I have been reading about lifetime RAD exposures and how it's unlikely that the same area can be treated again if the cancer returns in the same place. I asked my RO about this today and he confirmed that if my MEC returns in the same Parotid bed, he most likely will not be able to use RAD to treat it. Apparently the 60 Gy I will be receiving in total for my 6 week treatment will be too close to lifetime dose. I am concerned by this. If it comes back, which some say is unlikely and some say is likely (nothing much in between), there will be no treatment other than surgery with some chemo if necessary for tumors that they can't remove. None of that sounds like a cure to me - just a slowdown in the inevitable progression. I REALLY would like some clear answers but it seems Oncologists are amazingly vague. They don't seem to want to discuss "what ifs" or "recurrence rates'. The RO that I went to for a 2nd opinion said recurrence rates for my Parotid MEC are about 35%-50% which seems very high to me. I guess I need to hope it doesn't return in the same location or there won't be much they can do for me... Has anyone had a recurrence in the same place and did they do RAD on it anyway?

Ive seen several members go thru rads more than once. This is done on a case by case basis and is very detailed as to who qualifies to go for round II of rads. Also the time between 2nd diagnosis and when given rads plays a role in this as well. Most of us have had between 60 and 72 greys for rads. A second treatment with rads is usually a much smaller dose.

You may see many members here who have had recurrences, myself included. This is NOT a true reflection of how many patients really go thru it as many of the one timers move on and go back to their pre-cancer lives when recovered. Im surprised your doc said MEC recurrence rates are so high. Most doctors dont throw numbers around, especially about statistics as when studied in depth the numbers tend to change.

We all get concerned about recurrences. But, usually its after finishing rads while we are waiting for our next scan or check up we start going to the "what if's". That said, there is alot to be gained from that old adage of "not borrowing trouble." Over the years I have taught myself how to avoid the "what if" thinking. This helped me by taking so much unneeded stress off my shoulders. By focusing what is within my control and only entertaining those thoughts on a very limited basis it has helped tremendously. When you begin to worry about "what if" stop for a moment and check the time, then allow only a few minutes to think about this and then "change the channel" and get up and go do something positive that requires your concentration.


Im not downplaying your concerns at all so please understand Im just trying to help make everything you are going thru much easier for you and less stress from worrying makes it easier. By focusing on mainly whats within your control, your intake, it will help you get thru this easier and recover faster. Everything that might or might not happen down the road can wait til later. Ive provided you with some links. Maybe reading up on your illness will help you to better understand it so you can be a stronger advocate for yourself. Ive found that once I started reading and learning about OC, I would ask my doc completely different questions than when I first was diagnosed and said simply (and blushing, innocently).... "fix me."


Main OCF pages--- Statistics

NCI ... MEC Survival Outcomes


Main OCF pages--- Understanding section

Hope this helps and best wishes with everything!!!

There is no legal limit, as far as I know, how much radiation a patient may receive, and never heard or read of a lifetime radiation limit exposure many speak about, although I believe I've read "whole body" radiation at once, 10Gy, would likely cause death, and there are toxicity limits for certain structures that above such would cause unacceptable toxicities such as to the brain stem, spinal cord, brachial plexus, etc, which are usually limited in Grays, and daily fractions. Non cancer involved Parotid Gland may receive less than 30Gy, around 50% volume, so it can recover, produce saliva, as is one reason for dose sparing IMRT, but your case is probably different being it was involved.

For radiation workers there are set exposure limits, but as far as patients, they're pushing the limits each year with different types of radiation, Grays, fractions, volume, flaps, etc, and it's becoming more common to possibly reirridate in select patients at experienced centers as I have had radiation 5 times in three years. Twice was with IMRT, twice with IORT during surgery, and my last time was with Proton therapy, totaling over 200Gy to the same area, which is more than any of my doctors know of.

As far as recurrence rate, it seems to be on par with some non HPV head and neck cancer, but many factors can be involved, type of cancer, and stats may be outdated, and as one ENT said, "We don't have a crystal ball." As someone who has had 7 recurrences in four years, I try not to think much of recurrences, at least now the further I'm out from treatment, but surgery is often the preferred treatment with recurrences, which I did twice alone, and others minus or plus radiation, possibly with chemo, but I do think I may have reached my own radiation limit, at least in specific areas, which resulted structures removed, like carotid, veins, nerves, and side effects, which may seem unacceptable, like arm paralysis, muscle atrophy, neuropathy, due to the brachial plexus radiation exposure, but I've been through worse.

Best I can say is to enjoy yourself, exercise, eat healthy, maintain a healthy weight, avoid infections to maintain healthy immune system, have adequate sleep, no smoking, limit or no alcohol, do self monitoring, educate yourself to this disease, and see your doctors as scheduled for follow-up, exams, and scans.

I hope this helps.

Both PaulB and ChrsitineB are very knowledgeable and have given you good information. I would only add that you might want to try telling yourself that you will cross that bridge when you get to it. Chances are you may not even see the bridge or it turns out to be another bridge. In the meantime, the best thing you can do is to live for the here and now. If you are having difficulty coping with the anxiety, you may want to find out if you could access the services of a therapist at your hospital.

THANK YOU all so much. I am very grateful for the information, perspectives and links (Christine). I had just found a very comfortable, peaceful place and this news really disturbed that peace. You are all so right. What if's and bridges that don't need to yet be crossed need to be left somewhere in the future. I have always been a "take charge" and "be prepared" person who wants to know what to expect and start to mentally prepare for it "in case", but this is just NOT what I need right now. Not mentally or physically either. I feel like my RO is so vague and he really never gives me the whole picture. I know this is likely for my own good, and to help me get through the treatments. I need to stop pressing for information and rest in today. Right now, I am ok. I am 20 treatments in to my 30 RADs and I am ok. I am very lucky to have low grade MEC and I am likely to have many more years. You all really did make a big difference in my mental perspective today and I so appreciate you taking the time to reply to my post.