My Husband Business owner father of 13 year old twins. 8 years out, we caught the cancer early. Standard protocal 7000rds agressive radiation and chemo. Feb 5 2011 major sroke right coratidarty 100% ocluded colapsed left 80% cant do surgery, parlized,unable to comunicate,unable to restore any blood flow. My anger is that no one with all of the data regarding radiation induced coratid artey disease said anything. in fact they play it down because it is IMRT. All of the after treatment scans that no one cought the problem. No one created a follow up to check. IT IS A HUGE RISK EVEN WITH IMRT. Cured of cancer to die from the treatment is not ok it. could have been prevented by early intervention or even being informed

I'm sorry - you must be horrified!! Strokes can be caused by imrt - but I think it's a combination of things - diet as well. No doubt the imrt caused some hardening, hugs to you sorry you're going through this!

Your doctors certainly let you down here. That radiation causes scar tissue to build in the carotids for years after treatment is not new news. In my own case I will soon be stented as the stenosis has gotten so bad that it interferes with my daily life. There were lots of warning signs for me, even without my oncology doctors ever talking about it that drove me to a cardiologist. Dizziness when getting up from laying down for instance. I'm not looking forward to the procedure, I know a little too much about the issues with stents. But I have no choices in this.

The radiation does more that change the elasticity of the arteries, it forms scar tissue inside them which narrows the blood flow (stenosis). If you think of how it forms scar tissue in the major muscles of the mouth causing trismus, you get the idea.

I'm sorry that this has happened to your family. Were there no troubling symptoms before things got this bad? Earlier this month I put a story in the OCF news feed about this which can be read at the link below. The issue for treatment centers is poor patient follow up, and poor information dissemination - even if it is given at the time of discharge - for something that may happen years down the road.

http://oralcancernews.org/wp/stroke-and-tia-risk-doubled-by-radiotherapy-study-finds/

WOW, i never knew that this was a side-effect of rads. Brian, I am having those same problems with being dizzy upon standing from a lying position. I have also have had bouts of my heart racing for no apparent reason. Is that something I should get checked out?

Definitely. Get an ultrasound of your carotid arteries. Get a stress echo test in a cardiologists office. The earlier you know about these things the easier it is to deal with them. I had no issues through year 8, then things started to get worse, and have continued to. I have delayed as much as I can. Time to go under the knife. Freakin' me out.

Brian, I too have the same fear for my father as he is being re-radiated (first time 59.3 Gy and this time unilaterally 60 Gy). I asked the RO about the carotid artery and risks (as I had already read about stroke and rupture) as cancer had invaded carotid sheath. He played it down saying that radiotherapy will be within the tolerance limit. Probably he must have considered the risk vs. survival benefit.

Can you please educate us about the symptoms?

There is always a trade off Eshwar. No one would ever believe that radiation in the kinds of doses we allow to our bodies to be exposed to in our effort to survive is good for us, or come without accompanying collateral damage. That is a given. The question that I have grown to accept the answer to, is that since it is not without consequences, what were my choices? Few to none. To let a cancer prosper to the point of causing my death, or throwing everything in the armmamentarium at it to stay alive at that point in time, leaving thoughts of the future, to the future.

To use a military analogy; a frontal assault may win the day, but you are going to pay dearly for it. It is a tactic of last resort. And it does not mean that after your successful assault you will hold that piece of turf that you fought for indefinitely. But those subsequent battles would not even be in your playbook if you didn't win the first battle. When you use nuclear weapons, you do so with the knowledge that this is serious s**t. Holding the hill is a series of block and defend maneuvers, and are only successful based on what assets you have left in your gear bag. And they occur while you are wounded to boot.

So I took my best shot, which I believe was the logical choice. I knew I wasn't going to be normal ever again, and I knew that the consequences of a nuclear approach (in cancer or in combat) has LOTS of long term negative consequences. But I got the chance to fight those subsequent battles another day, though each time a little more diminished by the effort, until finally something really bad comes along again. For me, that day of reckoning has been coming for some time. There have been more than a few skirmishes since the initial battle. I've used most of my assets to fight them, and am weaker and older now as a result. So this is going to be a tough one. But what other choices would a logical mind make back at day one?

I bought more than a decade if things go south. I am not sorry that I took the path I did. Your doctor and your father have come to similar conclusions - fight the fight that you have today, with what you have to fight with�. tomorrow will come soon enough. Cancer is an enemy that is never fully vanquished. And those enemies that it brings with it, continue their assaults even if you beat the Big C itself. This is the nature of our lives, whether as cancer patients and survivors, or just travelers on the human journey. Duck and parry, -strike, and advance- duck, and parry again, (repeat ad nauseum) until the final bell rings.

Thanks Brian. I agree with you. Cancer leaves very few to no choices and at some stage a lot of people are left at mercy of experiments or trials so that their life can help improve prognosis for somebody else.

Once my dad's cancer was diagnosed, irrespective of best of treatment, I always knew that he would never be cured, he'll be just cancer-free for rest of his life. Infact, my dad was bold enough to admit in front of his doctor that he got 2 years' extension the first time and hoping to get more when his recurrence was detected. 2 years back, I was naive but since then there's hasn't been a day that I had not spent reading about something about cancer and fighting it back.

Brian, what is stenosis?

Cathi

Cathi, Stenosis is narrowing in a vascular (blood vessel, arteries) or tubular structures (billary or gastric tract). Depending on affected structure, you have various symptoms, like Angina is with coronary artery stenosis, Stroke is usually Carotid Artery (carries blood to brain and face).

Angiogram or Ultrasound is typically used to assess the situation.

Eshwar is right, it is a narrowing of the vessel. It isn't a sudden thing but happens over time. In people that just have bad health habits (don't exercise or eat right) two things happen; one is their arteries lose the elasticity (atherosclerosis) and the other is the become narrower when clogged with fatty deposits, plaques and calculus (stenosis). All this makes blood flow poorer and eventually, if they become narrow enough, the symptomology becomes something that you cannot ignore.

In radiated patients, it can be a combination of scar tissue forming in the artery from the radiation, narrowing it, and if they also came into cancer treatments with a poor diet etc. the plaques in addition to. Radiation itself causes atherosclerosis, so you get a double whammy.

Strokes happen when part of the deposits break off and travel downstream until they reach a blood vessel too small for them to pass through, and that's where the blood flow stops. Everything past that dies in very short order, and you have about 3 hours to introduce clot busting drugs to even hope for life to go back to something normal. They of course can be fatal. You can also have a stroke from a thrown blood clot, which often happens in people that have a bad heart valve, or damaged arterial wall. Depending on where the clot or plaque stops, things can get really dire quickly or not. Obviously in your brain, upstream from a carotid issue is a bad thing. Downstream from the heart to the femoral artery and leg is another thing.

My dad had a bad valve which threw a clot and he came home one day from walking the dog limping and rubbing his numb leg. He had no idea what had happened, until I called 911 and told them my dad had a stroke. He thought I was nuts and that it was a pinched nerve. After that was resolved, 9 months later he threw another clot which went to his brain and he lost his ability to talk, reason, and so much more. Days later he had a massive MI and that was that. Men in my family do not live past their early 70's going back for generations, and all die from the same thing. This is one of those nature and nurture things. Knowing all this I have been pretty careful about my health during my adult life. But even when you are doing everything possible, and armed with lots of knowledge, you can't change your genetic make up. But I never calculated that I would end up with an 80+% carotid stenosis a decade early� from radiation, not genetics.

In terms of radiation damage, is there anything to be done to get ahead of something like this? I am just finishing up IMRT for laryngeal SCC and if I can start a particular therapy now to get on top of this kind of damage I would love to know more about what could be done. Should I raise this issue with my RO/MO before I'm done?

Eshwar, thanks for the info! Does this have anything to do with lymphadema?

Cathi

Hi Cathi, lymphadema is lymphatic obstruction - a condition of localized fluid retention and tissue swelling. In context of cancer, it seen after lymph node dissection, surgery and/or radiation therapy, in which damage to the lymphatic system is caused during the treatment. In case you are facing any symptoms like painful or severe facial swelling or difficulty in breathing, you need to get in touch with your physician. Probably he'll refer you to certified lymphedema therapist depending on your case.

To hopefully alleviate Brian's concerns about the stent ... my riding instructor is in his mid sixties (although not a cancer survivor) and underwent a triple bypass (much more exciting than a stent). Today he is back to riding 6-8 horses a day, and can casually toss about 70# hay bales.

Brian, first off I wish you well. More than well. I hadn't known about this issue until I read the piece here on the site. Interesting that none of my doctors brought it up. Or maybe my RO did in the beginning and I was still too numb from the you have cancer news to digest it properly.

I'm seeing my regular doctor Friday and will certainly ask him about this. Like you and some of the others I have occasional bouts of dizziness when standing up. I'd assumed it was because I'm still underweight and also fairly tall, and have always had low blood pressure. Now I'm wondering if carotid stenosis is playing into it.

Thanks for the well-written analogy, and in general for all that you do for us.

Glad I found this discussion. Hubbie is going in for more radiation 6 months after his last treatment. This time the Doctor feels he removed all the cancer after his radical neck dissection but would like to clean up any microscopic cells with the cyber knif. There is a 10 to 15% chance his carotid artery could rupture. I have been so nervous of this situation. He has been feeling real dizzy after sitting and then standing. I almost want to stay very close to the hospital for a while when he is going through this just incase there is an emergency.

Hi lady 22 - make sure the dr is aware of the dizziness! And good luck!