Hello my name is Brenda and my husband was diagnosed with oral cancer in January of 2001. He was 35 at the time and has never smoked or drank and a very active person. It started off with a cyst on his face they removed it and discovered it contained cancer. The next step was they removed his right tonsil trying to find the primary source and couldn't so then they did a radical neck dissection. All was to be fine and we got on with life as normal.

Then December of 2001 another lump appeared on the right side of his face. Again it was cancer and this time at stage 3. They found the primary source of Darren's cancer at the base of his tongue after doing some thorough biopsies. So 35 treatments of radiation and 1 full week of chemo. He was to have more chemo but he ended up getting hospitalized due to dehydration and then mucusitis followed and that was awful. So Darren's oncologist didn't want to give him more chemo much to my unhappieness about the whole thing. Darren finished his treatments and then on one of his followups a CT scan showed a spot on his upper right lobe of his lung. The doctors thought for sure it was cancer and his oncologist told him to go home and enjoy his life as it was now rather than do anything. Darren looked at her and told her it wasn't cancer and that he was going to do something. As it turned out it was scar tissue. So he started to get his life back around October. He bounced back rather quickly and went back to work fulltime the first of February.

Then around the end of March he was carrying our 4 year old on his shoulers and felt a lump on his left collar bone. He knew it was cancer because as he put it he has never had a lump before all this. He went for a PET scan which only showed two spots one on his collar bone and the other near his adams apple. On April 23 he had another radical neck dissection on his lef t side and Dr. Trites his ENT doctor also removed his right lobe of his thyroid gland as well as some lymph nodes from his upper chest. This past Tuesday we got the results and it isn't good. All the lymph nodes he removed from Darren's upper chest contained microscopic cancer as well as the 2 spots we knew for sure and the right lobe of his thyroid also contained cancer.

Dr. Trites also explained that they found cancer in the channels connected to the lymph nodes that contain cancer. So this goddamn thing is spreading. My heart was broken for Darren. Dr. Trites is talking chemo but Darren's oncologist advised me that the chemo Darren had cisplatin and 5fu was it there would be no more chemo.

I am so scared we have two small kids a boy 4 1/2-Jacob and a little girl 2 Grace. They adore their father. Darren is so good about this all. He has never complained one day about anything. We have been married for 10yrs and not once has he been cranky moody and just happy all the time. He loves life and everything about it. His moto and believe me he follows it to a tee is don't sweat the small things don't look back or forward just enjoy each day. He has never said why me and in fact he says their are people worse off than him. I wish I could be so calm.

So you see I am scared this is all going to end badly. We meet with Dr. Davis Darren's oncologist next Friday. Has anyone had it spread like this and if so what treatments did you have. Darren is also to have a bone scan.

Brenda,

I am so sorry to hear about your husband. My daughter's cancer is also spreading. We actually don't know how far it has gone, but she is being treated with chemo. I'm wondering why the doctors have said no more chemo for Darren. Heather is receiving Docetaxol and Irinotecan and had previously had Docetaxol and Carboplatin. If he has only had Cisplatin and 5fu, why would they not try a new combination? Or try to get him in a clinical trial? There are new agents being tested. Even something like giving him Celebrex or Vioxx along with the chemo is a viable option.

I don't know what reaction he had to the chemo before and there are very severe long-term side effects sometimes. And there is the possibility that the chemo itself can cause death if not monitored closely, but the option of doing nothing to fight this just doesn't seem to be an acceptable one.

I would ask every question you can think of when you see the oncologist. It's also a good idea to get a second opinion. Are you near any multi-disciplinary cancer hospitals? I don't know which ones are the best in your area, but Brian probably would. You want him to be treated at a facility that deals with this every day, not by a local doctor who doesn't see it often. I think our biggest mistake was not going to a major cancer hospital in the beginning of Heather's ordeal.

Rainbows & hugs,
Rosie

Hi Brenda, welcome to the board. My husband was only 37 when diagnosed with Stage IV ssc. His began in his tonsil and spread to neck before we found it. He had never smoked either and only drank a beer or two occasionally. We went to M D Anderson Cancer Center in Houston, TX. It is three years ago this month that he was diagnosed and things are going well now. I am sorry I do not have more information about all that your husband is going through, but just wanted to say that you will find much support and information here. I will keep you both in my prayers. I know how scary it is, especially with young children, we have three.
Julie

After reading your post I do not see anywhere that he had radiation treatments. While all that I am going to say is 20/20 hindsight, if I were you, I would have these questions for your doctors. First, since a node involvement is never the source of the primary, why is it that no one early in the process checked the most common site for oral cancers, the base of the tongue? You do not mention any early scanning technology beings used, MRI's CT's etc. which would have also disclosed this early on, though base of tongue cancers are visible to the naked eye most of the time. In the US, a base of tongue cancer with node involvement is usually treated with both radiation and surgery, chemotherapy is usually used either in conjunction with these two (to augment the effects of the radiation) or as an add on procedure after the other two have been completed to systemically wash the body of any micro metastasis. The exception is in stage 4 cancers where non-local mets are assumed to exist. It sounds like he had a series of surgical interventions without the radiation to clean up local metastasis which frequently occurs and are not visible through conventional scans. It is generally ASSUMED that they (local mets) exist when there is nodal involvement, and therefore surgical only solutions are not the normal course of treatment in these cases. Since combined surgery and radiation are the standard treatments at most US cancer centers, for an advanced cancer, stage 3 or 4 (node involvement) why did he not have radiation treatments at the time of the original primary?

OK, so all that is in hindsight, primarily said to you so you can ask the questions and determine for your own sake if you are in good hand to continue or not with this medical team that you have been with so far. If you do not get satisfactory answers to those questions, you may wish to consider a new treatment team. I agree with Rosie

Sorry Brian that my post was a bit confusing. I am just so upset lately I really don't know if I am coming or going. Darren did have radiation treatments about 7 weeks of it plus one full week of chemo.

He did have a CT scan done when first diagnosed but it didn't detect the primary source of cancer. The primary source of cancer wasn't even detected until the reoccurence in December of 2001.

We live in Nova Scotia and Halifax is the closet cancer centre we have. I wouldn't say they are specialists in the field of oral cancer. I blame myself for how far this has gone. When Darren was first diagnosed I should of asked more questions and did more research. At the time I was due to have our second child and things were just crazy. Not that that should be an excuse. When you go through these things you put your faith in the doctors believing they are doing the best job that they understand the disease more than you do. But now I look back and I question everything.

I look at Darren now and can't stop crying because I feel extremely helpless. He seems to be getting more sick. It is extremely heart breaking.

If we don't like what Darren's oncologist has to say we will look elsewhere. I don't know if you know of any specialists in Canada that deal with this cancer but if you do I would appreciate their names and contact. If not I will take any suggestions you have. My husband is not ready to throw in the towel. Like he said he wants to be here to see Lord of the Rings part 3. He has a very good sense of humor about it all.

Brenda-
Because I have not had, nor do I know anyone that has had cancer spreading in their body, I cannot help you with an answer to your question. I am posting because I want to touch on something you ended you post with. I think the main reason you wrote is because you are afraid of losing your husband. You know in your heart that it is a very real possibility and you are looking for people who have overcome a situation similar to his. Well, from being around this site and many others, I can tell you that he is right. Other people do have it worse than he does, and they are still here to tell you their stories.
No one can predict with 100% accuracy what your husbands outcome will be 1,2, or 10 years from now. But, I want to ask you this. When you met your husband, fell in love with this wonderful man. When you married him, gave him two beautiful children, and said "For better or for worse", you meant every one of those things! If you look back on your lives together and you knew when you met him, before any of this happened, that he was going to fight this battle, I bet with 100% accuracy that you still would have given your heart to him, married him, and given him the same 2 beautiful children. All because you love him. Whatever battle he has to fight, you will be by his side, helping him make decisions and reassuring him that he is making the right ones. You sound like an excellent wife and caregiver and whatever life brings, you will deal with it and he will know you loved him!! No matter what!

He indeed does have a good sense of humor, a sign of strength I might add, especially given what he is going through. It goes without saying that from what you know now, this is not a recurrence, at the very beginning the doctors missed the boat on finding the base of tongue cancer which does not present as a secondary, but a primary cancer. Blame can be left for later, but when that point comes, leave yourself out of the equation. It is reasonable to expect that doctors will give you the proper answers and treatments at the proper time. If that did not happen, the blame is hardly yours. This is a topic that is currently under heated debate in the activism portion of the web site, about our need to be informed to make the best decisions possible, since as in all things, skills and knowledge of doctors varies from person to person, as in any other profession.

I think that it would be appropriate to at least have some second opinions regarding the chemotherapy options, even if they are by phone. If you need some leads to some major cancer centers for a phone consultation I will send them to you by email if you write me asking for them.

In the meantime, do not make the assumption that all is lost. Many people with late stage oral cancers are still around to talk about it. Your husband is not a statistic, or a disease. He is a unique biological entity with his own, perhaps unique and miraculous, way of responding to treatments. The future has not yet been written.

Brenda,

I felt I had to post in reply to your message. My tonsil cancer had metastisized to lymph nodes in 2001 when it was found. But it seems no one found that it had also moved to my liver.

By the time we found it they weren't giving out hope at the oncologist that day - EXCEPT for a clinical trial. I have been in this trial for 7 months and my tumors are shrinking dramatically. The investigational drug I am on (with chemo) is one of the new drugs that inhibits cancer receptors. In other words, as I understand it they keep the cells from latching on and forming tumors. A similar drug to mine (Irisa-sp?)was just approved by our FDA for use.

I guess what I'm saying is don't rule out the clinical trials that Rosie and Brian mentioned. They aren't for everyone but they do have their time and place in fighting cancer. I believe all countries have trials - I was just looking at a UK site that had some listed.

I wish you and your husband the very best. Please keep us posted on your progress.

Take care,
Dinah