Jen, more than a few times here we have suggested a second opinion. That said, If you are being seen at a top cancer center, I don't think you need to worry or second guess the radiation protocol. The radiation oncologist is already looking out for your best outcome. The scans (CT PET ect) cannot see microscopic cancer cells. Those cells can develop into tumors later on. By using a wider field radiation they are planning to "get them all". As Glenn said you want to be as aggressive with this as possible.

We will be here for you as you proceed on the path towards survival. Radiation is no picnic but you will do fine. Start eating extra good food now, build up some reserve weight especially if you are normal weight or less now.

Remember this is a life event that will affect all of your family in some way, spouses especially. You will experience many positive things as you go through this. Try to look for them.

Take care

Jen,

Keep in mind that all the views stated are merely experiential opinions from people that have had a specific example applied to their lives. As far as me telling you one type of radiation is better than another, I do not believe even the highly qualified medical folks can give you a 100% answer. If you are not sure of what the radiation oncologist is telling you in terms of what are the options available, what are the pros/cons with each, what is the specific recommendation and why, you did not ask enough questions. Places such as M D Anderson in Houston which is one of the best HNC centers in the US, would gladly conduct a telephone consult with your radiation oncologist and tell you they agree or disagree and why. This process typically takes 3-5 days and usually your treating physician would welcome another set of qualified eyes reviewing things before you start.

Along the same lines, many doctors in this area place a port-a-cath or medport in your upper chest when they plae the PEG tube. This allows a direct connection to a main artery and avoids issues with chemo, fluids, blood draws, etc. It was invaluable in my case when I had to resort to IV feedings for several weeks plus I used it for IV fluids for several months. My wife was trained to replace the access needle every 3 days and we did all of the feedings and fluids in the comfort of our home (or my discomfort as it turned out ).

Keep asking the questions now before you begin. Once you start, you will most likely not be able to change the course. Use the face time with your treatment team to COMPLETELY satisfy your questions and concerns.

Even though the PET/Ct takes a while, it is probably one of the most effective diagnostic tools available. There is a great study published in the Annals of Otolaryngology last month that shows some great data on the PET/Ct which I am assuming you are going to get. They also will require you to take some type of tranquilizers so even your swallowing muscles are settled before the tests begin. It will be easier than post radiation when you get to repeat it but you will already be a seasoned "pro" by then!

Eat a lot now, rest as much as possible, even if you have to take meds to do so. A rested mind will approach this journey much better than a fatigued one.

Take care,

Ed

Hi Jen,
Let me start out by saying welcome. Sorry to meet under these circumstances. I had IMRT myself. I had my tumor surgically removed prior to starting (thats how they found the cancer) and my radio oncologist said it would be a basic mop up job. I was never told about 3D V.S. IMRT just that IMRT was the best. I think you will get many things out of this lousy adventure but one of the things that will stand out the most is how fragmented cancer treatment is in this country. My story is long and I have told it many time but I can tell you that I got several opinions prior to submitting to the University Of Chicago due to the fact that Dr. Everett Vokes (U Of C) invented the treatment protocol that most of the top treatment centers use. They are also getting a higher success rate than any of the places I called upon.
Some of the places I went to (Sloan Kettering,Beth Isrieal,M.D. Anderson, Loyola, Northwestern, Mayo) did not want to do any Chemo just surgery and radiation. However, most did. Some want to give me a radical neck dissection some didn

I was told that IMRT is good for when it is a smaller, targeted area. I was never told that IMRT was better or more effective in survival then 3-D or any other type of radiation. I had 3-D because I had nodal involvement and needed to make sure all areas were taken care of. I agree that we should be careful that we don't sway someone to a treatment that may not be the best for their set of circumstances. I'm just happy radiation treatment is available or most of us wouldn't be here to post about it.
Minnie

Minnie, I totally agree with you. Since everyone's situation is different, we must be careful not to be biased in recommending one kind of treatment over the other. We are not medical professionals and the best thing a patient can do prior to treatment is to gather information and discuss with the team of doctors to arrive at the best possible option. The top priority is which treatment is the most effective to eliminate all cancer cells; the side effects is just the second consideration.

Karen.

Jen, the doctors you deal with at a major cancer center generally know what they are doing. And they will recommend the best treatment for your situation. So when I was going through what you are now experiencing, I listened to what they told me and did what they suggested. I figured I was paying them too much to ignore what they said. Why pay that much money and not listen to what you are being told to do.

I had stage IV cancer in the right tonsil which had metastasized to the lymph node. I had IMRT rad and 3 treatments of cisplatin chemo every 21 days to shrink the tumor, then radical neck dissection to remove it. The result was that all of the cancer was destroyed by the rad/chemo. The pathologists tried to find any cancer cells in the 35 lymph nodes removed during surgery and all of the other tissue taken to insure good margins and no cancer was found. The rad and chemo had killed it all.

Other rad/chemo regimens have had the same results for others on this board. Bottom line is they did what the cancer specialists recommended and had good results. Hope this helps. I know that it seems like an unending number of decisions, but soon enough, it will start and you will get through it just like we all have. Will be praying for guidance and successful treatment for you and comfort for your family as you progress through this treatment.

Hi Jen,

At the time I had my radiation treatments and where I was living at the time, there were no other options other than just blasting both sides while using lead shielding to help prevent leakage. Had to rely on the expertise of the oncology group and while I complained quite a bit at the time, I have absolutely NO regrets because in 1 days time it will be 8 years since DX.

You have already come a long way with how Your attitude towards having to fight the fight has changed. You have asked questions, vented, wondered, etc. etc. and I believe that You have become empowered for what is to come. Knowledge is power and with the way the FANTASTIC family of this forum have shared their experiences, love, and support with You, along with the loving care that You will receive from Your family, friends and medical team that You will fight this beast with everything in Your being.

Positive vibes and prayers to You

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

I don't know why Glenn feels it necessary to personally attack my posts but I have been in the radiological medical device industry for almost 30 years. Historically speaking 3D conformal (3DCRT) preceeded IMRT and like conventional XRT, is still useful for certain conditions. The efficacy claims made for it and the indications for use are essentially identical to IMRT, by the way. I know it was overlooked but my opening line was "Not all are candidates for IMRT...". I take great care to insure that my technical posts about therapuetic radiation are as factually accurate as possible for the purpose of educating people that there are CHOICES and alternatives that can be made and they can have very different outcomes.

Actually the first successful treatment of a head & neck cancer with radiation (radioactive source) was in 1899 at the Curie institute in Paris.

I hate to say this but at many institutions (particularly the more regional hospitals), the treatment options offered and promoted will be based strictly on the technology available there (this is a profit making industry after all). It wouldn't be in their financial best interest to send you somewhere else. The comprehensive cancer centers (CCC) listed in the NCI or NCCN lists typically have ALL of the available treatment modalities with the exception of PBT (Proton Beam Therapy) which is only available at 2 sites in the US. MD Anderson is investing 200 million dollars to build a new facility for it currently. This is why we consistently recommend a comprehensive cancer center on the NCI or NCCN list.

I found a fairly non technical comparison of IMRT and 3DCRT.

"What is IMRT?

Intensity-modulated radiation therapy (IMRT) is an advanced form of three-dimensional conformal radiotherapy (3DCRT). It uses sophisticated software and hardware to vary the shape and intensity of radiation delivered to different parts of the treatment area. It is one of the most precise forms of external beam radiation therapy available.

Like conventional 3DCRT, IMRT links CT scans to treatment planning software that allows the cancerous area to be visualized in three dimensions. However, regular 3DCRT and IMRT differ in how the pattern and volume of radiation delivered to the tumor is determined. In conventional 3DCRT, clinicians input delivery patterns into the computer. In IMRT, the physician designates specific doses of radiation (constraints) that the tumor and normal surrounding tissues should receive. The physics team then uses a sophisticated computer program to develop an individualized plan to meet the constraints. This process is termed

Gary,

It is not like I constantly attack your posts. I have no issue with your knowledge of the radiological medical device industry, how could I? My issue with the post was that the newcomer may assume that newer is always better, that was all. I think that was clear to everyone and that fact should have been clear to you by the nature of the subsequent posts. All were general discussions of all the options and the need to keep these option open. The only waste of space on this thread is the above post and my reply.

Oh, the only attack I made on you was when you jumped all over that newly diagnose member about smoking. Look it up, that was an attack. This was discussion. That is OK with you, right?

In fairness to you, I could never equal your contribution here and do, in fact, hold your opinions in very high regard.

Glenn

The discussion in these posts has been very informative. My husband, Jack, has been through 2 rounds of radiation. I now have some new questions to ask about the treatment in a follow up appointment with the radiation oncologist next week. We have pretty much relied on his expertise to determine the course of treatment. He is very willing to answer questions, but so many times I feel too ignorant to know what to ask.

Lowanne