Parotid Tumor-New Diagnosis

LCSister · May 2013

Hi...

I am new to the boards. My 45 year old brother was diagnosed with a Primary Parotid Tumor with 3 positive lymph glands (Stage 4). He had a parotidectomy and neck dissection and they severed a branch of his parotid nerve. The margins were clear. Path report show poorly differentiated "squamous like " cells. No there history of any cancer for him-including skin which seems to have them baffled. Saw radiation oncologist and will start 6.5 weeks of daily radiation shortly (both sides of his neck we had assumed just one). Was also told they want him to get chemo as well (this was news to us since they had been steering us that he would not get chemo). They told us that Stage 4 for Head and Neck is not as bad as other cancers. They also warned him that the combo of radiation and chemo is really going to make him sick from about week 3/4 for about a month and would take a month to recover. They also thought he might need a feeding tube as well during this time.

Looking for any info from people who have the same diagnosis, went through the combined treatment modalities, side effects, survival rates, info on reoccurance...anything.

Thank you!

phrannie51 · May 2013

Welcome to the club nobody

wants to join....you have found the best forum on the internet for information and support!! I had Nasophrayngeal Carcinoma, that's behind the nose....I had chemo (Cisplatin) during 35 radiation treatments on both sides of my neck, and then another 3 chemos (Cisplatin and 5FU) after the radiation was done. Sounds to me like your brother's Dr.'s are giving him the straight scoop on treatment...it is a tough treatment, but as you'll see when you start getting responses....it is very doable. There are a number of people on here still in treatment, and many, many who have completed treatment...

I'm glad to hear they're thinking about getting the tube early, as weight loss is a huge factor. I hope they also ephasize to him that he must swallow something all thru threatment to keep his swallow muscles working....be it water/milk/ensure...something has to go down the hatch everyday in order to keep his swallower working.

I finished all treatment 9 months ago, and it does take a while to recover...it happens slowly....taste and dry mouth being the slowest to come back. If you can, maybe convince him to join this forum? We will hold his hand as he goes through treatment....we'll hold yours as well ...answer questions as they come up, and generally support him as he goes down this tunnel. He's going to be ok once he comes out the other side.....and he will come out the other side....and move on with his life!!

p

fishmanpa · May 2013

Welcome

Welcome to the boards LCSis,

Sorry it's under these circumstances. I'm a relative newbie havng joined the beginning of the year. The folks here are great and helped me through H&N boot camp.
I finished my treatment April 24th and am recovering at home. H&N cancers encompass many variations but most all have the same or similar treatment. I was Dx'd TX (unknown primary) N2b MO Stage IV HPV+ . I had a selective neck dissection to remove the cancerous lymph nodes, two tonsillectomies, biopsies and laryngoscopies failed to find the primary site. I had 6 weekly chemo infusions (Cisplatin) and 30 rads. There is no rhyme or reason to SCC H&N cancer (or cancer in general). Some who never smoked or drank can get it and some who smoked like mesquite and drank like fish their entire lives are just fine. Did they screen him for HPV?

If the infected lymph nodes were extra capsulated (broken out of their shell) then chemo is used to eradicate any stray cancer cells that may have migrated in the body. The rads will be used to get anything on the microscopic level in the H&N area. Essentially, the chemo opens up and exposes the cancer cell's DNA and the the radiation then fries it. Cells made vulnerable from the chemo and not hit with rads die off because the chemo prevents them from multiplying.

Be careful not to read too much on the internet. It'll scare the bejeebers out of you! (it did me!). The treatment is brutal but he'll survive. I didn't have a PEG put in until the last day of treatment as I had lost too much weight and was unable to take food by mouth. Be prepared for the recovery as well. The initial few weeks after treatment are brutal as well (I'm just a hair over two weeks out and *whew*!) This type of cancer is very treatable and initial cure rates are high (especially HPV+). As far as recurrance? It totally depends on the individual. Many on these boards are long time survivors. I'm sure they'll be chiming in.

It comes down to three essentials: Hydration, nutrition and pain management. You're going to hear a lot of that! Again, how your brother handles it is an individual thing as we all react differently. The side effects, both short term and long term, are pretty rough regardless. A good and positive attitude is essential in defeating the beast. That's not to say you won't have challenging moments and times because you will but cancer HATES a psoitive attitude

Positive thoughts and prayers.

"T"

LCSister · May 2013

phrannie51 said:
Welcome to the club nobody
wants to join....you have found the best forum on the internet for information and support!! I had Nasophrayngeal Carcinoma, that's behind the nose....I had chemo (Cisplatin) during 35 radiation treatments on both sides of my neck, and then another 3 chemos (Cisplatin and 5FU) after the radiation was done. Sounds to me like your brother's Dr.'s are giving him the straight scoop on treatment...it is a tough treatment, but as you'll see when you start getting responses....it is very doable. There are a number of people on here still in treatment, and many, many who have completed treatment...

I'm glad to hear they're thinking about getting the tube early, as weight loss is a huge factor. I hope they also ephasize to him that he must swallow something all thru threatment to keep his swallow muscles working....be it water/milk/ensure...something has to go down the hatch everyday in order to keep his swallower working.

I finished all treatment 9 months ago, and it does take a while to recover...it happens slowly....taste and dry mouth being the slowest to come back. If you can, maybe convince him to join this forum? We will hold his hand as he goes through treatment....we'll hold yours as well ...answer questions as they come up, and generally support him as he goes down this tunnel. He's going to be ok once he comes out the other side.....and he will come out the other side....and move on with his life!!

p

Thank you!

P....

Thank you so much for taking the time to respond to me. Congratuations on your recovery! It is inspiring and gives me so much hope! I have written down the info you have shared....Please look out for me on the boards so you can hold my hand!

LC

LCSister · May 2013

fishmanpa said:
Welcome
Welcome to the boards LCSis,

Sorry it's under these circumstances. I'm a relative newbie havng joined the beginning of the year. The folks here are great and helped me through H&N boot camp.
I finished my treatment April 24th and am recovering at home. H&N cancers encompass many variations but most all have the same or similar treatment. I was Dx'd TX (unknown primary) N2b MO Stage IV HPV+ . I had a selective neck dissection to remove the cancerous lymph nodes, two tonsillectomies, biopsies and laryngoscopies failed to find the primary site. I had 6 weekly chemo infusions (Cisplatin) and 30 rads. There is no rhyme or reason to SCC H&N cancer (or cancer in general). Some who never smoked or drank can get it and some who smoked like mesquite and drank like fish their entire lives are just fine. Did they screen him for HPV?

If the infected lymph nodes were extra capsulated (broken out of their shell) then chemo is used to eradicate any stray cancer cells that may have migrated in the body. The rads will be used to get anything on the microscopic level in the H&N area. Essentially, the chemo opens up and exposes the cancer cell's DNA and the the radiation then fries it. Cells made vulnerable from the chemo and not hit with rads die off because the chemo prevents them from multiplying.

Be careful not to read too much on the internet. It'll scare the bejeebers out of you! (it did me!). The treatment is brutal but he'll survive. I didn't have a PEG put in until the last day of treatment as I had lost too much weight and was unable to take food by mouth. Be prepared for the recovery as well. The initial few weeks after treatment are brutal as well (I'm just a hair over two weeks out and *whew*!) This type of cancer is very treatable and initial cure rates are high (especially HPV+). As far as recurrance? It totally depends on the individual. Many on these boards are long time survivors. I'm sure they'll be chiming in.

It comes down to three essentials: Hydration, nutrition and pain management. You're going to hear a lot of that! Again, how your brother handles it is an individual thing as we all react differently. The side effects, both short term and long term, are pretty rough regardless. A good and positive attitude is essential in defeating the beast. That's not to say you won't have challenging moments and times because you will but cancer HATES a psoitive attitude

Positive thoughts and prayers.

"T"

Thanks

T....

Thank you so much for responding! Great news that you finished treatment only a short time ago and are on the boards helping others! You gave me some good info that I have written down. Please be on the look out for me on the boards as we go on this journey!

LC

HobbsDoggy · May 2013

Outlook Positive, Side Effects ummm?

Neck cancer is very curable and the odds are good, nothing is every for sure of course. My doctors told me and it helped, that we don't give odds we are here to cure the cancer not talk about odds, I found that very comforting.

Eat as much as possible in advance and while you can. Eating is likely to become difficult to impossible towards the end of treatment. A month recovery is possible and eveyone handles treatment differently. Most of us took a lot longer than a month to recover. It is a slow recovery process for most. I didn't want to hear or believe that when I started and during treatment, but I should have listened. I am older, 67 so maybe that was part of slow recovery.

None the less the treatment while rough can be handled even though some days I did not believe that, I trusted what others told me.

I didn't want a feeding tube, but gald my doctors insisted. Was happy to get rid of it, but also happy I had it when I needed it.

Pain was a major issue for a few weeks, but not as bad as I expeceted and for me went away fairly fast.

Best to you and keep us informed.

ToBeGolden · May 2013

Welcome

My tumor is too different for me to offer any direct advice. But you have found the right place for advice and support. Welcome. Rick.

LCSister · May 2013

HobbsDoggy said:
Outlook Positive, Side Effects ummm?
Neck cancer is very curable and the odds are good, nothing is every for sure of course. My doctors told me and it helped, that we don't give odds we are here to cure the cancer not talk about odds, I found that very comforting.

Eat as much as possible in advance and while you can. Eating is likely to become difficult to impossible towards the end of treatment. A month recovery is possible and eveyone handles treatment differently. Most of us took a lot longer than a month to recover. It is a slow recovery process for most. I didn't want to hear or believe that when I started and during treatment, but I should have listened. I am older, 67 so maybe that was part of slow recovery.

None the less the treatment while rough can be handled even though some days I did not believe that, I trusted what others told me.

I didn't want a feeding tube, but gald my doctors insisted. Was happy to get rid of it, but also happy I had it when I needed it.

Pain was a major issue for a few weeks, but not as bad as I expeceted and for me went away fairly fast.

Best to you and keep us informed.

Thanks

HD...

Thank you so much for taking the time to respond. I really like what you said about not discussing the odds and lets cure the cancer....good advice. Your advice was just added to the list. Hoping you are fully recovered from your treatments. Look for me on the boards....

LC

LCSister · May 2013

ToBeGolden said:
Welcome
My tumor is too different for me to offer any direct advice. But you have found the right place for advice and support. Welcome. Rick.

Thanks

R...

Thanks for responding. Seems that the Head and Neck cancers have a lot of similarities....hope all is well with you.
Look for me on the boards as any advice is helpful!

LC

CivilMatt · May 2013

welcome

LCSister,

Welcome to the H&N forum, I see you’ve met P51, T, HD & TBG all great members and definitely full of good answers.

I had (past tense) stage Iva, scc, bot, hpv+ &1 lymph node. For treatment I had surgery, rads & Erbitux and it was a trip.

Checkout the Superthread at the top of the page, it is packed with good information.

Hopefully, your brother will have few side effects, but if they happen we got answers. We have all traveled this scary road, but the people here helped to take the edge off.

The number 1 thing I exploited was drinking water and swallowing (I did both a lot) and attribute the H&N gang for pounding that into my brain.

Good Luck,

Matt

LCSister · May 2013

CivilMatt said:
welcome

LCSister,

Welcome to the H&N forum, I see you’ve met P51, T, HD & TBG all great members and definitely full of good answers.

I had (past tense) stage Iva, scc, bot, hpv+ &1 lymph node. For treatment I had surgery, rads & Erbitux and it was a trip.

Checkout the Superthread at the top of the page, it is packed with good information.

Hopefully, your brother will have few side effects, but if they happen we got answers. We have all traveled this scary road, but the people here helped to take the edge off.

The number 1 thing I exploited was drinking water and swallowing (I did both a lot) and attribute the H&N gang for pounding that into my brain.

Good Luck,

Matt

Thanks

Matt,

Thank you for responding! So happy to hear all of this is past tense! Love the support and advice.....my list is growing. Keep an eye out for me!

LC

hwt · May 2013

LCSister said:
Thanks
Matt,

Thank you for responding! So happy to hear all of this is past tense! Love the support and advice.....my list is growing. Keep an eye out for me!

LC

LC Sister

I had a parotidectomy in 2009. That tumor was benign, the surgery went well and no tx afterwards. In 2012, I had cancer of the mandible (jaw) on opposite side. It had gone to lymph nodes so had a 19hour surgery, rads and Cisplatin. I have been cancer free for a year this week. Won't lie, tx was rough. After tx, I immediately started to feel better and at week 5 turned the corner and week 6 had all of my energy back. I have more energy now than I did before cancer or tx, maybe because I am 65 pounds lighter. Prayers that your brother has an easy journey.

Crazymom · May 2013

treatment

its tough but it is doable....he can get through this and the chances for success are good. It is terribly painful around 5 th week, but after about a month he will be better. I have been nEd for a year and have side effects except I am tired a lot and lot a bit older and have a lot more wrinkles.....stay in touch..it will help

Ann

LCSister · May 2013

hwt said:
LC Sister
I had a parotidectomy in 2009. That tumor was benign, the surgery went well and no tx afterwards. In 2012, I had cancer of the mandible (jaw) on opposite side. It had gone to lymph nodes so had a 19hour surgery, rads and Cisplatin. I have been cancer free for a year this week. Won't lie, tx was rough. After tx, I immediately started to feel better and at week 5 turned the corner and week 6 had all of my energy back. I have more energy now than I did before cancer or tx, maybe because I am 65 pounds lighter. Prayers that your brother has an easy journey.

Thanks

Hwt,

Thanks for your response. Congrats on being cancer free for a year! Your story is encouraging that 6 weeks post treatment he may be back to himself. Fingers crossed! Look for posts....

LCSister · May 2013

Crazymom said:
treatment
its tough but it is doable....he can get through this and the chances for success are good. It is terribly painful around 5 th week, but after about a month he will be better. I have been nEd for a year and have side effects except I am tired a lot and lot a bit older and have a lot more wrinkles.....stay in touch..it will help

Ann

Thanks

Crazymom

Thanks for your response! I keep hearing that about a month or so after he may be on the mend. We are hopeful that he comes through the treatment as healthy as possible.....Keep looking for me on the boards!

ET@cowboy · May 2013

newbie

Just joined the board today. I was diagnosed with Squamos cell carcinoma HPV-16 Tonsil and neck, on Feb 8, 2013. I've had three surgeries and have five radiation treatments left. Couldn't do Chemo because of a solitary kidney. The took 25 nodes and 1 salivary gland. I am still eating solid food and able to exercise lightly for 45 mins. The pain is unreal though. cancer really does suck. There is a great ENT in Dallas who does trans oral robotic surgery. That is the new trend now if one is a canidate and surgery is warranted.

hwt · May 2013

ET@cowboy said:
newbie
Just joined the board today. I was diagnosed with Squamos cell carcinoma HPV-16 Tonsil and neck, on Feb 8, 2013. I've had three surgeries and have five radiation treatments left. Couldn't do Chemo because of a solitary kidney. The took 25 nodes and 1 salivary gland. I am still eating solid food and able to exercise lightly for 45 mins. The pain is unreal though. cancer really does suck. There is a great ENT in Dallas who does trans oral robotic surgery. That is the new trend now if one is a canidate and surgery is warranted.

newbie

You may wish to start a new post. I would move it for you but I'm not too good with the computer. Welcome but sorry you had the need to find us. I see ads for robotic surgery and wonder if it might have been an option.

Parotid Tumor-New Diagnosis

Comments

Discussion Boards