This post moved to new topic by OCF on 3/24/03

Hi all,
I just found your site after months of searching the net daily for information on tonsil cancer. I'm not sure why I didn't find it earlier, but am only thankful that I have you now. Brian, I feel I have finally found the person who can answer my questions without "sugarcoating".
In August 2002, my husband (48) was diagnosed with stage III cancer of the left tonsil (poorly differentiated invasive squamous cell carcinoma...20-mm diameter ill-defined poorly marginated lesion centered within the left tonsil and floor of the mouth) with a 20-mm diameter enlarged lymph node at the level 2 nodal station. (????) A surgical biopsy confirmed the tonsil cancer, but a fine needle biopsy came back inconclusive for the lymph node. Another biopsy was not done to the neck. I requested it, but was told that with the swelling they "assumed" that the cancer had spread to the nodes.

The ENT did not encourage dissection as an option. His words were "I would have to remove part of the jawbone and this would be unnecessarily invasive".
We decided to opt for the chemo and radiation approach after being assured that the outcome would be comparable to surgery.
Now, I'm questioning this. I'm starting to get the feeling that the ENT did not explain our treatment options as real choices at all. I think we were sort of duped into thinking that chemo and radiation was our best choice....not our only choice. During one discussion with the radiologist, I asked about surgery being an option if there were a recurrence. She said surgery could only be done as a "salvage" procedure. Is it salvage because of the damage done during radiation, or because it was inoperable to begin with?
I'm sorry if I've totally confused you with all my questions, but I'm totally baffled at this point myself. ANY insight you could give me on this would be truly appreciated.
And to all you caregivers out there....hold on tight. Reach out to your loved one, your friends, your family, your children, your pets.....whatever gives you any comfort. Love is the only thing we need and all we can give.
Mandi

I was also diagnosed with tonsillar cancer (stage 4) in Aug.2002. I had one enlarged lymph node. The ENT doctor told me that he was pretty sure that it was cancerous without the biopsy of the node.

The surgery I had was tosillectomy, neck dissection, then radiation and weekly chemo. The radiation doctor told me later that the poorly differciated carcinoma was more sensetive to radiation than other type of cells, this maybe the reason some of the patients did not had the surgery to remove the tumor. Usually, if the doctor felt the lymph was cancerous, neck dissection is necessary, even one has radiation + chemo treatment. If the lymph node shrank to nothing after the radiation, "salvage" surgery maybe avoid, but people usually have them revoed just for sure.

Well, in this instance you have a surgical oriented ENT who is pointing you in another direction. That makes me feel that he thinks that given the tools that HE has, it might be better to work through other therapies first. This seems like a healthy approach. In my own case I had radiation first, and surgery was always a possibility waiting in the wings if the radiation didn't do it all. That was indeed the case, and I had surgery after the radiation to remove additional suspect tissues and nodes. A mandilectomy is a serious procedure with long term surgical and prosthetic rehabilitation issues. I believe that he thinks that this procedure might be avoided if the other treatments do their jobs. I cannot know what he is thinking exactly, but this seems likely. It may still be where your husband has to go, but in this particular instance, if it were me, I would opt to keep my mandible intact at least for the duration of the radiation to see what the results were from that. As to doing a neck dissection, that will probably come down the road as well. No doctor wants to run the risk of having a positive node left behind that will lead you to a distant metastasis sometime in the future. However a neck dissection USUALLY does not include the removal of any portion of the mandible. So you may be a little confused as to what his intentions were/are. The unfortunate term

Thank you Brian,

I understand totally (not that I want to) what this disease entails.

My husband has since had a PET scan that showed sugar uptake in his lung. We couldn't wait to see if this was benign, and he had surgery to remove his top lobe of his right lung two weeks ago. Thank GOD it was benign.

Seems this sort of lung nodule is very common in the Bay area. (We live in Maryland) Now we are counting on the fact that his CT is clear and he may get back to his normal activities soon. My main concern is whether the doctors are telling us the whole truth.....along with thousands of others out there, I'm sure.

This disease is a monster! It lives, breaths, and reproduces in our lives, and there is absolutely nothing we can do (as caregivers) to prevent it. I've watched my strapping hero be reduced to a 6 foot skeleton! I hate it, but I want to know what others have experienced.

Am I giving false hope to my boys? They are only 12 and 8?

I'm sorry......I just want answers and nobody seems to be able to give them.

I realize that every case is different, but when I hear him gasp for breath at night, is that normal?" He's lost 40 lbs.....where do you go for hope?

I have to believe in God and leave it in his hands.

God Bless,
Michelle

They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for. As to where you go for hope, it most likely resides in the smallest progress, the simplest detail

Hi Mandi, The tone of your messages sounds like you have a lot of fear and confusion going on right now - and I know how you feel. I am also a caregiver to my husband who has stage III/IV scc at the base of the tongue. He has had radiaton, chemo and just as of 2/6/03 - the modified radical neck dissection surgery. He is having quite a few problems from the surgery - mostly stiffness and swelling from the procedure. There are definitely some days that are awful for him - following all that he has been through with the radiation and chemo. All I can really tell you is to remain strong. There is always hope - even when things seem like they are really bad - have courage....things can and often do turnaround to the better when you least expect it! In other words - see what they doctors have to say, talk things over with your husband and other family members, ask plenty of questions, look into all other options - even experimental treatments, if necessary. But don't underestimate what chemo and radiation can do - these are very powerful treatments and can work wonders. Let us know what else you find out and keep us posted. Good luck!

Thank you for your advice and kind words. I know I sounded a little stressed before..... I've had to handle so many things in the past three years that I think I lose it now and again. (My 56 year old aunt died of sudden cardiac arrest in the grocery store, my mother had three heart attacks in 6 weeks that resulted in a triple bypass, my best friend was in a car wreck that left her in a coma, my grandmother passed away, my husband and I were separated twice and had just recently gotten our lives back together 6 months before his diagnosis....I won't go on with the pity party, but I guess being caregiver to all of the above caught up with me) Finding this site has really helped...not only with the cancer that my husband is fighting, but with my overall outlook on life and people. God bless you all.. If I can help any of you at any time, please know that I will try to return the favor.
Mandi