My Dad has Stage 4A BOT cancer. He is currently being seen at Mayo in MN and we are having a hard time deciding a treatment plan. The surgeon says his tumor is operable....but he suggests doing chemo and radiation with it as well. He said if we elected to not do the surgery the results could be the same with just a tad more chemo and radiation. We are at a lost to decide wether or not to do the surgery. Did anyone else have to come to a decision such as this? what did or did not sway your decision?

We are not doctors. When in come time to make a decision, the person with the most information is your doctor. That means ask him if he was your spouse what who you do?

That being said, in my opinion, if the Doc can go for clear margins and no chem/rad, then I would have gone down that path. But Being HPV+ BOT the chance for good outcome with just Chemo/Rads is favorable.

My doc said go for Chemo/Rads only. He's thoughts were high rads BOT and neck was his best chance of no reoccurrence. Lower rads may be enough but why risk it.

Having surgery will also delay the start of chemo/rads, and you are going to radiate the surgical area. Surgery also introduces it our risks.

Chemo/Rad is brutal it will consume 6-8 months dealing with various issues. Please start doing all of the suggestions you has read on these posts. Having cancer is a full time job. So is care giving.

My advice is post often. The more the fine people know about your situation the better the advice is.

Good luck and see on the boards.

Welcome to OCF. You have found a great site to help you with info and support. While we would like to help, this is ultimately up to the patient. I know its not easy to select the treatment plan. It may help to go for a second opinion.

Please understand that we would like to assist but this choice is not ours to make. The best thing I can tell you is to get educated from both the forum and main OCF pages and learn so you can help in making an informed decision.

Best wishes!

Has the Primary been tested for HPV?

Are there nodes involved?

Has Hockeydad says none of us are docs only battle tested and Mayo is a well respected place so he's in good hands.

He is HPV+ and there is lymph involvment. Well at least one of his lymph nodes is swollen so I guess we don't know if it's spread there or not. He had one last final talk with the Dr and he wouldn't tell him either way which he would choose. We are afraid of the risks with surgery. but afraid that the rads and chemo won't get it all indefinitely. This is an agonizing decision. Can anyone tell me why they decided against surgery? Or why they wanted the surgery. I know he's in good hands...but we just dont know which hand to choose.

Because Chemoradiation is just as effective killing this type cancer as surgery is, especially with HPV, plus the BOT is integral in swallowing, and can be impaired from surgery, and not function as well or at all, and be debillitating, and surgery can be reserved as a last resort, if needed. The extent of surgery is not really known until it's being done, and can be quite extensive due to the deep musculature of the BOT, and they would have to do the split lip surgery, if not by TORS or Micro laser surgery for small tumors. It's the patients decision too, not that I don't listen, and got several opinions for a recurrence, and wound up taking the 3rd offer that I thought would be the safest, with the best outcome, which was even more aggressive than the first two offers. It's your choice to make an informed decision between the offers, and you have to trust and have faith in your doctor, whoever you choose, and once committed, don't look back or 2nd guess yourself.

Good luck.

Most of us diagnosed with HPV+ SCC BOT Primary with nodal involvement do NOT have BOT surgery and FEW even are advised to have a Neck Dissection before chemo/rad.

Everyone is different. I had an unknown primary, most likely oropharynx, HPV+. My team felt that surgery first was the best bet. Their logic was, "If we remove 99% of the cancer, that's less treatment we'll have to do." I had a selective neck dissection and the tumors were extracapsulated so I had chemo/rads anyway but 30 rads and 6 weekly chemo infusions. based on the aggressiveness of my cancer, I'm glad they went in and got it.

Good luck, positive thoughts and prayers whatever is decided.

"T"

Ditto... if it's non HPV you should be okay without surgery, I would ask them to make sure they give your dad cisplatin or a cisplatin Erbitux combo, then because it is the gold standard. I know Erbitux is offered, however from what I gather it only works on people with certain markers. Cisplatin or carbo has a more potential issues with it but it is tried and true. best of luck,

Cheryld I don't quite understand what you are saying. If his tumor is not HPV, then he's fine without the surgery? His tumor is HPV+ and surgery from what we have researched is not the treatment status quo for most HPV+ tumors. This Dr at mayo is one of the very few in the world that will reccomend surgery for HPV+ tumors. So we decided against the surgery and will stick with the main stream trmt plan of 35 rad trmts at 70grys with 3 doses of ciplatin. Im frusturated that there isn't more evidence of a cure rate with the surgery and decreased amount of rads/chemo. Verses just sticking with rad/chemo trmt. I wish there was more research done into both trtmt method options so that people can look at concrete evidence when they are faced with this decision. I was frusturated the Dr just kept telling them the choice is theirs. I felt like with his expertise on this he should have steered them one way or another. Now we are always going to wonder what would have been if we stuck with the surgery route. Ughhh!!!!

Hi klr, sorry about your Dad's diagnosis. It's fairly common for oral cancer patients to be confronted with treatment choices these days, because there are huge controversies and major developments, especially the discovery of the role of HPV, that are changing the field. I faced this twice. The first time I had to choose surgery plus radiation and maybe no chemo, or radiation and chemo. That's one of the big controversies out there, and surgery is becoming more common now that TORs offers a less invasive option in some cases.

The second time I had to choose between two chemo agents, Cisplatin and cetuximab.

I think it's so unclear which option is better, or whether any option is better sometimes, that docs want to leave the choice to the patient. That doesn't make it easier, I know. But my point is that your doc is giving you a choice because the side effects and risks vary, but the data puts the outcomes in equipoise right now. Unfortunately, there's no easy path to treat this cancer no matter what you choose.

Good luck, and keep us posted --

M

No - if the tumor is HPV - they sometimes forgo surgery becaus HPV related cancer responds well to radiation. Your comments were right regarding surgery not being status quo for HPV related cancers. Go with what your plans are though I would ask your team at moffit why they recommended surgery - maybe they are having more success with it.

[quote=Cheryld]No - if the tumor is HPV - they sometimes forgo surgery becaus HPV related cancer responds well to radiation. Your comments were right regarding surgery not being status quo for HPV related cancers. Go with what your plans are though I would ask your team at moffit why they recommended surgery - maybe they are having more success with it. [/quote]

I don't think there is a status quo right now. UW Madison (CCC) is routinely treating HPV + BOT cancer with surgery followed by radiation, and there seem to be quite a few people with BOT cancer on the forum who have surgery as a primary treatment followed by radiation with or without chemo. The NCCN guidelines don't appear to distinguish treatment options for HPV - v. HPV +, unless they've been updated or I'm missing something. http://oralcancerfoundation.org/treatment/guidelines.htm

My understanding is that most BOT tumours are large at diagnosis.
Surgery would result in quality of life issues and deficits in both speech and swallowing.
Current research and guidelines especially for HPV + ve BOT tumours , show good outcomes with chemo radiation alone.
Surgery is then a backup, or salvage , if treatment fails and /or the tumour recurs.
Please have no regrets. Of course it is Human to do so, especially if you do end up being one of the unlucky ones who do have a recurrence. I do sometimes wonder if we should have initially gone with a total Glossectomy instead of the curative chemo rads offered . But , hey , that's the way the cookie crumbles and we are definitely in the very small majority of people who suffer treatment failure.
Thinking of you and your Dad,
Tammy

We were told it is not normally recommended for surgery with HPV+ patients. There is a norm for it. Tammy is absolutely correct! Although a given doc may have their own way of thinking, but then I would want to know how many cases they have treated.
Kathy

Of the 4 cancer centers and 6 doctors I saw in NYC when diagnosed 1 doctor recommended surgery amd 1 thought he could get it with surgery but wanted to see more from my scans (and they did additional scans before recommending chemoradiation). Every one presents differently and has different characteristics to their tumor. It seems certain hospitals have switched from a surgery first treatment plan to one where the first line is chemoradiation as they have not seen a survival benefit from 3 treatment modalities. For me, they went with additional scans amd recommened chemoradiation due to the potential for tight margins. One thing that was told to me was to try to limit the treatment modalities to 2 instead of 3. So surgery and radiation or radiation and chemo. The ccc that I went with recommended chemoradiation as they thought there was a decent chance I would still need chemoradiation after surgery vs just rads.

Here's a link to a good article that may be helpful. It summarizes studies conducted at Mayo and other institutions on the emerging role of micro laser and robotic surgery, and the pros and cons:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3394169/

Thank you Mama. Another item of mention is with transoral microlaser surgery, it does not interfere with future surgery or radiation, if needed, and can be done more than once, unlike conventional surgery and radiation sometimes.

How are treatments going?

My team decided to try Radiation along with Erbitux. and not do the surgery. Due to the fact that the cancer was stage IV. with met to one node in the left neck at the time. it was explained to me that surgery and Radiothearapy had similar outcomes. Well treatment failed so surgery was what they suggested next. That surgery was a fail. cancer is still just in the head and neck, but very aggressive. Cancer was found.(and I asked twice to make sure I had it right)in 33 of 36 nodes that were removed from the ND. If we only had a magic 8 ball that really worked we could foresee complications and whether or not it will work. But that is just a dream. So get as informed as you can. get second opinions. and make the hard decisions. Best of luck to you. Shawn U.

Thanks Everyone for all of your advice and thoughts. It helps to know I'm not alone in being terrifed that we will not make the right treatment choice and regret it forever. I feel like given the info we got from both the Dr and through extensive research we made the best decision for us. I'm on my knees praying that this was the right one and I get many years left with my Dad.

That being said, he began his first cisplatin and rads trmt today. So incredibly hard to watch him go through this. I have cried I think as much as I can cry. But I am hopeful that he can withstand the side effects and we can just get through each day.The have already given him a slew of meds and the cisplatin hasn't even begun infusing yet. So I hope that all of these will help him. I am terrified and sad, but I have nothing else to do but wait and watch. Any advice on what I can do to help him is greatly appreciated. Keep your fingers crossed for us!

Best of luck with the radiation etc. saying prayers and keeping fingers crossed for you and your family that all goes well.

My heart goes out to you KLR, I know firsthand how hard it is to see a parent face cancer. Many, many people right here on this forum have endured exactly the treatment your Dad is undertaking, made it through the hard spots, and gone on to resume full and happy lives. Your Dad is going to make it too, with your help.

(((HUGS)))

Mama

Pay attention to any change in his hearing. Even something small could be potentially a problem. Cisplatin is known to cause high frequency hearing loss that is permanent. Ask him to let you know if he hears buzzing or anything unusual.

With cisplatin, make certain he is drinking lots of water to flush out the poison from his kidneys. Every single day a minimum of 48 oz is necessary as is at least 2500 calories. Around chemo time, it doesnt hurt to up the water intake even a little higher to say 60 oz a day. Better to drink another 12 oz than risk having permanent kidney damage.

Stick with us and we will help you get thru this!!!!

Best wishes!!!

Thank you Christine,Mama, Cheryl, etc. He made it through last night and all of today with no N/V/D. They brought him in for an IV bolus infusion...1 liter this am before he had his second rads trmt. When does the N/V/D start from the Cisplatin? It is usually right away or a couple of days post infusion?

They are bringing him in again tmrw for another IV Fluid Bolus and again on Friday.So it seems like they are on top of his fluid intake. I'm sure next week will be a little harder to drink, and then so will the next week, and so on and so forth. But that's what I'm here for.....to push him. I don't care if he hates me by time we are all done with this. At what point into Rads trmt did it begin to get difficult to swallow? I've heard 3-4 weeks but know all of you are the experts!!

Thank you all for the kind words and inspiration. I am so glad I found this site for more than a 1,000 reasons. I would feel so alone if it weren't for you all! Thank you Thank you!!

Getting those extra fluids makes a world of difference. I was so happy our MO insisted on them. Kevin drank quite a bit of water, but he still couldn't keep up.
We, as caregivers, understand the terrified and crying. It is absolutely the worst feeling to be so helpless and have to watch our loved one go through this, but they make it! It does get rough but stay with us and we will help you through it.
Hang in there.
Kathy

Everyone is different and you will hear that phrase over and over as time goes on. Most members began with swallowing difficulties I would guess at about week 4 and it gets progressively more difficult as time goes on. Its a gradual decline, so at least its not like the patient wakes up one day and is unable to swallow. The treatment facility seems to be really excellent with taking the initiative to give your father extra fluids. Almost every center, the patient/caregiver have to request it or its not given. In my opinion, this should be automatic for all OC radiation patients beginning with week 1.

As far as when the N/V/D hits, it usually takes anywhere from 4 - 10 days after the infusion with the 3 bag method. Dont be surprised if the second dose is lowered and the third eliminated. This seems to be fairly common, I did experience this too. When the N begins to hit, give the nausea meds even if he isnt feeling bad. Continue to give them on schedule for days without missing a dose. If you get behind on the meds too often its next to impossible to get ahead of the sickness and when puking its awfully hard to keep the meds down. If V sets in.... remember everything that comes out must go back in, thats in addition to his usual daily intake.

Glad to hear you are ready for some rough days ahead. You will now be known as "the pusher" Do what is necessary for the best interest of your father even if at the moment he does not agree. I tried to quit rads but my son and nurse wouldnt let me. If I had my way I would have stayed in bed and buried my head in the sand and snoozed thru the whole thing until I felt better again. That mentality put me in the hospital. Wish I had my own pusher who could have prevented me from being too stubborn and lazy to get up and eat/drink when I was supposed to.

Hang in there! We are in your corner ready to help you and your father.

N,v,d is definitely different for everyone - cisplatin made me feel mildly nauseated for a few days after. That's it. I was fine - another friend with the same treatment had his head in a pail vomiting for the entire 6 weeks. So that's the range sadly. My MO had me In overnight on chemo days and fed me bags of fluid not sure if that's why the symptomology was minimal - but I have to say I was well hydrated as I was in the bathroom hourly!! hope things stay ok -:)

Mamacita, you had TORS & then radiation. Are you now clear of the cancer? How did the biopsy go?