Hello,

I am a new user of this forum. By way of introduction, I have SCC (lateral tongue). Underwent neck dissection and tongue resection on 5/6/11. Doc called me last Friday about pathology report and indicated that two (of the many that he removed across four stages) lymph nodes showed some positive activity. He said that the good news is that there is no extra capsular spread. Not sure what that means. He believes that I must undergo radiation and possibly even chemo.

I have several questions that are undoubtedly covered on other posts, but I will ask them here just in case.

* How can I determine if I absolutely need radiation and/or chemo?

* I have heard about the side effects of radiation--especially dryness, etc. I read somewhere about a new treatment (TOMO?). Is there anyone in Portland (OR) that offers this kind of service? If not, I could travel to a nearby location that offers this. I want to try to save my salivary glands if possible.

* Any referrals to Radiation and Medical oncologists would be greatly appreciated.

* Any tips or suggestions to prepare in advance for the side-effects of radiation and chemo. I read somewhere that possibly having a Doctor of Naturopathy on the team may be a good thing to cope with the side effects.

Thanks in advance for any tips/inputs.

Best Regards,
Chetan

Welcome to OCF! Its best to seek out a cancer center to go for your treatments and a second opinion. There will be a whole team of professionals who are experienced with oral cancer and can advise you. I have provided links to the top hospitals and cancer centers. At OCF, we do not recommend any specific doctor but so recommend going to a cancer center.

http://www.oralcancerfoundation.org/resources/cancer_centers.htm
http://health.usnews.com/best-hospitals

Hi there I live in Toronto - so I can't help with the doctors and tomo - I had IMRT, however I had the same kind of surgery you did. I had one lymph node involved but there was minor ece, I also had perineural involvement not sure if that was in your path or not. i just finished rads and chemo 2 weeks ago tomorrow and am slowly recovering. I have to say I had both sides of my neck radiated and my tongue. So far Im feeling okay my throat is the only thing that's still sore but I'm getting through it - it's manageable. My RO said he would work to preserve my salivary gland as so far I am drooling like crazy though I'm told that may change - it has slowed down somewhat - I know there are a lot of fall outs to radiation and chemo but if they recommend it - do it. If you have no precursors for this it's better to treat it aggressively - there are no guarantees but I would rather hit it with both barrels to start with. Radiation is hard chemo just makes it more uncomfortable, but it is doable - just do your exercises - bulk up before hand - educate yourself on your care. Keep hydrated and invest in Manuka honey! It helps with the sores - best of luck - 8 weeks ago I was where you are now - you can get through it!

Hi,
I'm sure others know more about Tomotherapy than I do, but I think it uses a CT scan to precisely fix tumors for every day of radiation therapy. Because you, I think, don't have any visible tumor anymore (surgery removed, right?) it would not be helpful for that. Regarding your neck, I'm not sure it would apply in this instance either, at least from what I read. BUT I will tell you that your radiation oncologist may be able to spare some of your salivary glands anyway, by using IMRT. My parotids were written into my plan as not being touched, however, that means I think that they did not receive enough scatter radiation to destroy them, that they will come back. I have a little bit of saliva (2.5 months out from treatment) but have been told not to expect it to return for a year, and if it returns sooner, then that is a bonus. One of my submandibular salivary glands was removed (no cancer there), while the other one is, at present anyway, quite nonfunctional. There is some research about accupuncture restoring their function, and I know the cancer center I was at referred patients for this.

IMRT sounds like it probably is the way to go for you, and I would imagine that it has been mentioned. I am definitely not a doctor however. I agree with Christine that a cancer center is the best for oral cancer.

Like you, I had no visible cancer after my surgery (I assume that from your post)and the radiation and chemo were simply to clean up any microscopic disease.
Anne

Hey Chetan (cool name by the way!)
Definitely go to a CCC! Most of them have a Naturopath on staff so take advantage of that service. It's my general knowledge that once they find activity in the lymph nodes they like to follow-up with radiation and chemo - for me, it was likened to a "mop" job to clean up any cells that may have escaped the surgeon's knife.
I seriously debated whether or not to go ahead with the radiation/chemo - or wait to see if any new symptoms appeared before treating with agression - that was a wait and see game that I just feared would take over my life. As it is - 3 months after treatment, I still think about recurrence everyday and perhaps always will but there's comfort in knowing that there's a good chance the "mop job" got it all! I'm not a gambler and I think insurance is a good thing - chemo/radiation was my version of an insurance policy.
If you do go ahead with radiation and perhaps chemo you'll need a strong support system - you'll find that here if you need it! It's tough stuff - very tough - don't let the experiences of others shared on here scare you too much - they're not embellishing but it's different for everyone. You don't know how it'll affect you until you're already going through it.. Best advice I received was to hope for the best but prepare for the worst.

Chetan,
I had Tomo.
Tomo is a form of IMRT delivered somewhat differently (Rotational Arc Therapy). Like many modern IMRT systems, TOMO also uses a daily CT setup scan so it is very precise.

Since its introduction in 2004, several similar systems have been developed, the most significant being Varian and Novalis Rapid Arc. Siemens also now has a VMAT system, so all the major IMRT vendors now have a TOMO like IMRT solution.

TOMO apparently holds some patents that may still give it a slight advantage in Head and Neck, but it is most important to choose a good Cancer Center first and consider their technology second.

Although it is true that SOME of us have TOTALLY avoided long term effects of dry-mouth we also have to give a lot of credit to the team that had the expertise with advanced tools like TOMO.

Chetan,

You are a NWsterner like myself and being in OR you have a nationally ranked ENT (#34) facility in Portland in Oregon Health & Science University. It's also high performing in cancer care so if you are close to Portland I would suggest there. If you want the best care in the PacNW then you'd want to go to the UWMC in Seattle (#5 in cancer care and #13 ENT in US).

The UWMC is where I had my tumor board and they put together my treatment protocols so my local facilities could do my rads/chemo and then I had all of my surgeries in Seattle. The best advice you could get from these forums is choose the absolute best medical treatment available to you, it's only going to improve your chances in survival and any subsequent side effects from treatment.

I would venture to say that if I hadn't had the UWMC in my corner I wouldn't be alive today.

Best of luck

Eric

Hi,
As far as I know, with IMRT I had scans once a week to make sure everything was lined up correctly. So yes, IMRT in itself is precise.
Your treatment plan devised by your RO is of utmost importance, both in terms of cure and quality of life afterwards. (thanks for the input on tomo)

Couple of other things I could have added earlier. For cancer of the oral tongue, surgery plus radiation & perhaps chemo give you the best chance of being cured, shown by studies. And, regarding extra capsular extension: the gross ECE can be detected when you remove the diseased lymph nodes. But for microscopic ECE, like mine was, it has to be found in an painstaking layer by layer disection of those lymph nodes, and you won't hear about it immediately. It was a surprise awaiting me when I returned for treatment a month afterwards, although I do not think it took the entire month to find it. (I had some holidays intervene with some of my diagnosis)

Best,
Anne
Should have added also that I had quite a bit of saliva until the last few days of treatment and afterwards, which is why I could also eat solids. Now it is quite a bit less, but I do believe it will return.

Hi
I'm slightly diff as in uk but I was offered imrt well asked for it and have to go to london as local hospitals don't have it. I was told it will spare my salivary glands etc. I'm having cisplatin which highlights the rt. I felt I'd rather travel and have this better treatment and less side effects in the future.
Jayne

Many of us have gone thru the same treatment. Cisplatin can be rough (nausea issues mainly) especially when given in 3 doses over the course of the rads. Our advice is to fatten up now eating anything/everything in sight. During Tx consume at least 2000 to 3000 cals each and every day and drink at least 48 osz of water each and every day. Most don't start to feel the effects of this Tx until around the 4th week of rads and believe it or not most find the 2 to 3 weeks POST Tx to be the worst. Hang in there and please ask any questions, complain about anything, etc anytime you want. That's what we are here for. We are here 24/7 to make sure you get through this small pothole in your life.