I started this as a new thread even though it was another thread that caused me to think this out loud.

CAREFULL! that is what we must be!

Occasionally, probably because we are passionate about cancer survival, we might stray beyond advocacy into the twilight zone of sounding like medical experts. In fact we collectively might have a great deal of experience with this disease, that allows us latitude with regard to advocacy but most of us are NOT trained medical experts. Those of us whom have lived through radiation treatments might suggest that it is a necessary treatment to survive when in fact, as wicked as this cancer can be, a VERY high percentage survive if treated in the early stages. If you are a true stage one, 90 to 95% will be cured. Should we be so caught up in the game that we always recommend radiation even to those stage one people? I say: TOUGH CALL. Generally we are not qualified to make that call. For us to make comments that might lead someone with a 5% chance of having a future problem, to the conclusion that they have to have radiation, I SAY NO, we would be over-stepping our boundaries. Should we suggest that this cancer is noted for causing future problems? I Say MAYBE but lets not forget that for every person we see on this forum, there are hundreds if not thousands that do not have future problems with this cancer. Even a stage 4 case might have a 50% chance of NO OTHER PROBLEMS. And yet people die from any stage

Mark, I`m going to totally agree with you here...I try to be really careful about what I say from a medical point, even as a health professional. I can only speak about oral cancer from Packer`s life. Case in point, his neck also got rock hard 5 years ago with radiation, that`s when I researched side effects...found imformation about a certain drug that was being used experimentally to increase blood flow to the area, it worked like a charm, but looking back, when he was rediagnosed, our doc said they had never gotten all the cancer in the first place, and i don`t think I helped anything by increasing the blood supply.............so, I try to speak from my personal experience, and not advocate anything but getting the best damned docs you can find...........Dee

Mark, I definitely agree with you that as cancer survivors, we must be extremely careful when trying to give advice, especially to those desperate people. For a few times, I responded to some posts but on second thoughts, I did not forward them fearing that the content might bring negative impact. I have more confidence when sharing my own story and experience. With my very limited knowledge about cancer and as a person from another part of the world with a very different culture, I often hesitate to give any medical advice. What applies to me doesn't necessarily apply to the others. Take the feeding tube problem as an example, I can't really see any need of getting one at the beginning of treatment because in Hong Kong only less than 25% patients have one but in the US, it is another story. So sometimes I have to tell myself to remain silent over some issues. When it comes to statistics and prognosis, we have to be even more cautious because patients and caregivers tend to be very sensitive and conscious about figures. We are here to offer support and lend our ears to those who vent.I always remind myself not to sound like a medical professional. At the same time, when we seek advice here, we must learn to be sensible, grateful and open-minded. People respond out of good intention and no one is paid to do the job. We are all in the same boat aiming at one goal: to defeat cancer!

Karen stage 4 tonsil cancer diagnosed in 9/01.

Thank you Mark for starting this thread. As a stage 1 survivor who had a neck dissection and no nodal involvement, I always get a little anxious when the discussion involves stage 1 tumors and radiation.

I truly trust my team of physicians and my watchful waiting does involve annual extensive testing, and every two months visits with thorough visual exams and hands on palpation for another year. After that, I am not sure of the schedule for the visual exams, (may go to 3-4 months?) but the annual stuff keeps going for a minimum of 5 years.

I do try to curb my enthusiasm over my good reports to not offend those with not so great results. At the same time, I want people to know that not every patient has a terrible experience with this disease. Ok, my rose colored glasses at times minimize the extensive tongue surgery with grafting and the neck dissection and the difficulty of recovering from that. That is my nature, very upbeat, positive and proactive.

And Dag Nab It, I am so happy to be on this side of the grass and sharing with all of you!

Sincerely,
Lisa in Ks

Mark,

Thank you for the reminder - I think we all in our passion; get carried away. Sometimes because of things we have heard, or read on this board and then we get scared for other people who post and we are afraid for them and the outcome of their treatment. I don't believe I have ever seen a post by anyone who meant any harm.

I know that's why my posts can be very vague but I try to offer support. It really is on purpose, because I learned the hard way when I first started on this board.

It's also interesting that I just received an article yesterday about early and late stage cancer. Since you mention Stage 1 in your post. The article is talking about protocols for early and late stage (mostly late and the the use of Induction Chemo & Concomitant Chemoradiotherapy)
But when writing of Stage 1 & 2 - Quote: "Patients with locally defined disease. These patients are usually treated with either surgery or radiation therapy and are usually cured with use of a single treatment mordality" Everett E Vokes, MD & John E Ullman Prof. - University of Chicago Medical Center.

Even the experts use the words "usually" a lot. If I typed better I'd type the article in a post. It is interesting, but long.

In closing - I can't think of a better group of people to be in the boat with.

Take care and thanks to you, Karen & Dee for level heads.
Dinah

Dinah, thanks for thinking I have a level head, since recently I`ve been called an idiot !! I`ve been thinking a lot about this thread, we`re from all over the country and the world, we are all individuals, with our personal hopes and dreams, but we all have the same goal, we`re all in the same fight, we`re strong, and there is strength in numbers, as we seem to grow daily. W`re all in this together, and I think we make a damned fine team........now, it sounds like I`m making a locker room speech......Now, I guess I should say...........Great out There and Win.......something tells me Packer had hand in this post........Hugs to All My Boat Mates.................Dee

Thank you!

As someone who is here doing research and collecting information concerning my partner's lower lip SCC, it can be very frightening to hear all the worst case scenarios. I think all the stories and information is very helpful, so that we ARE prepared for anything that might come up and have a head start on treatment protocols for tough to treat recurrences. I try to remind myself that people who are having an easy time of things would tend not to be seeking support and won't be well represented on a support board.

He's got a lesion about the size of a dime on his lip, negative lymph nodes and clean chest x-ray. He's decided to go with Moh's surgery and follow up reconstruction. I must say I've been a big worried about his not pushing for radiation, even though no doctor (he's consulted 4) has recommended it. So, thanks for the perspective!

Just as a note, cancers of the lip are much easier to control than those inside the mouth. I think that you can breath a little sigh of relief, and agree with your doctors, that given the low rates of mets from early lip cancers that any secondary treatment would be going beyond the call right now. But don't let this become something that allows complacency to seep into. Regular check ups should be a part of his life for the next five years at minimum.

Dee, you are toooo cooooool, love your postings, they bring a smile to my face!!! Carry On!!! God Bless You!!!!!!!!!!!!!! Carol

It is important to restate from time to time that we are not doctors. What most of us attempt to do here is lead people to the threshold of their own wisdom so they they can be a better advocate for themselves.

Unfortunately, substandard medical care is a reality and we have all seen it here from time to time. We are all passionate about getting the highest standard of care possible.

As Dinah mentioned the word "usually" comes up a lot. In the NCCN practice guidelines, there is often no consensus of opinion on the best treatment options so it up to the patient and their medical team to decide what tools they are going to use.

Every one of us is different and what worked for me, may not work for you. Some of us with more advanced cancers take a more aggressive/conservative approach also so that must be factored in to an individuals decision.

Like Lisa said, it is vital to trust your team of doctors. Information I gleaned here I used to question my team and refine my knowledge of treatment options but the final decisions were always made between myself and my medical team.

The fact remains that this disease is an insidious killer and takes some of us in spite of the most aggressive treatment and the best doctors.