Hugs all! My 60 year old husband had a recurrance of squamous cell oral cancer. First surgery, over 3 years ago - no spread - all lymph nodes clear - cheek tissue removed and skin graft placed. He never smoked, drank, or chewed tobacco products. Had second surgery for recurrance a little over a month ago. All CT scans, x-rays, surgery itself and pathology report shows cancer gone. Bone (jaw shaving), 2 removed teeth, blood vessels, nerves, etc all indicated it was completely confined in small superficial cheek area and there was no spread. On his first post-op check-up, doctor mentioned getting radiation. I said, if he doesn't have any signs of cancer, why should he have the destructive radiation? We declined it. Is there justification for having radiation in spite of no signs of cancer? Any experience in this situation APPRECIATED! Thanks.......Jane

Jane,

You didn't mention what stage your husband's cancer was (this can be one factor in the radiation decision). However, in light of the fact that he has had a recurrence, I wouldn't be too quick to dismiss radiation just yet. You may want to seek out a second opinion. Also, if he's not at a major cancer center, this would be the time to find one to get that opinion from a team that includes radiation and chemo specialists.

It's possible for cancer cells to exist that are too small to be detected, which is one of the reasons why radiation is often recommended to help "clean up" any of the remaining stragglers. I had Stage II SCC in my tongue, and when my surgery was done they removed many lymph nodes, all of which showed no signs of cancer. Even so, my head and neck cancer team felt it was critical for me to have radiation because of the risk that some microscopic cells were left behind and couldn't be detected. I did have radiation back then and haven't had a recurrence in the past 16 years.

In the 15 months or so that I've been registered on this forum, I've read of too many instances where people refused radiation after surgery (or doctors didn't push for it when perhaps they should have), and the patients ended up with recurrences within a couple of years. I'll be the first to admit that the months I spent getting radiation and then recovering from it were the darkest times of my life, but since then I've been blessed with good health, so the worst effects of radiation were just a temporary problem and with the benefit of hindsight I'd have to say the treatment was worth it.

Please don't come to a final conclusion until you've had the input of an oncology team that can give you their collective view on the best possible course of action.

Cathy

Jane,
Yes there is justification, especially since a recurrence is involved. If he had radiation the first time it may have negated the recurrence. If the cancer was in the same area then there was a spread involved for there to be a recurrence. Your first statement is in conflict.
The word recurrence implies that its from the original tumor site. A metastesis is where cells break off and set up a new tumor site elsewhere in the body and it is typically "distant". i.e., lungs, liver, etc.

Radiation's no walk in the park but many of us have survived it and are doing quite well today. I had the maximum amount and have very few side effects 2 years out from Tx.

Radiation is often given for prophylactic reasons. I would seek a few more professional opinions on this, preferably from a comprehensive cancer center, with a balanced perspective of the risks and benefits.

Ps I am 2 years younger myself

My growths were benign the first time and cancerous this time. I immediately started radiation right after the biopsies and surgery. I am halfway though and I have my bad days but I know I am working toward the greater good at the end of it all.

My prayers are with you and your husband,
barbara~

Thank you all for your candor,and prompt and honest answers. Cathy, congratulations on 16 years free! That gives us all hope! All 3 of you do! I think my husband's cancer must have been Stage I / II with T-2. I have done a lot of reading about oral cancer and treatment, and my question is, if they "aim" at the cancer during radiation, but there are no signs of it, WHAT do they aim at, and how do they prevent damaging non-cancerous tissue? Cathy, when you said the effects of radiation were just "temporary", does that include damage to saliva glands and did those return to producing saliva? How do they determine how MUCH radiation is ENOUGH? 4 weeks? 6 weeks? etc. Gary, I asked the doctor's associate right after his surgery, if it was considered a metastesis or a new, primary tumor, but she said "neither...it is considered a recurrence". Do any of you have saliva glands that no longer function; radiation damage to your teeth or jawbones? Also, why don't they do radiation right away and skip surgery? We are going to work with Mayo Clinic in Rochester. And Barb, thanks for your prayers and ours are with you also - please keep me informed on your POSITIVE progress! Again, thanks to all of you for helping me see this from the experience of others. HUGS! Jane

Jane, I am another person who had T2 cancer with no signs of spread to the nodes but had radiation recommended. You ask alot of good questions above and some I can't address because I am just recently out of radiation and chemo so I don't know what my final degree of salivation will be (I can say that my teeth and jaw are fine though I will have to be extra diligent in dental care for the rest of my life).

But I do know something about what they "aim" at when there is no tumor, or affected nodes, during radiation (by the way, asking questions about what they aim at really only makes sense with somehting like IMRT where different amounts of rad are directed to different parts of the oral cavity). My understanding of what they did in my case is that they directed the radiation most strongly at the areas most likely to be involved in a recurrence or spread of cancer. That is, they directed it at the original tumor site on my tongue as well as the left side of my neck where there could have been some cancer cells caught in smaller lymph channels (no longer are there nodes there) as well as the lymph nodes on the right side of my neck, in case there was spread to the other side and of course the rest of my oral cavity as well.

I had 6.5 weeks of radiation, I think this is pretty standard. Gary has the link to protocol guidelines put together by a number of the CCCs for treatment and those guidelines contain the answer to what is standard and recommended.

Hope this helps.

Nelie

Jane,

Based on what I read in my surgeon's writeup, some of my salivary glands were removed during surgery, so certain ones were already gone before radiation even started. At the time I was treated, IMRT wasn't around, so I had general field radiation and most of the remaining salivary glands got pretty well fried. However, within a year or so after my radiation, I was in clinical trials for Salagen and was one of those that benefited noticeably from taking it (and I've continued with it ever since). Between my daily doses of that -- 3 times a day, with meals -- and using Biotene mouthwash and gel, and staying reasonably hydrated with water, my salivary function has improved quite a bit over time. I can eat basically anything I want to (other than the spiciest curries), and I've been singing in choirs for the past 13 years.

Regarding your question about why they don't do radiation right away -- sometimes they do. This is not a "one size fits all" situation. Depending on the location, size and other characteristics of a particular tumor, the sequence may vary from one case to the next (or it may be possible to do radiation without surgery, or vice versa).

The teeth and gums do need ongoing attention for the rest of your life after treatment. I have my teeth cleaned at least 4 times a year and see a periodontist at least twice a year. At this point (age 55) I still have all my original teeth, so the regular preventive maintenance has worked so far.

I'm glad you're continuing to look into further treatment options -- please keep us posted and feel free to keep asking questions.

Cathy

I forgot to mention that I had my submandibular salvary gland on the left side removed during siurgery as well. So I did have some drymouth (and was managing it fine with Biotene gum and moutwash) even before radiation.

I have always wondered if that is standard procedure for surgery when you have the tumor on the tongue and goes along with the neck dissection. Does anyone know? I didn't even realize that the submandibular was a large salivary gland that was removed until I went for my second opinion. I assume he removed it because there was some chance that the cancer had spread there?

Hi Jane,

After my tumor was removed, I received radiation although my lymph nodes were clear. Becuase there was no tumor to target, I was not a candidate for IMRT radiaton (the type that spares a lot of adjacent tissues). Rather the goal was to radiate those areas of the head and neck where any lingering cancer cells would likely be located. This included the tumor bed, the lymph nodes, muscle tissue, etc. with a broad radiation field. I have dry mouth now, but the saliva flow is slowly improving as is my sense of taste.

You might find it helpful to do a search on the OCF website for occult or micro metastasis. If I remember the statistics correctly, in almost 30% of cases where surgery has removed the tumor and there is no sign of spread to the lymph nodes, recurrences occur. I would be inclined to follow your doctor's advice.

While radiation is an extremely unpleasant experience, most of the acute symptoms (the pain, discomfort, mucous, etc.,) are temporary and the benfits may be life saving. As Cathy mentioned, post-radiation, dental care and hygiene is extremely important.

Best wishes with this difficult decision. Sheldon