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Seriously? More surgery?

Liz K.'s picture
Liz K.
Posts: 32
Joined: Dec 2010

They can't find it. Two weeks ago they knocked my husband out and still couldn't find anything in the neck after biopsies. Now they want to take out 20-30 nodes next week. Yesterday the Ono. said "you want to survive this don't you?" when we choked. NO, you can't be serious I wanted to say! The cyst had squamous cell carcinoma but can't find anything anywhere else.Still have not started radiation. Like my husband says, if I had three weeks to live I'd be dead already! October is when this all started! And after his teeth were pulled last month, he has started the fluoride treatments on his remaining 9 teeth. Hope to have partials soon to tie into so need them. The Dentist may want him to keep the trays in overnight. So glad to read your posts on 30-60 mins. daily. Over night may not be good. Helpful place everyone, thank you again.

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

Liz, Glenn had the same scenario.

He had a cystic lymph node in his neck (2 actually) but no primary could be located. The efforts to locate the primary were exhaustive and that whole process took approx. 4 months before radiation started.

He had a radical neck dissection with removal of 25 additional nodes which were negative. Followed by chemo and radiation.

He also had all his teeth removed which added 3 weeks to the pre-radiation time, for minimal healing.

Please make sure they test his original node for HPV.

All the work they're doing now, even though it seems like it's not focused, is indeed very focused. The oncologists are making their very best plan of attack. A plan specifically tailored to treat your husbands SCC.

Hang in there and keep coming back here. There are great people here who will be there for you in an amazing way, when you need it.

Glenn is 7 months out of treatment now and doing very well.

I'm so sorry you and your husband are going thru this. It's tough but doable and we'll be here when you need encouragement.

Lisa

Liz K.'s picture
Liz K.
Posts: 32
Joined: Dec 2010

Lisa did they go ahead and radiate Glens entire throat? And chemo too? Wow. What about the HPV? Yes it's been stated that it's there and no comments about it.

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

I am not sure where you are doing your treatment at but it never hurts to get a second opinion.

Take care
Hondo

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

You guys are really going through the wringer....

DITTO on what HONDO says....

Thoughts and Prayers,
John

ratface's picture
ratface
Posts: 1234
Joined: Aug 2009

Johns Hopkins has a service for second opnion pathology. Contact the lab where you are and tell them you want to send out a specimen for a second opinion. Done routinely and I'm sure many other hospitals do it also, perhaps Mayo does it. Shouldn;t take very long, you don't have to travel and it will put your mind at ease and then you can throw your full energies toward the fight.

MarineE5
Posts: 748
Joined: Dec 2005

Liz,

I agree with the others, a 2nd opinion may be in order.

As for the Flouride Trays. I haven't heard of having them in all night before. The normal routine is to brush the teeth first. Then place the flouride in the trays and have the trays in your mouth for 5-10 minutes.

I usually do this prior to taking a shower and then after the 5-10 minutes, remove the Trays WITHOUT rinsing your mouth. Spit out any saliva or residure in your mouth and then let the remaining flouride sit on the teeth for at least 30 minutes. Sometimes I can do it for 60 minutes, depends on how dry my mouth is during that time and if I really need to take a sip of water. I rinse first before drinking any thing.

It is also suggested to do this prior to bed time. Brush and do the trays for the 5-10 minutes and spit, leave the remainder flouride sit on the teeth overnight. I find this hard to do, as many of us need to sip water during the night, so I get up and rinse my mouth out first and then take in some water for the dryness of my mouth.

I would be nervous trying to sleep with trays in my mouth all night, I'd be afraid that one would slip off my teeth and I would be swallowing a tray, no thanks....

My Best to Both of You and Everyone Here

Liz K.'s picture
Liz K.
Posts: 32
Joined: Dec 2010

I was wondering about the question about HPV? Yes our family Doctor, the surgeon who took the cyst out, said that it was strange but one of the four pathologist reports stated that there was evidence of the HPV virus. I've asked two Doctors this question since and they looked away and changed the discussion. Does this mean something friends?

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Yes. It does mean something. There is a connection between head and neck cancer and HPV. Just like HPV and cervical cancer. That is why we women must have pap smears. HPV HNC treatment is really any different but there are some studies that show that HPV postitive HNC responds better to treatment. Some links for you.

HPV AND HNC:

HPV INFORMATION

VACCINATING BOYS WITH GARDASIL

A PDF of HPV AND HEAD AND NECK CANCER

INFORMATION ABOUT GARDASIL

These links and other helpful info can be found on the HNC SUPERTHREAD.

Wondering why your doctors changed the subject. That wouldn't give me much faith and trust in them. Don't understand that. Unless they are scared to talk about sex? Then they shouldn't be docs.

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

Yes, Glenn had Chemo and Radiation therapy (Tomo radiation). The field of coverage for his radiation treatment was broader than if they had found a primary but necessary.

There are others here who have had an unknown primary and received

I agree with Sweet here. They shouldn't be shying away from any questions, least of all the HPV question.

A second opinion might at least hook you up with another team that will listen to your questions and have a frank and open discussion about treatment options.

It makes such a huge difference to have good communication with your Drs.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I must get eye glasses. I cannot see WTH I am typing plus I was so annoyed at the thought of drs changing the subject with you I was typing like a maniac. It won't let me edit so I will try and more clearly state what I meant.

If it turns out to be HPV positive, the treatment that you go thru, ie radiation and chemo, is the same as if you weren't HPV positive. There are studies that show that HPV positive responds better to treatment and has a higher rate of survival.

Sorry, old eye balls and tiny iPhone. Lol

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

At this point it is important to get 2nd and 3rd opinions from a major cancer treatment center. I like MD Andersen but there are others. If what your doctor is recommending doesn't seem right you should always get a second and a third opinion. It is well worth the effort and cost.

Bob

Liz K.'s picture
Liz K.
Posts: 32
Joined: Dec 2010

Thank you everyone. Loal has surgery scheduled for two weeks from Tuesday (have to get off the baby aspirin and thicken blood). Moderate neck dissection on right side scheduled. So glad to hear that HPV is a good thing compared to tobacco use (Oh boy, could have gone that way too). Last month, oldest son got rear ended with my car and insurance won't cover all of repairs. Last night husbands car with youngest son got side swiped by SAMS CLUB semi last night and it will be a challenge to get that ball rolling. When it rains it really rains! God is Good everyone alright.

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