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Parotid Gland Cancer - Stage 4

kelann
Posts: 3
Joined: Oct 2010

I am 44 year old female and found out 2 weeks ago that I have cancer of the parotid gland. 3 months ago I went to my primary care doctor because of pressure in my right ear and what I thought was a swollen gland. Thinking it was a possible ear infection starting, I took antibiotics twice, but nothing changed. My ENT sent me for a ultrasound guided biopsy due to the location which did show cancer. My PET scan showed what was thought to be 3 cancerous lymph nodes. I also had a chest x-ray, neck CT scan and MRI. Between all of them it was decided that I actually have 2 cancerous lymph nodes and a tumor in the parotid gland. I am scheduled for a parotidectomy and neck dissection in 10 days. Any insight on the best treatment? Surgery, radiation and chemotheraphy....is anyone familiar with any alternative treatments? Any insight would be greatly appreciated :)

mixleader
Posts: 267
Joined: Oct 2010

Hello, Kelan. I'm sorry to hear of your cancer. I also was diagnosed with a parotid gland cancer in May of this year. My ENT removed my right parotid gland, half of my thyroid (left half, benign tumor) and 9 lymph nodes from the right side of my neck. Luckily, mine was classed as stage 1, but I was highly encouraged to do 30 radiation treatments to make sure nothing remained. In two weeks, I get another full body PET/CT scan to see if any of the cancer remains. I am in high anxiety for this test. In my case, chemo was ruled out because they were quite confident that they had it all. I'm willing to bet that you are really scared right now because I know I certainly was (and still am). It felt like the end of the world to me. I also considered myself to be a fairly tough guy, but I cried like a baby when I heard the news. However, I was and continue to be, dedicated to fighting this thing and I certainly hope you are as well. Unfortunately, my cancer liked nerves and it damaged my right side facial nerve and my face is paralyzed on the right side. I am told that I may get some of this back, so I am very hopeful. Keep hopeful, keep fighting, and accept all of the support you can get is the best advice I can give.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Welcome to you both and welcome to our little family here on CSN. There are many of us here with all different types of cancer, I am NPC so can’t help much with Parotid cancer but there are a lot of others who will be signing on soon to help.

All the best and God be with you both in your treatment

kelann
Posts: 3
Joined: Oct 2010

I wanted to hi and thank you for the welcoming. What does NPC stand for?

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Nasopharyngeal cancer.

Best,

Mick

kelann
Posts: 3
Joined: Oct 2010

Hi Mixleader,
Yes, I am very scared! Sorry to hear about what you have been going through as well. I do have a couple of questions if you don't mind. How did the doctors find your cancer and was it classed as stage 1 because there was no cancer found in any of the lymph nodes they removed?

mixleader
Posts: 267
Joined: Oct 2010

Hello, Kelann. The parotid cancer was the second time in the last two years that I have been diagnosed with cancer. Prostate cancer in 2009 and Parotid cancer in 2010. The parotid cancer showed up as a lump on my right side near my jaw just under my temple. I and my doctor figured it was a swollen lymph node and I was treated with antibiotics. Well, that did nothing and not too long after that, it started to hurt and it numbed my lips. That's when I knew it was trouble. So, my doctor sent me to an EMT and they did a small needle biopsy which was inconclusive and they sent me for a ultrasound-guided biopsy which showed the mass to be malignant. During the various CT scans and a MRI, they also found a mass on my left thyroid, which turned out to be benign. My ENT surgically removed my right parotid gland, the left half of my thyroid, and 9 lymph nodes in my neck. The lymph nodes and the thyroid mass were benign, but the parotid was malignant. They got clean margins when they removed my parotid, but the margin was so small, I was told I needed radiation treatments just to "make sure". So, I endured 30 radiation treatments which ended Aug 31 of this year and I am recovering from that now. In three weeks, I have a full body PET/CT scan to see if any cancer remains. It seems that right now, my whole life hinges on the results of that test. I was told this was a very rare form of cancer and to happen just one year after being diagnosed with prostate cancer (also early stage 1), was a devastating blow. I really thought that I would be dead in a year or so. I am getting more and more hopeful for the future and I have learned that it is truly amazing what can be endured if it is necessary to sustain life. I wish you well in your journey and I hope and pray for your recovery and I will be happy to keep communicating with you on this. I am new to this site, but it appears that there are many helpful people here that can help us both during this nightmare. By the way, I am 60 right now and I was 58 when I got the first diagnosis of prostate cancer. I had been very healthy and robust up to that point and being seriously ill was the farthest thing from my mind. This monster can strike at any time no matter how good your health and how well you take care of yourself. Good luck and let's stay in touch here. Be strong and fight.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Welcome to the forum. I'm sure you have already been reading posts here, and have seen for yourselves what a great help the folks here are - they made a great difference for me during my treatment, and continue to help. Do well.

Leskay's picture
Leskay
Posts: 26
Joined: Nov 2010

My 35yr old fiance has been diagnosed with stage IV parotid gland cancer (salvitory gland cancer) in Aug 2010. A scan revealed Mets to the spine (6 tumors) and liver (10.6cm). They say Parotid gland cancer is so rare and even more rare for it to spread.... GREAT! The Dr pulled us off conventional chemo after 2 rounds and put us on a trial waiting list.
what chemo are you on? Is it working for you?? any other treatments?

mixleader
Posts: 267
Joined: Oct 2010

Hi, Leskay. I can't speak for chemo for this type of cancer because I was told that i did not need chemo. I had surgery and 30 radiation treatments. Luckily, mine was stage 1 and they got clean margins during the surgery. My best wishes for your fiance in fighting this thing.

Leskay's picture
Leskay
Posts: 26
Joined: Nov 2010

Thank u for your well wishes... its seems noone can help :( I have posted this on atleast 10 different boards. Not one answer. Who said being rare was special???? Its actually pretty lonely.... with no answers.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

I have sent you a PM (Private Message).
PM

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

there are resouces out there with plenty of info, details, updated and accurate. its takes two things to happen for help to come together, a resource for the topic you requested and others to offer it to you. when patients are their best advocates, it makes a difference

http://www.health.am/cr/salivary-gland-tumors/

MGC
Posts: 8
Joined: May 2010

Try the Head and Neck Cancer center at Stanford University if you can

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