Adenoid cystic carcinoma - left tongue base

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?

During an April visit to oncologist she had a surgeon attend. He had reviewed scans etc and indicated that surgery was possible but dangerous due to the blood vessel coursing through the ulcer. We were told in April that further radiation was not possible because of the two rounds given earlier. Because of the location of the ulcer(could be cancerous) at the back left side of the tongue they think this dilemma should be played out with current g tube utilization for food and meds. While surgery could be risky it was stated that "the risk is not high enough to warrant prophylactic embolization". At present there are no plans to proceed with surgery and next visit to Oncologist is scheduled for January.

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.

Hello Douglas @douger

I am sorry to hear of the difficulties you are experiencing with this disorder as well as finding appropriate treatment options. I did find a website that mentions treatments as well as clinical trials. Perhaps you would be interested in taking a look at it, http://www.accoi.org/treatments/clinical-trials/.

As one who also has a rare form of malignancy, neuroendocrine tumors, I can understand your frustration in finding knowledgeable doctors and treatment plans. I would like to invite some other members of our NET group to meet you. I don't believe that any of them have your exact experience but I'm sure that they can relate on some level to the difficulties in finding treatment options.

Please join me, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727 @dzerfas @lorettanebraska @wordnoid @trouble @upblueeyes @ahtaylor @heidilynn4 @junebug15 @tomewilson @gman007 @mollie59 @amani79 @collielady @somefan @debf @lucci50 @derekd @gulzar @jenchaney727 @lynnkay1956 @amani79 @kenlucier @cjohn @gaylejean in welcoming Douglas to our group and please share with him, as you are comfortable doing so, about your own experiences dealing with a rare cancer with limited treatment options.

Teresa

Hi Douglas,
Given the location of your tumor, I'd like to also invite you to the Head and Neck Cancer discussion group https://connect.mayoclinic.org/discussion/head-and-neck-cancer
Here you'll meet others talking about managing with a variety of head and neck cancers including using a g-tube.

I/we would be glad to join discussion. However I would like to clarify that it is my wife,Willa -83 - that is the patient and I, Doug - 89 am the caregiver. I should have cleared this up earlier but better late than never.
Throughout this whole process Willa has been very positive and continues to make the best of her life. We have a very supportive family (3 children - 2 married with 6 granchildren and 1 great grandson) and continue to enjoy getting together with them and other family and friends.
As mentioned the cyst/cancer is well back on the left side of her tongue she unable to swallow anything and the jaw opening is very narrow which makes talking difficult - combined with my hearing problems makes for interesting conversations at time. Willa also has trouble with phlem at times.By way of g tube she has been receiving 5 containers of ISO Source Fibre (1.5 ml) plus about 4 lr of water daily and is able to maintain her weight on this diet. As she is basically considered to be palliative she also consumes her meds and pain relievers by g tube. We are very fortunate to have a very knowledgeable family Doctor who can be called on for any problems that arise locally.
Willa's oncologist at Toronto's Princess Margaret Cancer Hospital - Head and Neck Dept - sees Willa on a regular basis but at this point is unable to recommend any further treatment.

Hi Doug @douger

Thanks for providing some further clarification. I understand a bit better about Willa's situation. It sounds as if she has good medical treatment and they are following up on a regular basis. I'm so glad that you have supportive friends and family, that is so very important.

I will certainly be praying for you both. Will you keep us updated as to how you and Willa are doing?

Teresa

Hello Doug @douger

I was noticing your post from last month and I was wondering how your wife, Willa, is doing? From your last post you mentioned she was receiving palliative care. Is this still the case and is she remaining comfortable with her current nutrition and meds?

We would love to hear from you at your convenience.

Teresa

Hello @dakotapat

I have been thinking about you and wondering how you were doing. Have you had any new treatments recently?

Please feel free to update us you are comfortable doing so.

We wish you well,

Teresa