Hello everyone,

As some of you might recall, I'm 34 years old and was diagnosed with a stage 1 SCC to the tongue late December. I am being treated at Sylvester, a CCC in Miami, FL. On January 10, I had a partial glossectomy and a modified radical neck dissection.

The original pathology report came back clean. A second pathology report revealed a microscopic speck of cancerous cells in one of my lymph nodes. My doctor recommended radiation, although reluctantly. I went on to see a radiation oncologist (who also did not seem convinced I needed radiation, but was going to go ahead and treat me). I was ready to start radiation treatment on Monday.

Tonight, however, I had a long conversation with my doctor and there has been a recent development. My doctor (who I'm told is considered to be one of the top head and neck specialist in the country) has been discussing my case with other top doctors in Europe. These other doctors advised my doctor that radiation treatment was unnecessary in my case. Basically, the studies that exist (about people with microscopic cancer in one lymph node) are inconclusive with respect to whether or not radiation is warranted.

After telling me all this, my doctor confessed that his recommendation might have been overly aggressive, and he even provided the background of why he decided to recommend radiation. A couple of years ago, he had a young patient who came to him with an early cancer to the tongue. The small tumor was taken out and nothing else was done. Soon after, the cancer recurred and the patient ended up dying. Understandably, this had a profound effect on my doctor and he obviously does not want this to happen again.

At the same time, he was very blunt in telling me that if I don't get the radiation, I have about an 85 percent chance of being fine (i.e., I would have about a 15 percent chance of recurrence). If I do get the radiation, my chance of recurrence goes down by about 7 percent (i.e., my chances of recurrence after radiation would decrease to about 8 percent). He then went on to tell me about the negative effects of radiation: pain, dry mouth, losing my teeth, difficulty eating, etc.. some of which might even be permanent.

At this point, I'm once again totally confused. I'm not sure if a mere seven percent improvement would justify the effects of radiation.

I've learned that some of the most aggressive tongue cancers that have been seen recently are among young people who have never smoked. I smoked for about 17 years and despite by unusually young age, my doctor tells me that my cancer did not seem particularly aggressive.

Of course, he has not exactly discouraged radiation. He is just pointing out that the decision of whether or not to get the radiation is not as clear cut as I had thought. Ultimately, of course, the decision is mine.

What the HELL should I do? What would you do?

I do plan to get a second opinion. I'm considering either Sloan-Kettering or Anderson. Which one should be my top choice?

Any input will, as always, be greatly appreciated.

regards,
Gino

Dear Gino, If I were walking in your shoes, I would get the 2nd opinion ASAP, from either of the above CCCs- and if you have read much on the site, you know how people here feel about statistics You are awfully young to have to go through this. I hope you have a good support system.Take care. Amy

Gino,
that is a tough choice. Possible 7% improvement in 5 year survival. With 85% already in the bag. Plus you're already at a CCC, getting expert advice and you had early staging. My MO basically told me the same thing - these are all of the weapons in the arsenal and I have to choose which ones. I read up on it, got lots of opinions and let my intuition take charge.

With radiation they gave me an 80% chance of 5 year survival but my staging was more advanced.

I am sure that you will get a lot of feedback on this.

Hi Gino - Of course whatever you do is a very personal and very serious decision but, from a statistics perspective, my husband and I both would see 7 percent better chance as pretty significant. I know when John's doctors talked to him about adding chemo to the radiation they cited a solid 8 percent greater rate of a positive impact as their rationale for doing chemo plus radiation.

As my sister-in-law, who's head of medical research at a university in Australia pointed out, 8 percent means 8 more people out of 100 do better with chemo and radiation than radiation alone at my husband's stage of tonsil cancer. And, she said, one of those people might just be John.

Our motto was "blast the bastard" with everything possible. Of course he was diagnosed at a much later stage than you.

Mary

Gino, I personally would not take the chance. If it is in your lymph nodes, cancer can set up shop anywhere in your body, although I believe lungs, liver, and brain are the most frequent sites. I had rad and chemo. I did not have a terrible time for more than a couple of those weeks. I can spit. I believe radiation saved my life. My non-medical recommendation is to hit this terrible disease with everything available so you can improve the odds of only having to deal with it once.

That said, we will support you in whatever decision you make.

Hey Gino,

This is one of those choices I am glad I didn't have to make. I support you 100% in the avoidance of radiation. My doctor said I could, but he wouldn't. Tumor board said no radiation. Then this young guy from Miami comes on 3 years after my surgery and tells his story of 2nd pathology of the slides. BIG DOUBTS enter briefly. I will tell my doctor when I see him about the study you are participating in. I think he would vote for me to be in the control group, no radiation.

Like my name says, I am living in paradise, life to the fullest and EVERYTHING in my life is different post cancer treatment. I consider myself one of the lucky ones, time will tell if I am. The fact of the matter is that if it does come back, I will not beat myself up over the choice I made but face the next step in same way I did the first, head on, eyes wide open (behind my always optomistic) rose colored glasses and beat it again.

Sincerely,
Lisa

Gino,

I agree with you about getting a second opinion from MDA or MSK -- this can be a tough call when you're at Stage I with what looks like a pretty good chance of survival without radiation.

That being said, if you get input from another team that suggests radiation is warranted, try not to be put off by the list of "negatives" you heard from your doctor. Yes, there are a number of common side effects that often go with radiation, but they're not automatic in all cases. (I still have all my original teeth, and have gotten back quite a bit of salivary function, even though I had radiation years ago when there was far less that could be done to alleviate dry mouth.)

Please keep us posted on what you find out.

Cathy

Gino, I don't have a recommnedation for either MDA or MSK but I agree you really need a second opinion since you appear to be in that gray area where some doctors think one thing and some think another. Also, I tend to agree that a 7% better chance is pretty significant, but only you can say what number is the one that would make it worhtwhie for you. And also I have to agree with Cathy that that list of negatives your doctor gave doesn't seem to always be the case these days, espeically with IMRT radiation. There seem to be plenty of people on this board who recovered very quickly and fully, didn't need any teeth pulled, etc.

Nelie

Gino,
You certainly have a difficult decision to make. You've done all the right things, including going first to a CCC. The above advice about getting a second opinion from another CCC is also sound. Additionally, I would suggest that you do a search of the OCF web site for "occult metastis" (occult mets) and "micro mets".

If I remember a post from Brian on this topic, some 28-30% of Stage I patients experience a recurrence because of occult mets. Not being a doctor, I have no idea if having a few cancer cells in a lymph node changes these odds or not. You might ask your doctor that question. I would also want to ask him what type of radiotherapy you would get if you were to go ahead with it. Is IMRT radiation a possiblity? If so, it would minimize some of the side effects, particularly loss of salivary function.

Remember what Kathy G. says above, although radiation is no walk in the park, it is doable and survivable and the long term effects can be reduced. Amifostine is a drug you can take that seems to preserve salivary function. You should be able to retain your teeth. If you decide to get radiation, make sure you see a dentist first -this can help avoid dental problems post radiation.

Whatever decision you make, I wish you the best. -Sheldon

I'm a little fried here. How many people here had mets to a node, micro or not, and did not get radiation? And, how did that work out?

Glenn

Glen is asking the question that NEEDS to be asked. I'm, as he says, a little fried also. I had micro mets to one node, top of the chain, but I had a full course of Radiation and it wasn't a decision to make...........my doctors gave no choice. Knowing what I know from this board, I wouldn't think of passing by radiation if I had nodal involvment.

Gino,
Keep in mind also that there is a time frame when radiation is most productive. You don't want to go to long with all this.

FWIW, and I know it's a totally different cancer and probably not all that comparable, My dad is a 22 year survivor of colon cancer, had microscopic mets to one node that showed up in a careful pathology report, was advised, similarly to Gino, that radiation was optional, opted not to have it, and seems to have come out OK so far!

He may have been just lucky, and this was 22 years ago so he might get different advice these days, and I know it's a different cancer.

But it's also really possible this is a gray area when the mets are really microscopic and in one node that has been removed. Right after I had my neck dissection but before the path report ahd come back, my ENT actually mentioned to me this possibility and that if they only found "a few cells" it "would be a difficult decision" that I'd have to make.

I didn't have to make the decision about radaition because of that, as it turned out, but it makes me beleive many people think this is a gray area.

Nelie

Hello everyone,

Thanks for all your suggestions/input. Frankly, I've been "fried" for quite a while. My doctor (the surgeon who operated on me) has changed his mind three times in the last month and a half. He went from telling me the pathology report is clean and that nothing else was needed, to telling me that there is micro cancer in one of my lymph nodes and hence I need radiation, to telling me that others have told him that radiation might be too much and that his recommendation might have been overly aggressive and unwarranted. As I also said in my previous post, even the radiology oncologists seemed rather unconvinced about radiation--it's ultimately a "judgement call."

In short, making a decision is taking long not because of some capricious tendency on my part, but because I've been given mixed messages.

With respect to Glenn's question, it is a good one. It's something I would like to know myself. How many people with micro cancerous cells in one node who avoided radiation have done well? As far as I know, the research varies. Some studies find that radiation is a good idea, other studies suggest that radiation is overkill and of no real benefit.

I can say I am a candidate for IMRT radiation, and, judging from the feedback, the effects might not be that dramatic.

I'm in the process of scheduling an appointment at Anderson for a second opinion. Please, if anyone has been treated there and cares to recommend a particular doctor, let me know.

Gino

If I had KNOWN malignant cells, even in a small amount, ANYWHERE after treatments, I would want them gone by whatever seemed the most effective mechanism. They are not going to go away by themselves, and they will reproduce apoptosis immune daughter cells until you have something of real consequence to deal with. At that point you have the devil to dance with.

My RO at MDACC was Kian Ang MD. The whole team there is great but this guy is the head of the radiation group. Dr. Kies is an oncologist that sees new referrals to the head and neck group and will likely be the person you talk to for a 2nd opinion. It really doesn't matter who you see, you will likely get a group opinion on on your situation.

Gino,

I'm fairly sure I know the answer to my question, no one has passed on radiation if there is cancer in their nodes. Some have passed on surgery, but not radiation. My point was that no one here should be telling you anything to dissuade you from seeking additional treatment, you need the second opinion ASAP. The target time for radiation is 6 weeks, 8 tops. I don't like to keep brining it up, but according to the staging protocol you appear to be higher than stage 1. I'm sure that the fact that it it a "micro met" may be a mitigating factor, but once it is in a node you are generally higher than stage 1.

Glenn

Hello again everyone,

the real issue here is that if do decide to go with radiation, there is a very high probability that we'd be "mopping where there is no dirt" (to use the words of the radiation oncologist I've been consulting). So, Brian, I really DON'T know if there are any malignant cells in me--no one does. If I did, getting the radiation and anything else I'd need would be a no brainer.

The prospect of going through a harsh, physically grueling treatment for no reason, especially when it can cause permanent damage, is just very difficult to accept.

I had a long talk with the head of radiation at the CCC where I'm being treated, and he repeated over and over again that he is not able to give me a solid recommendation of whether or not I should get radiation. In effect, he made it abundantly clear that any suggestion he (or anyone else) gives me would be purely speculative and not grounded on anything factual/objective/scientific. Ultimately, therefore, it is little more than a judgement call.

He also mentioned that while radiation is usually started 6 weeks after surgery, up to three months is acceptable.

I will decide after I see the people at Anderson. I just hope I'm able to see them soon.

Gino

You know, for a group that tries to avoid "absolutes," there is quite a bit of determinism in the latest replies. Glenn, unfortunately, no one can really be sure (or even "fairly sure") about what the correct answer to your question is. There is just no real basis on which to be "sure."

Brian, two top doctors at a CCC have told me that even if there ARE microscopic malignant cells, it is not clear whether or not the immune system can get rid of them. There is absolutely nothing "black and white" about this, which makes it particularly frustrating.

Gino

I would be the last one to suggest that ANYTHING about cancer or its treatment is black and white, and have frequently stated that there are no absolutes. I merely stated what

I did not mean to come across as hostile. Please know that I value and appreciate everyone's feedback.

I have called Anderson for a second opinion and given them all my information. I was told that they need all my medical records before they can even give me an actual appointment. I was also told that, for a second opinion, I should plan on staying in Houston for about 5 business days.
My medical records were sent to them on Friday, so I'm hoping this whole process will be quick, as I don't have much time.

Luigi,
My team at MD Anderson consists of surgeon and chairman of the head and neck department, Randall Weber, radiation onc., Adam Garden, and the one whom I particularly like, my oncologist, Ed Kim. Be prepared...the head and neck section at MDACC lacks enough space and can be crowded with long wait times. MDACC can feel like a cattle call, but, as Brian said, these people know what they are doing and they have seen thousands of cases.
Best of luck and if you need any help or suggestions regarding Houston, please feel free to contact me.

Take care,
Danny G.

Gino,

My question was directed at forum members, not the general population. I have been here 3.5 years and I can be "fairly sure" on the answer. It was kind of a rhetorical question because I felt that some people were guiding you to not getting radiation. I felt, and still do, that you need the 2nd opinion ASAP. That is all. One way or the other, it is of no matter to me. It would be nice to avoid radiation, but not if you need it. My concern is that the decision is based on proper medical guidance, not the decision itself.

Best of luck,
Glenn

Gino,

I would like to offer my biased analogy. Having the first bout of cancer was like sitting back playing Russian roulette with one bullet in the chamber and spinning it. You may have dodged the bullet but are now faced with a positive pathology report of living cancer cells in at least one lymph node. Now, add a bullet to the chamber, spin and fire. Still feeling lucky? ...add another bullet, etc. How full can you load the chamber and still dodge the bullet(s)?

I have shed a few tears over the past 2+ years over this dreaded disease, some for me and family but many more for the victims that are no longer with us and their families that they left behind.

I didn't bat an eye at radiation but was reluctant to go ahead with surgery. Even after 2+ years I find myself second-guessing my decision. Battle this beast as hard as you can...you may only have one chance.

Just my opinion. I am really glad to hear you are going to MDACC for a second opion. Best wishes.

Ed

Hi Gino,
There was one poster on here, along with her sister, that touched me and I think of her alot. Her name was Marcy and her sisters name was Michelle. Below I have copied and pasted some of her posts and some of her sisters posts. Marcy died last April, she was 32 years old, mother of a 4 year old girl. She had tongue cancer, with one lymphnode affected. She didn't have radiation. Please read hers and her sisters words to get a feeling for why some of us are pushing you to radiation.


Marcy
Contributing Member (25+ posts)
Member # 965

posted January 28, 2004 09:08 PMJanuary 28, 2004 05:08 PM
--------------------------------------------------------------------------------
Brian,
Your situation sounds alot like my sister Marcy's.
Her first surgery was January 03, resection of tongue and lymph nodes. One node positive and they told us they didn't recommend radiation. If only we could turn back time and have tried the radiation right away. In June she had a recurrance in her neck and submental area. Then they recommended radiation and chemo. After this she had a radical neck dissection. 2 months later the tumors recurred in the neck, face, and also skull mets and c1 mets. She was in such horrible pain. Her tumors are continuing to grow so fast it doesn't even seem possible. She also got the pneuomonia last week and had to be admitted for 2 weeks. She received the Gamma knife for her bone mets and now they are going to do IMRT for the tumors in the face and neck. Is this what your friend is receiving. They want to try and shrink the tumors so she has longer to live and less pain. She is on a morphine pump at my mom's and still in alot of pain. I don't know how much more of this she can take. Watching this pain in my beautiful little sister is heart wrenching, she is only 32 and has a beautiful 4 year old daughter. We continue to pray hoping God will change his mind and let her stay with us.

God Bless you,
Michelle

--------------------
Michelle, sister to Marcy
Dx January 03, partial glossectomy/selective neck dissection T2N1MO/recurrence June 03, radiation and chemo/recurrence Dec. 03 mets to spine and base of skull//palliative care//lost her April 10th 2004 Age of 32

Marcy
Contributing Member (25+ posts)
Member # 965

posted July 25, 2005 10:24 PMJuly 25, 2005 06:24 PM
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Hi Dave,

I read your post and thought I would tell you what they did for my sister Marcy. She was diagnosed with I believe a stage 2 SCC of her lateral tongue, she was 31. They did a partial glossectomy and neck dissection. She was very scared about losing part of her tongue but she could speak very good after she healed. She did have 1 postitive lymph node. They chose to do nothing else for Marcy afer her surgery because she had only one positive lymph node. NOW I can't even begin to imagine why her doctors wouldn't have recommended aggressive treatment.
Marcy had a CT scan 3 1/2 months later that showed her cancer had spread extensively throughout her neck. THEN she had chemo and radiation and also a radical neck dissection.
Nothing could stop her cancer at this point. I suggest you treat the cancer as aggressive as possible. I believe Marcy should have received rad and chemo immediatly not wait those three months. Marcy felt something wasn't right from the beginning but her doctors didn't always listen....
Anyway, that is some of Marcy's story.
I wish you the very, very best as you make your decision.
Bless you,
Michelle

--------------------
Michelle, sister to Marcy
Dx January 03, partial glossectomy/selective neck dissection T2N1MO/recurrence June 03, radiation and chemo/recurrence Dec. 03 mets to spine and base of skull//palliative care//lost her April 10th 2004 Age of 32

Hi folks,

Minniea, Marcy's case is certainly disturbing. Was her one positive lymph node enlarged, or was it a micro positive? Also, do you know if she was a non-smoker? I'm just curious.

Uptown, it's very likely I'm dealing with an empty chamber. That is to say, I might very well be cancer free. That's what makes the decision so difficult.

After thinking about this for the past few days, I'm leaning towards the radiation. In fact, I went to get my second simulation today, so I'm all set to go. I figure that if I don't do anything and have a recurrence, I'll never forgive myself. On the other hand, If I get the radiation and it comes back, at least I can tell myself that I did everything I could. Of course, what I REALLY want is to not have to deal with this ugly beast ever again!

Thanks for all your comments.

Gino

Hi Gino,
I do know that Marcy was a non-smoker, not sure about the node.
I realize that my tumor was a stage IV, but, it was well contained within my jaw bone and my node situation was the same as yours.............micromets. I had the lymphnodes removed and had radiation. I had clean margins from the surgery and, quite possibly, was cancer free after the neck disection. But, it was in the nodes and to me and my doctors that meant radiation. They couldn't promise me that the cancer was all gone in my neck, but they COULD promise me that my chances of it not coming back were better WITH the radiation. I did not have chemo.
I'm happy you're leaning to radiation, especially if you are able to get IMRT. Most of the IMRT patients on this board are doing very well. I didn't have IMRT and, while I'm not having issues with my teeth, I was up until a month or so ago eating steak, chicken, pork, mexican food, you name it, I was eating it. Is it different? Yes. But you get to the point where you REALLY have to THINK about WHY it's different, as your body adjusts to your "new normal". I had conventional radiation and I taste just fine and still have saliva.
We're thinking of you!
Minnie

Gino, that logic of "if I don't have the treatment and get a recurrence I'll never forgive myself" is pretty much what made up my mind too (although getting a second opinion where they strongly recommended it anyway also helped).

Nelie

Let's not forget Heather, she was 28, didn't smoke or drink and had an early staged cancer as I recall. Considering that they can't even a detect a tumor as small as 2mm with any conventional scanning technology this micro stuff is almost absurd. You are aware that tumors send thousands of cancer cells into the blood every day, right?

If you die you won't have to worry about forgiving yourself.

I'm not understanding that last remark. Gino didn't reply on a scan, his mets were determined to be micro mets from the pathology done on a neck dissection. Gary, are you saying that should be enough for radiation because detecting possible recurrences at an early stage is unlikely because of scanning limitations?

Nelie

Hi!

Gary, within the context of my last post, your last comment (i.e., "if you die you won't have to worry about forgiving yourself") is alarmingly deterministic, as it assumes that a recurrence automatically means death. I know you probably didn't mean this, but your comment can be easily interpreted this way. If I don't get radiation and do have a recurrence, I hope I have plenty of time to be pissed at myself. I know I'd still have plenty of fight left in me (even as I kick myself in the ass).

Nelie,I understand that your case is similar to mine in that your doctors found micro traces of cancer. However, as I understand it, there are at least two factors that distinguish my case from yours. First, yours was a stage four tumor (mine was barely a stage one). As Gary said, tumors send thousands (perhaps millions) of cells into the blood each day. Obviously, the bigger the tumor, the riskier the situation becomes (no matter how "contained" the tumor might have been). I know people here have insisted that the staging changes (it becomes higher) when they find cancer in the nodes. However, according to every doctor I've spoken to, cases of micro malignant cells like mine defy conventional staging standards. Namely, they simply have no idea what to make of it. Second, you mentioned they had found micromets in your "nodes" (meaning more than one node). As far as my doctors could tell, a microscopic speck of malignant cells (which they found after using a number of different dyes) was found in only one of my nodes.

I'll be flying to Houston early tomorrow morning and seeing the folks at MD Anderson. I have an appointment at 2:30. They will review all my records and give me a second opinion. I will make my final decision after they have made their recommendation. Luckiy, I have already completed the simulation process and I'm ready to start radiation treatment if they tell me it is warranted.

Thanks again for your comments and support.

Gino

Nelie,

I forgot to mention the reason why I asked if Marcy was a non-smoker. One of my doctors mentioned that the most aggressive types of tongue cancer seem to occur in young people who are not smokers. I was told that my case is closer to a "textbook" type case. Namely, despite the fact that I'm relatively young (I'll be 35 next month), I smoked cigarettes for a bit over 17 years. Furthermore, I smoked a lot of cannabis (i.e., marijuana) throughout college and graduate school. To this I could add that I was addicted to diet sodas and ate way too much meat. Of course, this has all changed. In fact, I underwent a MAJOR lifestyle change a few months before being diagnosed (no more smoking of any type, better eating habits, etc). The point is that my case is not particularly extraordinary in the sense that my habits clearly promoted (if not "caused") my cancer.

Gino

Gino,

Good luck tommorrow. I follow your thread very closely- as we have a similar situation and I am struggling with the issue of radiation as well. I was not a smoker however and don't know if any of my nodes are positive with micro amounts of cancer. I am going for my second opinion on Thursday at Ohio State Cancer Center. If they say it is needed - then I'll probably get it - as I think that is what you are leaning towards too.

Good luck!

to the person who posted: "If you die you won't have to worry about forgiving yourself." I don't think this was really necessary was it? Those of us who are seeking advice are seeking it to make an informed decision we are comfortable with. We don't need to be told that we might die if we don't have the treatment that others have had or that you think everyone needs. Every case is different and without all the facts and history - comments like that are really inappropriate. Quite honestly - those of us facing this disease as a new thing in our lives are already scared silly (as you probably were when you received your diagnosis). Death is already an issue in the back of our minds although we would like to think it wouldn't happen (especially at such a young age). To have someone very emphatically say that it would happen if they don't have the treatment you suggest - isn't appropriate. Please be considerate. I know we are new to these forums and may not have the experience with this disease that you do - however, we still don't need to be given a death sentence by someone on this board if they choose not to have a treatment that is not a clear cut decision.

Gino,

I think you are confusing me with Minnie. I had a stage 2 tumor and no mets at all--micro or otherwise, alhough I did have some other signs of an aggressive cancer so I went ahead and fought it all the way the first time.

I think you are misunderstanding what your history of smoking does to your risk of recurrence. From everything I have read, it makes it worse, not better since oral cancers in nonsmokers may be caused by HPV and there is some data that HPV-caused cancers have a higher cure rate. Also, the history of smoking means the whole of your mouth has been potentially exposed to an agent that caused your cancer, this is sometimes called "field cancerization" and may increase the likelihood of a recurrence somehwere else in the mouth. I say this as an ex-smoker myself. But if you are unsure about this, ask them at MD Anderson.

I agree that the comment "if you die you won't have to worry about forgiving yourself" was a bit much. There was a period of a couple of weeks when the information I had was unclear about whether I needed radiation or not and the decision process was hard and scary enough as it was, and inducing a strong fear response really does nothing to help people think it through carefully and seek more information, as both Gino and Amy are obviously trying to do.

Nelie

Nelie,

My apologies for confusing you with Minniea--it has been a long day. With respect to the issue I raised about young non-smokers, I was told by a doctor at the CCC where I was treated that the most aggressive tongue cancers he has seen in recent years occur among this group (i.e., non smokers who are in their twenties and thirties). I don't think I misunderstood when he told me this--he was pretty clear and straightforward. Can it be that "agressiveness" and "chance of recurrence" are two separate issues? I'm not sure about that. Of course, it's well known that smokers are at higher risk than non smokers for several types of cancer, even after they quit. And it's really no surprise that oral cancer is no different. I will certainly ask this question to the folks at Anderson.

Amy, I'm happy to hear you'll be going to Ohio State for a second opinion this Thursday. Write down all your questions beforehand. I'm even taking a tape recorder. I'm hoping the doctors allow me to record our consultations. Best of luck to you and keep me updated.

regards,
Gino

Gino and Amy M, As caregiver to my soulmate, who is battling the reoccurance of this damned disease, I wish you both the best advice and treatment out there. God Speed. Amy

Hi Amy,
I don't feel Gary's comment about dying was inappropriate in any way. Scary maybe, but not inappropriate. Please keep in mind that this board IS scary, none of us WANTS to be here. Lives have been saved by the words given out on this board. Gino is facing a life/death situation right now, so any mention of death is certainly warranted. If Gary didn't care, he wouldn't comment. Also keep in mind that all of us on this board think of death every single day, and some of us have been for quite some time now. A lesson in the fear of this cancer or how it makes us feel is not needed, we've been living with it on a daily basis.
Now, before I come across as being cranky, please don't feel that I am. I feel strongly about the decision that Gino has in front of him. It's why I posted about Marcy and why Gary made the comment he did. I don't think that we have any posters on here that had mets to the neck and didn't have radiation. I wonder why.
Minnie

My mom had her first surgery for her stage I tongue cancer and also had a neck dissection. All of her nodes were negative (no signs of cancer at all) and her ENT did not recommend radiation. She did have a recurrance and was lucky that they acted on it quickly and she was able to have radiation after the recurrance. After her recurrance her cancer could no longer be staged. I had not done much research after the first surgery but wish that I would have.

My mom has the same ENT as a girl named Stephanie that was posting in this forum. The ENT performed surgery on both my mom and her mom and did not recommend radiation. They both had recurrances and my mom was fortunate enough to have been able to get the radiation after her second surgery and she is doing great today but Stephanie's mom passed away. They were both battling this at the same time. I think that saving the radiation for a recurrance is a risky thing.
During my mom's battle with this diesese both Gary and Minnie were there for me every step of the way. I cannot say enough wonderful things about both of them. What Gary says may sound harsh but he is only speaking the truth.

I hope that both of you find the answers that you are looking for and I hope you find them quickly.

Dani

Cancer recurrence isn't exactly like a recurrence of the flu. I been here a while and seen too many people die from recurrences. Frankly it scares the crap out of me (and fuels the saying "you can be cancer free - but you are never free from cancer"). And we haven't even touched upon distant mestastesis threats. It's not in my nature to sugarcoat anything. I am a patient advocate and "Feel good" crap is not part of my charter. This is a deadly disease and the survival odds aren't exactly the greatest, nor have they substantially improved in the last 10 years. There are 28,000 new cases every year and 9,000 deaths. I die a little inside every time sometime dies here - it's like a little piece of me dies with them (Heather, Gail, Dinah, Marcy, Packer and many others names are permanently imprinted in my brain.. Have you ever wondered why there are only a handful of regular posters on this board or why so many of the original posters are not here anymore?

I don't know if Gino is facing a life and death situation but he is facing a decision that could ultimately determine his life or death. Too many times I have seen people attempt or rationalize to take the easy way out, either by the "convenience of the local hospital" (not having to travel to a CCC), or believing a surgeon about clean margins. Or afraid of radiation side effects (and it does have side effects) All cancers start out with one mutated cell -that's all it takes. Microbiology 101.

When you've been around here long enough and watched the death toll on a regular basis (and some of these are far more courageous than I could ever hope to be). I guess my real fear is that I won't be able die with the same dignity, courage and fortitude that I have seen here. Was my comment meant to be "deterministic"? I am not a doctor - all I have is 3 years of experience and observation for whatever that's worth. Was it meant to be FOOD FOR THOUGHT? - yes indeed.

I want to see everybody survive this horrible disease and that includes Gino. Sometimes peoples intentions need to be tested.

And yes it IS necessary to kick people in the ass from time to time (but it is is a well intentioned kick).

The reality is that none of us are going to be given back our original life span before we had cancer. We have only been given some time.

Gino, I commend you for taking the bull by the horns and getting the best medical advice you can get. You know that I'm pulling for you and if there is anything I can do for you - I'm there.

Amy - you may wish to re-read all of my posts in this thread - I didn't suggest any particular treatment to Gino. If you are going to criticize me please get your facts straight.

I'm wondering if anyone has heard anything from Luigi (Gino) since his visit to MD Anderson? I'm very curious what they ended up advising and also hoping that whatever the advice was, he is doing OK. Nelie

Nelie,

Sent you a private message.

Remarks by Gary were taken completely out of context. As I have started to see things around here, we are getting more and more people asking for advise on decisions they have already made. There are a few of us, having been around for a long time, that tend to be a little strong in our posts. We post based on our personal experiences, direct knowledge of poor choices made by members passed. I for one, will no longer post to these types of threads. I have had ALL of the recurrences available and I'm a little tired of arguing my experiences against useless statistics and speculations. Maybe the appropriate individuals can make a note in their post, "speculative posts only, others please reply by PM". That should do it.

As for not missing the people you leave behind, My daughter asks me if I'll miss her when I die (I am dying). I tell here that I'll miss her as I die, but my life is about her missing me when I go. My entire purpose is to make every effort to create good memories for her, memories that will leave her with positive thought of our years together. My experiences and opinions, and in my opinion Gary's (Gary, only my opinion) are starting to be wasted on here. You will find all you need using the search feature. I never thought I would say this, I'm done with public postings here. Those that need it have my Cellular number, please use it.

Glenn

I have been following this board for the past several months, as I underwent 2 surgeries and radiation for adenoid cystic carcinoma of the parotid (major salivary gland) T2N0M0. I am 42 years old non-smoker, 3 children, and am very healthy otherwise. I have not seen much regarding ACC in particular, but have found most of the information applicable nonetheless. ACC is very rare, I have spent months researching and asking questions, but always appreciate learning something new.

The choice to radiate or not is indeed a difficult one, as I went through a similar decision to that of Luigi's. After visiting 2 CCC's and obtaining additional opinions from well respected RO's with experience dealing with adenoid cystic carcinoma, there was still question about whether or not radiation was absolutely necessary now or to save it in the event of a recurrence. I chose to do the radiation, in spite of all the horror stories that I heard. I beleive that I was one of the fortunate ones, and have not yet experienced serious side effects that had made me so apprehensive. Yes, I have a sore tongue and a dry sticky mouth, and I can't taste anything at the moment, but it has only been two days since I finished radiation, and I expect most normal functions to return. I am 105 pounds and only lost 2 pounds during the 6 weeks of radiation. I used the "magic mouthwash" for the last 2-3 weeks as needed, but have not even need pain meds, just a little help with sleeping. One thing that I have noticed, is that usually only the people with the worst experiences take the time to write about them, so I just want to let some of you know that it isn't always that bad. I have about the best prognosis that I can expect at this point. I guess the advice that always stuck in my mind the most was that at least if it does come back later, you will know that you did everything that you could.

I am curious how long it takes to get your taste back though. My favorite foods were ice cream and chocolate, about the only tastes I can pick up at this point are some vegetables (no salt or sweet tastes at all).

Mary T

Dear Mary T. Good for you for posting and for doing so well and since I'm a little bit of a "health nut", I've got to say that swapping icecream and chocolate for veggies you can taste, may not be all that bad Amy

Mary, I am so pleased you got through rad relatively unscathed. You are absolutely correct that we tend to see the worst case things posted here. About your taste, I found that sweet was the last to return, and it came in fits and starts -- one bite great, the next no taste. By 10 weeks post rad I had all my taste back, including chocolate! So start marking off the calendar.

Hi Gino

I know I'm a little late to this thread, but wanted to add a couple of hopefully encouraging thoughts. I had pretty much the same deal as you did, SCC tongue and mets to nodes, except I was more stage 3 something, my case it was prett clear that rad/chemo was in order and even then tops 60 percent chance of surviving..

Glossectomy, neck dissection, rad/chemo, first time around when they radiated my tongue was the worse, did wind up being fed by IV for a week (no PEG) and felt bad for a few weeks later, but the tongue healed up after a couple of weeks, didn't loose any teeth, the taste came back after a bit and even though had reduced saliva still managed.. Then had recurrance on opposite side, more rad/chemo, and thanks to IMRT that session wasn't as bad, probalby could have worked until about 3/4 the way through, but had to go out of town for treatments and was only home on weekends. 3 years out, have enough saliva to get through, still all the teeth, hopefully no cancer, and can eat Thai, Indian etc spicy food.

Not a lot of fun for about 5 weeks, but if done properly will help to be sure you're around a bunch more years.

Let us know what you decided.
Bob

Luigi,
I had oral cancer in lower left jaw in Oct 2000 (T3N1M0 ) and also had 15 lymphs removed during op, of which one was cancerous. I had to decide whether to have radiotherapy, as they had booked me in a specialist unit for 2 weeks to have the treatment. After talking to my surgeon about it, and others, I decided to say no to the radiotherapy, and have fortunately been OK ever since. Good luck.
AJ

When you get into a fight with a bully you've got to hit him with everything you have. My RO and ENT explained all of the possible side effects and were very real in their assesments of how I would feel during and after the radiation. I know everyone is diferent, but I chose to have the radiation. Hit back and hit hard. Whatever your decision, good luck.

John