Questions for Parotid Gland Cancer Survivors

DeluxSurvivor

I was diagnosed with Mucoidepidermoid Carcinoma of my left partotid gland (deep lobe). Last week my surgeon removed the whole gland, plus left side lymph nodes in my neck as a precaution. The pathology report showed the intermediate grade tumor was totally encapsulated-- none of the surrounding tissue removed showed evidence of cancer spreading, nor were there any cancer cells in my neck lymph nodes. My head and neck surgeon has said given this, I could forego radiation, since he believes he got all the cancer out. Given radiation's invasiveness and that it would apparently limit future surgical and radiation options should the tumor reoccur, I am leaning towards not having it and instead looking into alternative treatments (i.e. detoxing the body/boosting the immune system naturally, Burznski Institute, Euopean & Mexican clinics, etc.). I, of course, am nervous about recurrence and would love to hear from anyone with this type of cancer, and what types of treatments you have had... or if you have any information on resources for cutting edge alternative therapies. Thank you!

nckaren

The story of my parotid cancer sounds very much like yours, except that the margin of non-cancerous surrounding tissue was very, very small. My surgeon didn't think I needed radiation, but referred me to one anyway. That doctor explained that my chances of recurrence were about 50% without the radiation. With radiation my cure percentage jumped to 98%. So needless to say, I went with the treatment. I am still questioning my decision. 7 months after completion of treatment, I am still suffering many side effects -- in fact I will be having further surgery in two weeks to help relieve one of these side effects. The radiologist downplayed these side effects -- so think hard and long and thoroughly evaluate any treatment you seek. The best of luck...Karen

SueBIE2

I was diagnosed in 1969 with surgery the only treatment. Complete removal of parotid and lymph nodes in the neck.
Obviously, I am still here, so for me, surgery only was a good option.

monika78

I had the same tumor type and pathology report as you. My left parotid gland was removed in 1978 at age 17. I had no radiation, just monitoring. No recurrence. Good luck to you.

jaylene19

I was diagnosed with mucoepidermoid carcinoma in 98 (age 19) with the same margins as you (supposedly encapsulated, etc.) I had surgery but did not follow up with radiation. I have now had 4 surgeries and a recurrence. After we found my recurrence, I followed up with radiation. This is the first time I have gone over two years with no scares. Radiation is a good thing!

lilypiersch

jaylene19 said:

I was diagnosed with mucoepidermoid carcinoma in 98 (age 19) with the same margins as you (supposedly encapsulated, etc.) I had surgery but did not follow up with radiation. I have now had 4 surgeries and a recurrence. After we found my recurrence, I followed up with radiation. This is the first time I have gone over two years with no scares. Radiation is a good thing!

Jaylene..boy you are so young! Can you tell me how the radiation went for you? What are these side effects that everyone keeps talking about?
for those people who did not go for the radiation, did you do anything alternative to radiation? Or has anyone heard of alternative treatments out there?

dartagnan

lilypiersch said:

Jaylene..boy you are so young! Can you tell me how the radiation went for you? What are these side effects that everyone keeps talking about?
for those people who did not go for the radiation, did you do anything alternative to radiation? Or has anyone heard of alternative treatments out there?

I see the question was written at the end of last year, so it may be too late to answer you, but I figure I'll throw in my two cents anyway. I was diagnosed with mucoepidermoid carcinoma of the parotid when I was 18. I had surgery first (that's when they discovered the cyst was malignant.) I had radiation treatments as well.

The side effects I experienced included:

1. Losing half of my hair. The back half.

2. I lost my sense of taste for about a year.

3. The side of my face turned black and peely - like a super duper sunburn.

4. I became very sensitive to the smell of water - made me ill to smell it. How weird, right?

5. I gagged through every treatment.

6. I now have TMJ problems (not sure if it is truly related, but it would make sense that it is. The muscles on one side of my face is stronger than the other, so my jaw keeps locking.)

7. The loss of my salivary gland has changed the Ph balance in my mouth, so flouride treatments are needed. And I had a couple of root canals after radiation.

8. I have an underactive thyroid. The doctors say that it's not related to the radiation. But the doctors also told me before I started radiation, that the thyroid was a concern and something we'd have to watch. I've encountered lots of contradictions from my doctors.

-EEK that all sounds horrible, but if you need radiation, you can deal with it.

clleary

Wow! This could be me! I was 15 when I was diagnosed (1995). I hit the ten year mark this August. I had surgery and my surgeon and oncologist recommended radiation because some of my margins had slow growing cancer cells in them. I had 28 treatments and have had no recurrences. Treatment was miserable and I do have similar residual effects as the others. I have Frye's Syndrome (sweating when I should be salivating), my teeth are rotting out of my head, I am ALWAYS thirsty, I have extra hard ear wax that occaisionally has to be sucked out by my ENT, and some numbness of the neck and shoulders, and of course, the tell-tale "sunburn" that comes with radiation. Would I do it all over again? Of course! I have lived 10 years and gone on to sing and dance and get married and go to college and get a job and do everything I was supposed to do - cancer free!

Monika1210

I was diagnosed in 1978 at age 17 with encapsulated mucoepidermoid carcinoma. Had nearly total left parotidectomy, no radiation. Except for an unrelated tumor over my left clavicle at age 20 (dermatofibrosarcoma protuberans), have been cancer-free since. Originally I couldn't feel the lower half of my face. Now only my left earlobe is numb, and I have Frye's syndrome for which I occasionally use antiperspirant on my neck! I know this is late for the original questioner, but hopefully will help someone else. Good luck!