Hi,
As you can see by my signature we are new to this journey. I am very scared but trying to stay positive for my husband and kids - we have a 13 yo daughter and 12 yo son. Have bought some books but this forum has already been priceless in the information I've found and the questions I've already learned to ask. Thank you all so much for this forum!

Hubby woke up to a large, painless lump in L neck on the 5th of Dec - when two rounds of antibiotics did nothing our GP (who has been wonderful) referred him to an ENT with CT scan. ENT had a PET done Xmas Eve morning. Pet shows clear below the neck - spot on left BOT with very small mets to R neck and large area on L neck. L ND done 7 Jan - 31 nodes examined, 5 with mets, largest mets 6.4cm. Positive for extracapsular invasion (invasion of skeletal muscle and soft tissue). Positive for blood vessel invasion. They had planned to do Bilateral ND, but spent 7 hours getting everything they could on the L side. Removed the sternocloidalmastoid muscle & jugular vein, but there is infiltration in the wall of the carotid artery.

I see on here many talk about the need for a second opinion, but we were referred immediately to Siteman Cancer Center and we have so far been very comfortable with what they have said and done. RO is a bit short but we don't have to like her - just trust her and I do. Any opinions on this are welcome.

We meet with the MO on Tuesday so any info or questions I welcome - I see some have had IC before starting concurrent but so far that is not the plan as I know it. He gets fitted with the mask/simulation on 25 Jan.

Seeing a dentist tomorrow to make sure dental issues are all taken care of. He goes into hosital on Thurs for g-tube placement. As a nurse I am fairly comfortable with taking care of it and teaching him about it - and am prepared to sit on him and pour nutrition/fluids down him if needed. His pet name for me is Nurse Ratched - hence my username.

Thanks to this forum, we've already been back to the GP, gotten him on a low dose antidepressant, got a script for xanax, and she said all we need to do is call her if we need anything else to avoid another appointment and co-pay.

Any advise or extra information anyone can give I appreciate!

Thanks,
Shelly

Shelly,

I agree with you on the RO. You don't have to like them, just trust they are the best professional for you. My RO is great and very personable, my ENT not so much. I do feel my ENT is good at his job and has given me great care but he's not a warm and fuzzy type of guy. OK with me though, this is not about making friends.

Good thing your a nurse. It will give you a leg up when dealing with the medical system.

Kelly

Hi, Shelly,

I am so sorry that you and your family will be making this very tough journey. While there are a lot of different opinions on a variety of concerns on this website, the one thing that matters is that you and Mike are comfortable with the Cancer Center, doctors and caregivers. While oral cancers can be similar, no two people are alike and the plan of care can vary.

As a nurse, I think you have an upper hand. Take advantage of it. Mike's in great hands.

For me, the stuff that is hard to predict is the emotional fallout. This group has been a real lifeline for me. No real advice here just wanted to welcome you to our group.

Hang in there!
Anita

Shelly

Loved One Flew over the Cuckoo's Nest, both the book and the 1975 movie. Your husband better be careful about a self fulfilling prophecy:
[quote]
Nurse Ratched: If Mr. McMurphy doesn't want to take his medication orally, I'm sure we can arrange that he can have it some other way. But I don't think that he would like it.
[McMurphy turns around to see Harding smiling at him]
McMurphy: Heh, YOU'D like it, wouldn't you?
[to Harding, regarding the pills]
McMurphy: Here, give it to me.[/quote]
You are way ahead of most new posters here but I would be remiss if I warn you about a medical Catch22 - no preTX thyroid level test, no TX once the radiation fries the thyroid. Here's my spiel
[quote]Insist on a TSH level blood test for thyroid so you have a pre-TX baseline on what is normal. Radiation very often damages the thyroid and leaves the patient cold and weak yet because there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 or the most advanced ones in tune with the 21st Century, 3.0 as the highest acceptable level, it is very very hard to get a doctor to prescribe thyroid medication without pre TX baseline. I am a personal example since before TX, I had a TSH of 1.6 and after TX it shot up to 4.3 but no doctor would help me these last two years until I discovered blood tests done by a cardiologist that I got the results from the day after finding out I had cancer so I had paid no attention to the 1.6 TSH. With that, I have finally been started on one little pill that my endocrinologist thinks will bring back both energy and warmth.
I hope you never need the results of this pre TX test
Disclaimer: I have a degree of Doctor of Law, NOT Medicine[/quote]
Keep the Faith
Charm

I will have to rent the movie and let my dh watch it so he can get a reminder of those "alternate" medication routes. Gotta keep our sense of humor somehow.
Thanks to your spiels on here in other posts, I have already obtained a copy of his blood work done by our GP in early Dec and confirmed TSH was done.

You are truly an inspiration and wealth of knowledge.
Bless you,
Shelly

Good luck Shelly. We will be here 24/7 to help you anyway we can.

I too found mine as a painless lump in my neck and I was also BOT primary and one of my first cancer docs (I saw 5) also tried antibiotics before being Dx'ed for cancer but his nodal involvement was far greater than mine.

Calories and hydration are extremely important throughout his Tx and his recovery but also keep him swallowing every day to hopefully avoid post Tx swallowing issues.

Hi Shelly, Sorry you have to be here but WELCOME. My husband's cancer presented almost identical to your husbands'. My husband woke up the week before Christmas last year (2008) with a non-painful lump in his left neck (4 cm malignant lymph node) and no other symptoms at all. His primary was also the base of tongue. We are almost a year ahead of you and your husband on this long........road. Treatment is tough and brutal but doable. My husband is doing really well and life is good. You have found a great place for support and information from a lot of patients and caregivers who have traveled similar paths. Your husband is lucky to have his #1 caregiver also be a nurse. Best wishes.

Welcome Shelly from another Shelley! Sorry you have to be here but you have found the best place for encouragement and support. As the others have said, the treatment can be pretty brutal, but Mike can do it. He has to, there is no other option. Please keep us posted....we all care.

Shelley

Welcome, Shelly, although under these circumstances. I am at about the same place as your husband. Had the lump in my neck removed and primary was found through subsequent surgery to be in my right tonsil. I went to the dentist today for thorough exam - will need to go back tomorrow for a cleaning and the extraction of a molar. Will meet with the RO on Wed to schedule concurrent rad (35X) and chemo (3X cisplatin). PEG surgery is set for 1/29.

It is so fortunate for Mike that you are a nurse. You seem pretty versed in all the 'lingo' - I was dx'd on 12/15 and had no idea of all of the terminology. I love your sense of humor in the face of this terrible situation you find yourself in. I don't have any advice, being a new cancer patient myself, just wanted to welcome you.

Chris

BTW - CHARM, I wrote a note to ask the RO on Weds about the baseline THC - thanks so much!

welcome shelly! that is one of the things i love about this site is that someone is always available 24/7!
u will travel a long, tough road as caregiver but there is a light at the end of the tunnel. best of luck!