Investigators Sequence the Genome of a Rare Head and Neck Cancer

I have ACC and would like any updates you have and would like to be on an email list if possible??

In 2009 I had a nodule removed from my scalp. I was informed that it was a rare cancer of a sweat gland (adenocystic carcinoma). I had two additional surgeries before clear margins were achieved. Has your research included similar cancer?

Any news on LMS? Please forward to me. I am a patient at Sloan.

Similar to Linda above, my sister had a tumor removed from her right scalp - she had a rare cancer of the sweat gland. She had radiation therapy as there was no known chemotherapy for her cancer. She ultimately passed away. What is the risk that a sibling may develop the same cancer?

please check out the following books :"The China Study", "Gerson Therapy", and "80 10 10" these books link food, health and cancer.... food can feed cancer or feed your body!!!

Any research being done on myoepithelial carcinoma? I had tumors, treated with radiation, now it has matastisized to the lungs.

I am one year post op. Adenoid cystic carcinoma. Cribriform type with perineural invasion. Final path by Stanford. Six weeks 200 Gy rad.. completed june 12'.Would be interested in any information on this study & future trials. No sign of recurrence at this time. Thankyou!

A very dear friend has been diagnosed and surgically treated for apocrine sweat gland carcinoma of the face, neck and lymph nodes. Radiation will soon begin. The cancer continues to spread on his face, following surgery, with a new second procedure now scheduled, prior to radiation. What if the cancer continues, what does his future hold?

My late wife had ACC for 24 years of our 26 years of marriage. She was diagnosed in 1981 and passed away in 2005. The original location was the gland that secretes earwax. It spread to her lungs and brain. I'm glad they are finally making progress on this cancer.

I was diagnosed with cancer of the Parotid gland at the age of 11.
I have not been able to find one other adult survivor of this type of cancer as a child. It would be helpful and supportive for me to be able to communicate with someone I can truly relate to. Thank you for being there.

My son Andrew has been diagnosed with naseopharngeal carsinoma (spelling) which I understand is more common in south Asia. He has not traveled to these areas. He is a 34 year old male with two young children ( 21/2 years old abd a 6 month old.) dHe has WV medicaid which is not accepted at many ocations. Would his case be of interest to Sloan-Kettering? We are,of course, much disturbed by the direction of his malady. He took so long to diagnose it. Symptoms appeared as early as a year ago, but has just recetly been diagnosed.

My domestic partner of 10 years, Jay (47), was just diagnosed with Ameloblastic carcinoma of his right maxilla, (post-surgery on August 12,). This was determined based on the pathology report after the tumor was removed. Initially, the Physicians thought the tumor was Squamous cell carcinoma.
We have been meeting with both medical and radiation Oncologists in Pittsburgh, PA, neither of which has ever had/treated this form of cancer before. They both indicated they will treat it as though it "were" Squamous cell.
I was hoping that perhaps someone, just one Physician at your facility may have had a patient with Ameloblasic carcinoma, and could maybe shed some light on potential treatment options?
Any assistance you may be able to provide, we would be ever so grateful!
Ilook forward to hearing from you!

Diag. with adenoid cystic carcinoma in left submandibular gland? Is this unusual? Have had surgery and will be starting radiation.

My brother was just diagnosed with a benign inverted papilloma. They just removed this via endoscopic surgery. The Doctor is now recommending another surgery to remove bone from his face. The Doctor says it is good to do to lessen the recurrence rate. Is this a typical recommendation? Should my brother go for an additional (more invasive) surgery? Should he get a second opinion? Thank you!

This is great news. I am 6 months post-op and 1 month post-radiation. I had my tumor banked at MD Anderson. How can I get the genes sequenced?

10/11 ACC of parotid resected /peeled off my facial nerve without nerve damage, positive margins and perineural invasion. Neutron beam radiation in Seattle with Dr. Larimore and Parvathaneni. Now mets to all sections of my lungs too numerous to count and between CT on 12/10 and 1/7 all nodules have increased to double in size. Biopsy + for ACC lung mets; biopsy tissue does not have HER2.
Am trying to find what target therapy will work for this very aggressive form of ACC. I am completely symptom free, do aerobic exercise for 30 minutes and 30 minutes deep yoga breathing and feel fantastic. Any direction. I would like to see studies indicating stable disease versus response outcomes. Can you direct me.

I have to clarify my surgery date, it was in 2011, and the recent mets on CT are from 2013 Dec 10 and 2014 Jan 7. Hope that was not confusing. I have been in touch with the Adenoid Cystic Research Foundation.

I was diagnosed w/ACC 8/2011 had submandibular removed, had 7 wks of radiation. Came back 1 year later, had 2 more surgeries in 2012. Another tumor sprouted 3 months after these surgeries. Then went to see cancer specialist at Moffitt Cancer Ctr in Tampa. In Jan of 2013 had a facial dissection, and just had 1st MRI after this surgery, and I have another tumor at my jawline. Having my 5th surgery on 1/24/14 - I would like to see Dr. Chan when I come up to NYC this summer. Thank you

I will have to do that, when I know the dates I will be in NYC thanks

My sister was also diagnosed with ACC last year. She had seven weeks of radiation in Heidelberg, but could not have surgery. Now the tumor is back. We live in Europe. Is there any possibility that she could have such a targeted therapy by a specialist here or does you also treat persons from Europe? Thanks a lot!!!

I have a lump on the bottom of my neck and was diagnosed that it is a very aggressive tumor but I was not told what kind of cancer it is only that I will need very aggressive therapy as well I had a biopsy done also now I need to know how 5to treat this cancer

My 40 year old daughter (single mom with a 6 year old child) had left side of thyroid with a very large 8 cm mass removed in July. It was discovered that she has Hurthle Cell Carcinomas with 4 sites of angio-invasion. The right side of thyroid was removed in August. The cells were present in the right side but were not cancerous. Since Hurthle cell has a slow uptake of iodine, I am worried that thyrogen & radioactive iodine therapy won't be enough to destroy any cells that might remain. It is unknown at this time if it has spread. What would be your suggestion.

Since Hurthle Cell carcinoma has a slow uptake of iodine, wondering if thyrogen & radioactive iodine therapy is enough to kill any remaining cancer cells since the total thyroid was removed.

I am currently being treated with a clinical trial of Keytruda for ACC now in my lungs (City of Hope). It first presented in my throat, but surgery and radiation took care of this four+ years ago (USC). The jury is out on the success. We are also getting a second genomic study done - the first showed no markers. I'd be interested in the current status of the study noted in this article or another. Thank you. I am 55 years old, male, otherwise very healthy.

I have a IVa tumor on my parotid gland. I am still waiting to see a specialist. I also have a cyst growing on my scalp and a lesion on my cheek that may or may not be related (specialist should determine that I guess).
I'm interested in treatment options that might be available.