Just thought I'd add, and this is kind of an aside, that there is still a gray area for Stage 2s in that NCCN treatment protocol and it's the area I fell in where there are no positive lymph nodes after surgery but there are still some adverse features of the tumor(esp. perineural invasion). It only says radiation should occur when there's one positive lymph node and adverse features. Does that mean by that protocol even radiation wasn't recommended? I think this is why second opinions are so critical when you're stage 2.

Nelie

Contradict me if you wish but we but seen others who were rejected for further review after treatment is started. There are potential liability issues here that the doctors don't want to get into. Prior to starting a new treatment segment might be a different issue (as was in your case).

They update the NCCN Oncology Practice Guidelines at least annually. There is also summary of changes located throughout.

When I research this I always use the latest information available.

DISCLAIMER: Bear in mind that neither Nelie or I are doctors, we are only advocating that there are numerous possibilities and that everyones cancer is somewhat unique so there may be variations in the treatment protcol. We merely try to equip the patient and/or caregivers/advocates with sufficient knowledge to ask intelligent questions that allow them to make choices that will have the highest degree of confidence that they will have access to the best treatment plans available with all of the risks and benefits weighed out.

Gary you said: "Prior to starting a new treatment segment might be a different issue (as was in your case)."

right. that's what I'm saying too--I don't think we are actually disagreeing. The thing is, in the case of stage 2 tongue cancer where a partial glossectomy and neck dissection would be done first, no one can say for sure what will follow the surgery until the results of the surgery are in so getting a second opinion ahead of surgery is less informative than after the surgery and pathology results are in.

Nelie

H,

I would like to weigh in again on your situation.

First of all acupuncture and herbals don't cure cancer!

As far as radiation and chemo, I can only tell you what was my experience. This in no way means that this is what should be done, only that again I will say there are many ways to treat this issue. This is not to confuse you, but to give you insight into what you "might" be told.

My surgeon is the chief of head and neck surgery at a ccc. I went to him after having had a biopsy in my office and having an MRI which was ordered by my oral surgeon. The results of both were brought to him. He said to me that his protocol is to remove the lymph nodes on the side of the tumor, without even seeing an MRI. His reasoning is that MRI's can have false negatives and the only way to know is through biopsy. I went with this as to me, there was no argument against this reasoning. I was also seen by a radiation oncologist, who agreed with the treatment plan and added that if the nodes were negative, he did not recommend radiation.

There are many members here that will disagree with this protocol and most base this upon their own experinces. What it comes down to is that you have to get as much information as possible, including other opinions and do what you and your mom feel most comfortable with and feel is the right thing for her.

Everyone second guesses their decision I'm sure and I am no exception to this. Well, if I die of old age or some other illness, I made the right choice. If I get a recurrence, then I guess I didn't. However, who is to say you can't get a recurrence after radiation and chemo?

This is tough road to follow and we are all human and are unfortunately faced with life threatening decisions.

Good luck and please keep us posted.

Jerry

Hey,

Okay, maybe "cure" isn't the right word, but i only mentioned acupuncture and herbals because ive found some suvivor stories that acupuncture and herbal meds assisted with the pain and stop recurrence .. ..

.. i wasn't saying it is a substitute for rad, chemo or surgery....

but i do have a question, .. its probably dumb, but when my mom gets her MRI done, she will have surgery, and than radiation and chemo probably,.. how long does the entire process take? I have read so many cases and timelines aren't always specified .. i know each case is different, .. but i just wanted a general idea

Thanks for all the help .. never experienced anything like this before, ..you read about it, you hear stories, but you really dont understand until it touches your life ..

Thanks again so much,
H

H,

Timeline:

With all testing expedited, it was about almost 2 months from initial Dx to my first day on the table.

If your mother is having teeth pulled that will delay things a week or so.

If your mother is having surgery, like a radical or modified neck disection, then it will be about three weeks before they start radiation.

Radiation can be from about 33 to 37 calendar days (not counting the weekends - or machine breakdowns) depending on the specific treatment plan. Figure a little shy of 2 months.

It'll be about 1-2 months before the radiation effects even start to get better.

After that's all over figure about one month of recovery for every week of radiation (from the end of radiation).

It'll take about a year to 1 1/2 years to have blood chemistry back to low normal limits.

I was pretty beat up and totally disabled for almost 2 years. I was a healthy 55 year old going into this.

About herbs, I wouldn't waste my money on a "cure", or whatever, based on testimonial evidence. There is no science to support that this is safe and efficacious and, in fact, may negatively interact with her meds. Even many acupuncturists have admitted that it is not very effective for head & neck issues, particularly Zerostomia (dry mouth).

Here is a link to Quackwatch concerning alternative cancer cures:

http://www.quackwatch.org/00AboutQuackwatch/altseek.html

It is shameful what some people will do to scam cancer patients. Some of these are big businesses like GNC.

Hopefully you will never experience anything like this again. Your mother is fortunate that they caught this in an early stage. Many of us were not Dx'd until we were quite advanced. Tell us more about they discovered it.

Thanks everyone, i;ll keep everyone posted ..