← Return to Adenoid cystic carcinoma - left tongue base

Douglas Loewen (@douger)

Adenoid cystic carcinoma - left tongue base

Head & Neck Cancer | Last Active: Dec 27, 2018 | Replies (24)

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Hello Douglas (@douger), thank you for starting this conversation on adenoid cystic carcinomas.

I would like to invite back @dakotapat to share their experience with adenoid carcinoma.

@douger, if you are comfortable sharing, what sort of concerns or potential complications did your medical provider discuss with you about surgery? You mentioned your concerns, did your provider echo those concerns? Is surgery the only option?

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Replies to "Hello Douglas (@douger), thank you for starting this conversation on adenoid cystic carcinomas. I would like..."

Hi Justin (@JustinMclanahan) I would be happy to join in on the ACC conversation. My case started back in 2007 when they did a radical neck dissection to remove the original tumor in the submandibular gland (salivary) and the cancer which had already spread to lymph nodes and nerves in the area. I had 6 weeks of radiation following surgery and lived a pretty normal life until September of 2013 when they discovered the cancer had spread to several areas including my right lung. Since the metastasis I have went through 2 additional surgeries and getting ready to start additional radiation to two different areas. It has been my experience that every time I have had surgery, a new side effect from surgery then starts. ACC is relentless and once the spread is on it is hard to stop, although in my case like many others the tumors tend to grow slow which is a plus.
@douger has a case that sounds a bit different with having the g-tube and the tumor location. The surgery sounds risky but what are the other options? What are the risks of waiting to long for the surgery?

I agree our case is different. Attended at our Family Dr beforehand when tongue seemed heavy . After reviewing a scan she scheduled the lump was confirmed and she immediately referred us to oncologist at H and N dept at a major cancer hospital where the cancer was confirmed by testing and radiationed commenced. As mentioned previously no further radiation can be performed and only remaining possible resolve is risky surgery which at present is not considered an option.
Your case sounds very invasive and we wish you well.

This profile relates to my wife Willa's adenoid cystic carcinomas of left tongue base There has been little or no change in her condition since I opened a discussion in October. Willa continues with the g-tube for all food, hydraulics and meds . The mouth and jaw continue to have limited movement which affects speech, teeth brushing and dental servicing. Mouth exercises continue and Willa has maintained a good attitude despite these difficulties. As indicated little more can be done at this point and we will await our next appointment with Willa's oncologist in February. In the meantime our family doctor is able to deal with minor problems which arise periodically.

Thank you Douglas, @douger

I'm glad to hear that Willa is maintaining her current level of functioning. Wishing you both well as you look forward to Thanksgiving.


We attended at the Head and Neck section of Princess Margaret Cancer Hospital in Toronto on Feb 22 for a regular review of Willa's
condition by her Physician. Flexible nasal endoscopy continues to reveal the ulcer in the left posterolateral portion of Willa's left tongue base. Dr confirms that this inoperable ulcer is cancerous and no further treatment is possible. Main concern is possibility of bleeding of the ulcer which could be serious. Prognosis is that this is a very slow growing cancer and difficult to say what prospects are for life expectancy. She has had a new gravity tube installed recently as the first one had been in for almost 18mths. Pain continues to be dealt with Fentanyl 25mcg patch and hydromorphone as required. She receives 5 1.5 liter containers of ISOsource daily plus considerable water for hydration - all thru the tube as swallowing ability is non existent. Spirit is good and Willa is able to participate in normal social and family activities. We will return to Princess Margaret for a further review in August

@douger Hello Douglas,

Thank you for updating us on Willa's condition. It is so good to hear that her spirits are good and she is able to participate in regular social and family activities in spite of her physical limitations. Willa must be an exceptionally positive person!

I am sorry to hear of the pain she is dealing with. Are the Fentanyl patches and the hydromorphone controlling her pain well?

I look forward to hearing from you again and wish Willa and you the best.


YES - Pain is maintained quite well with the two medications. Fentanyl are changed every 3 days and hydromorphone is used infrequently.

What were the first signs Justin? I have been taking Methotrexate, first by tablet and now by self Injection. The sore on my mouth resembles a Cold Sore. Inside my mouth are very painful sores. At first I called them canker sores. But, they are different. I have had a rash all over my body for a long long time. Now it is controlled. I went to many doctors who instead of reading up on these things, keep push what they know and no more. If my teeth Accsidently hit one of these sores, it HURTS.