Yes, the first surgery accomplished that and showed SCC in that area. Prior to the surgery he had a fine needle biopsy as well.
Michele

Michelle,
Where is he being treated? Is it a CCC or at least a CC. If not, you may want to seek a seek a second opinion at one. You have sevral in your area.

Did they remove the lump when they did the surgery or just biospy a piece of it? Did he have a neck dissection and that is why the drain hole?
Yes, I think they should be telling you more about what to expect in the treatment. Not knowing what to expect only raises the anxiety level.

Take care,
Eileen

Hi Eileen - No they did not remove the lump during the first surgery - just biopsied. They said during the first surgery they would first look down through his mouth and do some frozen sections right then, but if nothing showed up on the frozen section, then he would continue the surgery and open up neck from outside to do further biopsy. Second surgery a week later was to remove left tonsil as he indicated primary often hides in tonsil and to take further biopsies (panendoscopy?). So he did not have neck dissection although ENT surgeon says that will be necessary after the radiation and chemo treatments are done, however, the radiation oncologist seems to think the radiation will take care of everything to the degree that surgery will not be necessary.
I am not really sure what CCC is - I assume Comprehensive Cancer Center? Anyway, the hospital in our town has a separate oncology center which is where he is being treated. To start over somewhere else at this point would not be possible. We would have liked to get a second opinion, but it happened so fast and my husband started feeling pretty poorly from the growing lump and the pain from the surgeries, as was not inclined to have to travel hours for another opinion and go through the whole process again.
So, today was second day of treatment and ended up to be another full day - he went in for 4 hours of fluids this morning to flush out his kidneys. In the meantime, we decided to try the amiphostine and he had the first dose today prior to radiation. Made him very ill and I think he is inclined to discontinue it already. His doctors indicate the response is not that good and the side effects are not easily tolerated so they did not encourage or even suggest it, but after I read about it and asked them, they said we could try it. I guess you don't know if it is going to work or not until the treatments are well underway. In the meantime, if it causes such nausea, my husband says it is not worth it. I had the doctor explain to him what the effects of damage to his salivary glands would cause, but he is in such misery right now, I am not sure he can make a clear headed decision, especially based on the fact that it "might help."
Thanks for "listening.
Michele

Hi Michele, my SCC was occult (unknown) until it was found in my tonsil during surgery. Your husband has a good chance of beating this. Remember to pace yourself as this is a battle measured in weeks and months. He may do better than some with regard to side effects. In any case try to control worry.

PS ccc is indeed comprehensive cancer center.

Hi Michele. I am also a caregiver to my husband who was diagnosed with SCC, primary right tonsil with 1 lymph node involvement in October. You sound so much like how I was in the beginning of all this. My husband had a modified right neck dissectomy in October and had developed a seroma after surgery, which is a pocketing of fluid underneath the skin. He had to have this pocket of fluid aspirated twice a week for the next month until it eventually went away. Maybe this is the reason the opening that was left? Also Leon is having IMRT (39 treatments). He has 11 treatments left. The first 25 treatments large areas were radiated on all areas of his neck and oral cavity, now he is in what they call the coning down stage where specific areas are targeted. He will have that for his remaining treatments. Hang in there. It is tough. It's scary and your life's routine that we had grown very comfortable with is disrupted. I cried off and on all the time too. I finally had to get a little help and have been taking Lexapro since the end of December and it has made a vast improvement in me. Just keep asking questions. No questions are dumb!

Hi Michelle! First, please ignore my medical spelling!! Second, I have been thru and still going thru all you are describing. I know we don't know each other, but we have this thing in common. From what I have been told, my husbands situation is extremely rare. He has been called a medical marvall, acedemically challenging, etc. Estimates are anywhere from only .4%-2% of head & neck cancer remains as primary unknown. I have been all over the internet, and your husband is the only other one I have found. My husband was diagnosed in July 2005 with stage IV SCC metastic to the right cervical lymph nodes, primary still remains unknown. He had 3 lymph nodes surgically removed. The largest was 6cm, the other two were 2cm. They removed all the cancer they could, but the largest tumor was wrapped around his carardid artery so they could not take it all. He went thru 3 exploritory surgeries, xrays, cat scans, pet scans, etc. They never could find the primary. They told us his only hope was a very aggressive treatment. He went thru weekly chemo treatments and daily radiation treatements from July to Nov. He was given carboplatin and taxol for chemo. He had 30 minutes of radiation daily. The radiation treatment went completely around his head and upper body, from his sinuses down to his upper chest. Prior to treatment, they pulled ALL of his teeth because this amount of radiation to his lower face would destroy his teeth and weaken his jaw bones for the rest of his life. He was on a feeding tube from July to the end of December. Due to complications from treatment, he spent 8 days in the hospital. I'm not going to kid you. It was very rough at times. We had constant problems with infection from his feeding tube and it had to be replaced toward the end of treatment. During treatment, he didn't have the energy to get out of bed. It was exhausting for him to go to treatment everyday. He has lost over 50lbs. He did fairly well with the chemo, but the radiation was awful. He had a lot of pain in the neck and throat area. The radiation totaly destroyed his saliva glands. His pain was constant and intense. There were sores in the mouth, mucosis, dry, bleeding tounge, etc. It was all he had to take small sips of water to wet his mouth. My husband finished treatment Nov21, 2005. We still don't know if treatment worked, but the doctors seem optimistic. He goes next week for his first new pet scan after completing treatment. He is no longer on a feeding tube but still has to eat soft foods because his throat had not completely healed. But his skin has healed nicely on the outside. The only real side affect is his dry mouth due to not having any saliva glands. He has to drink a lot of water to eat and to talk. Other wise, he has returned to work and is doing just fine all things considered. Even though he wanted to quit several times during treatment, he stuck it out. Now that it's over, he's glad he did. I can't say that I have any advise for you. Everyone and every situation is different. If your husbands treatment is an intense and aggressive as my husbands, it will be a hard road but it is definitely doable, and in my opionion, well worth it considering the alternative. If you are going to be his primary caregiver, I will also tell you it isn't easy either. Its hard to keep a "happy face" and remain positive when all you want to do is cry. While your husbnad is awake, you will be there to care for him. While he is asleep, you will need to keep your household & motherly duties (if you have children). For me, this was overwhelming and exhausting. There was very little time for sleep. I had to learn to take things one day at a time. Control what I could, and what I couldn't, let it go. At times, I felt like I just couldn't do anymore. But, you know what? We did make it...my husband and I made it thru together one day at a time. And I know you can to! My husband didn't like "talking" about it. Every once in a while, he would break down and we would talk, but for the most part, he kept his thoughts to himself. As for myself, I found not talking only made it worse. I need to get my thoughts, feelings, and fears out in the open. I am very blessed to have a wonderful support team of friends around me. Your making a right first step by finding a good support network of people to share with. If you are interested, I have an 800# to my house. Email me and I will give it to you. You could call me anytime, day or night, if you need to talk. I may not have any answers or advise, because we are still going thru it ourselves. But I definitely have a heart full of love and understanding to share and big ears to listen with! Best of luck to you.

Vickie: Hi. Thank you so much for finding me and replying. If it is possible, I "feel better" after reading your post and knowing that your husband and you made it through this treatment that we have just begun, not to mention the surgeries and complications your husband (and you) has suffered through. You must both be very strong. I hope that I can be as well, but even more, wish that I could take some of the pain for him, even for a little while, so he could rest.
My husband completed his first week of treatments yesterday--chemo (Cisplatin) Monday and radiation Monday through Friday. It has not gone well. We thought we should try the amifostine (Ethyol) to try to preserve some saliva glands, although both physicians said that they had not seen anyone have any success with it as they could not tolerate it, but my husband could try if he wanted. They didn't have any on Monday, the first day of his treatments, but ordered it and he took it by IV on Tuesday and it made him so very sick. I am the one who suggested it and now I feel so bad. My husband was able to eat Monday night after having had chemo (Cisplatin)and I was encouraged by that, but after receiving the amifostine on Tuesday, hasn't eaten since! He has gotten upset with me for trying to encourage him to eat. Now, even though we knew he would eventually have to get it, he is having the feeding tube first thing this Monday. I try not to expect things, but really didn't think it would be this bad this soon, and I realize that he hasn't even begun to get to the worse part yet - God help us to get through this, as impossible as it seems - but thank you so much for letting me know it is possible to make it through the treatments, especially knowing that your husband has a very similar diagnosis as my husband. Jesse has not had any lymph nodes removed, as they said it would not be possible without shrinking the mass first, as it is over 8 cm. I worry all the time that the doctors are doing the right thing, as I detect that they (the radiation oncologist and the medical oncologist, and the ENT surgeon) are not "on the same page" sometime. But what can we do, we have started treatments, and are at their mercy. I haven't read a whole lot of posts, as I am new to this, but a lot of posters talk about "teams" and although I know Jesse's doctors are sharing information through charts and so forth, I don't believe they are meeting and discussing his case. And with the rarity of an unknown primary, it seems as if there should be more of a concerted effort. I do ask a lot of questions, but I don't want to irritate the doctors by acting like I know more than them, when I am quoting things that I have read on the internet, etc.
I don't even like to close my eyes anymore, because when I open them, for just the briefest second, I feel like I am in my prior life.

I can only make each day a goal however, and I guess sometimes I will have to make each minute a goal.
Thank you and everyone for your words of encouragement.
Michele

Michele --

Too bad about the amifostine but it should be noted that Medimmune strongly recommneds it to be given by subcutaneous injection now, not IV -- there were too many serious side-effects from IV administraton (per our daughter who worked at Medimmune). It also should be given after the patient hydrating with at least 20-24 oz. of water and taking an anti-nausea drug 90 minutes before the injections, preferably one of the serotonin-uptake drugs like Zofran.

Many people cannot tolerate amifostine, even one dose, even given sub-cu, but many can take it for a while, and apparently being taken even part-way through the radiation regime can help salivary function. But it is not the main factor -- our RO (considered an expert both on salivary gland preservation and amifostine) told us that getting IMRT and having a parotid-sparring radiation plan is most important, that there is about a 10-15% improvement in salivary preservation with amifostine but that IMRT can allow him to spare 50% function. However, he emphasized that the critical issue here is this has to be balanced with the need to hit the cancer with the maximum radiation dose -- by far the most important thing! Sometimes the placement of the cancer does not allow a plan which spares the salivary glands, which may also be the case with an unknown primary. You could ask the RO about this.

So not taking Ethyol is not a crisis -- it is more important that your husband get through the radiation and chemo without becoming sick, and having to have breaks in treatment. It was worth trying the drug -- once -- but now it is time to move on. Whether the Ethyol is the only reason for his not eating -- many people on this list have had similar reactions to cisplatin alone, it is a pretty heavy-hitting drug. Be sure he has adequate anti-nausea meds and also, get some advice about what to eat and what not to eat. Is there a nutritionist on staff? We met with ours weekly and it was very helpful.

Be strong, it is a long road but it can be done...

Gail

Hi Michele,
My radiation doctor explained to me that Amifostine only works about half the time so I turned it down. He told me it would make me very sick and no guarantees it would work. I had conventional radiation, both sides, bottom of ears to armpits and I still have some salivary function. They spared the large salivary gland on my non affected side so that helped. Conventional radition does not always mean NO salivary function left.
You hit home with me about waking up and for a split second feeling like you were in your prior life. My biggest struggle wasn't my fear of the cancer, struggles of treatment, all the things you would think would be the most difficult. Mine was the horrible homesick feeling I lived with and my yearning for my "old" life. I would wake up in the morning and the homesickness would wash over me and stay there, affecting everything I did. The process of saying goodbye to my old life and the old me was painful and long but it was done and now, my new life is full and wonderful and has advantages to it that my old life didn't have. Always a silver lining, so hang onto that thought while you go through these dark days. You'll make it!
Minnie

Thank you everyone - it is a comfort being able to draw on others' experiences versus only being able to go on what the doctors and nurses say, though I don't discount their opinion, that is not what I am saying. I am sure you all understand what I am saying more than I do probably. They (doctors) were right about the amifostine, however, but I would not have wanted to always wonder if he should have tried it - at least he gave it a shot. Speaking of which, the RO said (after the fact) that if he wanted to try it a second time, better results have been obtained with injection in the skin vs. IV. So my first thought was "now you tell us!" even though it was the medical oncologist who ordered it- should she not have known that?
I pray that he gets through the feeding tube placement tomorrow - yet another hurdle. There seems to be so many...it seems like oral cancer affects so many things..everything is compounded. In saying that, I certainly don't mean to minimize the effects of any other cancer disease sites, not at all, but there certainly are multiple challenges with head and neck cancer. It is something one could never imagine until you or your loved ones face it.

Thank you Gail for the suggestion about meeting with the nutritionist - I believe there is one available and I think we may do that. And you are so right Minnie - homesick is a good description of the feeling. I am afraid my husband has not had that hit him to the fullest degree as yet and I fear that it will really bring him down at some point. I hope not. My husband has always been the pessimist and I have tried to be the optimist.

With God's help I will try not to get discouraged and to hold on to the hope, which has become a little easier by reading the posts and words of encouragement on this site. I was very surprised and pleased today when my husband said that when (he said "if and when" but I corrected him)we get through this, we are going to become volunteers! It made me happy to hear him say that and I can see now that there may be a silver lining in all of this.
Thank you all.
Michele