Scared to death

Eddieboy

I was diagnosed with throat cancer 3 months ago.. treatment was supposed to be 33 radiation treatment and chemotherapy. I had the mask made but due to my aniexty and claustrophobia which I didn't even know I had an issue with I freaked out once they put me on the radiation table..they not only locked my head in place but also restrained my wrists and feet together with one strap...I've watched a lot of videos online and it doesn't appear other people were restrained in this manner..I was scared to death and opted out of radiation treatment..so my question is has this type of restraint been used on anyone else? Anxiety pills were useless and they refuse to sedate me..i started chemo and they said after the chemotherapy then i can try the radiation again..i just dont get why they cant sedate me for these treatments. Also has anyone only done chemotherapy without radiation and made it to remition?

LorettaMarshall

Eddie~"Be a HERO!"

Hello Eddie

First, I'm sorry to hear of your throat cancer diagnosis.  Secondly, I'm sorry that you find yourself so claustrophobic.  That is to your disadvantage.  Clinical trials for Esophageal Cancer patients have shown the tri-modal approach to be the most successful in trying to achieve success.  That regimen includes hopefully neoadjuvant (pre-op) chemotherapy and radiation and then surgery to remove the cancerous Esophagus.  It is a 3-pronged attack mode. 

Don't know what videos online you've been watching--BUT--it is NOT unusual to be "constrained" by straps when having radiation.  This is to ensure no body movement because the radiation is “aimed” at a particular spot.  When I had targeted radiation for tumors on the Caudate Lobe of my Liver, I was placed in sort of a body mold with weighted pads over my body.  Sessions were at least an hour in that position.  I had "no" sedation, but was so thankful that I was a candidate for the radiation.  It totally eradicated 3 cancerous tumors.  I was very thankful when I saw the bill for those sessions and my insurance policy paid for them in totality.  I’ve paid more for premiums but all that I could ever pay in premiums wouldn’t amount to one bill which I saw for $343,000. 

 Bottom line--do what you have to do to obtain the best possible outcome.  We here, always recommend having a SECOND opinion at a major hospital where your type of cancer is one of their specialties.  If all your doctors have recommended radiation plus chemotherapy for the best possible outcome, then the decision as to whether to “aim for the top” or settle for “partial success” seems to be in your hands. 

 Do you have a good friend that can talk you through your fears?  When possible, it’s good to talk to someone who has actually been diagnosed with cancer, because they have truly walked where you find yourself now.  I doubt you will find anyone here on the Esophageal Cancer site that hasn't had both radiation and chemotherapy. 

My husband had 25 consecutive radiation treatments plus chemotherapy as part of his prescribed regimen.   It's part of the "package" deal to shrink/eradicate the cancer. 

 So try to concentrate on the "end result" and try again to "get back on the table".  It is for your good.  My husband, nor I, had any kind of sedation.  But from the very start, it was "what the doctor ordered" and we were determined to "endure the ordeal" because we knew that was the best approach to attack the cancer.  Taking the “long look” will help you to endure the “short term” treatment.  If we women can “bite the bullet”, so can you I do believe.  Adjusting my “mental attitude” prior to the treatments works wonders.  I do a lot of praying and thanking God that I live in a country that has hospitals equipped to treat us cancer patients.  Even though I am a terminal Ovarian Cancer patient (Stage IV), I would never have survived this long without the radiation. 

 What’s the old saying, “No pain—no gain”?  I think it certainly applies to chemo and radiation treatments.  Few people have smooth sailing.   We’ve suffered a lot!  It’s only when you finally get through it and tests show that it has been effective that you breathe a sigh of relief.  There are “no shortcuts!” 

 My latest appointment with my kidney specialist was positive.  During the visit we were having a conversation about cancer and how different people approached it.  We talked about my diagnosis and my survival since November of 2012.  I should have died very early on!  He said to me,  “I told my daughter.  You have two people inside of you.  One is a COWARD—the other is a HERO!  He then said to me, “Take a bow.  You are a HERO!” 

 Okay Eddie-here’s hoping you can summon the inner strength to overcome that crippling fear.  “BE A HERO!”

 Loretta (Stage IV Ovarian Cancer) and wife of William.  We have just celebrated his 15^th year of cancer-free survival of Esophageal Cancer.  He underwent a Minimally Invasive Esophagectomy (MIE) performed by Dr. James D. Luketich at the University of Pittsburgh Medical Center on May 17, 2003. 

_______________________________________________ 

 1.      http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

“MAYO CLINIC SAYS GET A SECOND OPINION – FIRST ONES ARE FREQUENTLY WRONG

By Melissa Turtinen - April 4, 2017 12:17 pm

The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.

The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”

The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:

       Only 12 percent of patients left the Mayo Clinic with the same diagnosis.

       In 21 percent of cases, the diagnosis was changed completely.

       In 66 percent of patients, their diagnosis was refined or redefined.

“Effective and efficient treatment depends on the right diagnosis,” Dr.  James Naessens said in the release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling – not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”

A lot of people don’t consider getting a second opinion because they either don’t know that’s something you can do, or because it can be expensive for people to see another doctor who may not be in their health insurance’s network, the Mayo Clinic says.

“Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly,” Naessens said…”

__________________________________________________ 

2.     https://www.mayoclinic.org/diseases-conditions/throat-cancer/diagnosis-treatment/drc-20366496

“…Treatment

Your treatment options are based on many factors, such as the location and stage of your throat cancer, the type of cells involved, your overall health, and your personal preferences. Discuss the benefits and risks of each of your options with your doctor. Together you can determine what treatments will be most appropriate for you.(

Radiation therapy

Radiation therapy uses high-energy beams from sources such as X-rays and protons to deliver radiation to the cancer cells, causing them to die.

Radiation therapy can come from a large machine outside your body (external beam radiation), or radiation therapy can come from small radioactive seeds and wires that can be placed inside your body, near your cancer (brachytherapy).

For early-stage throat cancers, radiation therapy may be the only treatment necessary. For more-advanced throat cancers, radiation therapy may be combined with chemotherapy or surgery. In very advanced throat cancers, radiation therapy may be used to reduce signs and symptoms and make you more comfortable.

Surgery

The types of surgical procedures you may consider to treat your throat cancer depend on the location and stage of your cancer. Options may include:

• Surgery for early-stage throat cancer. Throat cancer that is confined to the surface of the throat or the vocal cords may be treated surgically using endoscopy. Your doctor may insert a hollow endoscope into your throat or voice box and then pass special surgical tools or a laser through the scope. Using these tools, your doctor can scrape off, cut out or, in the case of the laser, vaporize very superficial cancers.
• Surgery to remove all or part of the voice box (laryngectomy). For smaller tumors, your doctor may remove the part of your voice box that is affected by cancer, leaving as much of the voice box as possible. Your doctor may be able to preserve your ability to speak and breathe normally.

For larger, more-extensive tumors, it may be necessary to remove your entire voice box. Your windpipe is then attached to a hole (stoma) in your throat to allow you to breathe (tracheotomy). If your entire larynx is removed, you have several options for restoring your speech. You can work with a speech pathologist to learn to speak without your voice box.

• Surgery to remove part of the throat (pharyngectomy). Smaller throat cancers may require removing only small parts of your throat during surgery. Parts that are removed may be reconstructed in order to allow you to swallow food normally.
• Surgery to remove cancerous lymph nodes (neck dissection). If throat cancer has spread deep within your neck, your doctor may recommend surgery to remove some or all of the lymph nodes to see if they contain cancer cells.

Surgery carries a risk of bleeding and infection. Other possible complications, such as difficulty speaking or swallowing, will depend on the specific procedure you undergo.

Chemotherapy

Chemotherapy uses drugs to kill cancer cells. Chemotherapy is often used along with radiation therapy in treating throat cancers. Certain chemotherapy drugs make cancer cells more sensitive to radiation therapy. But combining chemotherapy and radiation therapy increases the side effects of both treatments. Discuss with your doctor the side effects you're likely to experience and whether combined treatments will offer benefits that outweigh those effects.

Targeted drug therapy

Targeted drugs treat throat cancer by taking advantage of specific defects in cancer cells that fuel the cells' growth.

Cetuximab (Erbitux) is one targeted therapy approved for treating throat cancer in certain situations. Cetuximab stops the action of a protein that's found in many types of healthy cells, but is more prevalent in certain types of throat cancer cells.

Other targeted drugs are being studied in clinical trials. Targeted drugs can be used in combination with chemotherapy or radiation therapy…”

_________________________End of references____________________

 

 

Deathorglory

Hello Eddie

Hello Eddie,

Sorry, but I know next to nothing about throat cancer, so I'll be no help there.  I do know about chemo and radiation, though.  I remember when I got radiation, I was scared b/c radiation is generally not good for you.  It was actually nothing, though.  I just laid out on a table and felt literally nothing.  There were masks in the room and I asked/joked about them and got no real response.  I found them disconcerting and I wasn't even using one.  The one thing I want to stress to you is that you are literally making life and death decisions here.  If you bail on radiation because of anxiety, you may well be making a choice to die.  The radiation treatments are limited in both time and quantity.  I'd suggest that thirty-three 15 minute radiation sessions are worth your life.  You will make your own choices based on your own priorities, but I'd choose discomfort and life over easing my anxiety and dying.  The radiation treatments along with chemo gives you your best odds of beating cancer.  Just chemo will give you lesser odds.  

Best Wishes,

Ed

LorettaMarshall

Deathorglory said:

Hello Eddie

Hello Eddie,

Sorry, but I know next to nothing about throat cancer, so I'll be no help there.  I do know about chemo and radiation, though.  I remember when I got radiation, I was scared b/c radiation is generally not good for you.  It was actually nothing, though.  I just laid out on a table and felt literally nothing.  There were masks in the room and I asked/joked about them and got no real response.  I found them disconcerting and I wasn't even using one.  The one thing I want to stress to you is that you are literally making life and death decisions here.  If you bail on radiation because of anxiety, you may well be making a choice to die.  The radiation treatments are limited in both time and quantity.  I'd suggest that thirty-three 15 minute radiation sessions are worth your life.  You will make your own choices based on your own priorities, but I'd choose discomfort and life over easing my anxiety and dying.  The radiation treatments along with chemo gives you your best odds of beating cancer.  Just chemo will give you lesser odds.  

Best Wishes,

Ed

Ed ~ Your reply to Eddie is exactly what he needs to hear

Dear "Hero" Ed ~ AMEN 

Couldn't have said it better! As my kidney doc would say, "Take a bow!  You're a hero!"

Loretta 

paul61

Have you talked to your doctor about Panic Disorder

Hello Eddie,

I am so sorry to hear about your challenges with treatment for your throat cancer. I am not attempting to play “armchair phycologist” here, but I have to say that the symptoms you describe sound more like Panic Disorder than standard claustrophobia.

I say that with some experience; because I had Panic Disorder and your symptoms sound very much like mine. Whenever I was placed in a situation in which I felt that I had no control or option of “escape” I became very afraid, my heart rate accelerated to well above 100, my blood pressure skyrocketed, and I had symptoms very similar to having a heart attack. I was in fact having a “panic attack”. A panic attack is caused by a sudden rush of adrenaline pumped into the body by a malfunction in the sufferer’s autonomic nervous system that triggers an inappropriate “fight or flight” reaction.

The sad thing is that many folks who are not familiar with Panic Disorder, including medical professionals, confuse a panic attack with an anxiety attack. Anyone who has had a panic attack knows they are not even close in the level of discomfort or fear the sufferer experiences.

The good news is that Panic Disorder is a problem caused by a shortage of serotonin in the brain and can be effectively treated with several different medications. They are effective where benzodiazepines like Ativan are not. I encourage you to discuss Panic Disorder with your medical team and explore diagnosis options in this area.

As Ed has observed above; you may be making “life and death” decisions here, you don’t want to lose your chance at effective treatment over an issue that can be addressed with desensitization and medication.

I have been there Eddie, I know you can get through this with the right help.

Best Regards,

Paul Adams

McCormick, South Carolina
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU