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Nov 23, 2019 · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

Hi Kristi. I too was diagnosed with ACC. Mine was in 2007. Unfortunately I had my first recourence in 2013 and pretty much have been battling lung Mets, liver Mets and more cancer in the neck and to distant lymph nodes as well ever since. I'll be headed back to Mayo in about 3 weeks for updated scans. I am pretty sure I'll need some sort of treatment in 2020 but I always remain optimistic about the future and like you have a deep sense of spirituality. Prayer is everyday and it has certainly helped me through the rough spots and I will pray that you never have a recourence.

Apr 5, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

@nogginquest Keep doing what you love for as long as you can do it. Stay strong for all those people you have touched. For me Cancer is a ONE day journey. Every day I wake up is a new day and a new chance at doing what I love to do. Some days I can do it…..some days I let slip by to regain the strength for the next day. No matter what happens I get to live one more day and feel so happy about it. I have lived with one motto since my cancer metastasized 5 years ago and it is this. " I'll probably die from cancer, but it ain't gonna kill me". Every day I get is a good day and I can find a positive in the day no matter what the news is around me. I've not worked in almost 2 years but when I did work I did not work because I loved what I did. I did it for the paycheck but I really did not enjoy my job. Now that I am away from my job I feel like I've been released to go have some fun and to really do a few things I love to do. I'll keep making plans for future days no matter what my diagnosis is. Yes, cancer does suck. But what sucks worse is letting Cancer dictate what you do today. Go out and make every day a great day no matter what the Cancer does.

Nov 18, 2017 · Adenoid cystic carcinoma - left tongue base in Head & Neck Cancer

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.

Oct 23, 2017 · Adenoid cystic carcinoma - left tongue base in Head & Neck Cancer

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?

Sep 16, 2017 · Talking Frankly about Living with Advanced Cancer in Cancer

@allisonsnow Thanks for sharing these thoughts. I have that feeling of survivors guilt all the time. I have had many friends get diagnosed with some type of cancer and they go very quickly. At times I feel so guilty that I am hanging on and have been given time to “live with the disease”. Here I am 10 years plus living after my first diagnosis and 4 years after being diagnosed with metastasis. My cancer (Adenoid Cystic Carcinoma) is rare with so there is no systemic treatment other than surgical recession and maybe radiation. It tends to grow slow but is relentless. I have had 4 major surgeries including a partial lung removed. I run into people all the time who say “you look so great”. If only they knew some of the pain I have to endure to get through a day. Most of the time I do great and I live each day doing what I want to do. I live by a simple saying I came up with years ago and I tell this to people all the time. “I am probably going to die from cancer but it ain’t gonna kill me”. The feelings of survivors guilt comes and go’s and I tend to deal with it with a lot of prayer and some soul searching as to why God has given me this gift of life. I say keep on truckin until it’s over.