Adnoid Cystic Carcinoma in sinus - 1251102

makeminemiles
Posts:3

Four years ago my Mother developed an extremely rare adnoid cystic carcenoma in her sinus. 4 months ago she developed a rapidly growing tumor in her jaw bone area. Last week it was the size of a tennis ball and a black growth formed on the bottom. That growth expanded and is now the size of a quarter and leaking blood from 2 locations. She asked me if I thought it would ever stop leaking or if she would have to deal with the bandages the rest of her time with us. I didn't have the answer, so I am hoping you have typical results oozing tumors. Unfortunately there is nothing else the Dr.s can do for her cancer. Thank you for your time.

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Reply # - December 8, 2012, 12:32 PM

catdander
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That sounds like a very painful problem that her doctors need to address. If the blackened area is infection it should be cared for asap (possibly even an emergency visit). Is your mother in hospice care? They are very good at making people comfortable who are no longer in treatment for incurable illnesses. However her doctors should remain available for consultation.

I will contact our head and neck specialist for input.

Please know your mom is in our thoughts,
Janine
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Reply # - December 8, 2012, 06:09 PM

dr. weiss
Posts: 206

Adenoid cystic carcinoma is a rarer salivary gland malignancy. While they can sometimes grow quickly, it is much, much more common for them to be slowly growing cancers. They can be so slow growing that many incurable/metastatic adenoid cystic cancers never kill or even hurt the patient--sometimes the cancer grows so slowly, that the patient lives a normal lifespan then dies of something else. So, my first question is whether the spot that is growing now was ever biopsied? If I'm reading your post right, the assumption is that it's the adenoid cystic carcinoma that's returned, but it may be wise to question this assumption. Second, why do the doctors say that there's nothing else that they can do? Have they considered surgery to remove the mass, or radiation to shrink it and stop it from oozing or chemo to shrink it? I'm not saying that these things can be done--I've never met your mother and don't know all the details of her case. But, I would say that adenoid cystic carcinoma is a rarer cancer. In general with rarer cancers, it can be helpful to get an opinion from an expert who has seen many of them.

Reply # - December 8, 2012, 07:43 PM

makeminemiles
Posts: 3

Thank you so much for your response. When she was first diagnosed 4 years ago, surgery was performed to remove the adnoid cycstic from her sinus. Along with it went a portion of her cheek and upper bridge and palate of her teeth on the cancer stricken side. At the time, we thought is was successful. It later did return as did tumors in her lungs as well. She went though chemo and radiation together. It still remains. Also, she has bleeding episodes from the adnoid that require her to be hospitalized and receive transfusions.

This new fast growing tumor was never biopsied. The Dr. did say, according to scans, it was continuous with the original adnoid tumor. I find it had to believe this is adnoid cyctic as well with how fast it is growing. She has an appt. on Monday and we will bring up a possible biopsy of it. Two months ago she did receive 6 weeks of radiation to try and slow the growth of this fast growing tumor. That was not successful. The Dr. told her that due to the location it is at, he was unable to attempt to remove it. He put her on morphin patches and mentioned hospice care. Currently she is home and I am caring for her and changing her bandages. She asked me if I thought it would ever stop oozing blood. Of course I do not have the answer for this.

What is frustrating is none of the Dr.s she has seen have ever experienced andoid cyctic in the sinus. The first Dr. who did the surgery actually told the Resident to study her case because it might be the only one they will see in their career. How that translates to us none of them really know the answers to our questions. She has an appt. wtih her Oncologist on Monday and I will inquire as to a biopsy.

Reply # - December 8, 2012, 08:18 PM

dr. weiss
Posts: 206

When you say that she has an appt. with her oncologist on Mon, is this a medical oncologist? Regardless, have you considered consultation at a major academic medical center? If your mother is in good shape, if she's interested, and if resources allow, would she consider travel for a good clinical trial? FGF is considered a promising target against ACC. The experimental medication dovitinib targets this and is available on a clinical trial @ UVA that I've recommended to a few patients (I practice in NC and don't have a trial of an agent targeting FGF at my institution). Additionally, there are controversial chemotherapeutic approaches that I've seen help in some patients. Alternatively, if she's interested and in good physical shape, she could "trial shop" for exciting phase Is with potentially relevant targets (ideally, guided by her medical oncologist). If a biopsy showed something other than adenoid cystic (such as a different malignancy, or a more aggressive salivary type) then the options would be different.

Regardless of the choice to pursue any of this or not, her comfort should be maximized with quality palliative care. Her pain medicines should be carefully titrated to ensure comfort. A nurse visiting the home may be helpful. For example, if she's interested in pursuing anti-cancer treatments per above, VNA might come to help. If she's not interested, then hospice could be a valuable resource.

Reply # - December 8, 2012, 08:55 PM

makeminemiles
Posts: 3

Her appt. is with a Medical Oncologist. I have not considered a major academic medical center. Do you know of any FGF targeting agent trials on the West Coast? While she is somewhat stable, I'm not sure how she would do traveling such a long distance.

Reply # - December 12, 2012, 08:41 AM

dr. weiss
Posts: 206

I don't know of any such trials on the West coast, but that doesn't mean that they don't exist. There are two major ways to screen for such trials. The easiest is to find a motivated academic oncologist and get a consult. Docs tend to be in tune with trials in their area. Many are willing to conduct searches for their patients when they don't have a trial. The other is to look on clinicaltrials.gov; in this case, I suggest searching separately for "adenoid cystic" and "FGF"

Reply # - December 12, 2012, 09:04 AM

certain spring
Posts: 762

I just wanted to offer a word of support, for your mother and for you. The tumour must be distressing for both of you. You're a brave and loving daughter to look after her, and I am sure she appreciates it. I hope you can get professional help when you need it. Best wishes.

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