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#201027 11-02-2021 06:15 PM
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Greetings,

I'm 4 years post-treatment for an HPV-16 tumour that settled in my left tonsil cavity. I asked my Oncologist what the potential effects of the radiation exposure I received might be for my left carotid artery. He indicated that I am at greater risk for heart attack & stroke due to the effects of radiation on my carotid artery. I discussed this with my Physician and asked if an ultrasound of my carotid arteries would be in order and she agreed.

The result: 50% - 70% occlusion in my left carotid artery, while the right side proved normal.

She is now consulting with a cardiologist to determine a course of action for this problem.

Has anyone else experienced such an issue? It made sense to me the tissues directly and in-directly influenced by this energy would be adversely affected.

I'm a bit puzzled as to why I was not alerted by a medical professional as to this potential issue, as it seems to me a proactive approach would be beneficial.

Regards,
Dan


Stage 3 HPV-16 Tonsilar Tumour with extension to 1 lymph node
Currently prepping for Treatment, which is starting Sept. 5th 2017
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I had a stent placed in my Right Carotid about 4 years after Radiation. I continue with ultrasounds every year to make sure we don't have any more damage. 15 years post treatment now! i was lucky my team at MDACC found the damage at one of my yearly check ups.

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Hi Mentn34,

Thanks for your input on this issue.

Tell me - what other negative consequences from radiation therapy have you experienced?

For me:

> Aged skin appearance on the affected side
> Plaque buildup in the affected carotid artery
> Weakness in the splenius capitis muscle of the posterior neck ( suffer terrible spasms after prolonged contraction of the muscle - usually during scuba diving )
> difficulty swallowing dense foods
> concern about the effects of radiation treatment on the thyroid gland

Regards,
Dan


Stage 3 HPV-16 Tonsilar Tumour with extension to 1 lymph node
Currently prepping for Treatment, which is starting Sept. 5th 2017
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Dan,

My thyroid issues occurred around year 5 as well I went to the doctor complaining of being tired easily and taking naps which was out of character he order the Thyroid test and bingo that was the issue it took a couple to months to get the medicine to the right level but he got me back to myself with one pill a day. I have had to increase the dosage twice since then. If they do put you on thyroid medicine it is highly recommended you take it first thing in the morning and not eat for apx 30 minutes. (Game Changer) I also have terrible spasms from the base of my skull down my neck and across my shoulder scared me to death first time it happened. I seem to notic3 them the most when the weather is changing a friend brought me some cream for a medically legal state thc it instantly relieves the spasm I have no idea why but it does I just dont always have it with me when it strikes.Radiation causes some discomfort and medical issues but without it we probably wouldnt be around to talk about it. Back to the carotid. my vascular surgeon would not operate until blockage was at 70% so it was a waiting game for a couple of years. I highly recommend you find a surgeon with experience with radiated tissue it took me several calls to find that. I received a stent is was one of the easiest procedures ive ever had I was awake the whole time and watch the procedure on the screen the Doctor was using.

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Thank you kindly for sharing all that information, I greatly appreciate it.

Continued good health to you!

Regards,
Dan


Stage 3 HPV-16 Tonsilar Tumour with extension to 1 lymph node
Currently prepping for Treatment, which is starting Sept. 5th 2017
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Hi
I’m 10 years out of treatment. Left neck dissection and 7 weeks of radiation ☢️ ( the gift that keeps giving). Last year had a stroke due to radiation damage to the carotid artery. 85% blocked. Survived the stroke had surgery to fix the plaque build up . Went for a scan last week and now it’s blocked up 100% due to a blood clot!!!! Not dead yet🤣 Here’s my question. Can they go in and” stent” the blocked area now???? Surgeon said “just live with it” should have gone to Boston!!! And question 2 is was the long term problems with a blocked artery??? Thanks

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I’m hoping mentn34 will see this thread and come back to post since he has direct experience. I can offer some ideas but while I have about 70% occlusion, and it is causing some lightheadedness, I’ve had no treatments other than routine monitoring of it by ultrasound.

Your situation is different if they are sure this is a clot issue. Thickening and radiation damage to the carotid arteries is pretty common as a long-term complication from radiation treatment. Stenting has been routinely done, and I talked to a couple patients that have had vascular autogenous grafts of blood vessels from elsewhere being moved there successfully. But the idea of living with a clot seems counterintuitive, especially given your history, and I think it would be worth getting a second opinion from another vascular surgeon with experience in radiated patients soon. There are some quality people in the Boston area and I think it would be worth the trip once you identify the right person. If we don’t get a poster with more experience in the next couple days answering you, I will reach out to one in our science board for his ideas and report back. B


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.
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Thanks

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You are welcome, though I don’t think I was much help. I did have a conversation with a head and neck surgeon this morning about something else. I asked him about this. He said that while he does some vascular work as the nature of his profession, it’s not a specialty for him, further that things that involve the carotids specifically require someone that is specialized in this. That he doesn’t do stenting even though it is pretty straight forward, as his institution has vascular specialist staff.

He had a question though, and that was how did they determine it was a clot, and if it was one, how did they decide that it was stable and going to stay put, making it ok to live with it. Those seem like really good questions given a stroke in your history. I hope that you will pursue this sooner rather than later to get some answers and resolution to this. I find your doctors advice to be at the very least cavalier. Please come back and tell us what you have learned. I would like to learn from your experience myself, given my own situation, and in order to help others. B


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.
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Will do Brian. Thanks I’ll be in touch.

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Greetings,

Thank you, Brian, for contributing to this thread.

I am currently waiting for yet another ultrasound appointment, ordered by the vascular surgeon my personal physician referred me to ( I guess the recent ultrasound I had of my affected carotid artery wasn't suitable?? ). In any event, I plan to consult with this surgeon and, in-part, attempt to ascertain his experience ( if any ), in working on radiation-damaged arteries.

I spoke with my Oncologist about this issue of carotid artery damage / occlusion from radiation treatment and was somewhat taken aback by his thoughts. First off, he seemed to be mostly unaware of this type of problem and spoke of other reasons causing the build-up, even had reasons why the unaffected carotid artery was 'clear.' After some discussion, he asked that the consulting Surgeon's office send him a copy of the report of his evaluation. He further said he could arrange for me to consult with the vascular surgical team at Princess Margaret Cancer Hospital, if I was interested.

I most certainly am!

Living here in Southern Ontario, I'm concerned about finding a surgeon experienced in dealing with irradiated, damaged arterial tissue. Princess Margaret is a top-notch cancer centre, thus I'm hoping the surgeons there will have the experience I seek.

Thanks to everyone who is contributing their knowledge and experiences here.


Stage 3 HPV-16 Tonsilar Tumour with extension to 1 lymph node
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Princess Margaret is a first class institution. You will get your answers there. And they have a staff that can deal with whatever the issue ultimately is.

I am a bit appalled that your doctor was unaware that carotid artery damage is one of the most common adverse events related to head and neck radiation. It can be damaged in numerous ways. He’s only thinking about how it becomes occluded in normal people. Of course that is primarily through the crappy diets that must people have combined with their sedentary lifestyles. That build up fatty plaque in the artery and long-term creates calcified deposits. Radiation has little to do with those kinds of fat accumulations. It can cause a completely different menu of problems. His myopic perspective is a good reason to go elsewhere.

I’m pretty confident that good doctors would not leave a clot in there that has the potential to move. And if it was a clot they would be thinking if safe ways to get rid of it.

I’m so glad you are being proactive and going to PM. Please post back when you have an update. Wishing you the best. B

Last edited by Brian Hill; 02-02-2022 08:15 PM.

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.
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Hello and thank you for sharing your experiences. Today I was diagnosed with bulky calcified atheroma in the carotid arteries on both my right and left sides. The docs are presuming it is because of the Radiation Fibrosis and Cachexia.

Sorry there isn’t much else I can say now, I’m still trying to process this diagnosis.


Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
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It doesn’t surprise me. I’ve been around the block and back. I’ve lived way longer than any doctor predicted. I’ve come to understand that most cancer doctors are so wrapped up in the healing they give that they can’t process the damage they do.

I’m not criticizing them but just saying that their mentality suppresses the known damage the treatments cause and they focus on the good it does instead —a denial on their part. Thanks to them though I’m still alive.


Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
Joined: Feb 2012
Posts: 32
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I’m wondering how you made out. Hope you’re OK. Experiencing similar issues.


Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
Joined: Feb 2012
Posts: 32
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Brian:

Just an insight into what is supposed to be the best Cancer Center in Rhode Island (and New England), since my original post detailing the Carotid Artery Disease, I have had 3 follow up appointments with my Surgical Oncologist and today they called and canceled today’s appointment.

They have canceled all appointments and I have not been seen to date.


Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
Joined: Feb 2012
Posts: 32
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I had typed a detailed reply however in my stupidity I accidentally deleted it.

What I would like to say is that I have seen my PCP today after my Surgical Oncologist had canceled my last 3 appointments.

The significance is that I would have expected a better understanding of my condition however my PCP surprised me by sharing his knowledge of radiation damage to the Carotid Arteries.

He has indeed decided to treat this as any other arterial sclerosis. I’m not sure if I am comfortable with that. I have bleeding issues and he has ordered blood thinners. I have read that this isn’t the correct way to approach this situation. He has also indicated that he is concerned that I have blockages in other areas.

I have read a considerable amount of medical journals suggesting this is not the correct approach.

I should add that I have had considerable difficulty breathing lately. My body temperature bounces around as much as my blood pressure, although he didn’t seem concerned about that.

I have read that the temperature issue may be caused by insufficient oxygen delivery to my hypothalamus and the memory impairment I’ve been experiencing is also caused by insufficient blood flow.

I don’t know what to think.


Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
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I don’t mean to interject my thoughts into your conversation however I just wanted to say that I experienced the same thyroid failure 7 years post treatment. I had no idea that my swollen belly, exhaustion and intolerance to cold were due to hypothyroidism.

When it was diagnosed I went through several medications and dosages until it was under control.

I found I was allergic to something in the generics but could take Synthroid.

It is crucial that you take this medication as directed. I awake around 4:00 am daily and swallow it with a glass of water. Then I go back to sleep.

It took quite some time for me to adapt to this schedule, but once you do, you will feel way better.


Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
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17 years 3 months post treatment.

Zero thyroid.

Both carotid artery’s shot. R is 100% gone. L was 5% remaining.

Found the best surgeon for this in the world - he restored 100% on L.

Now. Massive dental decay and disease.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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If you’re on the right dose there’s no need to be so regimented. It’s absorption rate is very long and waking to take it at 4am is not even remotely needed in my experience.

Sleep hygiene is 10x more important.

I take my levothyroxine in the mornings but miss at least 4 does a month and often take it with my full breakfast. Sometimes not.

Never after 3-4 pm since it can keep you up.

Hope this helps.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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Can you get a 2nd and or 3rd opinion from a world class doctor who specializes in this field. Who is your insurance. Where do you live?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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I'm the same. I take mine when I first get up each day which is similar times but not regimented. So the first thing could vary by an hour or two. The important thing is to take it on an empty stomach and not with food, which will counteract its effectiveness. Thirty minutes before eating will give it time to get into your system. This is all important because as a hormone, it is impacting many things your body will do throughout the day. keeping it at a stable level is the key.


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.
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Greetings & Happy New Year,

My apologies for taking this long to update, but here it is...

My 2nd ultrasound ( a much longer session, using seemingly more sophisticated equipment ), was required by the vascular surgeon I consulted.

He said my L CA was <50% occluded, however, farther downstream, where the artery bifurcates and a smaller artery branches off to feed the face, there was > 50% occlusion showing in the smaller artery. He wasn't too concerned with the plaque buildup there.

He recommended I get scanned annually going forward and that I will do.

No other issues thus far.

Regards,
Dan


Stage 3 HPV-16 Tonsilar Tumour with extension to 1 lymph node
Currently prepping for Treatment, which is starting Sept. 5th 2017
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