Hello everyone!

My name is Gino, I'm 34 years old, and I was diagnosed with squamous cell carcinoma to the tongue--stage one, or "T1". Being a T1, I was told that the tumor was very small and removable.

The physician who is seeing me, Dr. Francisco Civantos, from the Sylvester Cancer Center at the University of Miami, has pioneered a new technique whereby nuclear dye is injected into the site of the tumor to determine which are the patient's centinel lymph nodes. Apparently, this varies from person to person. After determining which of my lymph nodes would be at greatest risk through this procedure, they were surgically removed. I had both a partial glossectomy in which the small tumor in my tongue was removed, as well as a partial neck dissection to remove the most risky lymph nodes.

The surgery went well. After a week, the pathology report came back clean. That is, no cancer was found in my lymph nodes. Needless to say, I was elated, as I thought my whole nightmarish ordeal was over.

Unfortunately, just as I thought I had dodged the bullet, this morning I was told that my case was discussed at a conference by a group of doctors (I should also mention that I am part of a study), and a more thorough pathology report revealed that microscopic cancerous cells--a little "speck", to use my doctor's words--was discovered in one of my centinel nodes. As you can imagine, I'm pretty devastated.

After telling me all this, my doctor recommended radiation. He told me that up to 3 years ago, he would have told me to forget about the whole ordeal and just resume my normal life. However, he has seen cases like mine in recent years that did not end up very well. Thus, while he mentioned that he would support me if I decide not to get radiation, he does recommend it, as this appears to have been a pretty aggressive cancer. Of course, he also emphasized that radiation entails a myriad of very nasty side effects, and that it also increases the chances of getting cancer a few years down the road. This really scares me, as I'm relatively young. At the same time, he mentioned that if I decide not to do anything, I have about a 40 percent chance of recurrence.

What do you guys think I should do? Go ahead with the radiation? If so, what can I expect? Are the effects as bad as in some of the accounts I've read?

Any advise/input will be greatly appreciated.

Gino

First off when the cancer is also in a lymph node as well it usually indicates a more advanced staging than originally thought. Tongue cancer, by its very nature, is more difficult to treat and very aggressive. If it were me I would hit it with all they've got in the arsenal.

Three years ago you probably would have ended up with a recurrence that would kill you. So now you have to choose nasty side effects or early death - is it really a choice?

Side effects vary all over the map. Most people here speak of the worst case. Some have driven themselves to therapy every day and continued working. The type of radiation is crucial - IF you are a candidate for IMRT, it will vastly improve your QOL issues afterwards.

Gino, A 40% chance of recurrence isn't the best odds, is it? I know it can seem hard to take this on when you were first told you have an early stage cancer that can be treated just by surgery, I went through the same thing myself, but that "little speck" really does make a difference in your staging and the later-on risks of cancer from radiation are quite low compared to that 40% chance. There are lots of people here who have had IMRT radiation and have recovred from it quite well and without many QOL issues (I am not the best example of this, but I also had chemo). My personal opinion is hit it with the big guns.

Nelie

Gino, my vote is for the radiation treatments. Good Luck to you....let us know your decision and how you are doing. Carol

Gino,

I also felt devastated when I felt I had recovered reasonable well from surgery, had what seemed to be a fairly clear pathology report, and then heard from my tumor board that they thought I needed to go ahead with radiation. After lots of questioning, I decided they had evidently thought it through and had valid reasons for their concern (I was 39 at the time and the cancer appeared to have some aggressive traits). Radiation was tough to endure, as you will read over and over on this site, but thankfully I've managed to go almost 17 years since then with no recurrence. I didn't have the benefit of some of the more recent radiation techniques, but my quality of life is still great, and I have no regrets about having had an aggressive treatment approach.

If you go ahead with radiation, you'll find plenty of support and advice here to help you get through it.

Cathy

Recurrences are difficult to deal with. I mean difficult in the sense that they are aggressive and rapidly move out of localized regions and become completely uncontrollable. Plenty of postings on this board attest to that. Bite the bullet now and do the radiation. This disease is very unforgiving of half measures. Saying

Gino,

I agree with Brian about doing the radiation now. I was in a somewhat similar situatuion as you. My doctor told me my path report was negative after surgery and I needed no additional treatment. (They did not remove any nodes). The second opinion I sought in Boston produced a report that I had a positive margin in the surgical tumor bed and needed radiation. Which I then received.

Every one on this board who has received radiation will tell you that it is no walk in the park but it is tolerable, survivable and hopefully life-saving.

I would encourage you to ask your doctor about combining chemotherapy and radiation. There are new studies that seem to indicate better outcomes if the radiation is combined with chemotherapy or one of the new drugs like Erbitux. See this story in the news section of the site:
http://www.oralcancerfoundation.org/news/story.asp?newsId=1040

You may want to do a search to find similar articles.

Good luck with this difficult decision. - Sheldon

Hello again everyone,

Wow...thanks so much for the quick responses! Please know that each one of you has opened my eyes and eased my anxiety. The likely side effects I'll experience from radiation treatment are not necessarily my primary concern. Rather, what torments me the most is the possibility that I might be cancer free. Afterall, it is possible that whatever microscopic "specks" of cancer I had were eradicated when my sentinel lymph nodes were removed. Hence, I might be going through radiation therapy for no reason (hence my anxiety). Of course, not doing anything and knowing the pretty substantial likelihood of a recurrence as a result would likely give me even more anguish.

In any case, after reading your replies, it now seems like a no brainer--radiation it is! I know in my heart that you guys are correct and I should hit this thing with everything available. Hit it with the "big guns", as Nelie said. Brian's statement that "this disease is unforgiving of half measures" and Gary's remark about tongue cancer being particularly aggressive really put things into perspective for me. Sheldon, I will certainly ask my doctor about the radition-chemotherapy combination. Cathy, the fact that you've been cancer free for 17 years gives me a lot of hope--thank you.

Bless all of you and thanks so much for this wonderful web site. It's literally a life saver.

all the best,
Gino

Gino - Allow me to add my support to all the advice given above. IMRT radiation is very controlled stuff and truly limits the side effects. Ask about it. Request it.

Cancer is very unforgiving indeed. Living the rest of your life with a bit of a stiff neck is the better choice. Hit it with everything now. Your body can actually take quite a bit of radiation before it gets to "too much". Use it. Fight hard. Be strong. Tom

Thanks so much, Tom. This past month has been incredibly tough for me and especially my family. However, I'm doing my best to be strong, and will definitely fight hard!

best,
Gino

Gino,

You may not live the rest of your life with a stiff neck, it varies from patient to patient. I had a mandible resection, forearm free-flap reconstruction and a neck disection, This was followed by 35 radiation treatments and no stiff neck. Anyone else care to throw a false absolute at the guy while he makes his decision?

Glenn

Glenn,
I don't believe that was Tom's intention, to throw a false absolute. I understand your desire for good, accurate information being given on this board, but the way to accomplish that doesn't need to be by trying to embarrass nor riducule other posters. Tom has been a great source of encouragement on here, why try to make him feel silly?? You have made it clear that you believe the religious aspect can make people leave the boards. Other posters attitudes can do the same and I think that needs to be pointed out. And please don't anyone come on and tell me that's just Glenns way. He's a bright, articulate man with alot to offer and he's as capable as the rest of us to offer it with some sensitivity.

Gino, concerning the stiff neck. I had a neck disection and had my lower left jaw replaced and my neck is quite stiff. Even so, it's amazing how well a person can adjust to something like that. It bothered me alot at first but now I only notice it when I'm doing a physical activity and even then, I simply find ways to compensate for it. Let's hope you don't have any of that stiffness, as Glenn said, it's not the same for everyone. Good luck with your decision. I think the chemo/radiation route is the smart choice.
Minnie

Gino,

I agree with the post from everyone concerning the radiation. Throw everything at "it" that you have at your disposal now.

As for the side effects, they probably vary from person to person to some degree. As Minnie said, you just find a way to compensate. After a while, you don't think much about it.

Good luck to you.

John

Minnie,

I know the religious posts have caused people to leave the forum, just wanted that to be clear as well. As for my lack of sensitivity, you have no idea about me, or what I do here. I respect all you have endured, but if you do not like my posts, skip them. I do not like statements that appear to be the absolute answer and I'll call them when I see them. This was not the first by an obviously knowledgeable poster. I'll not question the residual problems you may have experienced, I had different surgery. If I had the same treatment, I'll open my mouth. Like I said, you can just skip them. I have tried diplomacy before, it does not work here.

Glenn

I have to jump in and agree with Glenn. It is perfectly cool to share your personal experience, strength and hope. Many times however, it is not made clear or disclaimed in any way that every patient is different and that HAS to be stressed otherwise instead of helping people we are, in effect, scaring the crap out of them when they need to make critical decisions -and not fear based ones.

The forum tends to be unbalanced as it is, because many who have easy times this with disease and treatment are reluctanct to post out of guilt or they feel bad for those struggling. Additionally, many who have gotten through this relatively unscathed, just want as much distance as they can get from cancer and any aspect of it.

I don't have a stiff neck, didn't have a PEG, have ALL my sense of taste back, love salsa and hot and spicey food, practically normal salivary function, kept all my teeth, no surgery and I had an very advanced and huge tumor. I really don't like gloating over this, I'm waiting for the "shoe to drop" just like many others out there.

The point being, that we are all different and all respond differently to treatment and this disclaimer must be added, in all fairness, especially for the benefit of the new people here. I believe that this is the point that Glenn was trying to get across and not a personal attack on anyone - but a concept that must be stressed.

We must remember the broader picture here - we are here to walk along side people going through this, whether they are patients or caregivers. We must be sensitive how we share our information, and even though we are not doctors, try to provide as balanced a perspective as we can.

I am totally in agreement with Minniea here with regard to the tone of some of the posts.
It seems each time someone takes offence at a rude post someone else jumps to this posters defence.
I understand that in pm`s the tone can be just fine and the information and sensitivity outstanding, but, most of the rude ones are out there for all to see.
As to, " skipping what we don`t like ", that works both ways guys.

Marica

I must say I appreciated Glenn's post and believe it wasn't meant as a personal attack on anyone. I too think we should be as accurate as possible when exchanging information. At the same time, I believe Tom was simply sharing his personal experience--giving me a "heads up" about the possibility of a stiff neck, and making the point that a stiff neck beats dying. Therefore, I appreciate that as well.

While I personally assumed Tom was basing his post on personal experience, I also understand that many others might indeed take these experiences as absolute facts. Therefore, perhaps Gary is right. Everyone should always be careful and make clear that what they say is based on personal experience and might not pertain to others.

I have another question. Does radiation treatment to the neck area cause hair loss (on the scalp)? Also, is anyone aware of research that looks into rates of recurrence among people with oral cancer who undergo radiation treatment?

Gino

Gino,
in my own personal experience my hair loss was that directly in the radiation field, i.e., my neck. I don't have to shave below my chin anymore. The back of my neck is pretty hairless too, but below the normal hairline so it's no big deal. Although a few survivor hairs here and there have grown back. Your scalp should be fine. Some chemos don't cause hair loss and that is temporary if it does.

Gino, can't help with the 2nd question, but John had IMRT and only lost a little hair at the base of his neck, in his arm pits, and a small amount of facial hair. No hair loss otherwise. amy

Glenn, I don't skip your posts, they are full of knowledge and intelligence. Did you skip the religious posts?
I echo what Gary posted, that we must be sensitive with how we share our information. Sensitive even when we don't agree.

I don't want this to be a big deal, I just know the sting of being made to look silly on this board.

Gino, I am very glad you are going to have rad, and hope you go the chemo route also. I did not have a terrible time. When the radiation burned my neck, I got drugs and it didn't hurt. The chemo was just time consuming. I got pretty tired, but not sick.

I had IMRT rad all around, I developed what the nurses called the radiation hairline on my neck, but it all grew back. I wear my hair up, and would not do that if it wasn't nice and even.

I had surgery, including a modified radical neck disection. The path reports looked good, but there was no question of my stopping there. My thinking was that I wanted to do this just once, so I wanted all the stops pulled out. That was four years ago. There are some ways in which I am slightly different physically, but I have to stop to remember what they are.

Looking at the big picture, the time you spend in treatment is a very small part of your life. It was not exactly fun, but I could have stood worse. It was all a pretty small price to pay for feeling so very good now and getting on with my life.

One reason statistics are pretty useless is that we are all different. What might not work for someone who continues the behaviors that may have caused the cancer, may be just the ticket for you. Bottom line, fight your best fight and forget about everyone else. Plain and simple, your best chance to survive is with the most aggressive treatment.

We have all developed many tips and tricks with which we can help you get through. Go in with a fighting spirit and you will find it will not be as horrible as you many have imagined. We will be here to help as much as necessary.

Joanna,

Thanks so much for your wonderful, uplifting post. It is great to learn that you're doing great after four years.

I'll be seeing the radiation specialist on the 6th. While my doctor did not say anything about chemo (he just recommended radiation), a couple of you have mentioned that chemotherapy should also be considered. Therefore, I'll inquire about it as well.

all the best,
Gino

Gino,

When I was going through my treatments my doctors told me that the chemo enhances the effectiveness of the radiation.

As for hair loss, I had it only in the radiation field. The hair on the back of my neck grew back. I don't need to shave the left side of my face any longer or below my chin. I did not lose my hair due to the chemo.

Good luck,

John

You see Minnie, I believe I am sensitive enough when need be. I do not believe that I make people look silly, they do that on their own, no help needed. I will continue to point out statements that speak as absolutes and, in fact I do skip over the clearly religious threads, they piss me off. My post addressed an issue with a statement, not the person. I was once invited to discuss an issue with that poster, and got jumped on for doing so. My problem with your post? Cautioning people not to defend me. Talk about personal.

Don't read my posts and I'll ignore yours. I believe my posts are a necessary evil(by your standards) and until my posting privileges are taken away, you will not change me. There are a few of us that provide a much needed balance here and a perspective on this disease I hope you never experience.

Glenn

Gino I went through the radiation and chemo treatment.My tumor was so far advanced by the time it was diagnosed I had no options.the chemo acts as a catalyst for the rad to be more effective.The effects on your body are quite a bit harder.One of the best things you can do besides the tough mental attitude is jam yourself with as much food and vitamins as you can to prepare your body for what your about to endure.Hang in there gino...You will make it

L8R Ryno

Gino,

I had the surgery and radiation. My BIG regret was not going for the chemo. Once this stuff is in your blood, you never know where it could show up. Just make sure the chemo option is well covered with your doctors.

Glenn

Gino, Ryno makes a great point. Unless you already have a lot of weight to lose, you will want to eat more than usual to put on some pounds as you will definitely lose a lot of weight during radiation. For me, that was the silver lining in the cancer cloud -- as much cheesecake as I wanted without regard to calorie count(grin). However, eating healthy food would be a better bet.

Gino --

Chemo adds about 10-15% effective to radiation, according to some studies and at least for my husband Barry, was the *least* problematic part of the treatment. He got carboplatin, it does not cause hair loss, the major side effect being some depression in platelets and certain other blood components -- but for him never to the point where he could not receive his (weekly) chemo dose. He was never sick, either -- it was a very low "radiosensitizing" dose.

The radiation caused hm to lose hair at the base of his hairline and on part of his cheeks and neck but now 4 months' out from treatment that is all grown back, except for a few areas on sides of his neck -- his beard is a lot darker now and he definitely has to shave regularly!

He had his primary tumor (right tonsil) removed down to connective tissue but no further surgery, it was not recommended to him by his RO or MO. The docs at Hopkins are finding very good results from chemoradiation alone in most cases.

The whole thing was definitely no fun but there is light at the end of the tunnel. Barry is pretty much back to normal now and we just got back from a pretty rigorous birding trip to Mexico. Of course he is being monitored very carefully (and regularly) so our fingers and toes are still crossed and will be for some years!

Gail

Ok Glenn, in the best interest of the board, I agree with you. Your posts are important here and I understand you better after your last post.
As far as me "getting personal" by asking others not to defend you, it wasn't personal, it was just being honest. I have no intention of ignoring your posts, in fact, I have a question for you. Why didn't you have chemo with your radiation? I've wondered many times why my doctors didn't go this route with me.
Minnie

The sad thing is, it was not common protocol back in 2002. They believed that the clear surgical margins and subsequent radiation would do the trick, and it did, for the head and neck. My problem has been with blood borne pathogens, they have given me cancer everywhere. I leave the house shortly for chemoembolization of my Kidney! I have had chemo now, after the cows got out! I have had clear nodes on the way to every cancer I have gotten!

Glenn

I think maybe we had this conversation before, Glenn, but even if we did it seems worth saying that the research that shows chemo adds 10-15% effectiveness to radiation adds 10-15% more to local/regional control. That same research also shows no effect of that particular chemo (concurrent cisplatin) on the likelihood of metastatic cancer. So even if you had the chemo, Glenn, it may not have been effective in the way you would have liked. I just say this to try to keep the picture of the advantages of chemo a little more balanced--and also because it is still not receommended protocol for treatment for many early stage oral cancers.

I'm doing research right now (or trying to) on the potential benefits of chemo to IMRT that I'll begin in February. At this point there are no plans for chemo since there is no protocol for it with the adenocarcinoma (not same for squamous?) of the minor salivary gland that I have. Anyone with good info on this could help me or at least steer me to it! Mine is considered "low-grade" still even after this third bout since it is still localized. The theory told to us is that benefits are uncertain due to the localization (non-distant mets) of all three incidents and as Nelie said "early stage" consideration.

Ruth.... It is difficult for someone to find your NEW topic of discussion if it is attached to the end of someone else's topic on a different subject. Would you please copy and past it into a new topic so that you wil not get lost in the shuffle? After you have done that, I will delete it off the end of this thread.

Dear friends,

Thanks again for all the helpful/constructive comments. On the 6th I'll be seeing Arnold Markoe, chair of the department of radiation oncology at the University of Miami and presumably one of the best radiation oncologists in South Florida. Luckily, he also works at the Sylvester Cancer Center--a CCC. So, he is in close contact with many other doctors. Your posts have equipped me with many questions that I plan to ask him.

My first question will be about the prospect of including chemotherapy as part of my treatment. I will keep you guys posted.

regards,
Gino

Nelie,
what you are saying is the same thing. "Local/regional" odds improvement is the same as the benefit for a chemo adjunct to radiation (in others words - not in addition to). I have not seen any studies to indicate that chemo by itself has any benefit for local and regional controls for head & neck cancer. I have read that Cisplatin, combined with radiation at three week intervals will improve survival odds by as much as about 15%. I don't know what the numbers are for Carboplatin, a slightly less toxic relative of Cisplatin.

Glenn is speaking of an entirely different aspect which is one of distant metastesis. One of the sinister aspects of SCC is that the tumor sends out thousands of cancer cells daily into the blood stream so there is a possibility of new primary tumors occuring in distant locations such as the brain, kidneys, esophogus, liver and/or lungs. This is why many argue for regular PET/CT's, not so much for screening for H&N recurrence but the distant metastesis issue. Your H&N team typically will not order such a PET/CT as it isn't that useful for H&N screening post Tx because of the propensity for false positives. It is a true medical paradox.

The cancer cells will typically "stick" in places where transitions with the blood are happening, like the aforementioned organs. A healthy immune system can take out these rogue cells as well, so it is hardly an automatic thing to have a distant metastesis. The long term survivors here will testify to that.

Ruth, studies have already been done about the efficacy of using a chemotherapy adjunct (soecifically Cisplatin or Platinol) to radiation. I do not know whether it is cancer specific but I would hazard a guess that it is not. Cisplatin is an alkylating agent that enhances the oxygenation of the tissues and increases the efficacy of the radiation.

Thanks for the answer Glenn. I wish you had been given Chemo also. I didn't have any in 2003 and it keeps me a little nervous. Did it take long for your distant metastasis to show itself?

Gino rad therapy was the hardest thing I have ever been through but take every chance you have to beat this, no pain as they say!!
You may have side effects later that you don't expect or understand but ask away to as many people as you can it affects us all in different ways and someone here will have been there

good luck
take care
peter

Gary, Right, I'm aware that local regional IS the 15% benefit. What I was saying (or trying to anyway) is the same thing you just said--that distant metastasis is something different and I'm pretty sure those two huge clinical trials that showed the benefits of concurrent chemo found it did NOT have an effect on distant metastasis (although I don't have the articles in front of me).

Nelie

Thanks for the response, Peter. Based on everything I've read (including some of the comments that were posted here), I'm bracing myself for what might be an excruciating experience. I just hope it ends up being a lot better than what I'm anticipating.

You know, I don't think I've ever felt this close to a group of total strangers. It's
certainly empowering to be in touch with people who are fighting the same battle.

regards,
Gino

Gary and Nelie,

Let me make sure I've understood this. Chemo adds 15 percent to the effectiveness of radiation at the local/regional level. However, the rad/chemo combination doesn't do much in terms of decreasing the possibility of distant metastasis?

Gino

It certainly is indicated for metestatic disease here is a link: http://www.chm.bris.ac.uk/motm/cisplatin/htmlonly/

Goino, I would need to be at home to look at the articles again to be one hundred percent sure about this but there were two giant studies, published in 2004 in the New England Journal of Medicine, one done in Europe and one in the States, that established that 10-15% effectiveness number. They also looked at outcomes for distant metastasis and I believe they did not find any differentce in that outcome based on whether the patient had received concurrent chemo or not.

It's been a while since I read these articels and I could be recalling wrong--I'm willing to stand corrected by anyone who has either article at hand. Even if I am recalling correctly, all the qualifications go along with this that should go with any null result--perhaps they didn't have enough statistical power to detect an effect there, etc.

Nelie

Nelie,

I do know if we did, or did not discuss this. I regret not getting a chemo wash with my advanced stage 3, early stage 4 cancer. I did not have SCC, I had adnosquamous cell, and it did not spread through the lymph nodes, it was/is in my blood I have never put much stock in all the numbers you and Gail throw around, as I am not a statistician. I don't doubt you knowledge, just the numbers. I do know cancer pretty well and, additionally, what I regret in my treatment choices. I never got cancer back at my original site and that is not where I am looking for treatment. As for metastasis, Myself, Danny, Dinah had excellent results on our mets by using Chemo. Our study involves getting a few more months and I think it is called palliative care. Not everything discussed on here involves a cure. These are the only 3 people I can think of here, is that too small a study?

Glenn

Glenn, my comment was not intended to address chemo used for other types of treatment, inclusing palliative care. I tried to be very specific that I was just addressing the use of cisplatin concurrently with radiation as it has become recommended since those studies came out.

I'm also sorry if it sounded like I was telling you what to regret. Of course you have a right to whatever regrets you have about choices you made.

Nelie