Most Cancer Survivors Say Chemo Fears Unfounded

[Mary]

For those who have had chemotherapy for bone sarcoma, I would really be interested in hearing your thoughts about this article. What did you expect from chemo? Was the experience easier or harder than you expected? Please be honest. I think our members and visitors need to know what is really happening, both "good" and "bad."

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Most Cancer Survivors Say Chemo Fears Unfounded
By E.J. Mundell
HealthDay Reporter
Friday, April 4, 2008; 12:00 AM

FRIDAY, April 4 (HealthDay News) -- Although most cancer survivors polled in a recent survey said they had been fearful of undergoing chemotherapy, most also said the treatments were much less trying than they had expected.

In fact, 94 percent said they would advise others to undergo chemotherapy if their doctor recommended it.

"Like most people, I was filled with fears about chemotherapy, particularly about the possible side effects," said award-winning broadcast journalist and author Linda Ellerbee, 63, who underwent a double mastectomy and chemotherapy after being diagnosed with breast cancer 16 years ago.

Ellerbee spoke at a recent news briefing in New York City, convened to announce the results of the survey.

"It wasn't fun -- no one will tell you that chemotherapy is fun. But it wasn't as bad as I expected, either," Ellerbee said. "The reality is that I believe that I am here today, partly because that treatment worked."

Ellerbee, for decades a renowned journalist at CBS, NBC and then PBS, is also the author of a number of books for both children and adults. The mother of two, she now writes and hostsNick Newsfor Nickelodeon.

The survey -- which polled 326 U.S. adults who had undergone cancer chemotherapy within the past five years -- was sponsored by the nonprofit National Coalition for Cancer Survivorship (NCCS) and drug maker Sanofi-Aventis, who together have created theSurviving With Confidencecampaign to help patients gain a better understanding of cancer care.

Some of the survey's findings:

Around eight out of 10 cancer survivors said they had been fearful prior to starting chemotherapy, with most (76 percent) worried primarily about side effects such as hair loss, nausea and fatigue.Looking back, almost two-thirds (62 percent) said those fears were unjustified. Just 14 percent described their side effects as "very difficult," and about a third (32 percent) had a "somewhat easy" or "very easy" experience with treatment.Almost all (87 percent) of survivors said that new supportive care products made the side effects that they did experience much more manageable than they had expected.Eighty-seven percent of survivors who had experienced side effects said that chemotherapy was worth going through, and 90 percent said the treatments had given them real hope for survival.

Anne Willis, 25, is NCCS' director of survivorship programs and a 10-year survivor of Ewing's sarcoma, a rare malignancy that attacks the bone or soft tissue. She told conference attendees that when she first knew she would be undergoing chemotherapy, she "was too scared to ask the nurses what to expect. I never had any conversations with anybody, so I was absolutely terrified."

But, like many of those polled in the survey, Willis said she soon realized that her fears of chemotherapy were exaggerated. Her attitudes toward her health-care team changed, too. "I became much more of an active participant in my care," Willis said. "I never hesitated if I had a problem. One time I had a full-body rash that did not make me very popular, and I immediately told my doctor about it. We treated it and took care of the problem."

Too often, patients remain mum about their fears and the side effects that they do experience. Ellerbee said she was lucky, because her training as a journalist had taught her to ask questions.

"If you are living with cancer, talk to your doctors and other health professionals about these issues," she advised. "If you've got fears, tell them. If you have questions, ask them. Side effects -- tell them. Ask what they can do to help you."

The NCCS strongly advises that patients also get written "Treatment Plans" from their health-care teambeforethey begin chemotherapy -- a document that outlines the interventions they will receive; potential side effects; and ways to manage those side effects.

"I know personally that having that piece of paper would have encouraged me to open up that dialogue with my health-care team," Willis said.

Everyone agreed that, if anything, cancer care has gotten both easier and more effective in the decade or more since Willis and Ellerbee received their care.

"Things are dramatically different now in the 10 or 12 years since [Willis'] treatment, in terms of what we can do for patients to improve their care," said oncologist Dr. Howard Burris, who is chief medical officer and director of drug development at the Sarah Cannon Research Institute in Nashville, Tenn. "It's really made cancer care an outpatient business."

Ellerbee agreed. "Since my diagnosis, there have been many advances in cancer care, and more people survive every year because of new treatment options," she said. "In other words, it is more possible today to live life as you know it -- and to have that life as you know it go on -- while you are undergoing therapies that can potentially extend your life or save your life."

"It has been 16 years since I was diagnosed with cancer," Ellerbee added, "and every morning that I wake up on the right side of the grass, I am a grateful woman, because I did not let my fears keep me from getting the treatment that I needed."

More information

For more on living with and beyond cancer, visit the National Coalition for Cancer Survivorship.

SOURCES: Linda Ellerbee, broadcast journalist; Anne Willis, director of survivorship programs, National Coalition for Cancer Survivorship, Silver Spring, Md.; Howard Burris, M.D., chief medical officer and director, drug development, the Sarah Cannon Research Institute, Nashville, Tenn;Surviving with Confidencesurvey
© 2008 Scout News LLC. All rights reserved.

[Tara]

It is very interesting...

LOOKING BACK, I shouldn't have been so anxious and worried about what the treatment was going to do to me.. make me feel like, etc.  Most of the side effects were very well controlled.  I found out that being bald is no big deal. 

However, I must wonder if I wasn't worried... would I have bugged my doctors into writing me prescriptions for every conceivable nausea, pain, anxiety, reflux meds that I could think of.  Actually, I didn't think of the meds (at first) I just told them what I wanted them to control and they cooked up my cocktails.  After the second chemo, I would have a list of what I needed, # of pills I had on hand, how many I normally needed, what strength, etc.  .  I had an arsenal of drugs at my house.  I don't know how well I would have made it through the nausea and pain if I hadn't had the forethought to get everything at each chemo.

One thing I do know is I should have spent less time worrying and more time enjoying the good days.  I found that out a few months into treatment... I wish I would have known at the beginning that most side effects are easily controlled.  Throw on a hat or scarf to cover up your head (if you want it covered), take your pills and enjoy each minute as it comes. If all you can do with your toddler is lay on the couch and watch a movie... Enjoy it - mine loved it when we got to do that.  You can be going through treatment.... have a 100% kill rate... and still get struck by lightning.    I know some people would say.... oh, there is such a slight risk of being struck by lightning....... I think I had less of a chance of getting struck by ES of the clavicle 

[Cathy]

I hate to tell you the horrific experience I had with chemo.  I seem to be one of the few who had such an awful time with it.  I went in with no expectations and ended up with a pulmonary embolism (blood clot in lung), blood clots in the salvaged leg, bleeding ulcer, terrible vomiting, kidney failure, neuropathy of the feet and tinnitis.  I lost 30 lbs. in 3 months and nearly died.  If I had a recurrence, I doubt that I could survive another round of chemo.  I am always amazed at how well others do with their treatment and am so happy for them.  I wish I could have been one of them.

Always,
Cathy

[Cari]

I had a hard time reading this article.  I think one of the BIG differences is that with Sarcoma and I think all of us here that have had chemo had it for sooooo long and it was so intense.  Most other chemo protocols don't last as long as ours does.  After so long our bodies tend to shut down on there own.  or at least in my case.  When I found out I needed chemo the one thing I worried about was losing my hair--I thought the other stuff would be no big deal and easy to deal with--BOY was I wrong--  I didn't have as hard of a time as Cathy--but my body sure didn't like it.  It took weeks for my blood counts to recover--many infections--many blood transfusions--many sores--and many mystery things   And of course the nausea and the vomitting constantly.  My doc was awesome at giving perscriptions to help with everything, but I was so beat up those things usually didn't help--or didn't help in the way of taking it away--I still had the effects maybe not to full intensity.  I definatley think it has to do with what chemos you are getting--how much of it you are getting and how long you are getting it for. 
I wouldn't wish it on anyone

[Kelly_Marie]

Cari- me too!  My stomache clinched at the article.  Cathy I too had a terrible time and maybe you are also right in that our ES treatment is so long!  Whatever the reason- I won't do that again.  To me I was not dead nor was I alive during the treatment and especially what they termed the sandwiche affect when having chemo and radiation at the same time.  12 years later my daily pain and strange walk isn't due to the cancer as much as the side effect of the treatment.

Daily I am encouraged by research working towards a better treatment.  It won't be until a human can take a pill as the only treatment for cancer and bags of chemo will be in the museum of horror that cancer treatments will truly be, not as bad as one could imagine.

I guess that's just me:)
Marie

[Michelle]

I guess that since sarcoma makes up such a small percentage of the adult cancers---maybe their stats are right.  However, if you polled ONLY sarcoma patients...I bet it would be an inverse number where 96% said that the CHEMO ---- SUCKED!

I know that Chris' experience was horrific as well.  The bad reaction to the ifosomide that left him hospitalized and basically unconscious for six weeks....the Steven Johnson's Syndrome where he got second degree burns over most of his body as a reaction to ? we never figured out what.  The mouth sores from mouth to 'the other end' that made it difficult to even swallow his own spit. 

Thank goodness for MORPHINE!

One day we sat in our local ER and I burst into tears.  He looked surprised!  Whats wrong he says?  "I am so sick of doing this and I can only imagine how sick of it you are."  And what a great reply he had, "OH I dont remember most of it, the morphine helps a LOT!"

I would never, ever, ever tell anyone that they should not give it all they have got---or that they should not fight.  I just wished that someone along the way in the begining would have looked us square in the eye and said, "Osteosarcoma is not your 'typical' cancer...this is going to be far worse than you can ever imagine."

[Jenny]

I am extremely fortunate and grateful that I did not have severe and mutiple side effect such as others who have undergone our chemo regimine.  I had a superficial blood clot, mild neuropathy in my fingers, hair loss, fatigue, mild nausea, constipation, sleeplessness while being tired, pale, striped fingernails, anemia requiring 4 blood tranfusions...

I decided, after damaging my psyche with all the information about what side effects could be had, that I was just going to clear my mind and thoughts of any information or expectations and just allow the experience to unfold, whatever was going to happen, WAS GOING TO HAPPEN, I was along for the ride!  Of course I was fearful, but I converted any feeling of fear into sassy persistance with common statements coming from me like "Let's get this !@%$!@%$# show on the road!" or "Let's pull out can of WHOOP ASS on this cancer!" - this made the Nurses laugh, and made me laugh.  If I was going to die, then damn it, I was going to go out being a silly jack ass.  I know God set this up this way, but I was always exposed to others who were suffering much more than I throughout my treatment.  I was constantly forced to be grateful for where I was, and realize that it could truly be worse....

I think the article is interesting, but I think the danger of these types of articles is that it attempts to put people into a box...and with any medical condition this is a bad move.  We are all individuals, with different cells, cancers, blood types, personalities, genetics, perspectives, tastes, lives....etc!  No two people will ever have the exact same chemo experience, and our Dr.'s would best serve us if they saw us each as individuals, each as a mystery that will unfold as our treatment progresses and that they need to stand guard to help us stay on the path and manage our symptoms so that we can keep forging forward.  We also need to see OURSELVES as a mystery to unfold, and that the journey will present itself to us in due time, and that we will take whatever comes our way because we want to live!

I disagree with the article on this aspect - our fears are not unfounded, they are legitmate at the time.  The fear allows us to further explore where our TRUE COURAGE lies....Despite our fears, we exhibit COURAGE in the face of the unknown and take the chemo into our veins not knowing, but trusting we will be OK.  Our fears help us to find our courage.