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Sue B Offline OP
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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.


Sue - wife to John who was diagnosed with SCC of unknown primary in Nov 08 - TxN1MO - modified neck disection Dec 08 - currently in radiation treatments
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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,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Sue B Offline OP
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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.


Sue - wife to John who was diagnosed with SCC of unknown primary in Nov 08 - TxN1MO - modified neck disection Dec 08 - currently in radiation treatments
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Sue B Offline OP
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oh, forgot the staging. Since it's metastised, he's in Stage III.


Sue - wife to John who was diagnosed with SCC of unknown primary in Nov 08 - TxN1MO - modified neck disection Dec 08 - currently in radiation treatments
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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.



Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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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


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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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.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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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


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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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


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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Sue B Offline OP
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thanks Bob for the advice. We meet with his nutritionist tomorrow, so I'm hoping they can provide me some guidance also.


Sue - wife to John who was diagnosed with SCC of unknown primary in Nov 08 - TxN1MO - modified neck disection Dec 08 - currently in radiation treatments
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