My cancer has returned (again) with a growing nodule under my chin and one on my right collar bone.
I've now had 3 nodules removed on my right side since my major surgery last year and in a couple of weeks I'm having another neck dissection (this time on the right side),and radiotherapy in the new year.
My Oncologist tells me that due to the position of the reoccurrence under my chin the radiotherapy will involve some cross-over area of treatment from my previous radiotherapy (left neck/cheek area) in the autumn of 2011.This, he says, could cause severe side effects whereby the cells/tissue could 'die'or/and an artery could 'explode' ultimately leading to me having a hole or holes in my neck,anything upto 12 months after the treatment has finished.He brought up the figure of a 5% chance of this happening, but also said some severe side effects are up to 20%.
Last winter I lived through all of the fatigue,intermittant sleep,inability to swallow,mouth/throat mucus etc etc and knew I'd have to go through that all again. . . but I wasn't expecting this.
Wondered if anyone has any insight into the odds concerned,or indeed the side effects mentioned.

Brendan, Im very sorry to learn of your recurrence!!!

Ive had oral cancer 3 times but have only gone thru radiation once. My second and third bouts were surgically treated. There are some members here who have done rads more than once. Just recently Charm completed his third round of radiation. It can be done but I do not know the stats. I do know doctors hesitate doing rads when its less than a year apart from the first round. I avoid the numbers as I know Im living on borrowed time so I dont want to know any odds of survival as I know I shouldnt be alive today.

Im sure Charm will be able to give you some insight as to what the risks vs benefits would be. I would think the benefits outweigh the risks as it will save your life. Please consider having a second opinion at a top rated cancer treatment center. Give yourself the very best fighting chance by seeking out the best of the best.

Wishing you good luck with everything!!!

There are several (including myself) who have had rx more than once, and I hope they chime in as well. I had radiation twice 2nd time using IMRT tx which is very precise, I don't think there were any crossover areas for me. I know I was never warned about potential consequences the way you have been. Try looking at it this way - there is a 95% chance that you will not have any life threatening side effects, and an 80% chance that you will not have major side effects.

While I believe the 95% figure, I think the odds of serious side effects are more like 50%. I have had continued ongoing fatigue since the 2nd radiation. I deal with it. Some days it is debilitating, some days not. Swallowing continues to get more difficult as time goes on but I have yet to lose any weight - so all good there. Strengthen your throat muscles as much as possible with eating and swallowing exercises. The mucus will probably get worse too - buy a water pik which cleans your mouth out and you feel fresh as new. things like mouth sores will clear up in time - but the odds of you getting mouth sores will always be higher.

So yes, there are many ongoing radiation side effects that you can reasonably expect. But, I am here, and I am prepared to put up with them. These are my "new normal", and I am glad you are looking for a realistic view of the future.

I don't think your physicians would undertake this round of radiation if they believed that the life threatening side effects were any more than 5% so be confident in that.

There are several of us who have had radiation more than once, so I'm sure you will hear from them as well.

Hugs

Donna

Brendan

When I joined OCF, the majority of posters were told by their radiologists that they could not have radiation twice because of the probability of what your radiologist warned: necrosis and or carotid artery damage. It turns out that you can have radiation multiple times, the key is to avoid as much "cross over" into the former radiation areas. That usually requires a more precise means of radiation delivery than the first way. In my case, the radiologist switched from standard IMRT to CyberKnife (a form of SRT).
It would not hurt to ask your radiologist if there is a version of CyberKnife or SRT available in your area. That way the amount of "cross over" can be limited easier than using IMRT a second time.
Still, the numbers sounded pretty good to me: 95% chance of success - I've never had any oncologist give me more than a 50% chance. Maybe there is not too much crossover
Charm

Hi - I think Brendan meant a 95% chance of him not having an exploding artery, fistula etc... Brendan I know they're doing a neck dissection are the removing the nodules as well? Hopefully. And hopefully they are moving on this ASAP! As for the crossover. I wasn't having a second round but id started rads by a few days and then the rads guy looked at my ct and noted a small 3 mm node highlighted on the opposite side so he rewrote my plan to include that side so I had bilateral rads right out of the gate. He said there would be more severity of fallout from the increased area. But things are okay now. I do think you may have increased tightening of the crossover area and the other problems may possibly occurr, so plan for the worst hope hope for the best. Stay active, and eat super healthy. HIGH PROTEIN... And not all of it from meat. Hugs... Sorry about the recurrence but you can and will get through it. I mentioned in another post theres a woman who's had like 5 rounds of rads, and she's still okay. Because medicine has refined their rads techniques - it's possible. And tell your dr to get it all this time dammit! They're giving you chemo again too rights? Ask for maybe a combo of Erbitux and cisplatin.

I have had rads three times. One round of IMRT to my soft palet then two years later another round of IMRT to my neck after the discovery of a cancerous lymph node in my neck that had grown around my carotid artery. They gave me the same warning regarding a blowout but put my odds at 2% of that occurring.

The second round of IMRT did not have much crossover as the first round higher up but it did not get all the cancer. They told me at that time I WAS TERMINAL. I got a second opinion regarding the option of Cyberknife (just like Charm).

I did the Cyberknife to the same location as the second IMRT 5 months out. That looks to have gotten the rest of the cancer but I do now have issues with necrosis in the soft palet and throat. I am battling that now. I may need a reconstruction in that area if the necrosis does not stop (at this time it is receding very slowly). I am still in some pain and am constantly battling a sore throat. I make due as the only other option would have had me on my death bed around now. I get another PET scan on the 3rd of December to see if the last radiation was completely effective. I had one at two months that was clear but this one will show if any microscopic disease was missed and is now big enough to detect.

I am still battling fatigue but am able to work part time and enjoy time with my family. I can travel and get out often so all is not lost. I am still counting my blessings and thumbing my nose at the three doctors who told me I was terminal over the past year.

God bless Kelly - you are a trooper!

Brendan
Even as an ex rugby player I am sure you know the courage you need to go at this treatment again and I wish you all the best. As an irish decendant percentages must be taken with a pinch of salt, when my doctor told me the treatment was 70% sucessful I could only think I often back a horse at outside odds. The NHS have been great for me but take a leaf out the Americans book and be strong enough to ask for options and the other types of procedures available. beyond that build youself up and go into this as stong and positive keeping the main goal of contiuing to enjoy life for many years as a focus.

I had radiation 3 times on the same side of the left neck for 5 recurrences. First round was 35 IMRT with 60-70 Grays. 75 grays is usually the max due to unacceptable tissue failure, at least in the H&N, and salivary glands with with even less. There are ways they increase dosage with less toxicity with split sessions, accelerated dosage, etc. The 2nd radiation I had was done during surgery for a neck dissection with the neck open (3rd time) using HD-IORT...high dose Intraoperative Radiation Treatment, which is also external beam radiation at 15Grays. Anything above 20 Grays with IORTwas found to have to have too high of a failure rates, including death. A pectoral flap was then done during surgery, after radiation, to protect the neck, especially the carotid artery, to assist in healing, and In order to do IMRT again after healing with new tissue protecting the neck. The RO who did the surgery with the ENT, said this was the safest way to do radiation again, and my only chance to survive after my recurrences. I started IMRT in October for 5 weeks, 25 daily sessions, with a total of 50 Grays.

In all, I had 135 Grays, which is almost double the max usually given, so there are ways to do radiation again, like I did, and the way others mentioned.

After my 3rd and 4th recurrence, my original RO did not want to do any radiation after surgery, no chemo either, saying I already received the max 70gy and it
was too risky to do more, saying, "Radiation can always be done, but once given, you can't take it back." Only after the 5th Cancer is when they agreed to do it again, but I did not like the risks involved, and sought out the treatment described above, which reduced the risk, and increased my odds for survival.

You are about right with the percentages, and it's a real concern when it's happening to you, so look into everything you can.

With all the chemo, radiation, surgeries I still eat by mouth, and mostly everything, except spices. I did lose my taste, and have difficulty swallowing due to just completing treatment this past Monday, but expect to get that back.

Good luck with everything.

Informed yesterday that the large tumour removed from under my chin was 1mm from my voice box. This complicates my radiotherapy earmarked for mid-January onwards, so I'm having to return for another assessment early in the New Year whilst my new Oncologist considers the options.
In Autumn 2011, had 60 Grays radiation on the left side, and have been told that this dosage will probably be the same again on my right side. 2 Grays a day for 6 weeks with about an inch or so crossover point in the middle. This will also be IMRT,as opposed to conventional RT which I had last time.
Told the big risks re. the crossover area will be necrosis, carotid artery blow out, damage to spine and/or voice box and these are estimated at 10%. Also, informed that the large skin flap inserted under my chin should not be any more susceptible to radiotherapy than any other tissue never exposed before. However, scar lines around this flap adjoining previously treated skin will be more at risk.
When pressed , and I was the one looking for the %s, told that the success benefit compared to no treatment was probably 40 to 50%.
Knowing what I went through last time is not particularly reassuring - but I don't have much option.