Hello everyone, my husband was recently diagnosed (Nov 08) with metastic squamous cell carc in the parotid gland. He had surgery Christmas eve to remove the tumor which turned out to be a lymph node partially inside the parotid gland. Good news was they couldn't find a primary source. Bad news was they couldn't find a primary source. His ongologist is recommending 6 weeks of intense radiation therapy based on not being able to find the primary source and the fact he's a 3 time survivor of non-hodgkins lymphoma. 6 lymph nodes were also removed, none contained SCC. He had a G tube inserted over the weekend as an outpatient and ended back in the ER yesterday with excrutiating pain - tests showed the tube in where it in supposed to be - possibly his pain tolerance is lower than others for this type of surgery. He should be home tomorrow and starts his first round of radiation on Thursday at a tomo center in Northern Virginia. His radiation oncologist checks out well - highly recommended - interned and taught at Hopkins - even with all this, I'm still scared. My husband is a great guy, but can be difficult at times... He's a strong believer in alternative medicines, but has realized radiation is the best course of action for him. I look forward to learning from others in this forum.
Welcome Sue. I am not familiar with your husband's type of cancer (okay...I'll confess that I don't know what a partoid gland is!) but I have been through radiation and know what that is all about. I'm sure you will find someone here who can be more help to you - just wanted to say welcome.
And of course you're scared! Who wouldn't be? We are a great source of support - we've walked this road too - just post any questions you have.
It would be helpful to know how old your husband is, what stage the cancer is, and other details. That will help those with similar situations to provide the right suggestions.
In the meantime, welcome.
Donna
Donna, thanks for the welcome. Hubby is 55, smoker, and first diagnosed with NH Lymphoma 10 years ago. He made it thru chemo treatments twice, and has been in remission for 7 years. He first noticed a small bump in his neck and went to his NHL oncologist who said it wasn't a lymph node, suggested a visit to his ENT. The parotid gland is one of your saliva glands. It's kinda crazy to say, but I'm thinking chemo was a breeze compared to what I believe he's about to go through.
oh, forgot the staging. Since it's metastised, he's in Stage III.
I'm not going to tell you what to do; it's neither my place nor am I a medical professional -- However, given the seriousness and his background, were it me, I would be getting a second opinion on this from one of the CCC's listed on this site, preferably MD Anderson -- It looks very complicated and there may be other options or testing that appear when viewed from the multiple perspectives of a CCC tumor board.
Hi Sue...and welcome. From one caregiver to another, you've found a great forum for all your questions. So much love and support here, great answers and direction from folks who've been there. I don't know how I'd get through the day without reading some of this. I learn something new on here everyday. My husband was diagnosed in December so I am only learning...can't offer any opinions except to concur with Pete that a 2nd opinion may be in order and to wish you and your husband the best.
Cheryl
Sue,
You didn't mention chemo as part of his Tx which is usually given concurrently with the rad in cases where there has already been nodal involvement. The chemo helps to set the cells up to be more effectively killed. Some say it adds 20 to 30% to the kill rate and with his cancer he needs all the ammo he can get the first go round as he may not get a second chance.
Make sure that you MAKE him consume 3000 cals a day and 48 ozs of water a day. Each and every day until months post Tx. Stay on top of his pain meds as there is no need for him to be in pain and watch his nausea. Above all visit this site as often as you want. There is a wealth of first hand knowledge available 24/7.
Hi Sue and welcome to ocf.My husband had metastic secondaries in his parotid gland (its the one where you get mumps!!)and as every one who has been on these boards for the last couple of years will confirm, he was "difficult" to say the least.He had a radical bilateral neck dissection and radiotherapy ,no chemo being deemed necessary.I don't think that was the best decision for him,and perhaps you should get another opinion.Belt and braces is good.
liz
Hi Sue, I agree that a second opinion would wise and get one at a CCC Sorry that you and your Husband have to be here. The treatment ahead is some of the hardest both of you will endure, have him take in at least 3000 calories per day and drink,drink drink ( minium of 48 oz per day. Good luck and best wishes!!! Semper-Fi Bob
thanks Bob for the advice. We meet with his nutritionist tomorrow, so I'm hoping they can provide me some guidance also.
Bob, I forgot to say Semper Fi back to you. I work with some of the best darn Marines the Corps has. I'm honored they allow me to work with them.
Thanks to all for your support. With every day I realize I am going to need a place like this for support. My friends are great, most have been with me for at least 30 years - so I'm very comfortable discussing anything with the "girlfriends", but I'm begining to realize they won't be able to help me as much as ya'll will. Thank you in advance.
We did receive a second opinion, and it was socialized at the Lombardi Cancer Center (Georgetown U) and Johns Hopkins. All were pretty much the same. Surgery to remove the tumor, followed up with 5 weeks of radiation to both sides of the neck and throat. No chemo. One additional poi, he has been exposed to the HPV which has some correlation.
thanks Pete, where would I find the MD Anderson info on this cite? Remember, I'm very new to this cite, and have a very elementary knowledge of computers in general!!!!
Carnation Instant Breakfast VHC is all he needs when the going gets tough. Plus agua of course.
Hey Sue, quick note - the PEG was a life saver for me but I felt like I had been kicked in the stomach by a horse for the first week or so.
Hi, Sue, and let me add my welcome. I hate to say it but you are right about what's ahead being harder than the chemo was. Radiation plays havoc with everything in the mouth and throat. Taste buds, salivary glands damage and swelling of the throat will make eating nearly impossible. I just passed my 1 year anniversary of the start of treatment and still can eat only soft and sweet foods such as ice cream, jello and ripe fresh fruits. Ensure plus is my main source of nourishment still. Get your hubby to eat everything he can while he can. Best of luck to you both.
Welcome to OCF. Best of luck to both you as the caregiver and your husband with the journey ahead.
hello, my husband was diagnosed was parotid gland cancer last week. it started with a lump in his neck and then the test and the dreaded diagnoses. he had a pet scan which showed a lesion on his liver and right humerous as well as lymph node involvement. he went to md anderson yesterday want him to start chemo and radiation, and remove the lympnodes to try and find the source he is 38 years old no history of ca or smoke i am just very scared and dont know what to do
Hello and welcome to OCF Jenn. You will find lots of help and support to get you both thru this scary time. Ive heard thru other OCF members that MD Anderson is a terrific hospital.
Several things that will help you both to prepare are to have your husband eat everything he wants and as much as he wants now. It may be a while after treatment starts for him to regain the capability of eating easily. Dont worry about weight gain, do try to make his diet balanced. Take a notepad and pen to the doctor appointments to write down questions and their answers.
Look at other people's signatures and add some info about your husband when you get a chance. Its easy, just click on "my stuff" up top and then "profile" to make changes. Also you may want to start a new thread so we can fully address your questions and focus on your husbands issues.
Best of luck to both of you
Did they say what type of cancer it is?
It didn't start in the nodes, it traveled there from his oral cavity. Probably the parotid. How did they diagnose the cancer? From the nodes it can spread pretty much anywhere which is why they are recommending the neck dissection on one or perhaps both sides of his neck. They usually will do that procedure first and then start the concurrent chemo/rad. Sometimes they will do the chemo/rad first and wait and see if a ND is needed post Tx.
Anderson is a good place to be treated.
Just checking in to see how all is going? Not many here fully understand the meaning of "Semper-Fi"!! Please pass on to YOUR Marines my thanks for their support of you and your family!! Semper-Fi Bob
Sue...I have been fairly lucky and have only been treated surgically so I cannot offer any words of wisdom for what you and your husband are about to go through. I can let you know how important your role is. My fiancee has been so wonderul and his strenght has helped me so much. I'm sure you will be that person for your husband. Much luck to you.
Suzanne