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sue984 Offline OP
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Hi,
My name's Susan, and my husband was diagnosed Tuesday with Adenoid Cystic Carcinoma. He has yet to see an oncologist. We're both terrified; he's very stubborn and refuses to tell anyone which I realize it's his choice, his life, etc.
I think my major worry is that he may opt-out of any type of treatment.
I'm so glad this site is here.
😑

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I've posted this in the past, I hope it helps.

Based on my experience having had two operations for oral cancer since 2003, I would like to suggest four thoughts for newcomers.

1) Since oral cancer hits only about 1% of the population, seek professional care from a medical center that specializes in cancer and has oral cancer specialists on staff (CCC)

2) Don’t be afraid to travel extra hours to such a center-your disease can be life threatening. If Boston is too far see 3) below.

3) Follow-on care may be done at a location closer to your home that the cancer center works with.

4) Don’t wait to get help, and don’t second guess expert opinion but do get a second professional opinion if concerned.

In some cases where they take lymph nodes they will probably do an RND, (radical neck dissection). Be prepared for a scar across your neck.

Good luck-if your husband takes action to deal with it, the results will most likely be worth the effort.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
1 member likes this: Brian Hill
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I just wish to echo what was posted first to yours. ACC is one of the rarer oral cancers. Treating it is unique and there are new research papers out in the last year that offer new isights and alternatives. This is NOT a cancer type that should be treated at a small regional hospital with a cancer wing in it. He needs to be seen by a TEAM at a comprehensive cancer center. The reason is straight forward. They have the most experience, especially when it comes to something that is infrequent in incidence. They have the latest clinical trials, likely available as this cancer has been needing a highly targeted and specific approach for many years. So think of a CCC hospital as one that ONLY treats cancer. Two that are always competing for the number one spot in the US are MD Anderson Cancer Center in Houston, and Memorial Sloan Kettering in NYC.

If one of the big cancer only hospitals is not possible for a variety of reasons, usually that your insurance will not let you travel out of your geographic service area unless you lobby/argue with them for treatment that is not available within your service area, then the next step is a teaching hospital, like UCLA, Penn, others that see huge numbers of patients, and also need to be on the cutting edge of knowledge since they are both treating and teaching it, and have a large number of staff that are also involved in research.

The rarer oral cancers ACC and MEC while they may seem small and often isolated to the salivary glands, metastasize to other areas through means different that the way most common SCC squamous cell carcinomas do not typically use. The most common route can be perineurial invasion, traveling along a nerve to a place remote from the original location. This is one of their biggest dangers.

Please convince him that time is of the essence in dealing with this. Small in regular oral cancers means early, easier to eradicate. Not in ACC. He needs to accept this, and and get involved in a treatment center soon. Keeping it private is his prerogative, but fear of treatments keeps some people in delay mode, so please do your best to get him past these things. If you do not have a CCC near you, then I suggest that you look at this link to a very unbiased rating system of cancer treatment hospitals. It is put out annually and rates institutions on a ton of different criteria, from end results to staff education, to modernness of equipment, doctor nurse to patient ratios and more. It is searchable by zip codes and you can see what is closest to you that has a number rating that shows them to be a great institution. We keep the link in our resources section of the main OCF web site.

https://oralcancerfoundation.org/resources/best-hospitals-ratings/

Last edited by Brian Hill; 12-28-2021 08:29 PM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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sue984 Offline OP
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Thank you. We live in rural Vermont, so traveling would be a given. Knowing him as I do I don't think traveling, surgery, etc., are things he'd even consider. He has an appointment for another opinion coming up, so I'll see how that goes. This truly stinks!

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You probably have done this, but recognizing this is ultimately his choice, I would still choose to try and reason with him. I don’t know how old he is, but the years that he has left to live after treatment might be many. And his choice effects family around him that love and care for him, and need him to be around in their lives as well. There is a lot of living yet to do, and choosing to let this run its course will be a very unpleasant way to leave this world. This in no way will be a death without pain in your sleep one night. Many people that I’ve communicated with over the years are initially more afraid of the treatments than the cancer that is poised to take their lives. Everyone has heard about how bad radiation can be, how sick chemo can make you, and the specter of those imagined challenges looms large.The luxury of feeling like that quickly diminishes when the real discomfort of an advanced cancer kicks in.

The problem then will be that by putting off treatments, to the place where the fear of the cancer, death, prolonged serious pain and illness is now the most feared thing, it will be far harder to treat and involve more invasive treatments that have a lower chance of being successful. Many oral cancer types that spread by perineurial invasion end up as brain cancers since the nerves in the oral environment all lead back to the base of skull. Then things become far more complicated.

Where he is mentally and physically is not where he will be in the future. That argument needs to be absorbed and weighed in the balance of how he envisions his future. This post may seem blunt and harsh. I may even get some flack for writing it. I’ll probably hear that it is his decision, and I we should let him decide what is best for him. But time is not his friend, and I’ve seen lots of 11th hour conversions from letting it run its course to deciding that treatment is the desired path. Most with poor outcomes. Those still bother me that I could not reach someone early in their fears of treatment. There is a mix of empathy and support that needs to be conveyed for sure in the discussions. But when all else fails, a dose of reality may need to be introduced to convince him that his path of non treatment will be far worse than he ever imagined the treatments to be. I apologize if you find this writing devoid of empathy. That is not my intention.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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