New Struggle

This past week my husband Dan had surgery by an ENT surgeon to remove what we thought was a benign tumor along his jaw line, right below his ear. During surgery the doc and the frozen section pathology determined it was cancer. The tumor was large too - hotel bar of soap size. While in he went ahead and did a neck dissection and the cancer was in the lymph nodes as well. We are now awaiting final pathology and our referral to an oncologist. The reading I have done shows that this is really rare. I would love to connect with someone dealing with this same thing. After next weeks appointments I will have a more detailed/accurate diagnosis.

Thanks, Michelle

Hi, My name is Penny. I am very sorry to hear about your husband. Keep your hopes up as they can do wonders now. Did they say which kind of cancer it was. I have written a couple of messages here but not too many replies. I have been cancer free for seven years now. Mine was contained in the parotid gland. It was acinic cell carcinoma, the rarest of the salivary gland cancers. What I understand is about one percent of salivary cancers. So far so good.  Good luck and let me know how he is doing.

 

 

On 2/14/2008 Penny W. wrote:

Hi, My name is Penny. I am very sorry to hear about your husband. Keep your hopes up as they can do wonders now. Did they say which kind of cancer it was. I have written a couple of messages here but not too many replies. I have been cancer free for seven years now. Mine was contained in the parotid gland. It was acinic cell carcinoma, the rarest of the salivary gland cancers. What I understand is about one percent of salivary cancers. So far so good.  Good luck and let me know how he is doing.

 

 

Hi Penny - thanks so much for your reply and congrats on your positve news. The Radiation Oncologist told us Adenocarcinoma of the Parotid. Well it's really hard to find detailed info on that so when we met with the Medical Oncoligist i pressed him for more detail and he said Acinic Cell Adenocarcinoma of Parotid, Stage IVa, mid-grade, aggressive and 3 lymph nodes involved and the margins of the tumor were positive (they couldn't get clear margins). The treatment they have planned is 7 weeks, 5 days of week of photon radiation to start next Thursday. For every week of radiation we will recive Cisplatin chemotherapy. So one day of our week will be chemo + radiation and the other 4 days radation only. We are now waiting on results of our PET scan to see if it has metastasized. The scan was done yesterday afternoon. My husband and I are trying to be optimistic, but we will feel much better when we get the scan results and if they say all clear!!!

Hi, My father was diagnosed last year with salivary gland cancer. I can't remember what the pathology reports stated, but it has spread to the lymph nodes and was considered adenocarcinoma, but "acted" like acinic cell? It's hard to remember. Anyway, his surgeon had a very grim prognosis and was not opimistic. He said he had another patient who presented with the same issues and lived less than two years after surgery. My dad also had the same treatment - radiation for a few months, every day, and chemo once a week. He tolerated it all very well and it's been a year since his surgery. He's doing great. I think you just need to stay positive and realize this is a rare cancer and that doctors don't have all the answers. Good luck with everything. Hang in there.

Dear Friends,

Have you tried some alternative therarapies/methods/supplements?

 

hi

I have struggled to find up to date info on acinic cell carcinomas or to connect with any one going through this illness. My husband was diagnosed with AAC parotid gland on11th July 2008.It was discovered as a lesion during  a routine dental check up on June 20th a biopsy followed and a trachestomy given as the tumour was threatening his wind pipe .He had surgery on August 4th which he sailed through and was home eleven days later able to talk and eat which we thought would not happen for a long while.Unfortunately he is back in hospital after a small pin hole leaked pus and he got an infection.He has been nil by mouth for ten days now and hopes to be home on Wednesday.It has however put back his radiotherapy for a couple of weeks.It was due to start on September 15th.I would appreciate any info on what to expect during RT also nutrition advice.

 

On 8/25/2008 shona8 wrote:

hi

I have struggled to find up to date info on acinic cell carcinomas or to connect with any one going through this illness. My husband was diagnosed with AAC parotid gland on11th July 2008.It was discovered as a lesion during  a routine dental check up on June 20th a biopsy followed and a trachestomy given as the tumour was threatening his wind pipe .He had surgery on August 4th which he sailed through and was home eleven days later able to talk and eat which we thought would not happen for a long while.Unfortunately he is back in hospital after a small pin hole leaked pus and he got an infection.He has been nil by mouth for ten days now and hopes to be home on Wednesday.It has however put back his radiotherapy for a couple of weeks.It was due to start on September 15th.I would appreciate any info on what to expect during RT also nutrition advice.

 

Hi

Hope your husband is doing well. I don't hear of too many people with acinic cell of the parotid gland. Not a lot of info out there.  There is a web site called aciniccell.org with loads of info but they haven't updated or finished it in quite some time. My doctor tells me I read too much about it and I worry too much. But on the other hand, it's very rare and not much known about this type. If you know any good web sites please let me know. I go for an mri this morning to check for recurrent masses since it's been 8 years that I have been cancer free and I kept putting it off the last 3 years. Hope all goes well with your husband. I check this message board quite often, so let me know how he is doing.

Penny