cindyt,

There are plenty of us out here who have had RT. While I wouldn't use the term good results, I am cancer free at this moment. There are side effects to live with, but to me it's worth it. Everyone responds a little differently to their treatment. The help I found here, from folks who had gone through it before me, made the side effects more manageable.

It's been a little over three years for me and I believe I made the best decision for me and my family. If you decide to have RT then use the information from the article to make sure your team monitors your therapy closely. And there are lots of folks here that will help w/all your questions or concerns

hope this helps
tim

cindyt,

I posted the article because I found it very informative--my intentions wasn't to scare anyone. When I had my treatments I knew the troubles that could follow and almost everyone did and then some. My doctors were very truthful but having said that I had no clue what could happen if things went terribly wrong during treatments. I'm a type of person who would rather know then not know. I thought the worst thing that could happen was that the treatments wouldn't work.

My margins were clean but I was treading on a thin line--sure--radiation txs gave me issues but I am fairly convinced I would not be here today if I opted out of them.

I think if you read through this site you will find a lot of us had txs with great success. Hard--YES. Easy--I'm not sure if anyone can say that...These treatments helped me see my 38th birthday..The side effects remind me that I am alive and may wake up and move forward to another day...another birthday. I experience pain every day but I am alive to feel it.

This site has the best information with the most caring people in the world and nothing here is easy. Very caring informative people helped me every day--almost immediately with every step.

cindy t - bottom line is that radiation is one of the few tools we have. And for the most part, it works even if there are some discomforts during and quality of life issues afterwards. I mean what is the alternative? To not have what the big hospitals and authorities recommend because occasionally someone makes a catastrophic mistake? Everything that has ever been done in medicine, has at some point, had a huge error take place in it. Surgery, chemo, meds that you are given, name one, and I'll find you someone that was hurt by the procedure by accident. Bottom line is that vast majority of people do not have a major problem, and that is what yo have to keep in perspective.

As patients, we all have to be vigilant, know everything that we can, and not blindly go where someone wants to lead us with out second opinions and information gathering. We need to make informed, educated, decisions. But you can't let the errors of one situation out of hundreds of thousands, put you off of choosing to do what gives you the best opportunity of having a positive long-term survival prospect at the end of your treatments.

Fear of it all is part of the deal. Anyone here that says they were not afraid, from the toughest sounding guys on, is just full of crap. We were all afraid of the whole thing, from the C word, to the treatments, to the unknown. You have to toughen up and get accustomed to some of that being part of who you now are. We are all frail when mortality is part of the discussion, and our situation. Even after a decade of survival, I still am afraid and get anxiety related upset stomachs the month before my annual exams. The tough guy that fought in the rice paddies of Vietnam, the jungles of Nicaragua, and the streets of Beruit, who survived helicopter crashes and cancer, still is afraid. If you were not afraid, there would be something wrong with you.

But now you have to put on your fighters face, and walk the path. Those here know what you are going through, and you need to lean on them and whine, bitch, complain, open up abut your fears, and all that that you do not want to lay on your loved ones, because we all will understand. And these people will help you deal with it all.

cindyt,
the radiation outcome greatly depends what exactly is irradiated and how sensitive you are. I have at this point (thankfully) only minor effects that I would ascribe to IMRT (some taste, saliva and dental issues). I know that IMRT killed my cancer (came back after surgery within weeks). It does take long time to recover as much as you can from radiation, there are improvements even after 2 years.

... and I echo Brian sentiment about freaking out. I had an MRI a few weeks back at 10 am. By 12:30 the same day I get a phone call from my oncologist.. and wonder why the hell is she calling me so soon???......... she just wanted to let me know that all was well.

M

Tha article would scare the crap out of anyone and I am not sure how it's presence on the forum serves the best interest of the members here. Not that this information shouldn't be some where on the site - just not here. Factually most of us have had radiation and are getting along very well.

I do recommend that you check the computer monitor that displays the machine setup parameters (there's usually always one in the treatment room) that YOUR NAME is on the program. There have been instances here like a lady who had her "prostate" irradiated because the previous patient was a no show and they didn't change the program.

Cindy,

I echo Brian, Gary, Tim and Markus. I am coming up on 4 years now and I also had IMRT administered by one of the best (IMO) RO's in the US and while the Tx was probably the worse thing I have ever had to go through and I fainted when I was told I had cancer, my side effects are minimal and I am convinced I would not be alive today had I not undergone concurrent chemo/rad. At the same time I am also thankful that I got opinions from 5 different cancer doctors before deciding to be treated at Moffitt.

I really think that article made sense to be posted. I like to know what can occur from treatmenst going in. As many surgeries as I have had, most Drs told me that death could occur and wanted to make sure I knew it. Ray I for one liked to read your post, but I am different than ,most and like to know the odds.

cindyt,

There are those of us who come out of treatment with fewer effects then others. I am 3 months from my last IMRT treatment. I spent last weekend with my 12 year old son and the boyscouts at thier annual "Klondike Campout" All weekend camping in the snow and cold here in Michigan. I made it just fine.

Last night I made myself a treat. I had a ribeye steak with mushrooms, some pasta and corn. I ate more slowly but I enjoyed it.

You will hear more about our problems here because this is the place we come for solutions to those problems. Also there are those here who have a more difficult time of it and its hard to post that some of us are up, about and eating steaks.

IMRT killed my cancer. It's the reason I can go to the scouting events with my son, even if they are crazy cold.

Kelly

I just showed the article to my husband who said, "yeah... I saw that on reddit yesterday but didn't want to tell you about it and scare you." Hmmm... thanks, honey.

No, I like many others would rather be informed of what could happen. The more I know, the better. Very very interesting article. I am very glad to be at a CCC. Hopefully that gives me an edge against mistakes like that.

For Cindy - I opted out of radiation the first time around a year ago due to my clean margins and it came back....requiring another surgery with more complications in addition to radiation/chemo. I wished I would have opted for the radiation the first time around. This cancer is a tricky thing. That being said.... there are cases that don't need radiation and if your doctor thinks you don't need it, well then, maybe you don't. But if it's an on-the-fence decision, I say go for it. I'm 2/3 through radiation treatment today and still doing "ok". I've even made it without a PEG so far (knocks on wood). That being said, my RO says I'm defying odds, I'm doing so well. It really varies person to person.

As usual, our family here falls on both sides of the issue. So I would like to offer not a personal observation as before, but an OCF one. Our mission is to see that people get the most current, peer reviewed information possible. That is the basis of making good informed decisions as a patient or caregiver. That is what you find in the main body of the OCF web site; what we know, the good, the bad, and the ugly. Hard facts. The emotional aspects section of the web site goes into the aspects of our common journey that fall outside the hard facts, and to the extent you can, the expert in psycho-oncology at Memorial Sloan Kettering Cancer Center that wrote it, has spoken to the emotional aspects of the experience, in what I believe is a hopeful manner, but not without some grounding in reality.

So this radiation story in question, on the day that the NY Times put it out there, ended up on the main body of the OCF web site in the news section. WHY? Because cancer patients not only need, but want to know more than most patients about their illness. They strive to understand, and no matter what the odds, find factual support that they will be on the side of the numbers that is made up of people ten plus years out and healthy. The want to consider EVERY possibility when it comes to getting treated.

If the web site was only the feel good, positive part of the story, people would not have the needed information to know what questions to ask, and how to sort out the important facts from the fluff. Oral cancer is no walk in the park, the numbers that go along with it are scary by anyone's standards, the treatments are harsh, the emotional turmoil burdensome, and to say it is all stress inducing would be understatement... The fact that there was no site that made all those facts accessible to individuals was part of the vacuum that caused OCF to come into existence. Chance favors the prepared mind. If people only want the feel good, hope springs eternal stuff, there are sites that for better or worse, are built around that premise. Cancer Treatment Centers of America, the organization of hospitals that spends more money on marketing their services than any other treatment centers, only talks about the wins. They NEVER talk about anything else. It brings in patients and revenue, it's good marketing, but does it really make a difference in outcomes? No. Their long term results don't even make the independent studies of who the best institutions in the US are. So the feel good, hope for the best message, has emotional value, but it clearly does not give people the "tools" to be intimately involved in the decisions that abound when you are choosing treatments. doctors, institutions, etc. I HOPE THAT OCF CAN FIND BALANCE BETWEEN BOTH.

More than 40% of the people that get this disease do not make it 5 years. It's a fact. You can bury your head in the sand and pretend it is something different, but you cannot change that number. What you can do, is read the information on staging on our site, understand how it is determined, and come to the conclusions, logically and scientifically, that you are perhaps not likely to be part of that dire number regardless of your stage. You can understand that as a late stage patient, while the statistics may not be in your favor, they are not written in concrete. Here I am, a stage 4 patient, with a 12-20% chance of 2 year survival - out from that diagnosis 11 years now. Clearly there are no absolutes or I would not be here. But gathering the best knowledge I could, I understood, I knew, that I wanted them to throw the kitchen sink of treatments against my disease, and I would do everything that I could to tolerate them, because anything less, would have had dire results. I came to this conclusion, by not wishing it was different, by not hoping for the best, but by learning quickly what I could and making the best decision possible at the time. Add in a bit of luck, and if you are a religious person, a belief that some higher power finds my continued existence to be of value, (or at least amusing to him/her/it), and here I am. Hope is an important emotional component to dealing with the disease, but hope does not improve your survival chances but only your ability to deal with what is, by anyone's call, a tough hand to play.

It was brought to my attention a few months ago by doctors whose opinions I trust, that OCF has avoided talking to 45% of the people that draw the worst hands in this battle. We have no information on this web site about hospice, palliative care, or end of life issues that that 45% of people that come here will HAVE to deal with. We also do not have a forum where this painful subject can be discussed. While these are extremely difficult issues, and need to be discussed in the most sensitive and empathetic manner possible, they do need to be discussed. We will be adding a section to our main site over the next quarter which deals in these issues. We are going to partner with a palliative care organization to see that we get it right. Hopefully it will help those that need to understand options, and the process. Others will never read those pages, nor need the information that they will contain. But to ignore those most in need of our support and candid, useful guidance, would mean that we have not fulfilled our mission completely or well.

Cancer is hell. Being scared is part of the deal, like it or not. Information allows you to make the best decisions possible. Those decisions will improve your odds of coming out the other side of this. Providing unbiased, timely, and correct information is one of OCF's missions. If that is not what you want, then with all the best wishes for your future, you are better off finding solace and support in your faith, family, and hope. We agree that these are important components of getting through it all, but they are not enough by themselves in OCF's opinion. Reality and scientific facts, stated in a tactful and sensitive manner, have to factor in somewhere.

Given the good job that Sheldon does on seeing that the most current news, including that, which like this tragic radiation story, do not tell a positive hopeful story, and those that reflect hope, all end up in the OCF news feed, I feel that if you don't subscribe to it for free, you should in my opinion. Please - before anyone decides to post a story in the forums - at least look there for it first. Then send it to the OCF office and we will put it up in the right place. This is an information organizing issue, not a censorship one, or a desire to avoid telling the sad or negative side of things. Anyone who reads of the battles fought here, and especially those that have been lost, knows that not even the forums (where so much emotional support has been given, and hope for positive outcomes is a common tone expressed), have plenty of sad and scary posts as well. You cannot side step hearing something negative about the cancer experience. It is part of the territory of cancer diagnosis.