TransOral Robotic Surgery (TORS) & Radiation VS Radiation & Chemo
What a great place to gain information and support!
My story is I am a 48 year old male, at peace with where I am going if my life is shortened, but not really ready to move on to heaven! I went to my primary care physician for my yearly physical 4 weeks ago and he found a lump in my neck (left lymph node).
• He sent me to get a CT scan. Scan indicated a 3.4 cm tumor and a “suspicious” spot in my throat.
• A fine-needle aspiration needle biopsy indicated the lump was Squamous Cell Carcinoma (SCC) cancer.
• Otolaryngologist Oncology Surgeon scoped and biopsied my throat and tonsil. This determined that the tonsil was the primary source of the SSC and the left lymph node was the secondary cancer.
• He took my case to the “tumor board”; 25 members consisting oncology doctors, surgeons, dentists, plastic surgeons, therapists, chemo docs and radiation docs.
The board determined that both of the following options are equally viable:
• Option A: TransOral Robotic Surgery (TORS) to remove the cancer at the tonsil, then two weeks later exterior incision to remove the cancerous lymph node. Then probably followed by 6 weeks of radiation a few weeks later.
• Option B: Radiation & Chemo lasting 7 weeks with 2 to 3 chemo cycles lasting 2 days, 5 hours each.
We have met with the TORS surgeon and Chemo Doctor, they both explained their procedures and said they were practically equal on curing the cancer. (Both feel that I have a 85-95% cure rate). That seems great!
I asked both doctors if they were sitting in my chair and knew what they know, what would they do? As you have probably guessed, they both said they would do… what they do. Chemo doc would do Radiation and chemo, the TORS surgeon would do the TORS.
We meet with the Radiation doctor tomorrow.
Anyone have similar cancer and looked at both options… and made a decision?
I have the TORS surgery schedule for next Wednesday, but can cancel if I opt to do Radiation and Chemo. I just wanted to get it on the schedule so I don’t have to wait longer if it’s not needed.
Thanks for all your help.
Comments
-
either or
I was told the same by my docs...one does one thing and the other does the other!!! My ENT said if you ever need to ask again don't ask what they would do; ask what would they advise to their mother or kids!
My cancer was tongue, stage 4 and in 3 nodes (all left side)HPV found. I was given the option of surgery to remove part of tongue and nodes and the follow up of radiation and chemo (35-7) or JUST (sarcasm inserted here) the 35 radiation and 7 chemos.
I opted for the 2nd. The surgery outcome a year down the road seemed too much for me. I went with my gut feeling and coming up on 10 months later, am glad I made that decision.
We all are different and our cancer affects us in different ways. I took a great friend with me and after I made my decision I could see the look on her face. I told her when we left that I may have signed my death certificate but quality of life meant as much to me as quantity. She agreed. Got home and called my ENT. After a half hour of me babbling and we went to hang up he said if it was him he would have made the same choice.
So...my advice is listen to your inner self. I was also told that after I turned down the surgery, my surgeon had he felt it absolutely imperative that I have the surgery, would have said so.
Good luck on your journey and know there are many here to support you.
Peace
Nancy aka toughcookie0 -
Hi Husker
Sounds like eaither way you go you will be ok, If it was me I would do just the radaition and Chemo, but there are a lot of others who believe more in the doing the TORS.
PS: Welcome to our family here on CSN
Good luck and may the Lord be with you my friend
Hondo0 -
option AHondo said:Hi Husker
Sounds like eaither way you go you will be ok, If it was me I would do just the radaition and Chemo, but there are a lot of others who believe more in the doing the TORS.
PS: Welcome to our family here on CSN
Good luck and may the Lord be with you my friend
Hondo
I like option A. My 2 INTERNET 2 cents worth is that surgery is always the better option and a good starting place. The surgeon will know if he got clean margins and can always recommend chemo if not. I have not had the robotic surgery but have seen it performed and it is just phenomenal. Take advantage of the technology. The only thing you are avoiding with either one is the chemo? If I could avoid radiation then I would choose that route but that is not your option. Is the surgery to remove the node going to be a neck dissection? I would think they may go that way just to be safe. Sounds like you are getting some great medical care. Welcome to the board.0 -
SAME DIAGNOSIS
Hello, sorry to find you here but this site has been a god send for me. I am 47, and last June I noticed a large lump on the right side of my throat. Long story short, I was diagnosed as Stage 4 SCC with primary to Right Tonsill with METS to the neck. My team and I decided to do the Tonsillectomey with Neck Dissection followed by 3 rounds of Cisplatin and 6 weeks of IMRT therapy to both sides of my neck. I am very glad I had everything medical technology had to "throw at it" as after my 3 surgeries, I was restaged to 4B as the cancer in my Tonsil had spread outside of the Tonsil and 19 of 24 Nods removed were cancer. I hit my one year mark from surgery this week on Augist 2nd and just passed my 9 month mark post treatment on July 20th.
So far so good as I have had a clean PET Scan in February followed by a clean Chest CT and a Clean Neck CT this past June. I go for a Throat Scope and exam every 90 days and have been good to date.
Has your ENT mentioned the HPV virus as a possible cause of your SCC? If so, research shows the SCC responds much better to the Chemo and Radiation.
I am a huge fan of the TORS and also hope you are being seen by an NCI certified facility.
In closing, you will hear from allot of us with exactly the same diagnosis as you, and we will be glad to share what we know, be here for you if you need to vent, ETC.
You will come out the other side just fine.
BEST!!
Mike0 -
Very Very Familiar.ratface said:option A
I like option A. My 2 INTERNET 2 cents worth is that surgery is always the better option and a good starting place. The surgeon will know if he got clean margins and can always recommend chemo if not. I have not had the robotic surgery but have seen it performed and it is just phenomenal. Take advantage of the technology. The only thing you are avoiding with either one is the chemo? If I could avoid radiation then I would choose that route but that is not your option. Is the surgery to remove the node going to be a neck dissection? I would think they may go that way just to be safe. Sounds like you are getting some great medical care. Welcome to the board.
Hello Husker Fan,
TORS caught my attention right away. I am a huge fan...because Mark diagnosed 4/2010 at age 53 with SCC left tonsil, stage IV HPV+ had TORS. In fact his surgeon pioneered the surgery and if you asked your surgeon, he probably was taught the procedure by Mark's doctor.
Anyway...I hear your dilemma...one OR the other...each doctor suggesting his/her area of specialization. Mark did both...and I will tell you what made him decide to do both. It was the radiology ocologist. Mark asked all the same questions you did; but his Rad Onc said do the surgery AND the radiation/chemo. Mark felt this was bi-partisan medicine at its best.
He did both. The surgeon felt he cleared the margins of cancer with the TORS and the following radical neck dissection. Mark then continued with 6 weeks of radiation and chemotherapy to give cancer that final kick.
I am happy to say that on July 20th Mark was 1 year post treatment with 2 clean PET scans behind him. (3rd scheduled for the end of August). He just celebrated his 55th birthday yesterday. He feels great.
You are right...there is great information, support, and experience here. Welcome...and I am sorry you had to find yourself here.
Kim0 -
Very Very Familiar.ratface said:option A
I like option A. My 2 INTERNET 2 cents worth is that surgery is always the better option and a good starting place. The surgeon will know if he got clean margins and can always recommend chemo if not. I have not had the robotic surgery but have seen it performed and it is just phenomenal. Take advantage of the technology. The only thing you are avoiding with either one is the chemo? If I could avoid radiation then I would choose that route but that is not your option. Is the surgery to remove the node going to be a neck dissection? I would think they may go that way just to be safe. Sounds like you are getting some great medical care. Welcome to the board.
Hello Husker Fan,
TORS caught my attention right away. I am a huge fan...because Mark diagnosed 4/2010 at age 53 with SCC left tonsil, stage IV HPV+ had TORS. In fact his surgeon pioneered the surgery and if you asked your surgeon, he probably was taught the procedure by Mark's doctor.
Anyway...I hear your dilemma...one OR the other...each doctor suggesting his/her area of specialization. Mark did both...and I will tell you what made him decide to do both. It was the radiology ocologist. Mark asked all the same questions you did; but his Rad Onc said do the surgery AND the radiation/chemo. Mark felt this was bi-partisan medicine at its best.
He did both. The surgeon felt he cleared the margins of cancer with the TORS and the following radical neck dissection. Mark then continued with 6 weeks of radiation and chemotherapy to give cancer that final kick.
I am happy to say that on July 20th Mark was 1 year post treatment with 2 clean PET scans behind him. (3rd scheduled for the end of August). He just celebrated his 55th birthday yesterday. He feels great.
You are right...there is great information, support, and experience here. Welcome...and I am sorry you had to find yourself here.
Kim0 -
Right, not leftluv4lacrosse said:SAME DIAGNOSIS
Hello, sorry to find you here but this site has been a god send for me. I am 47, and last June I noticed a large lump on the right side of my throat. Long story short, I was diagnosed as Stage 4 SCC with primary to Right Tonsill with METS to the neck. My team and I decided to do the Tonsillectomey with Neck Dissection followed by 3 rounds of Cisplatin and 6 weeks of IMRT therapy to both sides of my neck. I am very glad I had everything medical technology had to "throw at it" as after my 3 surgeries, I was restaged to 4B as the cancer in my Tonsil had spread outside of the Tonsil and 19 of 24 Nods removed were cancer. I hit my one year mark from surgery this week on Augist 2nd and just passed my 9 month mark post treatment on July 20th.
So far so good as I have had a clean PET Scan in February followed by a clean Chest CT and a Clean Neck CT this past June. I go for a Throat Scope and exam every 90 days and have been good to date.
Has your ENT mentioned the HPV virus as a possible cause of your SCC? If so, research shows the SCC responds much better to the Chemo and Radiation.
I am a huge fan of the TORS and also hope you are being seen by an NCI certified facility.
In closing, you will hear from allot of us with exactly the same diagnosis as you, and we will be glad to share what we know, be here for you if you need to vent, ETC.
You will come out the other side just fine.
BEST!!
Mike
for me anyway. Otherwise, your description of the tonsil tumor jumping to the lymph node (a two-inch metastasis) and options is just like mine. I was diagnosed one year ago this week and later this month it will be a year since the tonsillectomy. My surgeon does it himself and he is a master. He got it out with clean, if slim, margins.
To your choices: The surgeon, the rad onc and the med onc also sit on tumor board and discuss (this is Georgetown Univ Teaching Hosp) and their recommendation was that the tonsil be got out cleanly and then we follow up with rads and chemos for nine weeks. The idea of this was that they didn't want to disturb the lymph node and its tumor or any other tumor or floating cancer in there. They thought it better to zap the known tumor and use chemo to support the rads and to clean up any floaters and then see. At some point in the future, a neck dissection to clean out dead leftovers was always a possibility. I thought at first that just going in and cutting out all the known bad stuff was the way to go but this more careful way was what they thought best.
Well, it worked. By the end when we did a scan, everything was looking good. We decided that, since there was a dead husk of an ex-tumorous lymph node it was safe to go in and clean up in February. He did and took 25 other lymph nodes and all were cancer-free. So, in the end, it was somewhat unnecessary but you don't know for sure until you get them out and biopsied so I have not questioned this.
By the way, in the couple of months between the end of treatment and the neck thing I did go back to playing hockey and after a couple of weeks off for the neck, won another league championship in April. You may be able to get through this just as well.
So, in the end, I agree with some of the others. I would go for "all of the above". It's your life and you don't want to fool around with half-treating it. This is really not fun but it is worth it. Let us help you through this and have your caregiver go on to the Caregivers forum here. There are really wonderful supportive folks there.
Doug0 -
Chiming in
The one who had to go through it already commented (Goalie), so I'll keep it short. I'm wondering why there is not an option C: TORS to remove the tonsil cancer, then radiation/chemo, and then a neck dissection if necessary.
If the cancer had not spread, option B would be the one. However, since it is only spread to one node, it makes sense to wait on that one and use it to gauge how effective the radiation/chemo is. According to Doug's doctor/researcher brother, this is important. If the lymph node tumor melts away, you might not need to have it removed (these guys make neck dissections sound easy, but they don't just take that one node - I think that kind of surgery is best done, if at all, after radiation). And if you do go get it later, it's more likely everything is dead and you are not liberating live cancer cells to go run around your body.0 -
Thanks for the encouragement and info!DrMary said:Chiming in
The one who had to go through it already commented (Goalie), so I'll keep it short. I'm wondering why there is not an option C: TORS to remove the tonsil cancer, then radiation/chemo, and then a neck dissection if necessary.
If the cancer had not spread, option B would be the one. However, since it is only spread to one node, it makes sense to wait on that one and use it to gauge how effective the radiation/chemo is. According to Doug's doctor/researcher brother, this is important. If the lymph node tumor melts away, you might not need to have it removed (these guys make neck dissections sound easy, but they don't just take that one node - I think that kind of surgery is best done, if at all, after radiation). And if you do go get it later, it's more likely everything is dead and you are not liberating live cancer cells to go run around your body.
Thank you everyone, this is some really great information and does help with the decisions. DrMary, your option C sounds interesting, I will propose the question to the team and see what they think.
Yesterday we met for 2 hrs with the radiation doc, I have never met over 5 mins with a doctor before this cancer diagnosis, this team of docs are incredible, we never feel like they have to rush off to something else. The rad doc said he wanted to get a PAT Scan to get better info, so this afternoon I go in for that. He said he will go in and look at it at after it is done and give me a call with any updates, even if it gets late.
I spoke with the orignal oncology surgeon (non TORS guy)and asked him what he would recommend to his mother or child if they were sitting in my seat.... Option A. The radiation doc said Option B. So for those keeping score, 2 to 2.
Well, thanks everyone, I need to head to work.
Have a great day0 -
We are like twins...
Hi Husker Fan...I am in the same boat that you find yourself in...I just had my second opinion with Mayo Clinic, yesterday...The only difference in my situation is that they aren't real sure if they can get it with the DaVinci robot...They are looking at a Mandubulotomy and neck dissection...Using the free flap procedure...The Cancer Team is meeting on Tuesday to give me their recommendation, which I can already tell, will be different and more comprehenisive than my onco surgeon... Personally I don't want to go through radiation if I don't have to...From all the side effects I have read, I don't want to destroy my thyroid gland and other structures in my Head and Neck...Personal preference aside, I am going to take whatever approach I can to eradicate this beast from my life...I am not really afraid of having cancer, I am more afraid of the effects of it on my life and the people that love me...Good vibes and thoughts are being sent your way, and I certainly hope that you find peace in the midst or your battle...0 -
Hi HuskerHusker Fan said:Thanks for the encouragement and info!
Thank you everyone, this is some really great information and does help with the decisions. DrMary, your option C sounds interesting, I will propose the question to the team and see what they think.
Yesterday we met for 2 hrs with the radiation doc, I have never met over 5 mins with a doctor before this cancer diagnosis, this team of docs are incredible, we never feel like they have to rush off to something else. The rad doc said he wanted to get a PAT Scan to get better info, so this afternoon I go in for that. He said he will go in and look at it at after it is done and give me a call with any updates, even if it gets late.
I spoke with the orignal oncology surgeon (non TORS guy)and asked him what he would recommend to his mother or child if they were sitting in my seat.... Option A. The radiation doc said Option B. So for those keeping score, 2 to 2.
Well, thanks everyone, I need to head to work.
Have a great day
Don’t feel so bad I can’t get two doctors to agree on anything either, I guess they too all have their own opinion, and with my opinion that make three. After nine years of dealing with this stuff I have learned just about as much as my doctors know about my C.
Take care
Hondo0 -
Still Confused, or maybe starting to see a direction!Jahnsart said:We are like twins...
Hi Husker Fan...I am in the same boat that you find yourself in...I just had my second opinion with Mayo Clinic, yesterday...The only difference in my situation is that they aren't real sure if they can get it with the DaVinci robot...They are looking at a Mandubulotomy and neck dissection...Using the free flap procedure...The Cancer Team is meeting on Tuesday to give me their recommendation, which I can already tell, will be different and more comprehenisive than my onco surgeon... Personally I don't want to go through radiation if I don't have to...From all the side effects I have read, I don't want to destroy my thyroid gland and other structures in my Head and Neck...Personal preference aside, I am going to take whatever approach I can to eradicate this beast from my life...I am not really afraid of having cancer, I am more afraid of the effects of it on my life and the people that love me...Good vibes and thoughts are being sent your way, and I certainly hope that you find peace in the midst or your battle...
Hey Jahnsart (and everyone), the doctors all tell me that there is not just one definitive answer! I started out with 2 options that were equal, which in some ways is worse than the experts just saying “you should do it this way…”
After today’s PAT Scan, the radiation doc called me to let me know that he definitely thinks that I should not have surgery and should do Radiation with Chemo. The reason; the tumor at/in my left tonsil is bigger then thought and actually goes under my right tonsil. Therefore surgery would need to take more of the back of my tongue to get the appropriate margins. The rad doc still has to meet with the TORS doc Monday morning, but doesn’t see any reason to do surgery. He is afraid the addition removal of the back of tongue would make a long term problem of swallowing.
Good news: there are no other areas with cancer, scanned head to toe!
Other good news is the Lord is narrowing the options so the decisions become easier!
Thank you everyone for your great information and wonderful wishes. I am hoping to spend more time on here to read the wonderful information and encouragement to everyone!
Best wishes and prayers to you all!0 -
Blessings From Your Arizona NeighborJahnsart said:We are like twins...
Hi Husker Fan...I am in the same boat that you find yourself in...I just had my second opinion with Mayo Clinic, yesterday...The only difference in my situation is that they aren't real sure if they can get it with the DaVinci robot...They are looking at a Mandubulotomy and neck dissection...Using the free flap procedure...The Cancer Team is meeting on Tuesday to give me their recommendation, which I can already tell, will be different and more comprehenisive than my onco surgeon... Personally I don't want to go through radiation if I don't have to...From all the side effects I have read, I don't want to destroy my thyroid gland and other structures in my Head and Neck...Personal preference aside, I am going to take whatever approach I can to eradicate this beast from my life...I am not really afraid of having cancer, I am more afraid of the effects of it on my life and the people that love me...Good vibes and thoughts are being sent your way, and I certainly hope that you find peace in the midst or your battle...
Good luck, with what ever decision you make. I go for my first chemo infusion on Monday.
Linda0 -
Arizona Neighborosmotar said:Blessings From Your Arizona Neighbor
Good luck, with what ever decision you make. I go for my first chemo infusion on Monday.
Linda
Good Luck Linda on Monday. Hope all goes well!0 -
Thank YouKimba1505 said:Very Very Familiar.
Hello Husker Fan,
TORS caught my attention right away. I am a huge fan...because Mark diagnosed 4/2010 at age 53 with SCC left tonsil, stage IV HPV+ had TORS. In fact his surgeon pioneered the surgery and if you asked your surgeon, he probably was taught the procedure by Mark's doctor.
Anyway...I hear your dilemma...one OR the other...each doctor suggesting his/her area of specialization. Mark did both...and I will tell you what made him decide to do both. It was the radiology ocologist. Mark asked all the same questions you did; but his Rad Onc said do the surgery AND the radiation/chemo. Mark felt this was bi-partisan medicine at its best.
He did both. The surgeon felt he cleared the margins of cancer with the TORS and the following radical neck dissection. Mark then continued with 6 weeks of radiation and chemotherapy to give cancer that final kick.
I am happy to say that on July 20th Mark was 1 year post treatment with 2 clean PET scans behind him. (3rd scheduled for the end of August). He just celebrated his 55th birthday yesterday. He feels great.
You are right...there is great information, support, and experience here. Welcome...and I am sorry you had to find yourself here.
KimThanks so much for posting this. It's 6 years later, but if you ever read this, I wanted you to know you've given me a much-needed boost of positivity as I'm tired and sometimes it's hard to see the light at the end of the tunnel. My husband's story is very similar to your husband's; he is 16 days post TORS and 19 days post-dissection. He will be having chemoradiation for 7 weeks in the fall - again at UPenn (which is a crazy commute but we'll deal) - and it helps so much to be reminded of the success stories. Thank you.
0
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