Hello everyone. Brian or Gary or anyone else that can help me out with this I need some direction. I just had my post Tx scans and am waiting for the results. Here's a quick history and then I'll ask the question. Surgical biopsy 12-27-06, fear of bleeding emergency surgery again on 12-29-06 removed another node. Both were poorly differentiated. Tonsillectomy with biopsies of tongue ect. Tumor found on left tonsil. Pet and Ct confirmed this and there was still atleast 1 possibly 2 nodes that were cancerous. I have completed treatment and have one more decision to make. I told my dr.s that I would go with their decision but I need some advice. I am reading conflicting results of studies. They have told me to expect to finish up with the radical or selective neck dissection. Some things I read say it is necessary and others say they are showing no significant benefits of the dissection. I would appreciate some more info if anyone has any. Brian I know you have the opportunity to hear some of the latest. I'm not excited about another surgery but I also want to be aggressive with this to give myself the best chance of possible cure. I'm also trying to have my tumor tested for HPV. There is so much new info that is starting to challenge some of the older tx options that it has gotten me a little, actually alot confused. Thank you in advance for the help. Lee
Lee -- We have similar problems, with yours being tonsil and mine BOT. The primary and the nodes were well differentiated in my case. The only other difference is the order of treatment.
The James Cancer Hospital in Columbus is where I am being treated. They suggested an aggressive treatment protocol, beginning with the neck dissection. Their rationale was that a)It enables them to get a better histological picture of the lymph node situation, which can impact rad/chemo program, and b)has fewer surgical complications. However, I have heard equally strong arguments for the other order.
I start my chemo/rad program in 10 days. My mindset is that whatever the docs say, goes, as long as it is reasonably consistent with what I have seen and read. The James is a very highly regarded Center, so I figure I can't be in much better hands.
If I were in your shoes, I would have the ND. The recovery is really not bad, and the peace of mind and extra layer of protection is worth a lot.
You can email me offline if you want to bat this around further. Good luck, whatever you decide!
Lee,
I went thru the same decision. My docs told me that clearly, the prognosis with their patients goes from 80% to 90+% when having the neck disection. After all I went thru, this was a fairly easy decision. Just to throw something more in the mix...if you are HPV+, there might be less of a need for the surgery. If surgery is elected, make sure he does it 20x's week vs 20x's/yr. Get the most experienced guy you can find. The long term nerve damage will be much less with experience. Good luck and call me if you need to at 732-687-3518.
Rob
Lee....a non-professional opinion here....Since they have already found several involved nodes, I would personally not be comfortable NOT having the dissection, for two reasons: 1.the removal of other possibly cancerous nodes, perhaps with micro-mets that do not show up on the scans, and 2.the removal of the pathway for metastasis, since your tumor was judged to be poorly differentiated.
I feel that perhaps for a T1N0M0 tumor, the decision might be more difficult.
My own tumor was dx'd as a T2N0M0, because of its size and the length of time it had been there (overlooked and allowed to grow without interference!) I was very happy that my surgeon suggested the ND, and I have not regretted it, though I have some aftereffects from it. It gives me a great deal of peace of mind knowing that my nodes were clear (as far as they know) and that the pathway has been interrupted (as far as they know.)
Just my two cents' worth. If it were my neck, I'd follow their suggestions and not try to second-guess them.
Of course, it's easy for me to say....It's NOT my neck, and my ND was done at the time of my original surgery, and I surely would not look forward to another surgery. I would still do it, though.
Lee,
I present the other side.
Moffitt told me at the very beginning that since the PET and scans only showed 2 nodes and they were small, I believe less than 2 cms each that they do not prefer the ND route initially; that radiation will kill the cancer and that if it reoccurres after rad/chemo then they would consider a ND. All of that was before I tested positive for HPV. In fact, I didn't get my HPV test until months after I had finished my Tx. Now we read that Johns Hopkins doesn't see the same need for ND's with HPV+ SCC as they do with HPV- SCC. I also don't know why they have come to that conclusion but it didn't really make a difference to me since Moffitt had already backed in to the same protocal.
Do I recommend you do it? I wouldn't ever make that call, it's a decision you have to make and you should try to get as comfortable with the pros and cons from oncology experts before doing so. First I would get the HPV tests results and if postive I would try to talk to Hopkins and see what they say and WHY.
I personally would be very interested to hear more from you as you go forward and if there is abything I can do to help, please let me know.
Just wanted to let everyone know I'm reading the posts and doing some searches. Thanks for the feedback. I meet with my surgeon tomorrow and the both Onc's monday. Early on this was not a problem for me. In the past three weeks it has caused me alot of confusion. I wanted to ask too if anyone had to pay out of pocket for the HPV test. I will have too but they said it was only 200.00-300.00 to have it sent off and tested. Does anyone know if this is true?
My insurance covered my HPV test (unless they are slow in billing). I really didn't care about getting the HPV test since it wasn't going to change my course of treatment, but the medical oncologist was really curious and wanted confirmation of her hunch. I also had my slides sent to another hospital to see if they got the same pathology results. This was covered too (assuming I had a co-pay).
Robs neck dissection was the easiest part of all this.He was in hospital three days and back to work after three weeks.He has a fine invisible scar from ear to ear and only slight nerve damage in his lip.All in all nothing too much to worry about
Lee, I'm the type of person that would want to KNOW if the cancer is gone in my neck. Not sure the scans would give me that level of comfort that the ND would give me. I had the ND and would choose to do the same if had to do it over again. I don't like wondering about things, I like to KNOW. Good luck with the decision!
Thanks everyone. I seen my surgeon today and he had just looked at the scans. His preliminary decision is to not do the ND. All of my dr's and the tumor board at the hospital will review all of this on Tuesday and give me their decision after that. I really don't know much except that the one dr. that was pretty much set and expecting to do the surgery feels confident that it is probably not necessary. He wants to get the boards decision and if we decide to pass on the ND I will be monitored monthly and scanned every two months for the first year to monitor the lymph node that was cancerous. I'm going to keep praying and ingesting all of your experience and will hopefully come to a decision that I and my family can be comfy with. Thanks again everyone. Keep the experience coming.
hi, dn't know if this is the correct spot to post this but....
My husband just finished with 3 rounds of cysplatin Chemo, and 37 rad. he has head and neck cancer(nasal pharynx) sp. not the greatest. This has been a long and brutal journey. with 11 out of 20 lymph nodes. He is given a 4 week break now. His dr. wants him to go on a chemo pump for 96 hrs. 1 week for the next 3 months. He is very upset about this and wants to know if it makes a difference. Has anyone done this? thanks caregiver to Tom.
Hello Ladyjoe
Welcome to the Oral Cancer Foundation Forum. I can not answer that question but many here can and will. You have come to the right place. Most "newcomers" post in the wrong place the first time. It is no biggy. Go to the "forum home" page, select the "Introduce yourself" forum and put this information there. Also, read the faq at the top of the page. This will help you get familiar with navigating & using this site. Also, go to the "General Board" forum and open it. Scroll down to the topic "How to Get The Most Out Of This Forum". Open and read it for more "tips". We just were discussing how a newcomer has to learn on their own. We are trying to make it easier. Before you introduce yourself I suggest you do this: At the top of the page click on "my profile". Then click "edit profile". Scroll down to the signature box and type in your DX, Tx.(just like you wrote in this post) This will appear at the bottom of every post you make or respond to. See mine at the bottom of this post. You can change it anytime. It is not required but it saves you from explaining yourself every time you post. Sorry for the "letter" without an answer. Looking forward to your company on the forum. Good Luck! Petey
PS: GO STEELERS! Don't mind me, I'm just another confused DOLFAN???
