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I have this rare type of cancer and I am trying to find any others that have this to get information about it. To date I have found only 2 others with this and both are in India. Am I the only person in North America with this?
My Doctors are unaware of any in the US.
I am asking for information on how to deal with this cancer. For now the only treatment is to do nothing because of where it is on my body.
I thank you for any help offered.
John, I have had some success in finding others with very rare cancers through the story section of our website. If you would be willing to share your story in that section of the site, it may help others with your cancer find you. You can read some other stories in this section by clicking this link:
Take Care, Sharon - Administrator
This post should not be considered medical advice. Review all information with your doctor.
- Forum Administrator
- Posts: 1432
- Joined: Fri Dec 05, 2003 1:33 pm
- Location: AZ USA
- Cancer Diagnosis: adenoid cystic carcinoma of the breast
- Relationship To Patient: Self
I was interested in the post form John and Ronnie as my husband has Microcystic Adnexal Carcinoma. It is a rare cancer and I have read a lot on line about it. He has the cancer beneath his nose to the left of center face above his top lip. They remover his top lip from corner to corner and the center part of his nose and back into his nose. Out wrdly it looked small but this is what they had to remove. Now they recommend radiation. What I read on line as people who have had radiation for acne develope this adnexal cancer as it is caused by radiation from the sun or having treatments. This cancer is resistant to radiation (it will not shrink the tumor) so why have it is my question. The doctor says it would cut off the blood and nourishment to the cancer. The radiation on cncologist says it will kill the cancer. Can anyone tell me of their experiences.
I have just joined this forum so my entry is years after your postingss- I too have had amc, on my skull- it was removed . Radiation was not recommended. This cancer is suupposed to be agressive and returns but mine didn't return in that location. But it has metastasized to the bone (also a rare event for this already very rare cancer) So we are now dealing with that situation.
What we have found out is that amc mimics breast cancer so therapies are those used to treat breast cancer. The whole situation is very complicated, and nobody really knows what to do- as you have found out amc is extremely rare.
We also are investigating various gene sequencing tools to identify effective therapies.
Your original postings are several years ago. How are you doing now?
- Posts: 1
- Joined: Fri Oct 10, 2014 12:48 pm
- Cancer Diagnosis: microcystic adnexal carcinoma now metastisizzed to bones
- Relationship To Patient: Wife
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