Surgery or not?! Tonsil Cancer
I have HP16 tonsil cancer and have yet to do my PET scan, but my ENT is thinking surgery will be an option. I am not particularly opposed to surgery but read about some risks with it.
If offered surgery as an option, should I take it (not sure if it is TORS)
Is surgery riskier than just radiation and chemo?
Would surgery be a “mandatory” part of treatment to be successful?
Thank you all for the help!
Comments
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All types of treatment come with some combination of risk and reward. Unfortunately, some of the risks (like side effects and loss of certain functions) can't be known until after treatment is completed. And sometimes not until long after. I would ask your doc about the potential risk and benefits of each treatment and then get a second opinion. You can make a better informed decision from that info. Nobody can say that one type of treatment is better or worse for any given patient. Not even those like people on CSN HNC who've done one or more types of treatment.
I recently did a survey that described each type of treatment and gave data on survival rates and incidents of side effects for each one. It would have been really helpful to have that info before my treatments 13 years ago. Not sure it would have changed my decision, but it would have made me more comfortable to have that info and not just to rely on my doc's opinion--as I sat in his office with that "deer in the headlights" look on my face.
mike
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Hello, Derp hope you are doing well.
There are risks with surgery as well as chemo and radiation. It depends on how extensive the surgery is and is it minor, average, or major surgery.
I had chemo and rads because to deal with my first cancer would have been major surgery, throat cancer, and they would have had to take a lot out to get the cancer. So chemo and rads were the option used, not disfiguring or traumatic in the way of surgery for that instance. But then I am experiencing the risks firsthand of chemo and rads such as dry mouth, loss of saliva, neuropathy.
The main thing is you need a cancer medical team you trust in and the object is to eradicate the cancer from your system and have an end result of NED. They may employ the use of any combination of surgery, rads, and chemo to get you to a cancer-free status. The idea is to eliminate the cancer and leave you as whole as possible with as little side effects as possible. Work with your team and balance the treatment options they present with what they recommend and what seems a viable option to you.
Sometimes only surgery is used as with the spot I had on my tongue. My ENT operated and removed part of my tongue till he had clear margins and no follow-up chemo or rads were used surgery only.
Surgery does carry a risk but is it mandatory. I would say generally no and in fact, these days chemo and rads are usually used because there is less chance of disfigurement as with surgery. Unless depending on an individual case the doctors say the only way to guarantee success is to have surgery but I think that may be an unusual scenario.
I would say if surgery alone can eradicate your cancer and leave little or no side effects or debilitating after-effects that would be good. But you have to work with your team maybe rads and chemo may be better, or maybe surgery and a lighter dose and follow-up of rads to get any errant cancer cells that may be left.
So Derp there are different tools and options to treat your case just ask your team lots of questions and work out the best method to eradicate this evil disease from your body in a One Time-One Shot deal.
Wishing you the best-Take care-God Bless-Russ
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Derp here is a link from MD Anderson on "Newly diagnosed Cancer Patients-Questions to Ask Your Doctor
Should help you somewhat.
BY Rosemary Catallo
Patients and their families often come into The Learning Center, where I work as a librarian, to seek information. After interacting with people for many years -- and from reviewing the large amount of information we have access to here --I've come to understand what information newly diagnosed patients and their families need.
Some patients are anxious if they don't have enough information. Other people get stressed or feel overwhelmed by too much information.
No matter which type of cancer patient you are, asking your health care team the right questions about your disease and cancer treatment can play an important part in managing your care.
I recommend the following basic questions for newly diagnosed cancer patients. Answers to these questions may allow you to feel less overwhelmed and better able to manage your cancer journey.
Just be sure to think about what you'd like to know right now, and tell your doctor if you would like a little information or a lot.
Cancer diagnosis
- What type of cancer do I have? What is my exact diagnosis?
- Where is the cancer located? Has it spread?·
- What is my prognosis?
Cancer staging
- What's the stage of my cancer?
- What does this stage mean for my cancer treatment and prognosis?
Cancer treatment
- What are my treatment options?
- Which treatment do you recommend and why?
- What's the goal of my treatment?
- What side effects does this treatment have?
- How often will I have treatments? How long will they last?
- How should I prepare for treatment?
Cancer research and clinicaltrials·
- What are clinical trials?
- Are clinical trials an option for me?·
- How can I learn more?
Cancer treatment side effects
- What are possible risks and side effects? What should I do to manage them?
- Will treatment make me infertile? If so, is there anything I can do to try to preserve my fertility?
- Whom should I call with questions? What about if it's after hours or an emergency?
- How will treatment affect my daily life? Can Istill work? Can I still exercise?
- What can I do to stay as healthy as possible before, during and after treatment?
Support
- What support services are available for my family and me?
- Can you refer me to support services?
Financial
- Who handles health insurance concerns in your office?
- I'm worried about paying for my treatment. Who can help me?
Learning more
- Can you please explain my pathology report to me?
- To avoid confusion, what terms should I use when looking up information about my disease?
- What resources do you suggest to help me learn more? ·
- Are other members of my family at risk?
Improving communication with your doctor
Most doctors find time to answer questions and explain treatment options, but you may not always be able to get your questions answered, at least not right away.
Improve communication with your doctor by doing the following:
- Write down your questions before your appointment. Prioritize the list and ask your most important questions first.
- Bring a notebook or recorder. Or use a recording app on your smartphone.
- Take a friend or family member to your appointment to help ask questions or write down information.
- Tell your doctor if you don't understand something. Medical vocabulary and concepts can be challenging.
Other resources to help you talk to your doctor
If you'd like to learn more, please visit The Learning Center at MD Anderson or check out the American Society of Clinical Oncology's guide, Questions to Ask the Doctor.
Asking your health care team the right questions about your disease and cancer treatment can play an important part in managing your care.
Rosemary Catallo
Take Care-God Bless-Russ
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I believe the data generally suggests that outcomes of surgery followed by radiation +/- chemo and radiation+chemo are basically the same...but yes, there are different risks associated with either route.
From a surgical perspective, it would all depend on your surgery. If they believe the primary is in one of your regular tonsils then that would be no different really than having your tonsils removed. If they believe the primary is in your lingual tonsil (base of tongue) then likely TORS and there are specific risks with that. If they need to do a neck dissection there are risks with those as well.
Radiation+chemo is no picnic either and based on my super-scientific research of folks who post on this board...people who end up doing the radiation+chemo route "generally" appear to struggle more with severe pain toward the end of treatment and end up on feeding tubes to get through the last couple of weeks compared to surgical folks with less radiation/chemo.
Ultimately, it seems like folks in both camps end up with some chronic things that bother them when it's all said and done but are able to move on with life pretty normally.
I myself had TORS to get the tumor at the base of my tongue, a neck dissection to remove the affected lymph nodes on the left side of my neck and a reduced dose of radiation only (no chemo). I struggle with a stiff neck and some neck cramps every once in a while. Otherwise I consider myself pretty much back to normal.
My choice was driven by a desire to get it out of my body and the ability to avoid chemotherapy. But your choices or options may differ. Good news is that either route generally has good outcomes.
Good luck.
Brandon
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Thank you!
Very informative! Exactly the information I was looking for.
I had my PET today, just got to wait until next week to get the results.
‘Always seeming to be waiting for something…lol
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Derpyderp 65, I just got done with my treatments. I'm at week 9.5 since the treatment calendar started on Dec 12. I was at MD Anderson here in Houston where I live. I, like you, went to an ENT to find out wtf was the lump under my neck. He operated on me the very next week without me getting an opinion from MDA. When I arrived at the MDA offices post surgery they were noticeably rattled that I had had surgery first. I believe that is because of the healing time post surgery. I had a left tonsillectomy and a lymphotomy on the same side. I was declared Stage 3 because of the metasises (sp?) into the lymph node from the tonsil.
I was lucky because I heal so quickly. They still delayed the radiation concerned that the cancer would rapidly spread, which is what H16 HPV squamous cell carcinoma does. As soon as I said I could handle it they started me on the first of 33 treatments (7000rads) to the affected area plus 6 chemo visits (they scheduled 7 and I couldn't handle it).
I think that's the rub with surgery before treatment. Let me know if I'm wrong.
Peace,
Graham
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I hope all is well for you! Your cancer seems very similar to mine, as far as tonsil and is in lymph nodes, but I am on the right side.. Did you use a feeding tube?
I just had my PET and I have my 1st meeting with the radiation oncologist 2/22 before my ENT 2/25 (after the PET)
My ENT has a surgery date set, waiting for next visit to go over PET and see if surgery is still his recommendation.
I’m glad to see the oncologist before it is all settled to get her opinion about surgery.
I was thinking surgery reduces or eliminates chemo requirements but also know it is case-by-case…
It feels like everything is happening so slow for me.
1st ENT visit was 12/16/21, 1st scan 1/13, biopsy 1/20, biopsy results 1/28, PET scan 2/15….
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Are you back to work?
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Yes sir. Back in the office yesterday. Tube came out as well. That took 9.5 weeks from Dec 12 to return to "normal" life. What a dang journey and I'm going to bare it all to show you the connectedness of all that we do to bring misery into our lives.
Our lives are our creation. Nothing like a cancer journey teaches you this. I've learned a ton from this experience, saw the incredible love in my wife who I had begun to take for granted about 6 years ago. We had become roommates essentially, with little tenderness between us. I'll explain how this happened. I'm a veteran and in December of 2020 disposed of some long held trauma through the use of intense psychedelics. I had crazy shame and guilt from a child molestation that I carried along with me for 45 years plus some other trauma from the military. That impacted my life almost like a virus from day one, led to sexual experiences that were risky back in the 90s and, that's when I caught the HPV virus. Honestly, it could have been worse and I could have caught HIV during a time when that meant certain death. I smoked and drank for about 12 years, ruined an amazing swimming career (I made Olympic Trials twice, swam at a Div 1 program) and never saw all the connections back to my childhood. Nevertheless, I stopped smoking thank God, but continued on with my life of self destruction drinking constantly, almost everyday, save the few days and interruptions where I swore off drinking to God etc. A near lifetime of constipation from being buzzed everyday led to hemorrhoid surgery about 5 years ago, that was one of the most painful surgeries of my life. I broke my hip 15 years ago after drinking 20+ beers all day long and thought wrestling on concrete was a good idea which led to three awful painful surgeries that ended in a replacement 6 years ago. A normal person would have seen the connections but not this stubborn mule. After my psychedelic experiences I started to settle down, processing decades of tightly held guilt and shame. It was a great release but the physical drinking addiction pattern was still there...the day to day behaviors associated I mean, as the guilt and shame which forged the relationship had disappeared.
I loved craft beer and used my physical addiction to alcohol to really nurture that love. I had the HPV virus inside me waiting to cause havoc. My daily drinking of alcohol washed over and over across that tonsil of mine until the irritation and inflammation was too much and the tumor formed into squamous cell carcinoma. I had an epiphany sometime around week 2 how everything in my life was connected. My diet, lack of regular, controlled, physical exercise and an addiction to booze created this cancer. Buddhist monks don't get cancer like regular folks do. They live a balanced life understanding that all humans suffer and as such value the sanctity of all living creatures. I was an angry white guy, driving to and from work everyday, with no concept of how I was writing this massive story of my life like a crazed artist flailing my brush in any media that would stick to the canvas. My mind was undisciplined.
And so here I am, almost 10 weeks since beginning this ordeal. I'm now super peaceful, creative and happy because I've been cleansed of this addiction. I prayed to God (Intelligent infinity) my higher self and associated angels every time that I had radiation or chemo to protect me during a visit. I never wavered from this process of faith and belief and this was uncommon for me as I'm not a religious guy. For some reason God and I made an agreement that I finally was ready to sign. My wife had become a hard woman being married to self destructive Graham, watching me crater into the most helpless human softened her up. We had some incredible open hearted discussions, reviewed my life and disclosed some long held secrets, baring our souls towards one another. We now are being a ton more physical and loving with each other. I'm like a child again, focused on the rest of my life in balance. We have a painting area now set up in our house where the two of us enjoy tea or coffee (it started out with me getting breakfast through my feeding tube) while painting, listening to albums and talking our feelings out. I've stressed to her that I'm done with alcohol and she sees the change in me. She's confident that this has scared me enough into tossing in the proverbial towel. We are scheduling a therapist to help process this event plus all the pandemic fallout, and to make sure we're clear as a couple moving forward.
Yes I'm back to work but more importantly I'm back to me. I will look back on this experience as an incredible catalyst. Happy Friday
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Well, Graham, I must say you are very brave to bear your life and your soul to the open forum and the world. I am going to post a link below made by a videographer that had cancer and his story is very good and supportive and this video always gave me great comfort during my first cancer, his name is Ken Curtis. This man has experienced cancer different times in his life, when he was young he helped take care of his mother during a cancer bout and 40 years later his step mother also had cancer.
One of the things that always stuck with me is he said "Many people that get diagnosed with advanced cancer surprisingly, actually come to say cancer is the best thing that ever happened to them. They call it their wake up call and they say that the Blessings far outweigh the pain"
He goes on to say "I can personally say that the 3 1/2 years since I got my diagnosis have been good years, and I have to say even in some ways my best years. It's because I savor each day so much more. I treasure family and friends I used to take for granted. And it's good not to have to prove anything to anyone, right now all I need to do is discern what does God want me to do and then do it joyfully".
In another quote he says "One day I woke up dreaming about going back to the time before I had cancer. And then I realized I did not have to give cancer more than it's due. Because cancer is like a wicked thief that broke into my house to find money, jewelry, and other valuables. But that thief misses so much. My books, my pictures, my written journals in which I preserve cherished reflections, these the thief leaves untouched. They're some of the most precious valuables. And I came to realize there are things in life that cancer simply cannot reach. Maybe it can ravage the body, but it has no claim on the soul".
Graham, I am glad you are turning your life around through this and it truly is a watershed moment for you and your family. Literally a new lease on life and a perfect example of how good can come about because of evil in the disease of cancer. Clearly cancer can be a life changer in many ways.
Here is the video and there may be a couple ads, I hope it helps you and others.
Wishing You The Best-Take Care-God Bless-Russ
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Just left the radiation oncologist. T2N2
Radiation and chemo is the minimum course of treatment based on lymph nodes glowing on the PET scan.
I see the ENT Friday to get their opinion of surgery.
I was of the understanding that surgery is to prevent chemotherapy and if you have to do chemo then no reason for surgery?
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I think in the case of lymph nodes they want to get any bad ones out and they will test them because I think cancer tends to metastasize more from lymph nodes. That would be one reason they are sending you to the surgeon also.
With my throat tumor an operation would have been disfiguring so they used chemo and radiation and no surgery. Lymph operations on the neck are hardly noticeable once they heal up.
The follow-up chemo and rads are to mop up any errant cancer cells around your body and in the area of the nodes.
Take Care-God Bless-Russ
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Ideally, your center would have a tumor board where all the providers review the case and make a consensus recommendation on your plan (or the choices you have).
It's hard to say whether your Rad team is saying that rad+chemo is THE recommendation based on guidelines (which I've attached...they are interesting to review and anyone can sign up to look through them) or whether they are saying it's THEIR recommendation. There is an track below where a patient could do surgery and just radiation but it depends on whether you have higher risk features.
If the option of rad+chemo or surgery+rad+chemo was given to me...I would probably forgo surgery if it wasn't needed...again assuming they felt that both choices had similar results. Rad+chemo IS THE STANDARD OF CARE and any other variation off of that is to reduce some treatment based on lower risk on an individual patient basis. When in doubt, hit it with the STANDARD OF CARE and make it go away.
Just my opinion, I am not a physician.
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This is the exact chart I was shown!
I am definitely leaning to no surgery.
Seeing how I never had to make this type of decision, I will listen and do my best to make the best decision.
Or, flip a coin….
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I was never given a choice. MD Anderson knows what they're doing. I just went with the flow to stay alive. Don't worry about all the pain ahead of you. You, like thousands before you, can get through this. Let your doctors make your treatment decisions. I thought I could control things in the beginning. I was wrong. All you can do is control your behavior during treatment.
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Ah, wish I was at someplace like MD Anderson.
I may be getting it all wrong.
I may go to my appointment with the ENT and they tell me surgery is not a viable option at this point.
My radiation oncologist was to call the ENT to discuss my case.
leaving it up to me/patient is not a good idea at all, but I will be taking a coin just in case….
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Derp can you sign off with a first name I feel odd calling you derp or derpy unless that is in fact your real name.
I guess we would all like to say we were getting treatment at a top-rated cancer center. But that is not the case for many of us. That does not mean the place you are getting treatment is any worse or substandard as compared to a major renowned cancer center.
I myself did not go to a major city big cancer center but as far as I am concerned received treatment second to none.
I don't think you will get it all wrong I am sure your ENT can guide you and help you make the right decision. He/she will go over the options but the final decision is left to the patient. You need to feel confident in your doctors and treatment team and you should feel as comfortable as possible while dealing with cancer.
I do not know where you are getting treated but some hospitals have a tumor board that meets with various doctors and radiologists I guess and they discuss each case coming up for treatment and make a recommendation for the best route of treatment. Are you in such a place? Also, I believe if you request it you can sit in while they discuss your case and even ask questions.
Trust in the people who are treating you I have found all of them in every aspect to be dedicated to their work and the patients well being. Many put their heart and soul into their work and go above and beyond for their patients. I can attest to this and have nothing but great things to say about the many good folks who have cared so dearly for me from the front-line nurse on up to the skilled surgeon. Even the administrative people who set up your radiation schedule are dedicated to making this as easy as possible for you.
You can also get a second opinion if you are unsure or uncomfortable. In the end, get and gather all the information you can to inform yourself and make sure you are comfortable with your team and have considered all the options, and know you are making the best decision. In the end, the tumor board or your ENT will probably present to you what they have decided is the best route of treatment to eradicate this evil disease from your body and it will be up to you to say yes and sign on.
Wishing you the best-Take care-God Bless-Russ
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