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Note:  If you would like to read about someone who has gone through the radiotherapy for recurring parotid gland tumors, go to Julie's Story.

During my first check up, three days after surgery, the surgeon strongly recommended I receive radiation treatments. His reasoning is as follows:

    • The pathology report indicated there were "positive margins". In other words, upon examination of the removed tumors, a couple areas of the tumors had bad tissue all the way to the edges. What they want to see is healthy tissue all around the removed tumor to ensure it has been fully removed. Much like margins on a printed page. In my case there were two tumors sandwiching the facial nerve. The only healthy tissue between the tumors was the nerve. My understanding is the nerve was peeled away from the tumors. While there was no visible signs of remaining tumor, there could very well be cells remaining.
    • The chances of the tumor coming back increase with each recurrence. The first time you have a tumor removed there is only a 10% chance it will return. Next time it is 25% then 40%, etc. I believe this is statistical information, I donít know why the chances increase. With each surgery there comes more scar tissue. The scar tissue makes the removal more difficult and when it starts getting into the area of the facial nerve the chances of damage to the nerve increases.
    • The tumors can become malignant. The surgeon says when that happens the surgery is a lot more involved (removal of lymph nodes and other malignant tissues), and he says I donít want to go there. Since my tumor has shown its propensity to return, he believes that radiation treatment is the prudent thing to do.

The surgeon explained that he was not an expert in radiation oncology but thought I would under go a relatively low level dose since the tumor was benign. Consequently he believed the side effects and risks would be less than those who are treated for malignant tumors. I was in for a surprise when I visited the Radiation Oncologist he recommended.

I was referred to a local Radiation Oncologist. She had been briefed ahead of time by the surgeon and had read the pathology report. She asked me my age, number and age of children, do I smoke or drink, and the condition of my teeth. She then took on a very serious look and explained what she would recommend for a treatment plan and what the possible complications would be.

The plan would be 6 weeks of treatments, 5 days a week. I would be in and out in 30 minutes each day.  The dose would be around 60 Gy, about the same as that used to treat cancer. It would be a conventional type radiation treatment (blast straight on through). They would have a mask molded to fit my face and it would be used to lock my face into the same exact position for each treatment. The risks of complications are high and include, loss of all salivary flow since the gland on the opposite side would be hit with a dose in the low 20ís and total destruction is in the mid 20ís. With the loss of salivary flow comes the loss of teeth since the saliva helps to protect the teeth. I would need to see my dentist ASAP and should consider the removal of any teeth that were in poor condition and candidates for removal later in life. Evidently, radiation effects blood flow to the teeth and removal becomes more complicated after the treatments. And then there is the slight chance of cancer in the out years due to the treatments. The chances increase with time after the treatments. In other words, the longer you live the higher the risk. So age is a consideration. Regarding the "magic question", how many of these have you treated, I could not get a straight answer. The closest she came was "very few". She offered to refer me to a second radiation oncologist closer to where I work. I accepted the offer because I wanted another opinion.

I called the surgeon immediately after the visit above. First of all I wanted to know what this business was of "positive margins". Had he not fully removed the tumor and why didnít he tell me. Secondly, was he out of his mind for sending me to this maniac who was going to destroy everything in my head! I spent a stressful two days trying to get a hold of him by phone. When we finally connected he explained that he had not left visible signs of tumor. The reason for the positive margins was that there were two tumors against each other with the facial nerve sandwiched between. He removed everything he could. Secondly, he was surprised by my assessment of the oncologist and he would give her a call. If I wished, he would refer me to a specialist. I explained she had referred me to a second oncologist but yes I wanted to see an expert. In the end, he never made the referral to an expert but I was able to get one from the second oncologist.

I spent a week of nights on the internet researching radiation treatment of recurrent parotid gland tumors. I would print out the technical papers and read them over and over, looking up the doctor jargon, trying to glean as much information as possible. I came to the conclusion that 1) the treatments are controversial for benign tumors and 2) The plan the first radiation oncologist was recommending was just plain wrong because there are other techniques which can spare the other glands.

So off I went to the second local radiation oncologist, armed with information. She asked the same questions, had spoken with the 1st oncologist and had read the pathology report. She recommended the same treatment plan and warned of the same side effects. Regarding the other techniques, she did not have the equipment for IMRI and she thought the "wedged pair" technique was old technology. She was very honest about the number of benign parotid tumors she had treated. Zero. I asked her where I could find someone who specialized in head and neck radiation oncology. She told me that Gainesville Florida had the best department in the country and made arrangements for me to see a doctor there.

After this appointment I drove across the street to a Periodontist (spelling?), I had seen in the past. I told him I was considering radiation treatment to the parotid gland. While I have a few crowns and fillings he did not see the big deal. He gave me a brush on fluoride to protect the teeth.

With the Thanksgiving Holiday looming it was three weeks before I could get in to see the radiation oncologists at Gainesville Florida. I believe the first person I saw was an intern. She had read all the reports. She recommended a 30 to 40 Gy dose using wedged pair or IMRI. They were equipped with both. She recommended I see "their dentist" and I may need to have teeth pulled. Then I saw the specialist I had driven 7 hours to see. He explained that he had 8 physicists on staff to prepare the radiation treatment plans. His thought would be to use a wedged pair technique. They have only had their IMRI machine up and running for 6 weeks. He would use a dose of 70 Gy over a 6 to 7 week period and may even consider treatments twice a day. He wants to be aggressive because you can only have radiation treatments once. If I chose to proceed he would review the treatment plan with his partners and physicists. He would also want to speak with the surgeon to see if visible signs of the tumor were left behind.  If so they would want it removed before the treatment.  They only want to treat cells, not masses.   Regarding the opposite gland, it would receive nearly zero Gy and he was absolutely sure I would not lose itís function. He believed the chances of cancer caused by the treatment at twenty years out would be 1 in 400. He did agree that my relative young age is a consideration. When I pressed him for a plan B, and really mean press because he believes that the radiation treatment is the best plan, he recommended I have an MRI done in January and then one at least every six months for the next 5 years. The idea being to catch it early if it returns. He agrees the chances of it returning are 40% without treatment and 5% with.

It was a difficult decision to make but I have decided to not to undergo radiation treatments.  Iím convinced that Gainesville is the place to go for treatments but Iím not prepared to spend six weeks there and Iím not keen on giving up my teeth and taking the other risks associated with the treatments at this time. Iíve informed my surgeon of my decision and he has scheduled my first MRI for January. He is clearly disappointed in my decision but is supportive and respects my decision since I have investigated it so thoroughly.  He also has complete respect for the people at Gainesville and agrees they are the best in the country.  As to their using the high dose of 70Gy, he said they can get away with it because they are good.

. Some of the questions I asked the doctors in Gainesville were as follows:

  1. Are you really the best in the country and why?  They replied that they have the equipment, the staff, and they specialize in head and neck radiation oncology.
  2. What equipment do they have?  See their web site (my comment, not theirs).
  3. What dose would they use?  70Gy
  4. Would I lose the functions of my other parotid glands? Absolutely not.
  5. Is age a consideration?  Yes but the chances of cancer at 20  years out is 1 in 400.
  6. Will it effect my damaged nerves that are now healing?  No, nerves are not effected.
  7. Could they recommend a place closer to home capable of applying the same plan?  Maybe in Charleston SC.  There is a doctor named Charles Neal there.
  8. Cost?  They would send me an estimate.
  9. Is there a plan B that does not involve radiation.  No.
  10. No choices?  Not really.
  11. What should I do If I chose not to receive treatment?  Have an MRI 3 months after the surgery and again every 6 months.  Try to catch a recurrent tumor early.
  12. From what I've read it seems the chances of recurrence are about 40%?  I would agree with that.
  13. Have you treated this condition before?  Yes we probably treat 75% of these in the US. 

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