means removing lots of tissue to get very clean margins. They could easily pull both your tonsils, but how much more would they want to take and would it do any permanent damage? Once you yank it out, it can't be put back in.

RND - Why then even suggest this? An RND is usually reserved for removal of many if not all of the lymph nodes in the neck. This literally sounds "radical" and over the top for your case.

Radiation
PROS: Would most likely destroy any remote or straying cancer cells in the entire area. A better "guarantee" than surgery.
CONS: Side-effects during treatment are brutal. Tonsils are high up which means effecting your saliva, possibly teeth & gums and taste. Radiation to an area is a "one-shot deal". You can't get it again in that area of your body.

Chemotherapy - Reserved for T2+ cancers when there is a question or evidence of metastasis. The poison goes throughout your entire body. Doesn't sound like you.
.
.
So now you have to think about your lifestyle and risk factors. Do you use tobacco products? What's the liklihood of the cancer coming back due to your risk factors and lifestyle. It does weigh into the treatment choice.

Based on what you wrote and what you wrote alone. My 2 cents is:
Another CT & PET and a read from a different Radiologist to confirm that it's localized.
TORS to remove the tonsils (depending on how much additional tissue they want to take). (I would have done surgery as a first choice, but they would've removed an entire arytenoid which would have permanently destroyed my voice.)
Keep the "nuclear option" (radiation) in reserve for the future if necessary.

Good luck and keep us posted!

MarineE5

Adding more to your plate of knowledge
Tonsil Dad,

Doug and others gave you allot of information, and as you mentioned, each of the Specialist's want you to take their approach. As Doug gave good info and thought's, I will also, not saying mine are any better then the next, only that this is what I chose verses the options offered. In a reply earlier above, I mentioned the 3 options I had.

While I was seeing my Radiation Oncologist, he stated that he could take care of everything without me going thru the Surgery. This sounded tempting to me, but I really wanted the cancer tumor out of my body completely, so that if for some unknown reason 1 tiny cancer cell survived the radiation, that this wasn't going to start all over again. This is my thought only. I mentioned this to my Surgeon after meeting the Radiation Oncologist. He seemed to be upset for a split second on the words the Oncologist used. He said that he was there for me, no matter what I chose. He said he wanted me to have all options available to me and for me to make the choice.

What happened was the Surgery to remove the tumor which included part of my tongue to be removed also. Radical neck disection, followed by Radiation treatments. As I mentioned before, the Chemo was held in reserve in case I had a reaccurance. I had my surgery roughly 6-8 months before my Surgeon started using the robotic surgery method. I recently had a visit with him and he had students with him in the room. He mentioned that we go back 7 years and that I was a pre robotic operation patient, and I swear they looked at me as if I was a Dinosaur.

Allot of good points have been touched on. Pro's and Con's. My surgery was to remove the cancer and seek safe margins. The Radiation was to kill any stray cancer cells that might have remained. A PET Scan was done later to make sure that nothing was missed.

The most important thing in all of this is YOU. What YOU feel YOU need to do in order to beat this. All of us here can give our views and opinions, and the same can be said for the Doctors you visit, but it is YOU with the final decision.

My Best to You and Everyone Here

Tonsil Dad

MarineE5 said:

Adding more to your plate of knowledge
Tonsil Dad,

Doug and others gave you allot of information, and as you mentioned, each of the Specialist's want you to take their approach. As Doug gave good info and thought's, I will also, not saying mine are any better then the next, only that this is what I chose verses the options offered. In a reply earlier above, I mentioned the 3 options I had.

While I was seeing my Radiation Oncologist, he stated that he could take care of everything without me going thru the Surgery. This sounded tempting to me, but I really wanted the cancer tumor out of my body completely, so that if for some unknown reason 1 tiny cancer cell survived the radiation, that this wasn't going to start all over again. This is my thought only. I mentioned this to my Surgeon after meeting the Radiation Oncologist. He seemed to be upset for a split second on the words the Oncologist used. He said that he was there for me, no matter what I chose. He said he wanted me to have all options available to me and for me to make the choice.

What happened was the Surgery to remove the tumor which included part of my tongue to be removed also. Radical neck disection, followed by Radiation treatments. As I mentioned before, the Chemo was held in reserve in case I had a reaccurance. I had my surgery roughly 6-8 months before my Surgeon started using the robotic surgery method. I recently had a visit with him and he had students with him in the room. He mentioned that we go back 7 years and that I was a pre robotic operation patient, and I swear they looked at me as if I was a Dinosaur.

Allot of good points have been touched on. Pro's and Con's. My surgery was to remove the cancer and seek safe margins. The Radiation was to kill any stray cancer cells that might have remained. A PET Scan was done later to make sure that nothing was missed.

The most important thing in all of this is YOU. What YOU feel YOU need to do in order to beat this. All of us here can give our views and opinions, and the same can be said for the Doctors you visit, but it is YOU with the final decision.

My Best to You and Everyone Here

Update
Hi everyone,
Thanks for all of your imput. Well here goes I have a little bit more info today as I went to see the Radiation Oncologist.
The cancer is localized in the left tonsil I'm T20N0M the size is 3.0-1.7-3.8 so its pretty big. She told me about the treatment option only radiation IMRT and said I didn't need chemo. She told me all about the side effects what possibly could happen,but she was saying the same as my ENT Surgeon, that it is up to me to make the choice of which way I want to go, so really I'm still as I was before not knowing which option will be best. I have another consult on Jan 3rd with the ENT surgeon then its make your mind up time.

God Bless to all

Tonsil Dad

RogerRN43

Tonsil Dad said:

Update
Hi everyone,
Thanks for all of your imput. Well here goes I have a little bit more info today as I went to see the Radiation Oncologist.
The cancer is localized in the left tonsil I'm T20N0M the size is 3.0-1.7-3.8 so its pretty big. She told me about the treatment option only radiation IMRT and said I didn't need chemo. She told me all about the side effects what possibly could happen,but she was saying the same as my ENT Surgeon, that it is up to me to make the choice of which way I want to go, so really I'm still as I was before not knowing which option will be best. I have another consult on Jan 3rd with the ENT surgeon then its make your mind up time.

God Bless to all

Tonsil Dad

Grouping research together...
As I'm stuck homebound lately, I've scoured google about tonsil cancer and have read tons of relatively current journal articles ie; research and studies. I would choose TORS to get the best odds at removing primary tumor margins, then rads to destroy what can't be seen on the scans such as missed margins and any lymph involvement. If you are not hpv+, then chemo should really be in the mix, and induction chemo has been shown to add percentage points to survival. Even hpv+, I would do induction chemo and weekly chemo during rad for best prognosis.
Neck dissection can possibly be debilitating longterm, chronic pain, loss of trapezius muscle, lymphadema, etc. so I would avoid it, especially since you said the scan is negative for lymph involvement.
I'm no MD, but as an RN putting the best research together, that's what I would choose.
Strange how you don't have all the docs working as a team and deciding the best for you.

Tonsil Dad

RogerRN43 said:

Grouping research together...
As I'm stuck homebound lately, I've scoured google about tonsil cancer and have read tons of relatively current journal articles ie; research and studies. I would choose TORS to get the best odds at removing primary tumor margins, then rads to destroy what can't be seen on the scans such as missed margins and any lymph involvement. If you are not hpv+, then chemo should really be in the mix, and induction chemo has been shown to add percentage points to survival. Even hpv+, I would do induction chemo and weekly chemo during rad for best prognosis.
Neck dissection can possibly be debilitating longterm, chronic pain, loss of trapezius muscle, lymphadema, etc. so I would avoid it, especially since you said the scan is negative for lymph involvement.
I'm no MD, but as an RN putting the best research together, that's what I would choose.
Strange how you don't have all the docs working as a team and deciding the best for you.

Chose Radiation
Hi everyone, not been on here for a while so I'll let you know whats been going on.
I finally decided to go for radiation but first I have to get my teeth fixed. Two wisdom
Out tomorrow, next week my 3 crowns replaced and the week after my bridge replaced
Then a deep cleaning and then I'm all clear to go for radiation. It will then be almost
3 months since being diagnosed with toncil cancer before I start any treatment (crazy eh).
Last week the RO said 7 weeks 5 days A week for the treatment, so I will let you know how it goes.

May God bless each and everyone of you on here..

Tonsil Dad.

Tonsil Dad

RogerRN43 said:

Grouping research together...
As I'm stuck homebound lately, I've scoured google about tonsil cancer and have read tons of relatively current journal articles ie; research and studies. I would choose TORS to get the best odds at removing primary tumor margins, then rads to destroy what can't be seen on the scans such as missed margins and any lymph involvement. If you are not hpv+, then chemo should really be in the mix, and induction chemo has been shown to add percentage points to survival. Even hpv+, I would do induction chemo and weekly chemo during rad for best prognosis.
Neck dissection can possibly be debilitating longterm, chronic pain, loss of trapezius muscle, lymphadema, etc. so I would avoid it, especially since you said the scan is negative for lymph involvement.
I'm no MD, but as an RN putting the best research together, that's what I would choose.
Strange how you don't have all the docs working as a team and deciding the best for you.

Chose Radiation
Hi everyone, not been on here for a while so I'll let you know whats been going on.
I finally decided to go for radiation but first I have to get my teeth fixed. Two wisdom
Out tomorrow, next week my 3 crowns replaced and the week after my bridge replaced
Then a deep cleaning and then I'm all clear to go for radiation. It will then be almost
3 months since being diagnosed with toncil cancer before I start any treatment (crazy eh).
Last week the RO said 7 weeks 5 days A week for the treatment, so I will let you know how it goes.

May God bless each and everyone of you on here..

Tonsil Dad.

Skiffin16

Tonsil Dad said:

Chose Radiation
Hi everyone, not been on here for a while so I'll let you know whats been going on.
I finally decided to go for radiation but first I have to get my teeth fixed. Two wisdom
Out tomorrow, next week my 3 crowns replaced and the week after my bridge replaced
Then a deep cleaning and then I'm all clear to go for radiation. It will then be almost
3 months since being diagnosed with toncil cancer before I start any treatment (crazy eh).
Last week the RO said 7 weeks 5 days A week for the treatment, so I will let you know how it goes.

May God bless each and everyone of you on here..

Tonsil Dad.

Similar Rads Schedule....
Cool deal....

Thats' a pretty routine schedule that many of us have had....

35 days of rads, around a total of 15 - 25 minutes (inclusive of prep etc...) and technology depending... I had the IMRT myself.

Best,
John

Tonsil Dad

Skiffin16 said:

Similar Rads Schedule....
Cool deal....

Thats' a pretty routine schedule that many of us have had....

35 days of rads, around a total of 15 - 25 minutes (inclusive of prep etc...) and technology depending... I had the IMRT myself.

Best,
John

Rads
Thanks John ,
yes I am getting IMRT also. You say your in Lakeland, I'm in Ft Lauderdale. Getting
Treatment at the Sylvester Cancer Center in Deerfield Beach (part of U of Miami head &neck hospital)
Still getting my teeth fixed first, three out last Friday, crowns and cavities fixed next week,then
One more out the week after then I should be good to go.

Thanks for all the posts

T D.

Skiffin16

Tonsil Dad said:

Rads
Thanks John ,
yes I am getting IMRT also. You say your in Lakeland, I'm in Ft Lauderdale. Getting
Treatment at the Sylvester Cancer Center in Deerfield Beach (part of U of Miami head &neck hospital)
Still getting my teeth fixed first, three out last Friday, crowns and cavities fixed next week,then
One more out the week after then I should be good to go.

Thanks for all the posts

T D.

South Florida...
Cool deal...

Not sure if you fish, or have ever hear of DOA Lures....

But Mark Nichols founder lives in Stuart area. His wife was on here a few years ago, and posted a few times...(no mention of DOA or Mark)...

I communicated with her offering support (same as I do many here) and eventually I found out who they were, etc....

Mark had the same cancer as I, and he also is doing great post treatment. I've met him a few times since at various fishing seminars, etc.... Always pretty cool as he knew me as soon as we met and we always have a great time chatting.

JG