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Douglas Loewen
@douger

Posts: 10
Joined: Aug 21, 2017

Adenoid cystic carcinoma - left tongue base

Posted by @douger, Oct 22, 2017

Primary radiation Jan 2013 and re-radiation Oct 2016. CT Angio Apr 2017. to view deep ulcer in left tongue base which may be cancerous and determine concern about dangerous bleeding from a prominent vessel originating from left external carotid coursing along the base of the ulcer. Reluctant to perform surgery because of this. Currently all food and medication being consumed thru g-tube as unable to swallow. While quality of life is reasonable I wondered if anyone has had experience with this type of Head and Neck cancer.

REPLY

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.

@JustinMcClanahan

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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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?

@JustinMcClanahan

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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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.

Liked by dakotapat

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.

@colleenyoung

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.

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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

@hopeful33250

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

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Teresa, thanks for checking in with me. No new cancer treatment yet but I’m doing pretty well. Still have a lot of nerve pain in and around where they did a lung “wedge” resection last year. My other tumors continue to grow slowly in the neck, left lung and lymph nodes under my arm. My focus right now is on getting some Hyperbaric oxygen treatments done so they can extract some teeth and rebuild a set of teeth to do the work. In many cases such as mine when you lose a salivary gland it changes the overall health of your mouth and teeth getting destroyed is not uncommon. Radiation to that area is another contributing factor to poor teeth. The Hyperbaric treatments are supposed to help the healing process when they pull teeth and operate in your mouth. I am in the process of getting most of these treatments done locally where I live before I have the extractions done. The Mayo Clinic Hyperbaric team is recommending a total of at least 30 treatments. 20 prior to surgery and 10 after. One treatment a day for about 2 hours. If I can get most of them locally I wont have to spend 6 weeks in Minnesota during the winter. That’s where I am at right now……hope you and everyone else in the group is doing well.
Pat

@hopeful33250

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

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Hi Pat, @dakotapat

Thanks for letting us know how you are doing. I’m glad to hear that there has not been a need for any new cancer treatment. Hyperbaric oxygen treatments sound promising to help you with the healing process.

I hope you are able to find a location for that treatment closer to your home.

Teresa

@JustinMcClanahan

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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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.

@JustinMcClanahan

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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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.

Teresa

@JustinMcClanahan

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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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

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