Hello everyone
It looks like my last topic "It's Beginning" was closed it ran away I guess.
Its two months since I've been out of treatment now and things are going well MRI is on April 11 to see if they can detect anything. Eating almost anything now but gets sore if I eat anything to dry or large. Just to let everyone know who has SCC of the left tonsil This was the toughest ride of my life at times I didn't thing I could take it anymore but with all the support I had from all of you here and my family I made it over the hump. I know it's not over yet but I feel so much better now that I can drink and eat again my life has come back a lot. I still may have surgery but from what I have read on the forums it

Bravo Raymond! Thanks for giving me some hope. I have stage III, SCC, in the right tonsil and finished treatment 20 days ago and I'm still having a hard time. Somedays it seems like I'm going backwards. The radiation burns seem to be getting worse. It takes a lot of patience (which I have never been good at).

Bravo Raymond,

It's great that you are keeping us up on the good news. And even better that you are seeing the light at the end of the tunnel, and it's not a train. You Go Raymond!!!

The eating will continue to get better and what doesn't you'll learn to work around (cut smaller, add gravy, drink water) It just becomes the things we do.

Gary, You hang in there - your progress is good. As you've read on the boards the radiation does keep working after the treatment ends. But you'll get there.

Someone the other day said and it made a lot of sense to me. In our recovery don't compare today to yesterday, compare today to a week or so ago or more. Sometimes it's so gradual we don't realize it.

Glad to hear you guys are both doing well. Keep up the good work.

Take care,
Dinah

Hang in there, Raymond-my pom poms are raised for you!

Ms. Dinah-what is the update from you? Sending you pom-poms too!

Kim

Raymond and Gary,
Hang in there guys. It only gets better with time. Sometimes now I forget that I have been a victim of cancer and I think of myself as having gotten over it, like a bad flu or something. This may be a little unrealistic, but for now I feel so much better and like I am on my way back to a normal life...forever changed, but still a normal life.
Keep the faith,

Danny G.

Raymond, that is great news! From here on out, things will just get better.

And Danny, that is exactly how I feel -- I forget what a serious thing I battled, and feel more like it was just a case of flu. Isn't that wonderful? I sincerely hope that everyone here can someday get to that point.

Joanna

(Which is not to say that I will ever miss a checkup!)

Hi Danny,
Thanks for the kind words. I think it God's little joke to force me to learn patience, which has always been my worst character defect.
They have your swallowing problems resolved?

Gary,
My swallowing continues to improve. I did have my esophagus dilated three times and it seems to be remaining sufficiently open. I am now able to eat a lot of soft foods and I can easily drink smoothies and shakes...which I could not do a month ago. I tried a hamburger pattie today and it was a complete failure. I still have a long way to go and I haven't shed the PEG tube yet, but I only use it about once a day. I drink a lot of Boost Plus and eat yogurt, but I am able to eat many soups, eggs, vegetables and even fish.
My problem is that I cannot seem to eat much volume, certainly not enough to gain weight back. You would think that these thick milk shakes that I buy would put some weight on me!
Gary, you have no choice but to be patient...and you WILL feel better. I started taking a walk every day after I finished radiation and felt bad. Have you felt up to that?

Take care,
Danny

Hello again
Just to update everyone here I was at my Rad Onc. For the results of my MRI and was told all clear! That he could not see anything on it and was told in another month he would do a ct scan and if everything is clear they would probably not do the rad neck dissection has anyone had stage 4b tonsil cancer without a rad. neck dissection? Because he also said their is a possibility I still might have a rad. neck dissection even if the don

Hi Raymond,
First of all congratulations! I think I am a right person to answer your question because my tonsil cancer was also stage 4B.I didn't have any neck dissection. I remember having the MRI, CT scan and ultrasound two months after completing radiation and chemo treatment to confirm the status of my cancer. In between the time when I had appointment with my oncologist, he also said there was the possibility of operation. I could still feel the lump on my left neck then and wasn't sure if it was cancerous or not. My oncologist could not give a straight yes or no. So the waiting time was a rather hard one until the results of the tests were known. So there is nothing you can do now and even if surgery is necessary,it should be a fairly easy one with a much smaller tumor.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Raymond,
My base of tongue cancer was stage IV with 3 neck nodes. After being blasted by the radiation with a little chemo, the nodes were gone, and therefore no need for the neck dissection. I would imagine the same would apply to you.

Danny G.

Thank you very much for all the quick replys it sort of sets my mind at ease to here that no surgery is quite normal I thought to myself why come this far and not have the surgery to be sure. I was going to demand it I guess another month to wait is whats going to happen. CT is a month away and I'll know for sure.
God Bless
Ray

Raymond, Glad to hear you won't have to go through any surgery. I can tell you this has got to be the toughest aspect for my husband so far. He did have the neck dissection surgery this past February, and he is having an extremely hard time with the after-effects. As bad as going through radiation was for him - this surgery has been far worse. I'm at the point where I'm wondering if this surgery was really necessary after all. The surgeon said it was (of course)...but the radiation did such a great job at the tumor, I wonder if he should have waited with this surgery. Anyways - everyone being different, I know most people didn't have such an ordeal with it - but if you can certainly avoid having this done - be THANKFUL.

My husband had surgery in February for removal of the tonsil,base of the right tongue and soft palate. He has had 19 treatments of Radiation with 14 more to go. After reading different posts it makes me wonder if he should of had the RAD first. The doctors acted so quickly after he was diagnoised because time was so important. We feel he had good advice but we did not go to another source for another opinion of treatment. He is with Doctors from UCI in California and goes to Long Beach Memorial for the radiation. I know it will be a long haul for us but I want him to be able to eat again in the future. A question I have for others is when do the swallowing therapy starts, after he heals from radiation? There is so much of a differences of treatments with the patients in this forum, I get a little confused, what is best???? That is probably a silly question as everybody is different. Thanks, I will keep reading and hopefully learning. Becky

Becky, I think your choice of treatment is fine. The benefit of surgery first is that it heals faster. After radiation, surgeries are more difficult and heal slowly. Don't feel shy about asking his doctor (or another) why he/she chose the path they chose. I think you'll find it was a very normal decision.

I think that the swallowing therapy will only be necessary if he has problems beyond the norm. If your husband is able to swallow fairly ok then he will be fine. I say fairly ok because swelling and a certain amount of pain are normal. as it gets worse then he will need more liquid or blenderized food. Personally I had a little problem with getting liquids swallowed without a drop or two getting down the "wrong pipe" causing a coughing spell. That gradually went away.

Hang in there I think you are both doing fine.

How is his weight holding?

Hi Becky:

This is Kim borrowing Dave's screen name because mine is having computer cookie issues today. The reason you are picking up discrepancies in treatment plans for people with head and neck and especially oral cancer,is because the abyss is wide and provider preference as well as treatment protocals differ.Institutions that are research-based versus those that are surgical teaching facilities also muddy the waters.

Dave and I both are nurse practitioners and are familiar with the lingo and the hierarchy inherent to medical providers. We found it very overwhelming to navigate through options, weed out provider personalities (some good folks and some pompous asses looking to make Dave a new study number). You may have read some of Brian Hill's posts where he delineates the massive spectrum of options and opinions that exist mostly for the folks with Stage 3 cancers. There is also great debate about how you deal with nodes, does size matter, and does number matter.

In short, there are few absolutes in the treatment world.

I can give you a few helpful rules of the road though. In general, it is easier to operate on non-radiated tissue than radiated tissue(it loses it's pliability) which is why some people have the surgical procedure first. Some tumors aren't easily accessible at first surgically due to size and location and need to be shrunk by radiation first before surgery can be considered.
The overall health of the person prior to the diagnosis matter as well as other medical problems (like lung or heart trouble) that may make the person a poor surgical candidate.The immunosupression caused by radiation and massive weight loss can complicate surgical recovery as well.

You will also notice that there is much debate about the addition of chemotherapy to the mix. In most cases, if a non-surgical cure is sought, radiation and chemo are used together. In advanced cancers and/or those with multiple of bilateral node involvement, chemo may be offered as an adjunct to radiation.

The crucial point to make sure is that radiation is done to both sides of the neck down to the level of the clavicle in addition to targeting the location of the tumor.

The one thing that most practitioners don't recommend is a surgical only cure (no radiation to treat possible distant metastasis) unless the staging is VERY early which is pretty uncommon because there are few symptoms.

There is also hot debate about the efficacy of bone scans, abdominal scans, and PET scans which is a story for another day.

My best piece of advice is to have treatment at a credible facility that has a division devoted to head and neck cancer. Ask lots of questions at each juncture of the treatment process and get 2 or more opinions if needed from different providers. You will notice that most surgeons vote for cutting and radiation docs vote for radiation as you would expect. If needed, take films for another opinion to a different facility from the one in which you are being treated.

For the record, my fiance Dave had a 3-4cm tonsillar mass with one node positive. He was in excellent overall health and very fit. He was offered the option of a chemo and radiation course at Dana Farber here Boston or a neck dissection followed by a graft then radiation. We sought a few opinions who said chemo was not needed. We opted for the surgical route followed by radiation probably somewhat because as nurses we were more comfortable with the concept of removing the diseased tissue.I was also neurotic and made Dave have a chest CT and abdominal scan even though many providers told us it wasn't indicated with only one node positive. Well, if it's a question of me freaking out or being assertive-don't mess with me because I needed that peace of mind even more than Dave did.

Lots of folks on the forum have had success with the option of chemo and radiation and are doing very well without the downside of surgical scars.

My final thought is that the real key is getting complete state of the art treatment in a credible place with tight, vigilant, follow-up. And, as I am very fond of saying-Be the Driver of the Bus You Are On Because You Are the Most Interested in th Destination!

Best,

Kim

Kim,
What a great post! You did a good job of making some sense out of some confusing issues.

I'm currently struggling with that "peace of mind" issue considering spread. My husband had CT of neck and chest in December (clean) as well as a full-body PET (clean). Right after that, they did the neck dissection and found the tumor in his tonsil. The pathology also discovered involvement of one additional node, besides the one that was removed and biopsied early on. So that leaves me wondering if the PET scan was worth anything, as far as determining other areas of the body that could be involved. I guess I'm really going through these worries right now because he seems so weak still, almost 5 weeks post radiation and chemo. He is also having a tough time putting on any weight, even though he is getting lots of calories via a PEG tube.

I know this is kind of a neurotic rant, but let me know if you have any thoughts.

Thanks,
Anita

I just returned from MD Anderson, after meeting again with the swallow people and nutritionist. The bottom line is that when radiation is used concurrently with chemo., as was done in my case, it increases the intensity of the side effects, hence my continuing swallowing problems and my blocked esophagus, which has now been pretty successfully unblocked.
The good news in my case is that both my base of tongue tumor and three neck nodes are gone. However even after 7 months I can only eat soft foods, and not that much volume of them. I still have my PEG tube and use it once or twice a day. Of course I swallow liquids quite well and could drink Boost Plus or Ensure Plus rather than use the tube.

For many of us recovering from the treatment is a slow process. I feel well enough and am able to be pretty active, but I certainly would like to be able to eat more easily and more normally. Who knows, perhaps it will continue to improve. Treating oral cancer involves trade-offs. I have my life and my vocal chords, but my epiglotis ain't what it used to be. What can you do but carry on?

Danny G.

Hello again everyone,
Just an Update
I found out yesterday that I will be having a
functional neck dissection.
This will be on Aug 18/03 The Surgeon says depending on how stuck the nodes in my left neck are I may wake up with a Modified, My last CT on the 7th of July again showed my lympth node is still shrinking it's down to 1.5cm now and the are not sure if their is any cancer. Surgeons advice is to "not miss the boat on this", "one cell is a ticking time bomb" That is why I agreed to the surgery. I'll let everyone know how it went
God Bless
Raymond

It sounds like you have a very good surgeon. Many of the recurrences that I have encountered are misnamed, they are just reappearances of the original cancer in micrometastic form, that had been there all along, and finally had grown to a visible size. His advice is well founded. You are getting down to the easy part and it's almost over. Good luck on these final procedures, and we all wish you a rapid return to a normal life.

Thank You Brian
It's been tough at first but this web site has helped a lot. The people in here are fantastic and have been a good inspiration and a great friend. I don't post much but I like to read and I will try to give back and help out as much as I can in the future. Getting back to a normal life is a milestone, putting this behind me and not having to go to doctors, tests anymore is my goal.
Now its time to watch the kids grow up!
Thanks Again
God Bless
Ray

Hi All,
I've not posted for a while but have been following your messages. Good luck Raymond with the surgery, you'll be back to form in no time i'm sure.
I have the enviable option of radical neck dissection to the right side but only if the left nodes are not active! CT scan shows nodes have shrunk from 4.5 cms on the right and 16mm on the left (clavicle) down to 11mms each. Nobody can determine whether they are still cancerous and active (although they haven't grown at all in the last 2 months) or not as they are too small to biopsy.
The jury is still out on the value of having a PET scan done to try and decide on a course of treatment. Does anybody have any suggestions? My radiologist is lukewarm about having a PET scan as she feels there would be more questions raised than answers given i.e. that it has "possibly spread to lungs already" as suspicious left nodes were so low down and that treatment is not possible with anything but palliative chemo later on. My surgeon however, feels that a PET scan might determine that the left side is ok and that salvage surgery to the right might then be valuable. I don't want to dither and miss the boat but it seems to me that the lymph nodes responded quickly and almost comlpetely to rad/chemo and that i'm just left with scar tissue but who knows?
I finished radio on 21st March and would like to reasure those of you who are just finishing up that 4 months on i feel almost "normal" except for dry mouth and a little tiredness, hang in there!
Many thanks for listening and for being there,
Frances
PS Does anyone have advice about whether to leave unused tube in - just in case? Doc is reluctant to remove in case i'll need it sometime in the future but i haven't used it for months! Apparently it's not so easy to put in a second time!

Welcome back, Frances. It is nice to see you post again. I have no answers for you EXCEPT about the PEG. I made an appointment to have mine removed and when I got there, was informed that I had failed to get the okay of the doctor. Told them "my tube, my body, my decision" etc., and they pulled it, telling me that if I had to have it put back in, it would not be any problem. So who knows? I know after not using mine for just a couple of weeks, I was most anxious to be rid of it. I am glad you are feeling so well, and hope you can get more information so you can wade through all the options with some assurance. I will vote for the scar tissue option!
Joanna

Hi Frances, good to know you are back to 'normal' so soon. Can't remember exactly the stage and type of your cancer. The size of your lymph nodes has definitely reduced significantly. I never had a PET scan and the team of doctors did not offer any surgery because they firmly believed that what was left was scarred tissue. The decision was made two months post treatment.In fact at that time I was prepared to have a neck dissection and had discussed it with my oncologist. His answer was a straight 'not necessary'. I trusted him and believed they had made the right decision for me. So far so good. I have no complaint.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi,
Thanks Joanne and Kareng for your encouraging replies - will persue tube removal this week - can't wait to do exercises again, for my abs and complaining back!It'll be good to start proper physical rehab and to get back to pre-treatment fitness although can't see it happening overnight!
Does anyone have any advice on post treatment follow-ups? So far I've had a CT scan 3 months after treatment finished (max radiation to both sides neck and 2 rounds of Carboplatin/5FU's) and a second scan 1 month later which showed no change but still "suspicious" area low down left neck. My radiologist wants to wait now until October at least - does a 3 month interval sound about right? I'm so worried that they might not catch a recurrence/spread soon enough to treat but from what she implies, there's nothing more they can do anyway - maxed out on rad and chemo. Huh, guess it's just one day at a time but i want to hear that i'm in remission. How can they tell?
Is it just a case of wait and see or is there something more concrete to go by?
Don't know if this makes any sense but i'll post it anyway!
Thanks for listening,
Frances

Hi Frances,
Good to hear from you again. It sounds like things are going well. My field is in radiological devices and I (and UCSF) where I received IMRT treatment (I am a Kaiser Permanente member but they contract out radiation oncology services, hence the reason why I went to UCSF CCC for treatment) insisted on a PET scan. I was relieved that the only place where cancer showed up was at the tumor site. PET scans have become increasingly accurate and with new fusion techniques, i.e. Pet/CT, offer even greater accuracy. I have read reports of up to 98% accuracy. Your doctors knowledge may be dated or the HMO doesn't want the added expense of the test (they are a relatively expensive scan). They are also a very long scan so throughput also makes it more expensive. They also need to be close to a cyclotron to have access to the short half life radioisotope they inject into you.

I finished treatment (rad/chemo)in March and have been on a 6 week examination schedule with the oncologist, radiation oncologist and head & neck surgeon. I had a CT mid treatment and an MRI 30 days post treatment. I also had a chest x-ray (specifically to detect lung mets), also requested by UCSF. The Head & Neck surgeon has just moved me to 2 months, as he is happy with my healing progress. I meet with the other two doctors on Monday the 11th so I'll let you know the outcome. I have also still been getting an occasional blood test because my WBC has remained low and I take a maintenance dose of Diflucan so I have liver and kidney function tested periodically as well.

I can't comment on the PEG since I opted to go with the PEGless diet plan (sic). It worked really good - I dropped over 60 lbs.

I am not sure but I know of people who have been on chemo for years. Maybe you can't have the chemo you just had but here are many different chemo options. If you had IMRT you can have radiation again nearby (Not that I would particularly relish of thought of going through either one again). I also understand that the amount of radiation you had is also a factor. Sometimes they only give 60 Gy and can later add another 10 Gy if need be. You should know that number - ask your radiation oncologist.

The new ACS booklet has a lot of useful information about post care you can download or order it from:
http://www.acscsn.org/books/ or check out the thread in survivor stories.

As far as your exam frequency, they are probably following standard practice guidelines (or worse - insurance co. guidelines) for your particular tumor and staging but I would definitely ask. I was surprised that I was on 6 week intervals (originally they had told me 8 weeks). It was comforting and frightening at the same time. I get a little more comfortable each time however.