A blog about my journey and experiences with Adenoid Cystic Carcinoma
A blog about my journey and experiences with Adenoid Cystic Carcinoma
There are no known causes for Adenoid Cystic Carcinoma.
The median age of people diagnosed with ACC is 10 years younger than the average cancer patient. Women account for about 60% of cases and men 40%.
Adenoid Cystic Carcinoma is a rare type of cancer that mostly forms in glands of the head and neck. It grows slowly and gradually along nerves. This makes early detection very hard. Because detection is so hard, the cancer has a lot of time to spread.
It is very important to understand that every diagnosis is different. Treatment and detection play big roles in survival rates.
SURVIVAL RATEDisease specific | 5 YEARS | 10 YEARS | |
| With distant metastasis (DM) | 80% | 40% | |
| Without distant metastasis (DM) | 100% | 100% |
DM can develop >10 years after initial treatment in many patients. Ten-year survival has been observed to decrease by 30% in patients with ACC who develop DM 1.
(1Department of Radiation Oncology, The University of Texas MD Anderson Cancer Center, Houston, Texas).
This is a topic that I feel very strongly about. Cancer is not a quick fix medical ailment; the doctors that treat you will be in your life for years to come. Regular scans and examinations are in order even if you go into remission. You must find a medical team that you trust with your life because ultimately that is what is hanging in the balance.
I was extremely fortunate to be under the care of the top surgeon in the country and which I trust implicitly. It is important to add however that it was not solely his medical expertise that won me over; it was his approach and outlook that was even more important to me. I am generally quite an anxious person and more inclined to expect the worse. It was therefore very important for me to find someone with a more optimistic outlook. My doctor exuded confidence and optimism and made me believe that I could handle this scary journey I was about to embark on.
I know that many others would rather want the brutal honest truth and be overly prepared for what might lie ahead but my scared little mind would explode. Luckily I did not settle on the first doctor I was referred to, but kept on looking. I think everyone should keep on searching until they find someone way that also makes sense to you.
It is also important to add that one should not be naïve about the medical care you will receive. I have more than a few horror stories about incompetent hospital staff and inadequate medical advice. I know that when you are sick and scared you want to believe that medical personnel will provide you with the best possible care but this is just not the truth. There are just as many (if not more) completely inept and lazy medical personnel than personnel who cares. You must insist on care that is up to standard and stop worrying about being polite. It is usually patients with chronic ailments that are labeled as difficult patients, but perhaps that is because they know something some newcomers don't. These patients have realized that it is only when you insist on better medical care that you actually receive it.
I recognize that that all of this is coming off as a bit hostile but there is a reason they call it 'fighting' cancer. Battling the disease is exhausting by itself, but save a bit of energy because you are also going to have to fight a whole heap of people that are actually suppose to be on your side. From the nursing staff that won't come to change your beeping drip to your medical aid that refuses to cover even some of the most basic medical bills. The eventual point I am trying to get at is, that you should insist on the absolute very best care and fight for it!
If all of these happen in the same area: