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#21166 09-20-2006 02:30 PM
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My husband was diagnosed with oropharyngeal squamous cell carcinoma on the right side of his mouth, in the tonsil area. He underwent surgery on September 5th to remove as much as they could. They called the procedure a " wide local excision of the right oropharynx". Part of the pallet in the tonsil area was removed and it seems the tumor was in the soft pallet area and not in the bone. They don't feel that it was in his lymph nodes either. They classified the tumor as a grade 2.

Ever since the surgery my husband has had a hard time talking, it is very nasal and hard to understand at times. Will his voice return to normal after time goes by? Also, if he drinks anything too fast it come out of his nose. They said that would eventually get better. Has anyone else ever had problems like this? It gets him very frustrated at times.

Now the other questions, they want to start 8 weeks of radiation and chemo, (4 days radiation/1 day radiation and chemo). The doctor sent him to an oral surgeon who suggested he have 9 teeth removed. (1 widsom tooth & 2 molars on top right, and both bottom wisdom teeth and the two molars next to them). There is nothing wrong with his teeth and after reading some of the postings here, we don't know if he should go ahead and have the teeth removed or keep them.

We are taking all our reports, etc. and going to Indianapolis for a 2nd opinion next Tuesday, just for to be sure we are on the right track.

Are there any particular questions that we should be asking when we get over there? Right now we are sort of in a fog so any suggestions would be greatly appreciated!!!!!!

Thanks in advance - I have a feeling we will be getting alot of good advise, after reading some of the other postings.

Susie

#21167 09-20-2006 02:57 PM
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Susie, Since I am not a dentist [maybe Jerry will chime in here] I haesitate to say much, but I do know that wisdom teeth can come back to haunt you-cancer or not- have they said why the molars need to go too? As far as questions to ask next Tuesday, my husband would tell you to ask about quality of life issues [risks] associated with the suggested treatment plan, so that you understand what the procedures mean long term. Sometimes those answers are scary, but most times they are manageable-and prepare you both for the road ahead. My advice is to get the overall picture now and then you can deal with the day to day stuff as it happens- and we'll be here. Take some deep breaths - Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#21168 09-20-2006 03:45 PM
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Stating up front that I am only a well informed patient, it appears to me that the choice to do the surgery first (obviously made by someone of a surgical discipline and training) removed anatomical features in your husband's mouth that are essential for the normal functions that we all take for granted. Like isolating the nasal passages from the rest of the oral environment, articulating his words easily, etc. These days at major ccc's it is more common to have radiation and combined chemo first. This approach preserves as much of the normal anatomical structures as possible, and surgery is left for the end of all this after a determination that the radiation etc. has done the job completely or not. There are still some institutions that will do a surgical neck dissection as a security measure after all is said and done. Surgery first inevitably ends up with long term quality of life issues, and for these reasons when scans (you don't mention how extensive a work up he had before someone brought out the knife) lead a multidisciplinary team of doctors to believe that going with the radiation first (no bone involvement is usually a main criteria) has the best chance of maintaining normal functions. That does not mean that radiation itself does not lead to some long-term issues like life long dry mouth etc.

Depending on what structures where removed in the soft palate and oropharynx, there are appliances that can be made to help restore some of this, but they will not be made until after radiation now, as the tissues will be too sore from the radiation to wear them, and there will be additional tissue contour changes as treatment continues. That means that they would have to be remade again later. So he is likely going to go with these restorative appliances till the end of things if they are necessary.

There is no reason to extract healthy dentition if the patient seems able and willing to be extremely careful about hygiene the rest of their lives. Losing a tooth to periodontal disease after treatment can lead to a non-healing wound and very severe consequences. So old school docs pull them all so it is never an issue, others (like mine) realized that I was dentally aware and would be on top of my hygiene knowing the consequences of failing to do so. 3rd molars are another issue, I kept mine, but they were horizontally impacted and there was never going to be an issue of them erupting into my mouth and causing problems. Given that any radiation treatments will have to wait until the 3rd molar surgery is healed, I might have asked why they didn't take them out while they were doing the rest of the surgery.... it would have moved you into the rest of the treatment process faster.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#21169 09-20-2006 04:35 PM
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First of all, I want to thank you for your advise. Looking back, I wonder now if we did the right thing by going ahead with the surgery. The doctor is a very good Ears-Nose-Throat doctor and surgeon. We first went to him after going to our regular doctor who was treating my husband for sinus and allergy trouble. That's what we thought this was all about. The ENT doctor had set up my husband for a sleep apnea test, since he had started snoring pretty bad. Also he was having pain in his right ear and jaw and couldn't open his mouth very wide. One doctor said they thought he had arthritis in his jaw.

On our follow-up visit is when the doctor noticed the tumor. According to him, it evidently started deep behind the tonsil area and had just surfaced enough where it could be seen. My husband had said for about a month that it felt like something was in his throat. This is why they scheduled the surgery to get this out, I think he was afraid it would cause trouble with his breathing.

We were not prepared to find out that this was something malignant and cancer. Maybe if we had of we would have gotten a second opinion before going ahead with the surgery. I guess I don't feel that we were very well informed about the complications, etc. and didn't think about them because we thought this would just be a routine surgery.

After the surgery, the doctor told us it was malignant and that my husband would need radiation and/or chemo. He said he was confident that he got over 95% of the growth, and he felt it was contained in that one area, but said he would have to use the other treatment to get the rest, due to the fact that it was pretty deep, I guess. So this is where we are. If the tumor had to come out right now and that was the right thing to do, then I can deal with that. But now I am wondering if we were wrong and did we screw up my husbands voice unnecessarily. The doctor did say that it should come back somewhat but did know if it would come back like it was. I realize this is a minor detail, considering what he has to look forward to, but down the road, could some reconstructive surgery be done to correct this?

As far as the teeth, the wisdom teeth have never come up and at the age of 56, I don't think they ever will, and he has never had any trouble with them. The dentist said that the molars would be getting so much radiation that they should come out. If that is the case, I can see maybe on the right side where the radiation will be centered around, but why on the left side and the top. The dentist did say the top teeth don't normally have trouble because the veins are better than on the bottom.

Thanks, Susie

#21170 09-20-2006 04:49 PM
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Susie, Just this one thing to share with you that I think is VERY important- it is NOT going to help you to second guess or look back at this point. You both need to go forward with the best doctors available to you and the best attitude you can muster. What has happened before is done, other than being a reference for the next action. Look forward-not backward. It is really important that you have faith in the people treating your husband. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#21171 09-20-2006 05:36 PM
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He clearly had all the very classic symptoms. I don't understand the doc's logic about the maxillary teeth vs. the mandibular ones. The radiation is not going to kill off the teeth. It is an issue of destroying much of the microvascularization in the bone surrounding the teeth with the radiation. This is what leads to healing issues should one become compromised down the road and lost. There is a difference in the density of the cancellous bone in each arch, but I have never heard of this being criteria for keeping one or the other of the teeth in the upper or lower arch.

JAM is right. You are where you are, and the focus should not be on if what this guy decided to do or if it was the best choice or not, it should be on getting in the hands of a TEAM that will take things from here. There are many postings here you can search through regarding the reasons for a multidisciplinary team at a major cancer center being the best choice. I still recommend that is where you end up. The main reason is that you will get multiple opinions from a tumor board that will be composed of doctors from different areas of training, and from that you will get the optimum treatment plan. Others will likely post here in the AM related to questions you should ask, but one that comes immediately to mind is if he is a candidate for IMRT radiation, something that will have fewer long-term consequences.

As to your question about surgical reconstruction, some things are possible, grafting from other areas etc. but this should not be an area of concern for you right now, just getting into the right place with the right team and finishing what has happened to this point should fill your windshield. There will be time enough once you


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#21172 09-20-2006 09:15 PM
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Susan
I

#21173 09-21-2006 02:08 AM
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Susan,

I emphatically agree with the posts above about seeking out a team opinion from a CCC before continuing with further treatment. As part of that, I would push back for a definitive rationale about removing teeth if, as you say, there is nothing wrong with your husband's teeth right now. I had conventional radiation 17 years ago (before the more targeted forms of radiation, such as IMRT, were available). This included radiation to both sides of my face, and my neck. To this day, I have not had a single tooth removed -- ever (and I'm 56 now). I've tried to be very disciplined about oral hygiene, and I have at least quarterly teeth cleanings, along with checkups by a periodontist twice a year.

If you haven't already, you might want to check out the "Getting Through It" topic on this forum -- it will probably give you a lot of suggestions about things you want to ask next Tuesday. Also, there is an enormous amount of up-to-date information beyond this forum itself if you click on the link to the homepage (at the bottom of the screen) and check out the topics there.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#21174 09-21-2006 05:12 AM
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Thanks for all of your help so far. You have given me alot to think about and have helped to clear up some things, also. I will ask about IMRT radiation and see if that is possible. Tuesday we go to the Indiana University Cancer Center in Indianapolis. Has anyone had any experience there? I am actually looking forward to going to see what they have to say. One day at a time, right!

Susie

#21175 09-21-2006 05:39 AM
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Hi Susan,

I'm sorry to hear that you are joining us but welcome. For what it's worth, my husband also has cancer of the tonsil with involvement of the soft palate and the base of the tongue. He had surgery first - and that WAS the recommendation of the tumor board at a comprehensive cancer center. Please do not think that you have screwed anything up here, you most definitely have not. Brian has already clarified that's not what he meant to imply.

Amy is right that we need to look forward, not backwards. Every case is individual and there is no universal treatment or one size fits all. Some kind of combination of surgery, chemo and radiation is typically done DEPENDING on the stage, level of invasiveness, nature and location of the tumor.

No 2 people have the same exact cancer so that's important to remember as well. While it's very valuable to share our experiences and treatments with each other, we are not there looking at the pathology reports and the clinical symptoms/medical history with the physicians, patient and family. You need to form a relationship with a medical team that you are comfortable with and keep our very well intended advice in perspective as just that. We're patients and caregivers who have been there and care enough to want to help each other but we're not your medical team. Brian has done all of us such a tremendous service with this website and his willingness to continue to share what he has learned over the years.

It's good to get a second opinion when you are able to do so but that's not always going to happen. You have one scheduled for next week so that's fine. My best advice to you is find out as much as you can about this disease and talk to the physicians about the pros and cons of any treatments they are recommending, but go with your gut when making your decisions and know that you did the best you could with the information you had available to you at the time. You're going to have enough crap to deal with over the coming months, don't add undeserved guilt to it.

As for the side effects, yes they are common especially since his surgery was only Sept 5th and it's still healing. Your husband has all kinds of swelling and trauma in his mouth right now. Jack experienced the nasel reguritation in the beginning until the swelling/healing all settled down and he learned how to position his head while swallowing. He also went for speech therapy to strenghten his swallowing and his soft palate. Swallowing is going to be a relearning process and some foods work better than others. Also he needs to take his time and not expect to rush through any meals. Brian makes a good point that future reconstruction is not your priority right now, it's getting started on the radiation/chemo.

I am happy to tell you that Jack's graph area did heal eventually and that they don't feel he needs the obdurator prosthesis as they originally thought 7 months ago. His speech is slightly more nasel than it was but you'd have to know him well to pick that up. Again, there are exercises a speech therapist can do with him on these issues.

They wanted to remove his wisdom teeth as a precaution but he refused because they were healthy and he was committed to doing the meticulous daily mouth care that will be necessary due to the radiation damage. That's also settled down into a routine that Jack is now comfortable with. It was explained to us that keeping the teeth meant a serious committment to the daily mouth care and as long as your husband is willing to do that it should be okay.

Radiation and chemo also cause major side effects so you need to ask what they are and when they are likely to develop. "What can we do to be proactive in combating these side effects" is a good question. You will want to ask about anti-nausea drugs, and the likely impact of radiation on your husband's swallowing. Jack had a PEG tube inserted because they knew his swallowing would deteriorate with radiation and he thought it was a godsend. It was just removed last month and the swallowing is a work in progress but getting better. Not everyone gets a PEG tube but if he doesn't you need to find out how he is going to maintain his nutrition and hydration during treatments.

The getting through it project has some great information on what I wish I had known so you should read that. Also the home page has wonderful information.

Please feel free to send me a private email and best of luck to you and your husband next week.

Hang in there, it does get better. Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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