We have just gotten the fantastic news that my husband will not require radiation or chemo post-surgery and that he will be coming home from the hospital just shy of two weeks after surgery. Margins were good. No positive lymph nodes. No functional defects except some numbness in the cheek and right lower lip. The surgeon at Sloan Kettering is confident that nothing further needs to be done except the customary monitoring for recurrence.
Just curious if this is common/uncommon or simply Chip's great good fortune. I can see from this board that many of you have experienced recurrences and that there is a risk of microscopic invasion notwithstanding clear margins, etc. It therefore surprised me that radiation and chemo were not routinely suggested even with great surgical results (not that we want them - not at all). I suppose it all depends on the individual circumstances, but I am interested in your views and experiences.
We do plan to ask the surgeon to explain Chip's good fortune, the basis for his recommendations and the prognosis when Chip has his first post-surgical appointment and when the surgeon is not in scrubs, trailing a bevy of fellows. Meanwhile, it's time to celebrate, which Chip plans to do today with a milkshake.
Karen
Karen- I'm so happy for you and I'm sure the surgeon will explain the decision not to treat with rads and chemo. They are wonderful there. Hopefully it was all caught in time especailly with no node involvement. It's much easier to actually get clear margins when that is the case. Congratulations!
Sue
Great news. Maybe we need a new Forum for Great News.
Karen this is wonderful and Chip way to go what flavour???I like strawberry...I can only hope that my surgery on Monday compares to how well you did. This is indeed a blessing!!! Congrats
wonderful news and i don't think they would say no further treatment needed unless they felt secure in that decision. I am excited for you!
Karen,
You can see by my signature that the results of my surgery are similar to Chip's. Over the years in this forum we have discussed the protocol of throwing everything possible at oral cancer and some of us have not had that done. Well, if I don't have a recurrence, then I did the right thing. If I do, then I didn't. Right now, being almost 3.5 years post surgery, I don't regret my decision and I will have the option of doing more at that time if it is recommended. Don't think, however, that I and the others in this situation, didn't spend time worrying if we had done the right thing.
I went along with my surgeon's recommendations to do nothing else and this decision was backed up by the radiation oncologist at the CCC where I was treated.
If you would like to discuss this further with me, you can send me an email with your phone number and I would happy to talk about it.
BTW, it wasn't too long ago that Brian had stated that this protocol is being followed more commonly in cases like ours.
Jerry
PS
I don't think I ever answered you about my daughter no longer working in Lower Manhattan. She left the firm and is now an in-house counsel for Verizon Wireless.
That is great news. The same I received but less than 2 months later, I had to have the rads and chemo plus. My Dr was a different one from a different Hospital. Lets say your Dr gave it to him straight and he doesn't need rads or chemo. Good Luck and enjoy life.
Thank you all for your good wishes and the information about post-surgical treatments. This is helpful. We will certainly ask the surgeon about his approach. We will also inquire whether Chip should have his esophagus examined with an endoscope A close friend (gastroenterologist) pointed out that esophageal cancer is often caused by the same SCC as oral cancer and shares many of the same risk factors. He was adamant that Chip get scoped. Soon. Egads! I guess this is our new normal - doctors, doctors and more doctors.
Karen,
Although it was not suggested by my surgeon, on my own I have been getting scoped once a year. It gives me another level of comfort.
Jerry
Congratulations Karen, when my wife had her surgery we were not expecting to need radiation/chemo but had positive lymph nodes and a margin that was clear but closer than they like. Our chemo oncologist explained that they recommended chemo/radiation for any of 4 pathology findings. Of course, right now I only remember the positive lymph nodes and poor margins. I will try to find in my notes or someone else may know other reasons for recommending chemo and radiation.
Tom, might one other be well differentiated or poorly differentiated cells in the tumor?
I, like Jerry, am one of the few whose situation did not require radiation or chemo, and it made me VERY nervous. I even asked for it! My dr. said that I shouldn't need it, and that he didn't expect a recurrence with my type of surgery and with the generous margins he took, but that if I ever did have more cancer, either a recurrence or a new cancer, then I would still have a weapon to use.
So......so far, so good.
You can go to someplace on this site to see the governmental protocols for suggested treatments for all the different circumstances.
If you are at a good cancer center, you can relax and take their advice. You still need to be certain that you continue with good surveillance over the years.
XO
[quote]You can go to someplace on this site to see the governmental protocols for suggested treatments for all the different circumstances.[/quote]
The 2008 treatment protocols, published by the National Comprehensive Cancer Network, are available
here, on the NCCN site. You may have to register, but it is brief and painless.
The OCF site has the 2007 protocols
here.
We will have the 2008 guidelines on the OCF web site by tomorrow. Thanks for bringing this to my attention.
Karen,
Surgery was the only treatment needed for my OC in the mandible. Pathology found clear nodes and cancer only in the 2 cm spot in the mandible. It has been 3 years and no sign of recurrence. When I asked about the possibility of recurrence my Dr. said nil. He trained at M D Anderson at at SloanK which seesaw between being #1 and #2 for oral cancer so I have confidence that he is right.
Happy healing to your husband.
Malka
Karen,
I too just had surgery with generous margins and no other form of treatment. My doc is the chair of the head and neck department at M.D. Anderson so I feel confident in his advice. I'm monitored closely and always have the possibility of recurrence in the back of my mind..but the way back, lol. There are those who face recurrences despite throwing everything at it the first time round so the best we can do is take a calculated guess using the advice of the experts. I wish Chip the best.
Susan
Karen,
Last Saturday was the 2nd year anniversary of my surgery (only).
I now need to book for a check up over the next days but am quietly confident that all will be OK.
Can anyone advise re yearly follow up testing.
Last and all follow up visits with the H & N surgeon have only entailed him feeling around my neck area. I have never had anything else before or after surgery.
Should I be asking for something more in the way of a yearly test ???
Gabriele
In my wifes case, it is tongue cancer so it could be different with "retromolar trigone region". I wasn't able to find the information in my notes but using the link provided by Leslie, I think what we were told any of of the following and they would recommend chemo/radiation:
1. Margins that were not clear
2. Cancerous lymph nodes (I think they may have said on both sides)
3. Extracapsular spread (my understanding of this was whether they felt the cancer was contained within the lymph nodes)
4. Perineural invasion (my understanding the cancer growing around a nerve)
5. Vascular embolism (not sure on this but would believe cancer growing close or around artery)
That is the best that I can make out of it, if you use either of the links from Leslie and are able to read the flow charts, you should be able to determine the rationale that they used. For this information, I used page 24, Cancer of the Oral Cavity. Again in my wife's case, she struck out on the first 2 items above so will be starting chemo and radiation next Monday.
Colleen, they may have talked about well or poorly differentiated cells in the tumor but I don't recall. I know my wife's tumor was not as large as many on this site, I believe hers was 2.5cm long and 1cm thick, so may not have been an issue.
Karen, wishing you and Chip a long healthy future.
Gabe,
We have talked about the lack of protocol for follow up here many times. I have not seen any formal protocol for follow ups Hopefully, Brian will chime in here soon.
I had no chemo or radiation and I see my surgeon every 6 months and this will probably remain at this interval until I reach 5 years. He wants me to get a chest x-ray once a year and I do. On my own, I made the decision to get scoped by my ENT once a year and I have very thorough oral cancer exams in my office. I feel these exams are much more comprehensive than anything that the surgeon does.
Hope this is helpful. And, congratulations on your 2 year anniversary.
Jerry
The protocol on the website (above, the site for the 2007 protocols) has suggested followups listed for all situations...Click on it to get a good idea. The 2008 protocols shouldn't be too different, but I'd like to see them to compare.
FYI--My doctor ordered a PET/CT scan before my surgery, and at 1 year, and at 2 years.....and will again at 3 years. He saw me every 3-4 months the first year, and then has seen me every six months since then. I don't know how long he will continue to order the scans.
On my own, I see an ENT who does a good endoscopic exam. I also see a periodontist quarterly, who looks carefully and gives me a good cleaning and dental exam, and I see a prosthodontist who adjusts my obturator about every six weeks, and he looks too. I would want more surveillance than Gabe seems to be getting.
Just tell him that you are not comfortable with not having more of an exam.
All the NCCN guidelines have been updated to 2008.
I had a PET/CT scan prior to treatment, then one about 3 months after treatment, and again at 5 months, due to what turned out to be false positives.
I have ongoing appointments with my MO, RO and the Surgical Oncoloogist/ENT. The first year I was seen every 90 days by each doctor, staggered so that I saw somebody every month. This year, they have extended a bit to every four months, which staggers out to about 6 weeks between appointments. The surgical oncologist/ENT, and the RO do extensive examinations of the head and neck. The MO does a more cursory examination, but I have a blood draw every visit with him, and a Chest X Ray every other visit. He also does a more thorough examination of lungs, abdomen, etc.
All in all, I feel I am pretty well prodded, poked and otherwise assessed on a regular basis. ;-)
Gabe,
My doc does an ultrasound of my neck before every follow up visit. He says the technicians at MDACC are so skilled he thinks that is a better protocol to follow in my case since my tumor was not an aggressive type. It works for me...
Thank you all for your input on follow up examinations.
The 2008 updated guidlines also further clarifies for me what follow up exams should be performed for my Dx.
I will print out your replies and the relevant pages for my Dx from the protocols and take it with me when I have the 2 year check soon.
Karen,
how is your husband doing now and did you get any further information from the surgeon re no chemo or radiation required?
Cheers
Gabriele
HI!
I need to choose a place for workup and treatment.I live in Cincinnati, OH and have heard horror stories about our local University Hospital. I am seriously looking at going to M.D. Anderson in Houston for workup and surgery even though its a lot more work. Have you ever heard anything less than excellent about the level of care and outcomes from M. D. Anderson?
Thanks.
Mike
DX SCC right lateral tongue 12/01/08
Please go to the additional resources page of the main web site. One there choose the topic heading that says databases. One of the very first listings there is a link that it titled, "best hospitals". You will now be taken to a list of the top 50 cancer hospitals in the US, updated every 6 months. MDACC is at the very top of the list. If you read through how they come to their listing order, there are many factors, not the least of which is survival rates. In all this, two things to remember. One that the disease is very unforgiving of half measures, or incomplete primary treatments. The second is that you only get one chance to make the best choice that you can. If you choose MDACC there are inexpensive fully equipped apartments for rent right next to the hospital that social services can hook you up with for the couple of months you will want to be there if you do not have family or friend in the immediate area. For me that was the hot set up. The top ten are full of hospitals ion the east coast if you have family in that area, any one of which I would feel good about going to. I was diagnosed in November and went through treatment in Dec and Jan with a return for surgery in Feb. Winter in Houston is way better than winter in the north east. I went to treatments in jeans and a T shirt.... way better than slushing though a couple feet of snow... and cheerier to be in during a depressing time.
Wouldn't argue with MD Anderson, but also check out the Arthur C. James Cancer Hospital & Solove Research Institute in Columbus. They have an excellent reputation, especially in Head & Neck cancer. I have been very pleased with my treatment and recovery course, and know several long term survivors.
Worth a look.
I must agree with Jeff. The James Comprehensive Cancer Center is one of the better Cancer Centers and we can't leave out Cleveland. Another closer Hospital for you is the Wheeling Shiffler Comprehensive Cancer Center in Wheeling, WVa at Wheeling Hospital.
Maura Gillison from Hopkins is moving to James the beginning of January. They have recently received a huge long-term endowment and are recruiting the best from institutions all over the US.
Please emaile me your reasons for not going to Cincy...I was recomended to go there and I am scheduled onthe 22nd for my partial glossectomy & neck dissection.