Deciding between 2 treatment options
So, I met with 3 Drs yeaterday. Chemo, Radiation, and ENT.
After the meetings were over, We walked out with 2 options to pick from.
Surgery by TORS to remove tonsils, follwed by removing swollen lymph nodes in neck along with radiation, with a possible Chemo backup if lymoh nodes appeared ruptured.
Or, Chemo and Radiation, with surgery as backup if needed...
Im not gonna lie. I want to avoid Chemo if I can, because of the fear of damage to my body, and the need of a port, which terrifues me for some reason.
If you had to choose, what would you do and why??
The Drs all said they were doing a Tumor Board meeting next Thursday to discuss my case, and said they would call me to tell me what they think
I said I wanted to come in that day to discuss in person. And I will be seeing Radiologist to discuss because either way, he will be involved
They also advised that the options were equal regarding outcomes.
They already said I only have 2 options, to be clear.
Again, what would you pick, and why??
Comments
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I was offered the same...
I chose TORS + radiation. I wanted the tumor out of me and also didn't like the idea of systemic (whole body) therapy when the tumor was currently isolated to one spot. Purely preference as both routes have equally great outcomes.
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Robbie I Am Glad
You had your meeting with 3 doctors so you have that many inputs for info.
Just to say none of this H&N treatment is easy but certainly doable.
I am posting a link to another discussion on here by Jim108 and BeagleDad and others.
This is relevant because one of them had TORS Surgery (BeagleDad) on 11/24/20 and Jiom108 is scheduled for TORS on 8/24/21 about 8 days from now.
Check out this recent discussion https://csn.cancer.org/node/323800
Your cases seem similar so you may want to talk to them on the open board or Private Message them and if you read BeagleDads description of his treatment and recovery in the linked post he does an excellent job of describing it and the positives and negatives.
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I can't really comment on TORS but BeagleDad and others on here may be able to help you on that.
My first cancer of the throat was treated with chemo and rads only no surgery but I ended up with leftover effects from both treatments.
Make no mistake either chemo or rads have the possibility to leave you with a leftover condition but usually, we can adapt to it.
But all that depends on each case and the amount and strength and type of chemo and strength and area applied of the rads you get and depending on the chemo some are not so bad.
It is mostly the chemos with the platins in such as cisplatin and I think 5 fu has it.
Let me say don't try to avoid chemo if they recommend it and you trust your docs you need to get this cancer beat and in one shot and have it done with.
Again you want to get this cancer situation taken care of once and done because there is a limited amount of radiation and chemo you can receive.
So whatever you do between you and your care team choose the plan that eradicates this cancer.
Don't fear the port if they recommend it as it is a great vein saver and can be put in at a simple outpatient operation.
My team recommended one and I got it and am glad I did.
So here is what I have gleaned from reading this board and other sources.
I have heard it said that if you can get the surgery and have clear margins and avoid chemo and radiation that is the best.
They say you can save the other 2 options for later if you need them.
But if there is any question that there are any remaining cancer cells left and the operation did not provide clear margins and get all the cancer cells then follow-up radiation and chemotherapy will be needed.
Your other option of no surgery and chemo and rads is an option that works but the risk of after effect exists so discuss this with your docs.
I am glad your case is going before a tumor board that is good.
So equal outcomes means cancer is gone.
So you have to decide TORS and radiation plus possible chemo or just do the rads and chemo.
I very much recommend you private message BeagleDad as I think he would be a great help and Jim108 also.
Wishing you the best on your decision and meeting with the tumor board-Take care-God Bless-Russ0 -
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My Treatment
I had Tors to remove tonsil, lymph nodes, small sliver of tongue, part of my soft palate and get clear margin. Recovery was tough for 10-14 days. I spent 5 days in the hospital recovering and went home for the remainder and it was hard once I was off the morphine. Once I was recovered enought I began low dose chemo and twice daily radiation. I was part of a trail that is supposed to give me a better quality of life experience when I'm older (44 at time of treatment). Again, recovery from the radiation was hard but my docs thought it was the best way for me to get through it and I trusted them. If I can be of any help, please send me an email or reach out on this thread. Good luck with your decision!
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It's Radiation
Robbie,
They may make the choice for you, however what I wanted to impress on you is that it's Radiation treatments that do the Most Actual Damage to one's " body". Bone damage, ...Fibrosis and scarring that can lead to big problems like closing/ obstructing the esophagus and airway----and then other effects which are lesser but still bothersome and these can come Years later.
Not everyone has the more Impactful effects of radiation however it is still has Much more effects than chemo. Chemo effects are largely during treatment.
Radiation, much different as the effects take a longer time to manifest.
please understand that in our cancer, Radiation is a Must!!! In most of our cases, it's the Radiaotherapy which can ensure a long time cancer free life. Yes, that is unfortunate, but it's what we have now.
it was very rough on me...I was admitted to the hospital twice during treatments...
that being said, when a New Primary came up 9 months later, what treatment did I request following 2 more surgeries ??
radiation I begged my R O for a second round just to that tumor area, to mop up any wayward cancer cells after 2 more extensive surgeries. ( he said no)
My point is please do not discount up front if your tumor board is saying you need chemotherapy. Sure it will be rough but please get it in your mind that it won't cause Serious side effects.
the more Serious ones can come from radiation AND those do not occur with everyone.
Hey, even if they do--- you will still be Thankful everyday to wake up on this side of the grass. My boyfriend Randal died this May 18th, at 3:15am. He would say things like thst... Randal fought through 2 ( Two !!) Stage I V cancers for 9 years. No break between them. First was CLL Leukemia, with 2 years chemotherapy. He was a Software enginerr/ programmer and he continued to work during those 2 years.
but then he got hit with Stage IV Base of Tongue HPV+ HNSCC. It metastasized very quickly liver and bones. He had innumerable chemo regiments plus Radiation twice plus immunotherapy twice...and was still Fighting!! 9 years. He was 6'2" tall. ...brilliant man.
I am sorry to ramble!! My point is for you to Hear and Listen Carefully to what your Team is saying. That likely have reasons for the combinations of therapy they are wanting to treat you with. There are reasons they want it in your specific case. When a tumor board makes decisions, they are well thought out and to your benefit.
It's likely Wise to adhere to their recommendations !!! I am not the oncologist, They Are. Please listen to them. It's for your Life.
Best of luck.
And Time of of the essence !!! Do not dawdle .... There's a reason they say " Cancer does not quit, neither will we". They have to act to stop the advance.
Crystal
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Think long and hard about rads
I understand that there is no treatment that avoids all short and long term side efffects, but in my own case, radiation has been far more damaging and lasting than chemo. But, my tumor was just below my jaw, not tonsils. Bottom line, listen to your doc team.
mike
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The Port
Robbie,
I just saw that in the message, saying you do not want the Port.
Robbie, my first Port a Cath was at age 23. I had recently graduated University of North Carolina... It was not for cancer therapies, but rather for the very frequent infusions I have to have for a genetic blood disorder. I go in the hospital every 28 days for a long infusion of a blood product. I'm there in the hospital all day because its closely monitored. I have done these for over 30 years now.
That is apart from my cancer ! My cancer was diagnosed 2017. So, I have had Ports and they are Easy.
Look, you must fight Cancer. It Will require changes in your life for the length of the treatments. To preserve your life and go forward. There's no other way. We all go Through it. The bigger picture is the goal.
Crystal
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Rob,
I'm not a Doctor, just a know-it-all, electrical engineer. In the end, this is a decision that you should make with your Oncologist(s). They are working for YOU. Ask them what THEY recommend, and why.
Either way, the good people on the CSN will be here to help you, every stop along the way.
We are all proof, that the process works, and life goes on!
I wish you the best of luck - in whatever treatment you undertake!
MG
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I had ALL 3
OK Robbie ... first off..I get it. I understand the trepidation and associated fears. As CJ said, the chemo doe snot really have "lasting" effects... that is so long as you can force yourself to consume enough water to keep peeing and get it out of your kidneys as fast as you can (Which is why they give you fluids and drugs to make you pee while AT the chemo center). As another person said, the radiation is the one with the "lasting" effects... 5 months out and I am still dealing with the fibrosis issues.... but you know what I am NOT dealiing with? CANCER!!!! My CT came back NED two weeks ago.
I had my left tonsil remvoed and 4 lymph nodes using TORS and regular surgery all at the same time. Yes, it was HORRIBLE and an experience I would only wish on the very few mortal enemies I have actually encountered in my 60 years here. The week following was one of the worst of my entire life. But almost all of the cancer was sitting in some biohazard waste can in Little Rock, Arkansas and OUT OF MY NECK.
Then the chemo/radiation started a few weeks later. Only 7 weeks but 3-4 of them were mind-numbingly difficult to endure. I eventually found some "hacks" that helped me, and some things to pass my time, but again, a very, very bad experience.But now I have been "in recovery" longer than I was in all treatments combned. All that is past me. Do I ever want to do it again? HELL NO! That is why I stopped smoking weed and gave up ALL alcohol .. .and I love the both of them and miss them. But I never want to be the cause of such agony to myself again. EVER.
So I am jsut being straight with you, dude. You have very good reason to be scared, nervous, sad, angry, or whatever combination of those you feel. But, dude, DO NOT let those things affect this decision. GET THAT CRAP OUT OF YOUR BODY and then get it KILLED ..every microscopic, invisible rapidly-reproducing vcell you can BY WHATEVER MEANS you can. If you risk not getting it all because you don't want to feel bad today, then you will only find yourself repeating it later in life. Do not risk putting yourself through this again. At least if you have to do it again make sure it is not YOUR own fault.
In my humble opinion, your ONLY concern should be getting it all out of your body and killing any that remain through Cisplatin and UV rays.Anyone here answering you has gone through some, all, or more of what you are facing. WE COMPLETELY understand. But this stuff is not something to gamble on. You are on a battlefield facing an enemy THAT WILL KILL YOU ... PAINFULLY. You HAVE to kill it first.
As bad as the treatment is, we ALL get through it .. and we on this page have plenty of helpful hints to get you through it as best you can. In 8-10 weeks, you can be here helping others that are facing it. You can give them hope, give them the truth, share what you experienced to help make their struggle a bit easier.
I often wondered if I should have skipped the TORS and neck dissection and just let the chemo and radiation work. Now that it is all over, I am glad I went the way I did. Because of the TORS I was afforded "low dose" radiation (54g on right, 60 on left) ... folks without the TORS get around 70G. And I had a GREAT Oncology center, Highlands Oncology in Rogers, Arkansas. My Radiation doctor pinpointed that radiation so a bare minimum of damage was caused to places other than where the cancer was or may have been. My recovery was quick and full. But more importantly, it was SUCCESSFUL.
Throw everything you got at that crap, man. Do not gamble with it. Kill it -- ALL OF IT -- while you got the chance to. This is no place to be rolling the dice to try to make the treatment "easier". IT IS NOT WORTH IT.
But then, that above is all just my opinion. My EXPERIENCED opinion.
Robbie...feel free to message me or contact me directly... I have tons of hacks that can make parts "easier" ... little things...but when we go through this crap, the little things matter. Even as small as skin care stuff (which I learned from Piplilly right here)
Go attack that enemy and let us be your army of support. NONE of us HAVE to be here; no one is getting paid to keep this message board up and running every day -- our sole desire is to help folks JUST LIKE YOU.
Go in peace, Robbie, but go fighting.
Don AKA Beagledad
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?
1st, a Power Port is nothing but good. I couldn't even tell it was there under my skin, after the Outpatient Op. to install it. And it is necessary to get the chemo in you, typical being 5-FU and Cisplatin. If it has not been determined that you'll need Chemo, then I don't know why they would want to install a Port until they know. Very minor Op., so getting a Port before Chemo, which will affect your immune system during tx, should not be a problem.
2nd, others are right- the Chemo just makes you temporarily sick, so your thinking what you are about the Chemo is nuts. Rads do the most damage to tissue, creating scar tissue out of what was naturally good tissue. Also impacts the saliva glands if you're getting above the chin, and can hurt nerves and muscle. I would find out how many Gys they plan on delivering and where. 70, I think, is the max, and with the surgery I doubt they will have to zap you anywhere with close to that many greys.
3rd, I see you did not post the survival % your Dr.s should have told you. Why? My ENT told me I fell into the 95% catagory, and that was all I needed to hear to accept everything and be in a Positive mindset, because C has only one intent- to kill you.
4th, you are at a good C Medical Center, unlike me with the Local Locos, so you can trust your C team members to do right by you.
5th, surgery to remove C was not an option the Local Locos offered, so I cannot advise which might be the best option.
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Choice
I am leaning towards surgery with rads and will have chemo as a backup.
It is my understanding that rads will be 6 weeks opposed to 7 weeks, and if chemo is needed, then it will likely be a kesser amount as well.
The other option is chemo and rads for 7 weeks and will have surgery as a backup if needed.
They cannot say whether the lymphs ruptured anywhere, so they will not know if chemo is needed until they remove the lymph nodes to look at outer walls.
My thoughts are that getting the tonsil removed and the lymphs removed is important, just to get them OUT!! Rads is going to be in play regardless of which option is chosen. By the way, ENT did.say he would also remove the other tonsil as well, just to be safe.
Being that we were told both options have equal success and outcomes..The chemo/rads option will rely on all of the cancer dying without removing it. They said the body would absorb the tissue and will likely have scar tissue remain. They said in this.option the surgery would be to cleanup anything that is left.
The 1st option will rely on the removal being successful and no rupture of lymph walls. In this.option, chemo would be used as the c cells ventured forth thru my system.
My trying to avoid chemo makes sense to me. I will have it if I have to but, if I can avoid it with the same outcome, then that makes sense.
Again, option 1 has lesser amount of rads, and I would figure alzo lesser amount of chemo.
Your thoughts?
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Rob,Robbie Lowery said:Choice
I am leaning towards surgery with rads and will have chemo as a backup.
It is my understanding that rads will be 6 weeks opposed to 7 weeks, and if chemo is needed, then it will likely be a kesser amount as well.
The other option is chemo and rads for 7 weeks and will have surgery as a backup if needed.
They cannot say whether the lymphs ruptured anywhere, so they will not know if chemo is needed until they remove the lymph nodes to look at outer walls.
My thoughts are that getting the tonsil removed and the lymphs removed is important, just to get them OUT!! Rads is going to be in play regardless of which option is chosen. By the way, ENT did.say he would also remove the other tonsil as well, just to be safe.
Being that we were told both options have equal success and outcomes..The chemo/rads option will rely on all of the cancer dying without removing it. They said the body would absorb the tissue and will likely have scar tissue remain. They said in this.option the surgery would be to cleanup anything that is left.
The 1st option will rely on the removal being successful and no rupture of lymph walls. In this.option, chemo would be used as the c cells ventured forth thru my system.
My trying to avoid chemo makes sense to me. I will have it if I have to but, if I can avoid it with the same outcome, then that makes sense.
Again, option 1 has lesser amount of rads, and I would figure alzo lesser amount of chemo.
Your thoughts?
It alwasys feels good, to know what the plan is, so you can start preparing for it.
I did find that getting my tonsils out, was one of the most painful parts of my whole Cancer treatment regimen ... but it only lasted a short time.
A blood port seems like a big deal, when you first hear about it - but I found it to be pretty much un-noticeable, after the first week or so. In my opinion, it is MUCH better than having tubes run out of one's arm ... or having them try to find a vein with a needle, each time you go in.
They even gave me some numbing cream to put on it (which I forgot, most of the time). That way, when they put the needle in the port, it's not even painful.
The whole Cancer thinig is not an easy process, I won't lie. But you WILL get through it.
My advice to you, at this point is EAT EAT EAT - ALL of your favorites and LOTS of them! Just trust me on this one. 10 extra pounds would not be a bad thing to go into this treatment with!!
MG
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Choicesmotorcycleguy said:Rob,
It alwasys feels good, to know what the plan is, so you can start preparing for it.
I did find that getting my tonsils out, was one of the most painful parts of my whole Cancer treatment regimen ... but it only lasted a short time.
A blood port seems like a big deal, when you first hear about it - but I found it to be pretty much un-noticeable, after the first week or so. In my opinion, it is MUCH better than having tubes run out of one's arm ... or having them try to find a vein with a needle, each time you go in.
They even gave me some numbing cream to put on it (which I forgot, most of the time). That way, when they put the needle in the port, it's not even painful.
The whole Cancer thinig is not an easy process, I won't lie. But you WILL get through it.
My advice to you, at this point is EAT EAT EAT - ALL of your favorites and LOTS of them! Just trust me on this one. 10 extra pounds would not be a bad thing to go into this treatment with!!
MG
I had the same exact choices you have. I went to 3 different docs and got 3 different opinions. I chose TORS + Radiation tx with the possiblity of chemo depending on the path report. The path report and tumor board said no chemo. In the end every case is unique it its own way. Trust you medical team to guide you. Lean on faith and family if possible and you to will see this through. Good advice from MG EAT! and even during rads when you can't taste anything EAT anyway and you will heal much better. Good luck.
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big G said:
Choices
I had the same exact choices you have. I went to 3 different docs and got 3 different opinions. I chose TORS + Radiation tx with the possiblity of chemo depending on the path report. The path report and tumor board said no chemo. In the end every case is unique it its own way. Trust you medical team to guide you. Lean on faith and family if possible and you to will see this through. Good advice from MG EAT! and even during rads when you can't taste anything EAT anyway and you will heal much better. Good luck.
Good afternoon,
Please tell me.about what you went thru.
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About meRobbie Lowery said:Good afternoon,
Please tell me.about what you went thru.
Robbie, click on my title to go to my about me page.
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