- Carmel, IN
- Member Since Aug 2011
Radiation Therapy: What's it Like?
Part I of our "What's it Like" series
Obviously, the Internet is often the first stop for any new patient seeking information on what life with cancer is all about. But at WhatNext, we feel that our community offers what many online sites don’t: valuable personal experience from real cancer patients. Sure, sites like Cancer.net can offer a comprehensive and dispassionate breakdown of various cancer topics. But WhatNexter delivers straight talk from the patients who’ve lived it.
In our What’s It Like series of posts, we hope to provide new and current patients with insights into life with cancer from members of the WhatNext community.
What’s It Like: Radiation Treatments
If you have cancer – any kind of cancer – chances are you’ve received radiation therapy. In fact, nearly two-thirds of cancer patients will receive radiation treatments during the course of their illness.
Obviously, the Internet is often the first stop for any new patient seeking information on what the experience of radiation therapy is like. But at WhatNext, we feel that our community offers what a lot of sites doesn’t: valuable personal experience. Sure, you could go to sites like Cancer.net for a dispassionate, play-by-play breakdown of what to expect when you undergo radiation. But WhatNexters can offer our readers straight talk based on what happened during their treatments.
Treatments are fast
The majority of WhatNexters report that radiation treatments are usually fast and painless. How fast? Boris12 from the WhatNext f radiation therapy doctors that the treatment was “faster than going through the car wash.”
“The radiation treatment was like going through metal detectors; in and out of there in fifteen to twenty minutes.” – CassieMe1
“I had 10 seconds of extremely high radiation doses. It smelled like a lightning strike on a mesa with iron deposits. I heard the grinding of the machine, which got deeper when the radiation was increased.” -- meyati
While the treatments themselves can be short, a complete course of radiation usually consists of several doses each week.
“I had 5 treatments a week for 6 weeks; I would do it again without hesitation, to save my life.” – Phoenix 76
Treatments are usually pain free
Depending on the area of your body that is being targeted for treatment, most radiation patients report little to no pain associated with the procedure. Ejourneys, a breast cancer patient, writes that in her personal experience, “the highest level my pain reached was a two out of 10 … except for the last day of radiation, when it reached a three out of 10. Five days after I finished radiation, my pain was gone.”
Janetspringer, who was treated with a gamma knife, said that the actual treatment was painless, but notes that she was “very tired afterward" , and still deals with the after effects. Which brings up our next topic …
In spite of being pain free, radiation therapies do have side effects.
“The pain, burn, and other possible secondary effects are the ones that really hurt,” writes WhatNexter Rosa. It’s true: radiation can have unpleasant side effects. While treatments are fast and without pain, the radiation is still working on the affected area long after the actual treatment is administered. Radiation treatments are cumulative, and continue to “cook” (for want of a better word) the tumor once the radiation is applied. “I skated through the first five weeks, then pain set in,” writes non-small cell lung cancer patient ardelleg from the WhatNext forums. “I wasn't ready for it, and did the last week on pain pills and lidocaine swish-and-swallow mixture so I could eat and drink. It took 4 weeks for the throat to quit hurting.”
“I lost my taste buds and had a sore throat. Then towards the end, I had a pretty bad burn on my neck. It blistered and bled from time to time.” – SandiA “The worst side effect was mouth sores. All of my teeth have rotted out since then.” – BoiseB
Cervical Cancer sufferer sarasmash reports that her treatments were “pretty boring.” She placed her legs into a mold made just to fit her, and then the machine “ ‘zapped’ my cervix area … as for direct radiation effects, I lost all my hair down there, which was awesome.” She also writes that she had “really bad bowel problems” after treatment and is “still having bowel movement issues months later.”
You will be tired.
“After about 8 treatments I became very tired.” – Barryboomer In short: radiation will knock it out of you. Period. Tiredness and fatigue is a universal reaction to the treatment. Extreme tiredness.
“During my last two weeks [of treatment], I was very tired,” writes sarasmash. “I didn’t want to do much.”
“The treatment was painless and quick. But I was soooooo tired,” writes Carole357. “Eight weeks of fatigue that went away once I was finished. I got through chemo much better.”
Radiation Treatment can be awkward and stressful.
In spite of its breezy BoiseB from the forums describes a particularly uncomfortable aspect of radiation therapy. “I was required to be naked during radiation treatment,” she writes. “The radiation techs drew targets on my naked body".
Patients being treated for head and neck cancers have a different radiation experience because they need to be fitted for a positioning mask. This mask attaches to the radiation table, and helps to keep your head fixed in the correct position for treatment (which needs to be aimed carefully). The mask is applied wet and hardens around your face. This can cause claustrophobia.
“I knew I was a little claustrophobic,” writes Enna2014. “But when they put the mask on, I really found out!”
Richardc found out that he was also claustrophobic when wearing the mask, but “insisted the doctor put a hole where the mouth is; it helped immensely.”
You can find more information on radiation therapy treatments by searching the experiences section at WhatNext
What to Expect From Radiation
Radiation: How it Can Affect Your Body
Me Vs. Cancer, a View From the Other Side
Chemo Vs. Radiation, the Pros and Cons of Each
Fighting Cancer From the Other Side The thoughts of a radiation therapy technician.
So You're Getting a Colostomy? This is What it's Like
Editor's Note - Our Blog Post today is from Michael Holtz, a WhatNexter and Stage 3b-colon cancer survivor who has been through treatment and dealt with everything that a cancer diagnosis throws at us, then was given the news that he would have to wear a colostomy bag. Not only has he dealt with it like a boss but has gone on to prove to himself and everyone who will notice, that having a colostomy doesn't mean your life and all your activities are over. Have a read of his contribution to our "What it's Like" series.
Learning you need a
colostomy, whether temporary or permanent, can be nearly as devastating for some patients as hearing the words, "you have cancer." As you start processing the reality that your life will be dramatically different in some ways, you worry about leaks and smells and whether your life will be anywhere near the "normal" life you've been living.
I empathize with those and any concerns people have about their colostomy, but I promise you don't have to live in fear. And remember, the bag is saving your life.
My colostomy was supposed to be temporary, but a long and complicated surgery to remove a three-inch adenocarcinoma from the wall of my rectum ended with a different result. The tumor was larger than expected and radiation to treat my Stage-3B cancer left a lot of scar tissue, so there wasn't any rectum to salvage. My surgeon was forced to remove the whole thing.
I was disappointed at first and then devastated when my first appliance leaked in the middle of the night while I was in the hospital. Stinky wetness is not exactly something anyone wants to wake up experiencing, but I learned soon that I was given the wrong appliance for my body type.
I was lucky. My hospital has two fabulous Cleveland Clinic-trained ostomy nurses on staff. Over the course of three visits they trained me how to properly change out and attach my appliance. They also implored me not to let my colostomy alter my active lifestyle. They knew I was a runner, and I liked to bike, hike and swim.
Michael completing one of the many marathons and half marathons he has competed in since his diagnosis
"You can continue to do all of those things," Annie said. "These appliances are engineered to let you live as normal and active a life as you want."
In the years since my surgery, I have helped friends who were not as fortunate to have ostomy nurses understand the workings of their stomas and appliances. My friend Belinda, who died from ovarian cancer, asked me to come to her hospital room. She was getting a colostomy because of a bowel blockage and wanted to see what mine looked like. I had absolutely no qualms showing her.
I'm very open about having a colostomy, and I've offered lots of advice to friends who have had to get colostomies for various reasons during their cancer experiences. If you are getting a colostomy, or know one is in your future, here is my advice:
• Process Your Emotions. It's absolutely okay to feel angry and devastated. Even a temporary colostomy means your body has changed. You've just entered a world of uncertainty and worry that will last until you become accustomed to being what's known as an ostomate.
• Don't Sit on the Sidelines. I know stories of too many people who won't leave their homes, or even their couches, because they fear what might happen with their colostomy bag. It's tempting, but don't do it. You have a lot of living to do. Go out and live.
• Be Prepared. I carry what I kindly refer to as my "$*it kit" with me almost everywhere I go. If it's not in my hands or in my backpack, it's accessible in the car just in case a leak happens or need to change out the pouch (I use a two-piece disposable pouch system because a drainable pouch simply isn't feasible for a line-backer built guy who travels frequently). My kit contains flanges, rings, barrier strips, pouches, baby wipes, ostomy scissors and a roll of dog doo bags, which are perfect for disposing of used pouches.
• Laugh at Leaks. Let me be honest with you, leaks are inevitable. I don't know a colostomate who doesn't have a leak story or three to tell. You will get over even the most catastrophic public leak situation. Share them. It takes the sting out of what might otherwise be a humiliating experience. My first significant leak occurred 10 minutes before I was slated to share my cancer experience at an event. While I did not expect to find myself standing stark naked in a public restroom hosing myself off, it is one of my favorite leak stories to tell.
• Change Your Appliance. This is important. If your pouching system has an odor or leaks frequently, get a different system. My first system had a flange that attached to my body using a large adhesive bandage. I sweat profusely when I work out. Sweat got under the bandage, loosening the flange. Well, you can see where I'm going with this. I now use a system that is more of a rubberized plastic material that stays in place for days. I've run a marathon and two obstacle course races with this system and had no leakage issues whatsoever. I also like to swim laps at the Y, and I can absolutely do that without fear using this system.
• Enjoy the Perks. Okay, I know you're wondering what perks there could possibly be to have a colostomy. My favorite is that I've cut time out of my morning routine. I'm not a toilet sitter anymore, which can be quite convenient. Some of my runner friends are jealous of my situation because while they have to stand in line to evacuate their bowels in a porta-potty before a race, I don't have to do that.
• Bare Your Colostomy. If you spend much time on social media look up some of the colorectal cancer survivor group pages. You are bound to find pictures of men and women who proudly let their colostomy bag hang out for all the world to see. Honestly, I'm not there yet. Not because I'm afraid, but because I'm fat. When I get to my goal weight, the first picture I want to shoot is one of me showing off my colostomy. It's part of who I am. I cannot deny it and I'm not ashamed of it. You shouldn't be either.
Photo above - Michael speaking about the "Subway Race Against Cancer", which he was the Chairperson for. Michael continues to be an advocate for cancer patients of all types of cancer through his work with ACS-CAN (American Cancer Society Cancer Advocate Network) and his never ending volunteer work for various fund raisers, speaking at every chance he gets and raising awareness for issues all cancer patients face. He is a true living example of our slogan "Live Your Life.....Not Your Cancer"
Michael has written a book chronicling his experience dealing with a colon cancer diagnosis, treatments, surgery, having a colostomy put in, and living life after it. It's an inspiring look at facing a cancer diagnosis and going on to live an active, mostly normal life.
He can be contacted through his website here. And his Facebook Page Here
Survivor's Guilt - It's Not Your Fault!
That wonderful day your tests results come back with those three glorious letters N, E, and D (No Evidence of Disease) should be among the happiest of your life. It’s the day you’ve been working toward for many arduous months, so feelings of elation, joy, and relief will flood through you. For a while at least.
But after those initial reactions settle in, survivors often become reflective. In spite of the amazingly good news, thoughts can often turn to an entirely different emotion: guilt. Survivors often begin to think less about themselves, and more about the people that they’ve met during their journey who didn’t make it. The question they ask themselves is, “Why me?”
“It hits me especially hard when cancer kills someone considerably younger than I am,” writes WhatNexter Ejourneys. “I've experienced it on the WhatNext forums and elsewhere online.”
Emotionally, surviving cancer isn’t dissimilar from surviving any other traumatic event, including accidents, natural disasters, and even war.
“Not all of our patients experience cancer as a traumatic event,” says Rhonda Colley, a mind-body therapist at Tulsa’s Cancer Treatment Centers of America. “But even if they aren’t traumatized, they can still experience survivor guilt, which means basically feeling guilty that they got through this treatment journey relatively unscathed.”
The fact that this sense of “responsibility” for the death of others is misplaced in cancer patients – they obviously have no control whatsoever as to whether other people can contract the disease – does not make the issue any less real. This “imagined guilt” can still have a massive emotional impact.
“The feeling of guilt is real, but the foundation of it is imagined,” Colley says.
WhatNexter LiveWithCancer (a stage IV lung cancer survivor) writes that “it is hard not to wonder ‘why?’ when a younger person passes away and I am doing well.” While she knows that these feelings are irrational, she admits that she “can’t always let the feeling go anyway.”
This feeling of guilt is natural, but when a survivor dwells or obsesses on this emotion for too long it can become unhealthy. The sense of guilt about things that are beyond your control can spiral into depression. Survivors need to let go of their guilt and keep moving forward.
“I feel sad about others dying of cancer, but I don't feel guilty or relate that to me surviving, any more than I feel guilty I wasn't in a car crash that killed someone I know,”
writes BarbarainBham from the WhatNext Forums. “You need to tell yourself you had nothing to do with that. Feeling guilty is for things you can do something about.”
Sharing these emotions with a close friend or family members – someone you trust – can help you work through these feelings of guilt. You may also wish to seek the help of a counselor or an oncology social worker.
Carool from the WhatNext forum believes counseling can be key. “Cancer does a number on every survivor's head, and I found I really needed some therapy,” she writes. Support groups are also a great resource for those experiencing survivor’s guilt. “I like to get patients connected to groups because that can help give them a constant sense of balance,” says therapist Rhonda Colley.
But in the end, Colley believes that the most effective way to move past survivor’s guilt is to simply look at the positives of survival. She implores those suffering from guilt to ask themselves, ““What could a survivor do that would be productive and fruitful going forward?”
WhatNexter BoiseB agrees. “The only way to compensate for it (it never really goes away) is to live your life as generously and lovingly as you can,” she writes. “And tell your survivor story – it will inspire and comfort others.”
Have you struggled with survivor’s guilt? Share your story about how you’ve coped with the issue at WhatNext
People Say the Craziest Things to Cancer Patients
There’s a little-known side effect of cancer that most patients suffer from almost from the very moment of their diagnosis. And while this side effect may not cause any physical pain, it can still do lasting damage to emotions and relationships. The name of this side effect? Insensitive remarks.
It’s true: most cancer patients have heard their fair share of insensitive comments about a host of topics surrounding their situation. Careless remarks about a disease or a patient’s life situation can often cut to the quick.
Sadly, the person who makes these remarks is often someone who is very close to the patient. What’s more, being insensitive or callous was the farthest thing from that person’s mind when the comment was made.
The question is this: should you call attention to these comments and confront the person who said them? Should you explain why what they’ve said has hurt you, or why it’s insensitive?
It’s a tough call.
Syndicated advice columnist Carolyn Hax writes that “people who have to process awkward things sometimes say them out loud.” So while those brutal comments can hit you hard, it’s important to know this was not the intent of the speaker. The people around you need to process your situation as much as you do.
WhatNexter ShortCuts writes that “most of the insensitivity I get usually comes from someone who has no clue about cancer, doesn’t know anyone with cancer, and never had cancer.” Ignorance, after all, is bliss. And while this may not be an excuse, it is very much a reality.
When you received your diagnosis, your world stopped. And while it can be hard to appreciate, for everyone else, the world continued to spin. This means that the little insignificances of day-to-day life that now seem so trivial to you are still significant to everyone else. Your perspective may have undergone a radical shift, but you can’t expect that everyone else’s has as well.
Donesewright from the WhatNext forums writes that she “received so many insensitive comments that my husband and I began blogging about it. That greatly reduced the number of comments we got.”
Whether or not you bother to confront people regarding these comments depends largely on your relationship with the person who made the remark. Many of these kinds of comments can come from people with whom you only have a nodding acquaintance at best. And in that situation, it’s often best to simply change the subject and move on.
Of course, when those insensitive comments come from someone you’re close to and want to continue to have a relationship with, it’s probably best to say something to keep any resentment from stewing.
CAS1 from the forums relates a particularly extreme example of this situation: “My husband who never speaks much decided to blab to the world that I had cancer. Even after I asked him not to do it.”
Yikes. That’s awkward.
The advice columnist Hax agrees that “if it’s important to you – and your future relationship – then by all means, say something.”
According to Hax, since you already have a relationship with the person in question they are likely not to be a bad person. So “instead of ‘confronting,’ maybe follow your opener with an effort at understanding.”
Hax suggests to try understanding the person (saying, “It must be difficult for you to understand my situation.”), or asking them to understand you; say “that was jarring for me to hear,” and then see if there’s comfort in the reply.”
Good advice, but remember – this is someone you’ve likely known for years. Be honest. Be frank. If they can make off-handed, insensitive remarks, you can also feel free to speak your mind and then play the “cancer card.” Why not? If your feedback isn’t well received, you can always say that you are, naturally, out of sorts – blame it on emotions, chemo brain, whatever. It’s a two-way street. If they are comfortable enough with you to speak while their brain is in neutral, the benefit of that doubt also extends to you.
Clearing the air can be the best thing to keep these kinds of statements from festering. And it can also educate friends to be a little more thoughtful in the future – never a bad thing.
What are some things that others have said that caught you off guard?
9 Things Cancer Patients Might Hear and How to Respond - WhatNext
10 Things Cancer Patients Love to Hear - WhatNext
HPV Vaccine: Yes or No?
In the last few years, the topic of vaccines has become quite divisive. But then, that’s usually what happens whenever a medical issue becomes a political football – something of which all cancer patients are all too aware.
Usually, the vaccines controversies aren’t found in the cancer community. After all, you can’t vaccinate against cancer … except in one case. The vaccine Gardasil can protect males and females against cancers caused by the human papillomavirus (HPV).
The HPV vaccination ticks nearly every box needed to cause a media firestorm. On the plus side, it can prevent the infections that account for genital warts, along with 70 percent of cervical cancers, along with anal cancers, and head and head and neck cancers.
For those living with cancer, it may be difficult to believe that there could be any controversy around a vaccine designed to reduce the incidence of any form of this dreadful disease.
However, HPV is an infection that’s transmitted exclusively though sexual contact (intercourse and oral sex). Add to this the fact that the HPV vaccine is meant to be administered to children (mostly girls) as young as age nine. The obvious question becomes this: are you preparing a girl so young to become promiscuous?
Now add into the mix that this relatively new vaccine has been linked to adverse side effects – even death – and, well … you’ve got quite a controversy on your hands. As a community of cancer patients, the WhatNext community has a unique perspective on this issue. And yet, there still seems to be little consensus. One would think that anyone living with cancer would see nothing but the benefits of the HPV vaccine.
But we are a community of individuals, and in no way does the WhatNext community move in lockstep in a single direction. Like the community at large, WhatNexters break into a pro- and anti-HPV groups. But our group's intimate familiarity with medical issues has led both of our pro and anti camps to have a more nuanced view the controversy.
WhatNexter Carool sees the expense as one of the only downsides of the HPV vaccines, but points out that “the vaccination only protects against the cervical and head and neck cancers caused by the HPV virus, not those caused by other factors.”
DoreenLouise from the WhatNext Forums says the Gardasil vaccine is “too new to risk harming my daughter’s health when the side effects are not fully known.”
The question of safety remains in the news. Earlier this month, a 12-year-old Waukesha, Wisconsin girl died mere hours after receiving the Gardasil HPV vaccine. According to the local health department doctor, incidents like this are a danger with every vaccine, saying that they are “very rare” and “one in a million.”
Yet in spite of the reservations that many have, the HPV vaccine has had success. It’s been in use for 10 years in Australia, and a recent report indicates that new cases of cervical cancers have been cut in half.
Carlie from WhatNext is actually a survivor of head and neck cancer who had her daughters vaccinated with the HPV vaccine. “I made the best decision because my heart is in the right place,” she writes. “Hopefully now that my children are 23 and 20 no adverse effects of the vaccine will occur. So many times I pray for an easy answer to cancer and cancer prevention... it doesn’t come easy.”
CAS1 takes the POSITIVE view, writing that it is “a profound gift” to be able to “protect our children from at least 12 cancers.
“What a crime that some children will now have to face death or at least brutal treatments because their parents withheld a vaccine, not because they knew it wouldn’t harm them,” CAS1 writes. “But didn't know – and didn't find out and educate themselves to protect their own children.”
Obviously, for cancer survivors, this is a very emotional issue. And it’s likely to continue to be one for some time.
What’s your opinion on the HPV vaccine? Drop by WhatNext and let us know?
Biopsies: A Primer
The biopsy is usually the first step to diagnosing cancer. And “biopsy” is a term so often heard that people can get the impression that one biopsy is about the same as another. But that’s definitely not the case.
Biopsies are often discussed by WhatNexters, and there can sometimes be confusion; two forum members can be discussing biopsies, but since each are being treated for different forms of cancer, it’s likely that they experienced entirely different types of biopsy. So without realizing it, members can be having a very “apples-and-oranges” discussion.
What follows is a short introductory guide to biopsies. It’s by no means comprehensive, but it’s hoped that it will help veteran WhatNexters and new members gain a better understanding of this incredibly common – yet often misunderstood – procedure.
There are nearly as many variations on biopsy as there are varieties of cancers, so please be sure to consult your doctor for more detailed information about any procedures you may have to undergo.
What is a “biopsy,” anyway? Quite simply, a biopsy is the process of removing a sample of tissue or cells from nearly any part of your body in order to check for cancer. The type of procedure that is used obtain this sample depends on the type of cancer that is suspected. A biopsy’s “invasiveness” is the degree difficulty required to obtain the sample.
Once tissue is obtained, it undergoes a thorough examination of individual cell clusters. This is called “cytology” (literally “study of cells”) or “cytopathology.”
Types of Biopsies
Needle Biopsy This is the most common form of biopsy, and generally, there are two types.
Fine Needle Aspiration During a Fine Needle Aspiration (FNA) biopsy, doctors obtain tissue by inserting a syringe into the tumor and withdrawing a small about of tissue and fluid. It’s similar to draining fluid from an injured join, and usually performed under local anesthetic. For tumors located deeper inside the body, the doctor will conduct the FNA by “aiming” the needle while watching an imaging test such as an ultrasound or CT scan.
Core Needle Biopsy The needle required for a “core biopsy” is slightly larger than the one used for an FNA, and withdraws a sample of tissue that’s about 1/16th of an inch in diameter, and half an inch long. Otherwise, it’s identical to an FNA procedure. Sometimes vacuum tools are used to obtain the larger core biopsies required from breast tissue. It usually take longer to receive test results from core biopsies since the samples take more time to process.
CT-Guided Biopsy CT Scan (short for “computerized tomography”) combines a series of X-ray images to create a comprehensive image of the position of bones, blood vessels, and tissues inside of your body. Doctors use the real-time CT Scan image, doctors to guide a biopsy needle toward the suspected tissue. It’s a bit like following directions on your car’s GPS.
Ultrasound-Guided Biopsy Similar to the CT Scan, the ultrasound scanner helps to doctor to steer a way to the tumor that needs to be sampled. In this scan, the doctor may use a thin, flexible, lighted tube called an “endoscope” is used. The endoscope is mounted with a tiny camera lens that can broadcast images to the doctor in real time; tissue can also removed and sampled by an endoscope.
Bone Biopsy This biopsy is used specifically to search for forms of bone cancer. While this kind of biopsy may be performed in conjunction with a CT scan, it may also require surgery.
Bone Marrow Biopsy This biopsy draws a sample from the spongy tissue found inside your bones known as “marrow.” The doctor will insert a large needle into the pelvic bone. A large needle is used to enter the pelvis bone to collect bone marrow. This procedure will be conducted while the patient is fully awake and under local anesthesia. Diseases that can be detected by this form of biopsy include leukemia and lymphoma.
Liver Biopsy There are three methods for conducting a liver biopsy, the most common of which is the “Percutaneous Biopsy.” During this procedure, the doctor will ultrasound images to aim a needle that’s inserted through your stomach to your liver. The biopsy itself takes just a few seconds.
In some cases, doctors may need to perform a “Transjugular Biopsy” to reach the liver, using an endoscope inserted into the jugular vein. Local anesthetic is used to numb the neck, and the doctor steers the endoscope while watching an X-ray image.
A “Laparoscopic Biopsy” may also be used to sample liver tissue. In this procedure, the patient is under general anesthesia. A laparoscopic procedures are also known as “keyhole” surgeries, since the device is inserted through a small hole in your abdomen, rather than through a vein or intestine.
Skin Biopsy This biopsy is common when testing for types of melanomas. A circular blade cuts the tissue away from the skin. This is also known as a “Punch Biopsy.”
Kidney Biopsy Similar to the percutaneous biopsy used for the liver, a needle is inserted through the skin of the back and into the kidney to draw a sample.
Prostate Biopsy This procedure requires a series of needle biopsies to be done on the prostate gland. Each of these biopsies are performed during the same visit, using a probe that reaches the gland by being inserted into the patient’s rectum.
Surgical Biopsy Technically, a laparoscopic is a “surgical biopsy,” but a more invasive and complete form of surgery may be require to extract a sample of tissue or an entire mass of tissue from the body.
What’s your experience with biopsy procedures? Share and discuss your stories with the WhatNext community.