hi i am frances"s sister and i am in need of some help with her cancer treatment or lack of it> i also need some help with this computor which is stuck on caps lockwithout the capitals!!!! she is #( (thats thirty nine) and first went to her gp with enlarged lymph nodes> i have had a fine needle biopsy and the opinion of two ent surgeons is that its probably coming from the right tonsil> nodes are various sizes ( five mentioned in ct scan) the largest is a mass of two which is around my sub mandibular gland and each part is three cm in length> to cut a very long story short we have had to battle every step of the way and have now reached a point where we are getting two very conflicting stories from the professionals>

theory one is a radical neck dissection followed by chemo+radiotherapy> we have been told that this would give the best chance of cure> giving the chemo with the radiotherapy makes it fifteen percent more likely for cure> this surgeon is a plastic surgeon with an ent qualification>

theory two is five hundred miles away in the state capital in the major hospital> this is for radiotherapy first then see how the nodes are< if they have not gone a radical neck dissection< fifty percent chance that no surgery would have to happen!!! no problems normally experienced if needed to operate on a already irradiated neck>

does anyone have some hard and up to date figures on these two different approaches> the first is supposidly the american approach the second the european> and i live in canada!!!!!!

I have never heard either of these possible approaches referred to as American or European. Here in the states every institution has it's own preferred method of treatment, and many use both that you have suggested depending on many factors including the patients ability to tolerate various treatments, the staging of the cancer, and preferences of the treating professionals. They are essentially the same treatments except for the order in which they occur. As to one possibly eliminating surgery, I think you will find that the consensus of opinions favors a neck dissection regardless of what the final result

I was given chemotherapy and radiation at MD Anderson for base of tongue tumor and 3 neck nodes. Following treatment ultrasound showed one area of concern in neck node. When needle biopsy showed nothing, I was NOT given neck dissection. Apparently if the Drs. are satisfied that the radiation has dispensed with the malignancy in the nodes, they do not always call for neck dissection.

Danny G.

I will have to remember to use the words "may and usually " more often, as Danny has pointed out there are not absolutes in cancer treatment, and he is quite right

Hi,
My husband and I also received two opionions of what should be the course of treatment -- chemo/rad first then possible surgery or surgery first. I agree with Brian that many factors must weigh in the decision. There is no right or wrong answer, just the right one for you.
However, what helped to convince us to go with surgery first is our ENT surgeon said it was better to do surgery first because the tissue would be in much better condidition. I.e, there would be no scarring tissue or damaged tissue related to the radiation and he would be able to see the edges of the tissue better. (I know your docs were saying that there would be no problem operating on a radiated neck, so I guess it's a matter of opinion.)
Also, having gone through this, we personnally are happy we went through the neck dissection first. The rad/chemo treatments were particularly tough and my husband lost a lot of weight. To think he had to go through a radical neck dissection including a treacheotomy AFTER radiation is difficult to imagine. The only other factor is the location. This whole process is tough and time consuming. Depending on family/friends support network, you may want to consider staying closer to home. It is a difficult decision and I hope things work out for you.
BC

There is no question that for the doctor performing the surgery, that pre-radiation surgery is easier to accomplish. Radiation alters your tissues, and the term they use most frequently is that it makes them "gummy" to cut through. This is particularly problematic when suspect tissues, which have to be removed, are wrapped around vital structures like the main arteries of your neck. The only reason to wait therefore would be in the hopes that the radiation did everything necessary, and PERHAPS surgery would not be needed at all. My issue with this, is that completely dead, cancer free tissues (nodes which were malignant before radiation), show up just as well as those that have cancer in them when viewed by CT or MRI, and no one without cutting them out, knows for sure if they still contain malignant cells or not. I didn't want to have surgery at all, and when I was offered this I jumped for the option, but I didn't know then what I know now about diagnostic techniques. A fine needle biopsy isn't much help since that little 20-gauge needle could hit a still malignant area or it could miss it altogether. As a side note, every node that was taken out of my neck after radiation was dead as a doornail for malignant cells, and I could have not had the dissection. But there was no conclusive way to know that. Neither the doctors nor I wanted to gamble on something still being active no matter how small the chance.

I should now add this disclaimer to my post. Each surgeon has his own comfort level with what he is willing to do, some I know NEVER cut irradiated tissues, others do it as a matter of course. We all put our trust in these guys to give us the best opinions and choices they can. Some are comfortable with the fact that if a node got nuked into the Stone Age, and a fine needle puncture afterwards didn't show any cells that were malignant that is good enough. They surely make this decision based on tons of experiences that they have had which had positive results for their patients. Others, like mine view this differently. Is there a "right" protocol? Of course not. Doctors are as different in their experiences, opinions, and skills as we are as individual patients.

Hi, Frances's sister here again. Thanks for all your postings, they have given us food for thought. Since I wrote last we have finally been seen in the local cancer centre and have been very impressed. They have restored some of the trust in the "system" and we are going to work with them to beat this thing. Friday is make your mind up time, its a hard choice but one that I know my sister will find the courage and strength to make the right choice for her, which will be the right choice for us, her family. Thank you all once again, we have been avid readers of this site and it has helped in many ways.
Best wishes to all out there.- Meryl

Hi Meryl,

Brian pretty much said it all. There isn't one answer that is right for everyone. But, for what it's worth, I agree completely with BC. My daughter's surgeon also said it is much easier to operate successfully before radiation. And the RAD was also very hard on my daughter. I'm sure it was much better for her to have the surgery first.

Also, just my personal opinion, but I felt better knowing the tumor was removed as soon as possible.
In my daughter's case, they operated 2 weeks after she was diagnosed. Her surgeon's normal operating day is Monday, but he booked hospital time on a Wednesday so he could get her in 5 days sooner. Again, every doctor and patient is different, but he felt it important to move fast. So, no matter which course your sister chooses, I hope it can be implemented soon.
My daughter's ordeal only started last August, but feel free to email me if you want. My daughter had the neck dissection and radiation, and I would be glad to answer any questions.

Rosemary

Guess I have to jump in here and say that I too had the surgery first and I am glad I did. I personally believe that I handled it better recovery wise, because I was stronger having it before radiation.

Just my cents. I wish you well.
Take care,
Dinah

Two more cents, if you can stand it. I had my surgery first, including a radical neck dissection. They were able to remove both tumors with clear margins. During my neck dissection they removed all of my lymph nodes on both sides of my neck. All of the nodes were clear and I did not have to have RAD or Chemo. Not sure if this helps, as all situations and doctors are different.

Take care.

Anne/

Hi there,
Decision day was grim, new scan results showed spread to multiple, bi-lateral lymph nodes and a poorly differentiated (aggressive)tonsillar primary.
Treatment recommendations are now for chemo/radio to large field as spread is as far down as clavicle and surgery is out of the question. Ho hum here we go - had mask fitting done and ready to roll soon.
The only unscanned part of me is my brain and of course there is a recurring worry that it might already be lurking there and that all this treatment will be in vain ( in my weaker moments only)Does this ring bells with anyone? Did you ever feel like running away to the mountains for your last few months?
Am trying to come to terms with the gross incompetance/delay/ignorance that has allowed my cancer to spread to the other side of my neck - it was clear last month and the margins on the right side were clear and operable! At least my medical team now are wonderful and have restored my faith somewhat but I feel that I could maybe have been the spared chemo and possibly even my life!
Am off ski-ing now with my sister and my dog, feeling fine in myself and the whole surreal nightmare can wait until tomorrow!!!
Best wishes to all,
Frances and Meryl.

Why can't you have radical neck dissection on both sides ?

I was diagnosed Stage 4 left tonsil cancer with multiple lymph node invilvement (left side), I was also poorly differentiated SCC. I remebered my ENT surgeon said if I had nodes on both sides, he would do the neck dissection on botrh sides.

You could have neck diseection on the sides with large lymph nodes then let the Chemo/RAD take care of the rest. In my opinion, get rid of the tumor is important

Dear WZ
Thanks for prompt reply.Guess that the tumour has invaded local structures and has become entangled in the carotid etc. I will check this out with the Radiologist tomorrow. I was pencilled in for surgery tomorrow and I guess that they would have gone ahead if they felt it appropriate. They have told me that I have a life threatening situation and the only viable option for me is to recieve carboplatin and 5FU along side radical radiotherapy. I believe these guys are really on my side, I have to! What is your treatment plan? Sounds like us young un's have to play with the bigger girls and boys eh?
Best wishes Frances and my sister Meryl

Frances
My husband's tumor(lymph nodes) was touching the carotid artery but not wrapped around it. The CT scan showed the tumor was right there but they couldn't tell if it had invaded the atery etc.He was told if during surgery they see it is wrapped around the atery they would stop the surgery, and radiation and Chemo would have to do the work. They were very concerned because my husband wanted to take a 2 week break/vacation with the kids before the surgery and the ENT surgeon told him it could be too late for a succesful surgery if he waited.
We decided to have surgery 4 days later. The tumor was peeled off the atery. He had radiation and cisplatin 3 weeks after surgery and so far so good!!
Good Luck Frances you will be in our prayers!!
Sherrie and Dan

What I had is tonsillectomy and radical neck disection. He removed about 70 lymph nodes. The surgeon cut my mandible in order to get adequate access to the tumor site, I had a pectoral skin graft made from my left chest and transplanted into my mouth/neck to cover/fill the void left by the surgery. A metal plate was installed to the mandible to connect it together.

Following the surgery, I had 30 RAD and concurrent weekly Chemo of Cisplatin. Two weeks into the RAD, I developed an infection, I had a surgery to drain the pus from my left chin, so, the RAD stopped for more than a week, then the Doc increased the number of RAD to 33.

My treatment was done late Nov 2002. again I had several infections in my left chin since then, so the Doc sent me to Hyperbaric oxygen treatment now, it will be done late Jan. At this moment, I still feel throat pain and all the side effect from both surgery and radiation.

Wishing you good luck in your treatment

Frances,
My base of tongue tumor had grown too large for surgery and therefore I was treated with Radiation and concomitant chemo only. As of now both the tumor and three cancerous neck nodes are gone. So, this stuff can work without surgery.
You go girl! I like your attitude.

Danny G.

Hi Frances:

I've been following your posts and am sorry to hear your situation and options have changed. My partner Dave had a radical neck dissection on one side after discovery of a tonsillar tumor and one lymph node in August, 2003. He also had post-op radiation but no chemo.

Funny you get to know people here by their medical diagnoses first! Anyway, there is hope and life after treatment for oral cancer and Dave's first day back to work post-treatment is TODAY!

Let me chime in to wish you our best and we are pulling for you!

Kim & Dave

Frantastic news for you both. Take it easy Dave, don't work too hard. Unfortunately Frances is spending the night in hospital after a peg fitting that has turned into a bit of a nightmare for her. Very painful with lots of vomiting. We have had a very hard day, its so hard to leave someone you love in other peoples care and trust them to look after them. As a nurse it has certainly given me new insite into the whole Nurse/patient/relative relationship. So tomorrow she is having an ultra sound of her abdo,if everything is ok its off for treatment planning and a trip to the dentist! Something for her to look forward to!!! Life is a bitch at the moment.
Take care all out there. Best wishes
Meryl - The sister.

Hi Meryl,

So sorry to hear of Frances' problems with the PEG tube. My daughter also had a lot of pain with hers. No vomiting though. She has continued to have some trouble with it the whole time she has had it.
BUT she still is glad she got it in. It really is essential. Tell Frances to hang in there. The first couple days were the worst. IT WILL GET BETTER!

Rosemary