| Joined: Aug 2011 Posts: 1 Member | OP Member Joined: Aug 2011 Posts: 1 | 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
Lisa
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | 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!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | 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/
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | 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?
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | 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, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | 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? Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | 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.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | 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. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Feb 2010 Posts: 79 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2010 Posts: 79 | Brian, what is stenosis?
Cathi
57 when diagnosed. Heavy smoker. Social drinker. Diagnosed 7/9/09 with tonsil, tongue & neck cancer. Chemo induction (Cisplatin, 5FU & Taxotere) & 35 radiation tx + 7 Carboplatin. Head and neck CAT scan on 1/15/10 shows no cancer. 1/27/12 First PET/CAT scans in 2 years - All clear!! recurrence mid-2015 OCF supporter and avid OCF CO and NJ walk attendee with worldwide friends
*** 1-7-16 passed away unexpectedly ***
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | 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. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
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