Heidi my dad had his right internal jugular vein litigated and a branch of his carotid artery litigated during his most recent surgery. We knew he had involvement in a lymph node but because its close proximity to them, they done during surgery. We never discussed it prior but it was necessary. This surgery required a pec flap to protect the area and that also became the piece of his tongue that was removed. It made for a lengthy recovery (he was previously radiated though). My dad had high blood pressure and high cholesterol prior to this and he was put on an additional BP med and his existing increased. I asked the dr what this had an affect on in the future and he said not much. He had a really good flow on the left side which supplied enough blood flow to the body.

Good luck tomorrow at MDA. I have heard great things about them. I hope they are able to provide options for your mom. We too are meeting with the director of RO at MGH and will see what options are available for my dad. Praying for good news for both of us.

ConcernedDaughter

Thanks for the information. I was wondering when I read your post I noticed your meeting with the director of RO. Are additional radiation treatments being done. I was wondering if it could be done for my mother. I was told Yes by someone and then someone else told me it cant be done. I'm curious .

On a good note we arrived in Houston Texas today. Appointment time tomorrow at 2pm. cant wait because my mother has been suffering and has not taking any treatments in the last 4 weeks . I hope some type of treatment can get started soon.

Good Luck
Heidi

Todays meeting with the director of RO was not good. We found out theres really nothing that can be done for my dad. We can try chemo but the odds, scientifically, is against us. We are moving forward with a PEG tube and chemo as it's the only option. The RO wasnt very optimistic, referring to today being the best day my dad will ever have. His surgeon however stated that his scan from last week shows theres no cancer in his lymph nodes or his tongue and he may have a good response with chemo, we just never know . He thinks my dad will benefit from continuing with his swallow therapy because the chemo may reduce swelling and allow him to eat and talk better.

Its been a terrible day and I am angry. My dad was originally told he had stage 1 cancer and there was no way his cancer was aggressive enough for this. Now it looks like we are running out of options and that my dad is likely to suffer. I dont even know what else to say or do...

What awful news you were given. It is completely normal to feel shocked and angry. If this cancer has not spread to any lymph nodes then it must still be a localised cancer. Can they not do further surgery with reconstruction?
What about localised Proton radiation.
If this was us, I would be chasing another opinion and that would be from a top Comprehensive Cancer Centre.
I will keep you and your Father in my thoughts and prayers.
Tammy

I'm sorry to hear the bad news. Cancer is evil and all we can do is our very best to slay the beast. Most of the times we have the upper hand, sometimes it does. Don't lose hope as often what looks cloudy today may offer rays of sun in the future. Keep pushing for options that will help. Good luck.

Tomvonk

My mothers cancer never did enter the lymp nodes either. That's what's strange .
My mothers is confined to her lower left jaw and, cheek of face. It is in the neck area but when she had surgery her nodes were all clear. It does seem to be staying localized at this point . We arrived at MD Anderson yesterday and I will say they are jumping on this quick . By Friday we should have a plan . Hopefully .

Thanks
Heidi

I'm sorry for your troubles. From my understanding, the cancer is confined, localized, to the skin metatesteses? While it may be true that nothing else can be done besides chemo, which may be beneficial too, another doctor may say yes. As Tammy suggested, seeking another opinion for other options like Proton Therapy, and others like photodynamic therapy, which treats where light can go, just beneath the surface, can be done many times, in addition too, Brachytherapy, IORT, and surgery itself, as possible options. I have been told no in the past many times for chemo, radiation and surgery, but at later dates or with someone more experienced or specializing in these may say it is possible.

Good luck.

Thank you for your kind words and recommendations ...I'm not sure what I would do without this board.

Paul your recommendations are especially helpful. I will look into these additional treatments. I feel like I'm in a fog. What do i do first to get a second opinion? In Boston, many hospitals work collabortively. Can i do a phone consult? Who should i reach out to? I just feel defeated.

I know how you feel at a loss. Maybe ask your current doctors of any other treatments, where offered, suggestions. Sometimes they don't say directly to go here or there, elsewhere without asking. Some may say it won't work, as was my case with brachytherapy or refusal to do more radiation due to dose limit toxicities.

I also looked at all the top hospitals via the internet, see what they specialized in for head and neck cancer, who the doctors were, their background, mostly in my area, but other hospitals may give an idea of the latest treatments. U,S. News Reports Best Hospitals was helpful, had many links.

You don't have to be restricted to one area. You can stay at Hope Lodge, other housing, and go anyplace if insurance allows. Sometimes a visit to one city can enable a number of consultations.

I basically googled everything, went to various sites for trials, pubmed abstracts, etc.

Then I called the hospitals I wanted to consult with.

You can see in everyone's signature what treatments they had. Unfortunately, I didn't join here until 2012, and usually don't ask for advise on other sites.

I made sure or was in the process to have a copy of every scan, CD disk too, pathology, surgical reports, radiation plan, and in some cases copies of the pathology reports. I also made a time-line of my case being it was complicated.

The more information I had the better. It's a lot of work, but it helped me in a number of ways, and felt more in control, that I didn't have to accept what was offered, although that was an option still on the table, but could go elsewhere.

Sometimes time changes treatment options too. For a year I could not do further treatment, but physical,medical condition improved, I was able to do more, and doctors do take that, amongst others, into consideration.

I hope this helps

is surgery not an option? If it's localized wouldn't a graft be a possibility? I would definitely seek other opinions. hugs