Being new to this type of forum I want to apologize up front if I fail to follow proper protocol. Eight or nine weeks ago I discovered a lump on the right side of my neck. I was referred to an otolaryngology specilist. After a biopsy it was determined that I had cancer of the right tonsil that had spread to the neck lymph node. It has been classified as Stage III. Originally a date was set for surgery with a program for follow-up chemotherapy and radiation. About a week before the surgery this program was changed. The new plan was to have 2-3 cycles of pre-operative chemotherapy to be followed by surgery. After surgery there will be a six-week program of radiation and additional chemotherapy. I had my first cycle of chemotherapy last week. What troubles me is that I have seen virtually no mention of this pre-operative chemotherapy approach in the resources that I have found. Is anyone familiar with this approach?

Welcome, Tom. First off, I haven't heard of that order of treatment either, but it is a sure bet someone in this group has. Secondly, there IS no protocol. Just about everyone here is either going through it, has gone through it, or is taking care of someone who is going through it. So anything you ask, say, or answer is just fine, as long as you are not peddling quack cures (grin). You are going to have many more questions as you proceed through your treatment, and the best place to get answers is from someone who has been there before you. Come back often.
Joanna

what is the size of your tumor ? I heard that sometimes chemo is done to shrink the tumor to a smaller size before surgery. Could this be the reason ?

I would like to hear if you are being treated at a cancer center or major hospital, or if you are being seen by an individual doctor.

First, thanks to each of you for the quick response to my inquiry. The stated reason for the pre-operative chemotherapy was indeed to shrink the tumor prior to surgery. The rational is that it will make the surgery less invasive and may also reduce the risk of any cancer spread that might result. The size of the neck tumor was 3-4 centimeters, depending on who was doing the measuring. I don

Well it seems like you are in good hands and the logic seems sound as well. There is always the danger in surgery of tumors, that malignant biomaterials (cells etc.) will be released from the surgical site and migrate to other remote areas via the circulatory or lymph systems. But I completely relate to your feelings of "let's get this thing outta here!"

Hello. I'm very new to this list, and in fact have not yet had a moment to sit down and introduce myself to you all, but I do feel compelled to reply to this particular post. My husband Jim was diagnosed in November (day before Thanksgiving) with squamous cell carcinoma found in a neck mass that was removed six weeks after a needle biopsy came back "suspicious cells". It took several weeks for the ENT to determine the primary tumor, and there was so much confusion we couldn't make sense of much of it...an MRI showed an extremely large mass in my husbands throat that the doc could not see--he still calls it the "phantom MRI". Well, we were then sent to Stanford's ENT Tumor Board for a 2nd opinion and via that process it was determined that Jim had a tumor at the base of his tongue, and it was likely stage III or IV. They offered us a chance to participate in a trial there of 2 rounds of chemo (Taxol/5fu) followed by 7weeks radiation with concurrent chemo, then two more rounds of chemo. We declined because, frankly we didn't find the Tumor Board doc very "warm and fuzzy" and we could not envision the commute over a very windey highway 17. We then found a chemo doc near home who we had an immediate rapport with and who offered a therapy very similar to the Stanford trial, but using Taxotere rather than Taxol...so that is what we are doing. Jim has completed 4 28-day cycles of chemo and 3 weeks of radiation therapy to date...after the first two rounds of chemo, a CAT scan found no visible sign of the original tumor. Wednesday night Jim had surgery to insert a gastirc feeding tube as he was having much difficulty swallowing anything, including fluids. So, to make a very long story short, our treatment plan is very similar to the one being recommended to you, and yes, the idea was to shrink his tumor to a size that could be surgically removed without losing the function of the tongue...it seems to have worked beautifully in that respect. I can certainly relate to your wanting to get the tumor out ASAP, we felt so frustrated when we were waiting to start treatment, any treatment. I wish you the best.

Welcome, Jan. Your on-target answer proves my point that there is always someone who can provided first-hand information on this forum. You and your husband have been through a lot already, but it sure sounds as if things are positive. Let us know how you are doing, and please ask your own questions if any come up.
Joanna

This thread and others regarding chemo and radiation before surgery is making me nervous. Nobody ever suggested anything to us other than surgery and neck dissection first, radiation to follow. Actually, alot of back-and-forth conversations between different doctors ensued and it was decided to add chemo with the radiation as a "radio-sensitizer". But it makes me nervous to think that doing the surgery first could have been a big mistake with the possibility of releasing malignant cells into his system. I'm wondering if this is something brand new (we made these decisions at the end of December) or should we have been working with better informed doctors.

Thanks,
Anita

Be calm about this surgery releasing cells issue. It is more common for doctors to do the surgery first and the radiation second than the other way around. I am probably the exception to most of the stories you read here. I was radiated first, and neck dissected second. It would seem that your husband had the routine course of treatment. Chemo to increase the effectiveness of radiation in stage 3 and 4 patients is common, and in stage 4 patients chemo at the end of all the other treatments is common. For me as an early stage four / late stage three, I was too beat up to follow the protocol for a chemo "wash" at the end of things and opted out of it. I'm still here.......

Jan,
IMHO, if I had the opportunity to go the Stanford for cancer treatment, I would have as they are one of the best in Northern California. As it was, we drove 60 miles a day for radiation treatment at UCSF, also one of the top regional cancer treatment centers (ranked 7th in US). It's about the standard of care you will receive, and the expertise of the doctors. Would you trust your life to anything less?Teaching/research hospitals tend to have well experienced doctors/professors who basically develop the treatment protocols that all the others follow and as such, will have the latest, most successful treatment regimes. They also tend to be very proud of their positive outcome statistics.

Brian,
The protocol I went through was radiation and chemo simultaneously. I didn't have surgery.

Gary, your point is well taken, and don't think we didn't labor over our decision not to go to Stanford...in the end we felt we were getting an almost identical regime with a doctor we actually like and that is less than a mile from our home. Our doctor is following a plan used by a Dr. for this type of cancer at Harvard Medical and we feel comfortable with both the plan and our chemo doc...he is known for being aggressive in his treatments, but he is also extremely user-friendly and human in his approach.
In other news, my husband's surgery to insert the G-tube has not been a complete success. He does not seem to be moving things though, and after a couple of xrays of the abdomen, the surgeon believes he has a partial intestinal blockage that appears to be "barrium from a previous medical test"--we are seeing the surgeon in an hour...wish us luck.

jan b

An update on my situation: Around the end of February, I discovered a lump on the right side of my neck. The long and short of it is, I was diagnosed with cancer of the right tonsil that had spread to the neck lymph nodes. The treatment plan was to have two or three cycles (3 weeks each) of pre-operative chemotherapy (carboplatin and taxol) followed by surgery to remove the tumor on the tonsil and the affected neck lymph nodes. The treatment program then calls for a course of chemoradiation. I have recently completed my second cycle of the pre-operative chemotherapy. There has been significant shrinkage of the neck lymph nodes. The otolaryngology surgeon indicated that there was also major shrinkage of the tonsil tumor. Mentally I was prepared to get on with the surgery. I was surprised and disappointed when the surgeon ordered a third cycle of chemotherapy. I had a trip planned to Boston, so I decided to seek a second opinion while there. The doctors (surgeon and medical oncologist) that I consulted with independent of one another were not impressed with my treatment program. They would recommend an initial course of chemoradiation, followed by salvage surgery to remove the affected neck lymph nodes and the tonsil tumor if necessary. However, the hoped for result would be that the chemoradiation would eliminate the tonsil tumor entirely. The message from both the surgeon and the medical oncologists was that throat surgery should be avoided if at all possible. I will be meeting with or talking to my

My first consultation involved fairly radical surgery for the removal of all tissues of my right tonsil and ALSO the surrounding muscle mass and tissues as these SCC's frequently invade those tissues. A radical neck was on the menu for BOTH sides as I had a bilateral mets to the cervical nodes. Even though my tongue was not involved, they suspected that it too might contain malignant cells... another bit of cutting. I didn't like the sound of any of this, and that

Tom:

Welcome to OCF. My fiance Dave had his tonsillar surgery done here at Mass Eye & Ear followed by radiation at Mass General. We sought information about the treatment protocal at Dana Farber which was drastically different than the one at MEEI which Dave ultimately chose to follow. I am curious where you sought your additional opinion and would be happy to be of help if needed.

Kim

Kim,
The second opinion I received was at Mass Eye & Ear. Both doctors saw me on very short notice and both spent a considerable amount of time with my wife and me. The medical oncologist made reference to Dana Farber