The surgery is over, the scar is healing. Within the next two weeks I will have my follow-up with the surgeon, and he will let me know if the margins of my removed tumors were clear, and if the nodes were clear. Last time I talked to him, he said they were clear by microscopic exam, and he assumes they will be clear by followup testing.
Now the question, and what I am asking for here is your opinions as people who have gone through this before me:

If the margins and nodes are clear,should we do radiation anyway?

I know this disease is an agressive one. I also know the pitfalls and side effects of radiation. I can't seem to get a feel for what my next step should be, and the good doctor will let me make my own decision (if we get the all clear from the pathologists). Soooooo, I would like to go into the decision knowing the opinions of you guys who have "been there, done that".

Thanks,
Andrea

Andrea,

It's really hard to get that feel when you're stage II. You have my sympathy--I've been in the same spot you're in and then, even after I got the report that margins and nodes were clean there seemed to be disagreement among the doctors I had at the time abut whether I needed radiation. Its really stressful feeling like the decision is all on you!

Even with clear margins and nodes, from what I learned during that very intense time, there are other factors that may show up in the pathology of the tumor that indicate radiation would be the safest way to go. I can tell you what I was told those factors were in my case but I'm not an oncologist and the reading I've done suggests to me there may be others as well--and that different doctors may disagree on how serious some of them are.

Could I suggest that you might want a second opinion at that point? It's what I did and it made me more confortable with my final choice. Having the sense that there is not just one clear path and that you have some choice can be very stressful but the benefit is it also makes you very committed to whatever path you end up choosing. More so than if some doctor just told you you had to. At least this has been my experience.

When I was making the choice, the biggest question for me became this: if I get a recurrence, how will I feel about the choice I'm making now? I ended up concluding that I would have a hard time forgiving myself for not having radiation the first time if I got a recurrence. It was just something I needed to do for myself--to fight it as hard as I could the first time. But I'm still paying the consequences of that--including having mouth problems that may keep me from teaching in a classroom full-time--which is my passion. So there are sigbnificant costs as well. Whatever you decide, you will find support here.

Nelie

Hi Andrea
In your scenario, I would do radiation with no regrets. Radiation is tough, but this cancer coming back is tougher. Just my opiniion.

Thank you so much for your posts. I have looked at statistics until I see numbers when I close my eyes, and just needed to touch a human experience.

With Much Appreciation,
Andrea

Andrea, Yup. The statistics only help you so much. If you want to know more about my experience and choice feel free to send me a private message anytime. Also, there are way more people than me who hang out here who have been through this choice as Stage IIs. Hopefully they will be along soon to share their thoughts. Although I think the ones who come here that didn't choose rad come and go here more quickly than those who did, like me, and are still struggling with rhe consequences!

Nelie

Andrea,

If this cancer comes back it is unforgiving. No one here can tell you that you need to get radiation, but if your doctor is telling you to save anything for a reoccurrence, get a second opinion. We all throw the second opinion thing around like we expect you to shop for the answer you want to hear, not so. You need to be sure that your doctor is making the decision based on you situation. You need to see ALL 3 oncologists, surgeon, medical and radiation. You need a full team of doctors to make the recommendations, not a doctor that will do what you want. I understand you work at the hospital and I'm sure that is why they will do what you want, you need a doctor that will do what you need. Just so you know, the side effects of radiation have not been too bad, and I had standard radiation 3 years ago. If needed, you would probably get IMRT, I hear it is the way to go nowadays.

Glenn

Andrea, my feeling when it was rad decision time was that even the best pathologist might miss that one cell that the surgeon didn't get, and I wanted more ease of mind than if I was worrying about that. Also my philosophy was to hit it hard with everything available. I took about 30 seconds to say yes to rad, for those reasons, and have not been sorry. Yes, it was not a fun time, but I am here and heathy three years later, planning on decades more. And knowing I have done everything that was available, I do not worry. That is a state of mind I wish for you.

Joanna

Glenn and Joanna,
Thanks, you both make extremely valid points. I have yet to make an appointment to see the RO and have a heart to heart with him. (Dr D had me all set up pre-op, but I opted to see him post-op and haven't done this yet)
I am getting a clear picture from all the posts that even though the margins of these particular nasties are clear, there may be other cells lurking in the wings.
I REALLY don't want to have to do this again in a couple of months!!!!!

Thanks again,
Andrea

Andrea,

I was also Stage II with clean margins. The tumor was poorly differentiated, and this may have been a factor in the recommendation I received. What I got from the head and neck team at Dana Farber back then was a very strong push in the direction of radiation, and while I argued a bit about it at the time, I believe it was the right decision to go ahead and have it.

Feel free to send me a private message if you want to discuss this further.

Cathy

Throw everything at this the first time. As Glenn
mentiones it is a most unforgiving diaease!! My two cents worth.

Danny Boy

Thanks for the posts, Cathy and Danny Boy. The more I listen to people who have personal and upclose knowledge of this disease, the more I feel that radiation is a "no-brainer" decision. I am calling the RO when his office opens up this morning and setting up a "first consult" appointment. (The one I chickened out of, er, I mean put off 'til post-op). We will have a little heart to heart, and see what Dana Farber expertise has to offer.

You guys are the best, keep up the good fight!
Andrea

Recent research on prostate cancer has shown a greatly significant reduction in recurrence and improvement in survival and disease-free survival when patients were given local radiation after surgery, even if surgical margins were all negative. While this is of course NOT the same type of cancer, it does emphasize the point made by many in this forum, the risk of surgery mssing small centers of cancer cells.

While radiation is no walk in the park, most of the deleterious side effects go away or can be ameliorated -- read the OCF web site for insights into these. We did, applied the excellent recommendations from this and from folks on this forum, and Barry is doing very well only 2 1/2 weeks out from treatment.

Gail

Gail,
I'm glad to hear Barry has come through the gauntlet and is doing well! That's very heartening for you, I'm sure, and for the rest of us looking for good news and hope.
The OCF site has literally been a life and sanity saver, with all the information available on the main site, and the input from the people who are in the frontlines, so to speak on the board forums. I am taking the bit in my teeth and running with it, appt with RO on the 25th, and followup with ENT on the 26th.

Keeping fingers and toes crossed...
Andrea

Hello Amdrea,

Remember to ask your doctor what type of radiation he is recommending and why. There can be less side effects from IMRT vs. standard radiation. Kind of like comparing a sniper rifle (IMRT) to a shotgun. Good luck as you start your journey to recovery. Also remember to measure your progress in weeks not days. A rule of thumb is one week recovery for each week of radiation.
The effects of radiation will last a few weeks after you end it. You will get better. It just takes time.

All My Best, Danny Boy

Aw Danny Boy,
Thanks for the advice.
You gotta know you're my hero. Whenever the nagging conundrums threaten to pull me down, I just think of you and I KNOW I can fight this blighter to a standstill.

Live well,
Andrea