Paul's Heart

Life As A Dad, And A Survivor

When The Cure Might Just Be Worse Than The Disease

I am going to apologize for the length of this post.  I have done all I can, several re-writes to make it more friendly to read.  But as the conversations continue on this subject, my post actually continues to grow, so that not just the facts, but all sides of opinions can be presented.

The story has received national attention.  Knowing that my blog receives a lot of attention, a follower asked if I would provide an open discussion, that perhaps more understanding might be provided, that perhaps given the following of my blog, the family involved might just see all the support, encouragement, and hope that exists in treating one of the few curable forms of cancer.

Unlike other posts I have written here, I am going to change the format to make it a little more formal, as if written as a term paper.

Before I do that, I want to make a few things clear.  First, I will state facts as they are known and their resources.  I will make obvious those which are opinions.  Commentaries quoted in this post are confirmed as legitimate.  Comments and replies will be allowed as long as they are constructive and not inflammatory.

The Headline

The following is just one link to a news website, there are so many more that originally reported the story about a 17 year-old girl from Connecticut, referred to only as “Cassandra C.”, diagnosed with Hodgkin’s Lymphoma, a very treatable form of cancer, but refused the treatment, which was supported by her mother, due to the potentially toxic side effects.  The state interceded and has forced the teen to undergo the treatments, having been removed from her mother, and treated against both their wills.  Here is the link as one news affiliate reported the story:

http://www.cbsnews.com/news/connecticut-teen-with-cancer-battles-state-to-stop-chemo/

This is a sad story with major implications in all directions.  Legally, should the state be interfering with the rights of someone objecting to treatments?  How informed were either the mother or the daughter as to all the details needed to make an informed decision?  Does the 17 year-old girl even have rights?  But aside from all the controversies of this story, there is one huge topic not being discussed, either intentionally or just as matter of fact, and I will present that topic towards the end in detail, but how were the concerns of the family addressed, and were their concerns answered?

Hodgkin’s Lymphoma Facts

I have stated repeatedly on this blog, I am a Hodgkin’s survivor who will hit my 25th anniversary in remission on March 3, 2015.  I stand behind the facts that I am presenting from a personal perspective and as far as factual.  From the time that I was diagnosed back in 1988, I was told the cure rate of Hodgkin’s Lymphoma was 85% which made it one of the most curable.  My oncologist actually made me sick commenting “if you are going to get cancer, Hodkgin’s Disease is the cancer to get.”  (I wrote about that comment earlier in “Paul’s Heart” as to how much I took offense to that statement).  In fact, even in the decades before me, Hodgkin’s has been treatable with success, especially when caught early.  And in most all cases, untreated Hodgkin’s would lead to certain death.

The diagnostics and  treatments for Hodgkin’s Lymphoma have improved in success over the century since Hodgkin’s was discovered.  The safety of the treatments has also improved, but has a long way to go in terms of short term and long term side effects.

But what the reports do not state accurately, are the risks from the treatments.  Personally, I am offended to simply state the side effects as “including nausea, hair loss, vomiting, fatigue and diarrhea.”  This is a horrible stereotype that has existed for decades, which has always enflamed the fears of dealing with cancer.  But the truth is, if it were accurately reported, there are far more serious potential side effects, and they depend on the type of treatment done.  To understate those risks, no matter how small, provides a huge disservice to the patient and her family.

Radiation therapy has always been the go-to for treating Hodgkin’s.  Gone are the days of exposure to cobalt radiation, and being exposed to limits of other radiation that exceed lifetimes of exposure limits.  Chemotherapy drugs used in warfare then used to treat Hodgkin’s as well as other toxic drugs, now considered obsolete.  There are now new standards of radiation and chemotherapies being used, that are providing similar success, but still carry more risks than the stereotype side effects listed above and they include:  cardiac, pulmonary, gastrointestinal, endocrine, spinal, muscular, neurological, renal, urinary, reproductive, and of course, emotional.  There of course is the risk of secondary cancers such as breast, thyroid, colon, and even recurrent or new Hodgkin’s.  Now I have just listed the systems involved, but the effects for each system are numerous.  And for the sake of this post, I will say that this is only in the case of Hodgkin’s Lymphoma, not necessarily other cancers, unless those cancers use similar drugs for their treatments.  As you can see, there is far more to consider than just nausea and hair loss.  While the risks may be lower, they still exist.

Facts Of The Case As Reported

The subtitle above is written that way on purpose.  For the purposes of HIPPA, we, as readers do not have the rights to the actual information of the case, including the actual treatment regimen.  Therefore, we can only rely on the following facts as being legitimate:

  • Cassandra C. at 17 years-old is a minor
  • Hodgkin’s Lymphoma very treatable, untreated death likely
  • Cassandra refused treatment due to toxicity concerns, mother supports her daughter’s wishes
  • Department of Children and Families removed Cassandra from her mother, and have allowed the treatment to be administered by orders of the state of Connecticut
  • DCF is now in charge of Cassandra’s care
  • Neither the Supreme Courts of Connecticut or the United States has ever ruled on this issue

The Argument

This is what has me bothered most about the whole thing, because all that is being discussed, though legitimate, is the right to do with your own body.  “It’s a question of fundamental constitutional rights — the right to have a say over what happens to your body-and the right to say to the government ‘you can’t control what happens to my body,'” Cassandra’s mother’s attorney, Michael S. Taylor.

Not being discussed are the reasons that this family is in this position in the first place.  Questions about the safety of the treatments, or the surveillance to deal with these issues are not even being discussed.  So yes, if it is only coming down to the “right to do with your own body,” then the argument should be done.  With a full and complete discussion of the risks and monitoring to address the concerns of the family, only then can the family make the informed decision that they claim to have made and support.  The fact is, we have no idea the details of the conversation between the doctor and his patient about the risks and side effects other than what has been released by Cassandra’s mother.

Instead of trying to get to the bottom of what is best for the young girl, which yes, is to survive a curable cancer, a system, our government, and everyone else reading this story only want done what we believe, in spite of clearly violating a valuable right, not what can be done safer or better.

Case Update – Facts

http://www.nbcnews.com/health/cancer/connecticut-teen-curable-cancer-must-continue-chemo-court-n282421

The Connecticut Supreme court ruled last Thursday, that Cassandra C. is not mentally competent to make her own decision and will continue to receive her chemotherapy that both she and her mother battled to halt.

Lengths to avoid treatment included Cassandra C. running away from home.  But the state used against Cassandra C. the fact that several oncology appointments and exams were missed to claim that Cassandra C. was too “immature” to be responsible for her decision, as her mother is being accused of making the decision, rather than supporting it.

To be honest, it should not be considered unusual, as part of the Kubler-Ross stages, to go through “denial” and want to avoid things that you must face head on.  But it clearly would have been better for the mother to have attended those appointments and exams, and instead argue for alternative treatments that the family may have felt comfortable with.  Or perhaps to discuss the protocol to follow up for potentially dangerous side effects during the treatments.  We will never know.  Therefore the Connecticut Supreme Court ruled against the rights for anyone to want to protect their own body.  A different article completely, this will have profound implications for everyone.  But still, no one is talking about the actual care of the girl, and that does not mean forcing her against her will to go through a treatment that is toxic.  Chemotherapy is toxic.

The mother’s attorney, Taylor argued that both Connecticut courts and the U.S. Supreme Court have previously ruled that a person’s right to “common-law bodily integrity is a fundamental right,” and that right “exists in the minor the same as it could in an adult.”  Clearly, this is no longer the case.  As the attorney then stated, Cassandra C. has the maturity to drive a car and donate blood, but not decide what is best for herself.

To date, the treatments are having success as she is mid-way through her treatments.  And there are pros and cons should that treatment stop.  To ease up on the attack of the disease could result in remaining cells to build immunity against returning to the treatment process, or perhaps even cause the cancer to become even more aggressive.  The treatment plan at that point would need to become even more aggressive and more risky, involving cell transplants which carry their own risks, but also higher doses of chemotherapy prior to the transplant.

Today, as reported on the web site firstcoastnews.com: http://www.firstcoastnews.com/story/life/people/2015/01/12/teenager-explains-why-she-dont-want-chemotherapy/21633579/

“The 17-year-old says she is worried about what she considers risks, including heart defects, organ damage, and digestive problems.  These are legitimate concerns for anyone going through any cancer treatments, and I will personally attest in the treatment of Hodgkin’s Lymphoma.

“I entirely understand that death will be the outcome without the chemo,” Cassandra wrote to ABC News affiliate WTNH-TV from Connecticut Children’s Medical Center, where she has been living and getting treatment. “The doctors have made that clear.”

Ultimately, do we, you and I, the government, have the right to tell this family what to do?  Seriously, how should our opinions matter in this?  There is a hope, among many readers of Facebook, blog, and other media resources, that somehow, we might convince the family that they have support, now nationwide, to get cured of a deadly disease, to be one of the 85%.  But this is only of value if solutions are offered for the problem.  As of these news reports, there are no solutions.  Right now, the  only winner is the Connecticut Supreme Court.

Commentary

I am a 24 year survivor of the same disease Cassandra C..  And now that she has gone through her treatments, hopefully she will be closely monitored for the potential late side effects, that could develop.  I have well over a dozen serious diagnosis of late side effect, with at least six of them potentially life threatening, all caused from my “cure.”  My initial response to this story shocked many of my readers as I answered the ultimate “what if” question, “would I go through it again?” and my answer at the time was a definite “no.”  I have had a few days to think about my knee-jerk answer, and while not uncommon for someone in my spot to make that comment, it was unusual for someone like me.  All that was disclosed to me as far as potential side effects would be pericarditis (an inflammation of the heart) or a secondary cancer.  At that time, it definitely was worth the risk for a 23 year-old.  But had I been told, that I could face a fatal heart attack, stroke, restrictive lung disease, and many more… I would have said no.  This came as a shock to those who know how much I love my daughters, who clearly would not have come into my life had I chosen not to go through treatments.  Admittedly, I am going through a different kind of traumatic and stressful period right now which definitely had an impact on my thought process.   I still believe it is not an easy decision to be faced with.  But I also believe STRONGLY that MORE NEEDS TO BE DONE not just in a better and safer treatment regimen, but a better protocol to follow up for the development of the side effects.  And yes, if my daughters were to face any situation like this, I would have fought treatments until I could make sure that EVERY one of our concerns was addressed and dealt with, and only then with close surveillance would I allow it.  But it is my child’s life, and we have the right to protect our body to the best ability, not just what is cost effective.

Bloodwork is done throughout the treatment plan to make sure that bodies are going to be able to tolerate the toxicity of the treatment before it is administered.  But other than a base-line study, no other testing is done on potentially affected body organs and systems until most likely months following the completion of the treatment.  The fact is that one of the drugs, used successfully for the treatment of Hodgkin’s for decades, including me, can result in congestive heart failure.  And medicine knows that it can be detected as early as the first treatment and how to do it, yet it is not.  For the small percentage of patients who face CHF from the drug, the patient will endure permanent damage as they get to the end of the treatment plan.  But there is no follow up for this.  Why?  Because medicine feels it is not cost effective for the small amount of people that could face this.  Admittedly, my cardiac issue is not solely related to that very drug.  But there still was no monitoring me until 2008, nearly 20 years after I was diagnosed.  So you can see where my stance is… better follow up protocol during treatment, along with better and safer treatments, and I believe an incident like Cassandra C.’s situation would possibly never happen again.  But do not take my word for it.

Here is commentary from two guests on this post.  The first is from Wendy, a fellow long term survivor with a different outlook on things, that I can clearly understand and actually support.  The second will be from Josephine, the mother of Michael who I have written about on a couple of occasions, including earlier last week.

Wendy (this is a quoted response from a post on a Hodgkin’s related FB page)

“Each time I sat down in the “chemo” chair and had my IV started I prayed out loud to God. I thanked the many patients who went before me and were the “human guinea pigs” who made successful treatment of Hodgkins Disease possible in 1987 when I was treated. I thanked God for making humans smart enough to become scientists and thinkers who could solve some of their own problems like diseases. The progress made up until that time did not benefit those who were a part of the learning curve and died while discoveries & advancements were being made. That progress benefited “the next generation or group” to be treated. Zofran was not available as an anti-emetic when I was treated so I vomited my guts out! In 1991 the FDA approved Zofran and patients had something to help with the nausea and vomiting. I just missed it by 3 years. That is how quickly things can change. Therefore I think this young lady should consider all of us who endured the poisoning from chemo, the burning from radiation, and now the latent effects and repercussions from those treatments. Yes, some of us are still alive, and many are dead. This young lady should look at the history of treatment, how far it has come and also should consider patients still die from Hodgkins Disease! Perhaps her generation cannot endure anything that isn’t painless and does not involve immediate gratification! This is a long haul journey when you embark on beating back any cancer. It is not always “one and done.” WE are acutely aware of what would have happened if we did not have the fortitude to stick it out. I, for one, would not have had the last 27 years of life! That means I wouldn’t have married my awesome husband and given birth to two sons who are now 18 and 20 years old! My 3 years of diagnosis, treatment, follow up were worth it! The young lady who is refusing treatment may never know what she is missing in exchange for making it through treatment. She may never know her future husband, children. Her Mom, who is encouraging her daughter to refuse treatment, may never have the joy of grandchildren who might have been here if only her daughter could have endured something unpleasant. Yes, this is long, my last thought is that is is an insult to Hodgkin’s patients, dead and alive, who paved the way for her to have an 80% chance to succeed and live. I usually don’t say too much on our site. Now you won’t hear from me for a month or two! Thanks for reading!”

Josephine

Her 24 year-old son died as a direct result of the drug that has cured so many of us Hodgkin’s patients.  He died from complications of CHF that no one, including his oncologist, his mother, nurses, even Michael could ever have known would happen.  But I took the opportunity of this topic to ask her a question that should have been responded with an obvious answer.

“Josephine, did you have any idea that serious heart complications could have developed from the one drug?”

“No.  I have the paperwork, and there is barely any mention of the seriousness of heart complications.”

“So then, knowing what you know now, would you have allowed your Michael to have undergone the treatment?”

Me personally knowing what her son went through from the time he went into CHF until the day he died, and the quality of life issue faced by Michael and his family, her initial answer surprised me.

“Yes.”

And then she followed up… “though I would have made sure that they followed Michael more closely had I known.”

Final Comments

The facts speak for themselves.  Hodgkin’s, though a rare form of cancer, is still one of the most treatable, when it is caught early.  It is going to be one of the most difficult decisions to make, if a patient is completely informed.  But the doctors have to be completely honest about the risks instead of being worried about delays from having too much to think about and taking too long to think about.  Doctors need to make sure that every one of a patient’s concerns are answered, and if those concerns cannot be addressed, then it needs to be left up to the family, and not a court, legal or of opinion.  And finally, WE NEED A PROTOCOL TO FOLLOW UP ON BODY ORGANS AND SYSTEMS THAT HAVE EVEN THE SMALLEST OF POTENTIAL TO DEVELOPE A SIDE EFFECT FROM A DRUG WITH A HISTORY OF CAUSING SUCH DAMAGE.  It is unacceptable to say “it is not cost effective” to monitor for potentially lethal side effects even if they only occur 1% of the time.  Only when a patient and their family is convinced that medicine will do all it can to protect the patient, will a situation like Cassandra C.’s will have a chance of being prevented from happening again.

For me, while I am glad that Cassandra C. is being treated, I am sorry that her rights to refuse treatment were violated.  I do believe in the ability to cure Hodgkin’s… I am proof that it can be done.  But I am also proof, just as Michael and Wendy, more needs to be done with surveillance to prevent tragedies and serious side effects.  Cancer patients are now being followed up more closely once done with their treatments, but more needs to be done, both during and after treatment.  Costs to deny the proper protocols and follow ups, will never equal quality of life.

And now it is your turn to comment.  I will publish your comments as long as they are constructive and supportive as this blog is intended to do.  Simply reply to this post for publication.  Please feel free to share this post.

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8 thoughts on “When The Cure Might Just Be Worse Than The Disease

  1. Paul you are right the patient needs to be more informed of,the side effects for me I was lucky and have none it will be 20 years since I had my stem cell transplant but if I had to do it all over again I would do it for me it’s about living and seeking the good like winter spring summer and fall and all the little things I never noticed before I was sick my husband laughs at me because of the excitement I feel when I see those little things in life but that is just me I guess. All I know is that I would of missed out on a lot if I didn’t take the treatment. I guess I am not ready to cross over to the other side I believe I was kept here for a reason.

  2. Paul, when I was diagnosed with Hodgkin’s in 1978, the only goal I had was to get over that disease, which meant chemotherapy and radiation. I wasn’t told of future problems from treatment, perhaps they didn’t know enough about that till later. I had a terrible rough doctor at first, till I changed to specialty hospital where I got the best known treatment at the time. But treatment was rough. And yes there are long term effects which I had no knowledge of. Even today few doctors do know the possible long term effects from such treatment years ago, unless they are in those specialized fields. Do I wish I had been informed as to potential late effects sooner? Yes. Was there a good method for that information to get to me? No. And that needs changing. My regular internist simply didn’t know or he would have been monitoring me. We need better long term care.
    This year I was diagnosed with another cancer, and the way doctors treat me is light years different than in ’78. I have been informed every step of the way of potential problems from treatment. Sometimes it’s been positively scary to contemplate but they let me know. Along with what they can do to mitigate those problems. Fortunately now, there are good medicines that have prevented vomiting completely for me. Fortunately there are other things they do to help prevent nerve damage. Fortunately I have a cardiologist following my case… and much more.
    I hope Cassandra has doctors as compassionate and kind and gets the best of information available today. Medicine has a long way to go, but the flow of information from doctor to patient is so much better now. Today I am part of the team doing their best for me. Rather than an object to be cared for as it was all those years ago. For me, medical treatment trumps cancer any way you care to calculate it.

    I love life. It’s been fun. And I wouldn’t have the option of complaining now had I not had treatment in 1978. Life is hard, but it’s worth every single bit of misery it took me to get here. I wouldn’t change any of it. Even knowing as well as possible what I am up against now, I choose to have the best of days that remain for me, which means treatment for cancer.

  3. Judy D'Antonio on said:

    Paul,

    My story is similar to yours. I was 22 when I was diagnosed with Hodgkins stage 2B in 1978 and at the time I was treated with 4000 rads of radiation–from my neck to my pelvis. I never questioned the treatment protocol. I didn’t want to die and trusted my doctors to make me better.

    I sometimes fantasize about having a conversation with my former radiation oncologist who treated me back in 1978. I want to ask him so many questions! “Did you know this was what would happen?” “Would you do anything different if you could go back in time?”

    I write this as I lie in bed unable to move much because of all the machines that I’m attached to –machines that keep me alive. First there’s the feeding tube which has helped me (over the last 6 months) go from a sickly 82 lbs to an acceptable 102 lbs. My digestive system no longer works properly and eating is a difficult and stressful ordeal (choking and always feeling full/nauseous)– my liquid food keeps me alive. Then there’s the AVAPS machine which involves wearing a full facial mask that blows air through my nose/mouth to force my lungs to work properly. My lungs(due to the massive radiation) no longer have the strength to expel deadly carbon dioxide and if I don’t use this machine the carbon dioxide takes over and I lose consciousness and eventually stop breathing. And finally there’s the oxygen. When I lay down my body simply doesn’t get enough oxygen so I need to use supplemental oxygen in order to breathe–in order to wake up in the morning. Ah –waking up! My face is creased all day with the deep markings of the facial mask, my stomach is hard as a rock filled with air from the air pressure of the AVAPS machine. The liquid food rectifies the rock – hard belly though—daily diarrhea is the fun result.

    Would I do it all over again? I don’t know. I look at my naked body in the mirror–at my atrophied upper body, where you can count every rib. I look at my neck which juts out front ways rather than rising straight from my shoulders like healthy bodies normally do. I look at my flat chest where 2 breasts used to be–no longer soft to my touch–just hard rock – like. And I think to myself–“these are my battle scars” This is the price I had to pay.

    Would I do it again? I’d like to say no–knowing all that I know now. Knowing all the pain, all the testing, all the indignities that I’ve had to endure. But realistically I know I would do it all over again because of what I’ve gained. I have 3 wonderful children who have been amazingly supportive through all my ordeals. I have caring and wonderful friends and family who would do just about anything for me. I enjoy life and the people in my life. I enjoy watching sunsets and seeing rainbows. I enjoy watching my niece play soccer. I enjoy the beauty of a soft falling snow. I would have missed all this if I had refused treatment.

    I stopped breathing this summer while I was hospitalized and they had to ventilate me. I was on the ventilator for 4 days. I realized then how much I wanted to live. Sometimes you don’t realize how much you have to live for until you’re threatened with losing it.

    With all that said, this was MY choice. I feel strongly that the state of Connecticut has overstepped their bounds though in the case of Cassandra. To force someone to undergo toxic treatment is wrong. The state of Connecticut won’t be around to fix things for her when she starts having after effects. When she needs to come up with the co-pays for the follow up visits or explain to her boss why she needs the time off for dr. visits or medical appointments. It’s a lifetime commitment dealing with the “cure”. I believe at 17 that she is old enough to decide for herself whether she wants to subject her body to that abuse.

    Thanks for listening. Judy

    • Judy, such a heartbreaking, but as I know who you are, an all-too-true story. Thank you for sharing. And I hope your comments help everyone to understand both sides to this story.

  4. carol mcmanus on said:

    Paul,thank you for spreading awareness of this case,and for your powerful and emotive blog.
    as somebody who has lived over 50 years since extensive cancer treatment as a child,
    like you I was very powerfully driven to write to the media when a similar case to C’s was highlighted in the UK press.Again cancer treatment was forced on a child against the wishes of a mother who had done a lot of research on possible late effects.It was I believe a very black day for medicine.When follow up care in so many reported cases to us is so often virtually non existant-and the late effects can be so profound, then this I think is a very bad court ruling
    .One of the greatest skills in medicine is surely to listen to the patient.What happened?Why is there far better follow up of monkeys in a research lab,than the human survivors of these experimental cancer treatments,if the goal is to improve health?So many survivors are left around d the world with no follow up whatsoever,yet at risk of possibly profound health consequences
    the mother of a young cancer survivor reports her young son tells her often there are worse things in life than dying
    Cancer medicine needs to massively overhaul cancer after care,and until major changes are made at every level,then decisions like this C court case seem to me to be totally wrong

    • Carol, we have known of each other a long time. And I think we will both agree, that in just the time that I have been on the ACOR list, a wonderful support network of survivors just like us, there has really been no progress in the help for survivors battling late developing side effects. Post care follow up is now better for new patients, but for those like us, there are far too many that do not get the help they need.
      I am hoping my blog someday changes that.

      • Paul I did not mean my response to come across as so negative.I was very concerned at that court ruling.Life would be so much easier for us survivors if there was much more acknowledgement of the late effects that can occur.Until that happens,until there is much more follow up of survivors, to improve care for the future patient,then I think cancer medicine moves backwards

      • Carol, your response was not negative at all. The fact is, the court ruling has major implications for everyone, with or without Hodgkin’s.
        But you are spot on as far as the lack of help for cancer survivors, and medicine going backwards until it is more regularly recognized that we need help.

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