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Hi, I'm new to this board. I was diagnosed with adenoid cystic carcinoma almost 1 year ago. I had 6 1/2 weeks of radiation after having my right submandibular gland removed in April 05.
Was wondering if anyone out there has any words of wisdom!
Thanks and wishing you all the best of health! smile

Babyjane

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I was diagnosed with adenoid cystic carcinoma (ACC) in August 05 and had my parotid gland removed in November 05. I also had 6 weeks of radiation, completed about a month ago now. I did not go to MD Anderson, but I did find that they had a support network that you can call. They will take your information and match it up with someone with very similar characteristics and have them contact you. Soon after I was diagnosed, a woman with ACC similar to mine contacted me, 15 years post treatment, gave me advice, insights, and a source of information from someone who had been through much more than I. This was a great source of hope during the initial "info gathering" phase, since much of the initial reading that I did quoted a 15% survival at 15 years. I'm sure you are aware that info is hard to come by with this disease, if you can find someone in the medical field with access to full journal articles, those were the best for educating myself technically. Just educate yourself on how to read and interpret studies and statistics correctly!

I welcome words of wisdom as well, you don't see a whole lot of ACC discussions here, but would like to!

Mary


Dx 8/05 Adenoid Cystic Carcinoma, parotid, T2N0M0, 2nd surgery and selective neck dissection 11/05 clear margins, no perineural invasion, 54 Gy's rad
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Hi Mary, thanks so much for responding. I contacted a Dr. at the University of WA. His name is: George Laramore. He specializes in ACC. A wonderful man. Gave me some great advise and answered several questions. However I would be very interested in contacting the support network at MD Anderson. Do you have the phone # of the person I'd need to contact? If so would apprecitate it very much!

Yes, the 15% survival rate after 15 years scares me a lot! I was diagnosed at age 45 and it's amazing how 60 sounds so young to me now! I did have perineural invasion and my margins were within 1 mm, too close for comfort! I try to keep a postive attitude, and not let myself dwell on it. None of us know when our time is up, so we should all live like it could be our last day!
I hope you're doing well and congratulations on finishing your radiation treatments!! I'll keep you in my prayers! smile
Take care,
Beth

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It is the Anderson Network and their number is 1-800-345-6324. They will take your info and have someone call you back in a few days. Let me know if I can help you with anything smile


Dx 8/05 Adenoid Cystic Carcinoma, parotid, T2N0M0, 2nd surgery and selective neck dissection 11/05 clear margins, no perineural invasion, 54 Gy's rad
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Hi - I don't have ACC, but my mom does. She was diagnosed almost 8 years ago, just before she turned 50. Hers did metastisize after about 5 cancer-free years, but it was so slow growing (I hear that's a characteristic of ACC) that they didn't have to treat it for 2 more years, until last fall. The tumors have now stopped growing again - whoohoo!

I agree about reading statistics carefully - 15% 15-year survival does sound scary. But remember it's the average of a lot of individual cases, some people may be older or weaker when first diagnosed, and many people do live with and post- ACC for years.

Congrats on being done with radiation, both of you! My mom says that was the worst 6 weeks of her whole cancer battle smile .

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Dear Light10, thank you sooooooo much for your reply. It's great to hear from someone (or about someone) who has had this cancer for a longer period of time. I am very happy to hear that your Mom's tumors have stopped growing. I hope she's feeling well and I will keep her in my prayers.

I hear what you're saying about the statistics, but when you're actually in the situation that your Mom and I are in it does weigh on your mind from time to time. I do and will keep a positive attitude. I believe that attitude is A LOT of the battle!

If you don't mind and you have the time I'd like to ask some questions about your Moms diagnosis.
First of all, what type of surgery did she have in the beginning and had the ACC moved into the nerve? Mine did, and the pain from that is what eventually led me to the Dr.

Does your Mom have a chest X-ray done yearly and is that how they discovered it had metastisized?
Also did she have any other test done besides the chest X-ray?

I contacted Dr. George Laramore in Seattle WA. He suggested a chest X-ray, and a MRI of the head and neck twice a year for the first two years then once a year after that.

One more question! How is she feeling now and how did they treat her this time?

Thanks again for responding and I wish your Mom the best. Please tell her she will be in my prayers.

Beth

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I agree that a positive attitude is a HUGE part of healing. Life is worth enjoying!

I'll try to give the medical information that I can, but I was only 15 when my mom had the first round of cancer treatment, and away at college when it reoccured - so I haven' been involved in much of the medical side.

Her main inital complaint was a sore throat that wouldn't go away, which unfortunately occured during the end of winter cold season/beginning of spring allergy season period. Eventually, though, she got herself to an Oto specialist and scoped, and they found her tumor. I don't know specifics of her surgery, but they removed the tumor from her tongue, which had spread a little bit onto her motor nerve, but not her sensory nerve. I don't know whether or not lymph nodes were involved. She then had 6 or so weeks of radiation. She was on a feeding tube for about 6 months, but very eager to get off it. We discovered fine meals at nice restaurants and decadent chocolate desserts were the easiest to swallow. wink (if you need ideas of good foods to swallow, we have quite a list going).

For the next 5 years she lived almost completely normally - aside from some eating/talking/dry mouth side effects, mostly from radiation scar tissue. She went back to teaching and working full time. I believe she had chest x-rays every 6 months (might've been yearly after a few years) and occasional MRIs. After almost exactly 5 years, a chest x-ray showed up positive for metastises in her lungs. However, they were very small and slow growing, so the decision was made to monitor but not to treat them until they became a problem or started growing rapidly. She continued to live normally for the next 2 years. This fall, however, she started coughing and having other breathing problems. She started a round of chemo in Oct (don't know the names of the drugs off the top of my head). The long and short of the chemo is that the tumors stopped growing, but didn't shrink, despite the 3 different drug cocktails they tried. Because ACC (or at least her tumors) were so slow growing, she had treatments every 3 weeks. Each treatment meant she felt like crap for about a week, then had 2 weeks to recover, regain weight, feel good about life again. They also gave her "time off" around the holidays so she didn't have to feel "chemo-ed" when the family got together. Now she's about 4 weeks post-chemo and feeling great, relatively speaking.

Hope that helps. And that your post-treatment recovery is going well! Is life moving back towards "normal" for you?


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