#36513 04-17-2003 03:23 AM | Joined: Apr 2003 Posts: 5 Member | OP Member Joined: Apr 2003 Posts: 5 | 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? | | |
#36514 04-17-2003 12:03 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | 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 | | |
#36515 04-17-2003 02:40 PM | Joined: Jan 2003 Posts: 109 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2003 Posts: 109 | 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 ?
WZ | Stage 4, Tonsillar Cancer Aug, 2002
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#36516 04-17-2003 03:29 PM | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | 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.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#36517 04-18-2003 12:42 AM | Joined: Apr 2003 Posts: 5 Member | OP Member Joined: Apr 2003 Posts: 5 | 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 | | |
#36518 04-18-2003 04:31 AM | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | 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!"
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#36519 04-20-2003 01:21 PM | Joined: Apr 2003 Posts: 19 Member | Member Joined: Apr 2003 Posts: 19 | 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.
Jan
Wife of Jim-SCC, Base of Tongue Cancer Stage 3 or 4 (depending on who you ask) Diagnosed November 2002, 4 rounds of chemo, 43 radiation treatments...21 years post-treatment and still ticking.
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#36520 04-20-2003 02:40 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | 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 | | |
#36521 04-21-2003 07:57 AM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | 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
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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#36522 04-21-2003 01:10 PM | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | 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.......
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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