Talking to kids about melanoma

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6/20/2014 11:24am
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Replies: 10

Hello all,

I'm newly diagnosed and am waiting for my WLE / SLNB.  At this point, I'm waiting to find out if my stage is 1B (based on Breslow .96 / mitotitic rate 2) or 3 based on results of the SLNB.  I am in a reasonably good frame of mind, but am obviously suffering through the waiting like many of you have experienced. 

I have three children, ages 11, 13, and 17.  I haven't told them anything yet, but would like to be as honest as possible just before the surgery.  I can't see any reason for them to have to suffer through this waiting period along with me, and right now, everything is "business as usual" at my house.  

My plan is to basically present the situation as if it's definitely 1B.  Meaning, "Mom will have surgery to remove some tissue. I'll have a recovery period. We'll all move on." My thought on this is they really don't need to know about the possibility of a stage 3 diagnosis until it's right on top of us.  I will have a separate, private discussion with my 17 year old, who is very likely to search the internet.  

This is a very difficult situation, because nobody wants to have to say the word "cancer" to their children. 

I would be very open to hearing how any of you have handled this in the past with middle school / high school aged children.  I believe in being honest in an age-appropriate way....but this is not something I have ever thought I would have to handle.  

Thanks in advance for your thoughts. 

Best, 

Elaine

http://melanomadame.blogspot.com/

I think what you are doing at this point is enough. I have a 5 year old daughter and two years ago, at the beginning of my adventure we talked about the different procedures that I was having. It is kind of hard not to talk about the tube that was sticking out of my arm pit after the Auxillary node dissections. I had both arms done in 2012. I hope your results are clear and you stay at stage 1. 

My wife and I struggled with how to tell our 14yo daughter about Dad's condition.  But at 14 they are already very aware and at least mine can easily research the internet for information.  After 3 surgeries its impossible to hide what's going on.  My approach was simple, and designed to be the least disruptive to her life, and it was just "be normal".  I mean after all three surgeries (yes tube hanging out of your chest cavity and all) I got up the next morning and drove her to school like I would everyday.  But there quickly came a time, after I went unresectable stage 4, that we had to make big decisions which included selling our home, where she grew up.  We sat down together and shared (what she already knew) that I had cancer and it was serious.  We explained that the main thing is we would be together.  Yes we would downsize...drastically.  But we would end up more financially secure and we promised she would stay in the fantastic (private) school she attends.  Creating stability is what's most important.  Really the only thing she wanted to know was "am I terminal".  I could only answer "maybe".  The main message is kids are really smart, and incredibly resilient.  I don't know what the future holds, but I've created an environment of stability, and kept everyday life absolutely as normal as possible.  I think that's the best we can do when facing uncertainty.

5dives - (6/21/2014 - 10:19am)

Thank you for sharing that with me, Polymath. I agree, my older kids are very sharp and will quickly hit the internet. I'm very sad about what they are going to find there when they do that, because as you know, the internet can be a very gloomy place.  I appreciate you sharing how honesty was the best way to proceed in your family.  I will take that as inspiration when we tell our kids after I have my surgical consult visit.  

All the best in your current and future treatments. 

Elaine

Hi Elaine,

I was in your shoes in 2003, with a primary skin lesion, followed by sentinal nodes (1 positive) followed by complete lymphadenectomy, etc.  My kids were 10 and 12.  My husband and I presented the situation to them as honestly and realistically as we could.  They weren't dummies and were going to figure things out anyway.  Additionally, just like the rest of us, the "unknown" or "unexplained" can frighten children more than the truth.  Without being told explicitly what is going on...their imaginations are free to run wild with fears that may be even worse than the truth!  I also met with their schools, teachers, friends and family and enlisted their help in keeping a watchful eye over my children....to help me know if their affect, grades, emotions were changing in ways and in places that I was unaware...to be the ear and shoulder to listen when they wanted to ask questions or acknowledge being afraid.  It is hard for children to let their guard down with the parent they think they need to be strong for.  It has not always been easy by any means. But, we have all made the haul together and been there for each other.  The only time they have ever been argry with my handling of "melanoma" was in 2010 when both kids were away at school, getting ready for finals. After several major surgeries, that they knew all about, I found that I had melanoma on my tonsil and needed a tonsillectomy (of all things!!!!).  I just couldn't bear to tell them on more "bad" thing...and heck...I'd been through worse, right???  So, tonsillectomy on Friday (I think it was), back to work on Monday.  When I told the kids on their break between semesters, the hurt and anguish in their eyes, told me all I needed to know.  They could not believe I hadn't been honest with them.  It was a mistake I have never repeated.

Hang in there.  It isn't easy.  But kids are tough....and SMART.  And while how much you tell and the details involved certainly depend on the child's age and personality....I think telling the truth actually prevents worse fears developing and allows the family to pull together better, as a solid, well loved team.

Yours, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

Celeste,

It's startling how close the beginning of your journey is to where I am right now, so thank you so much for your thoughtful response. As I read your response, I saw my two boys, ages 11 and 13, on the couch next to me, and I could very clearly imagine your kids, ages 10 and 12.  Your primary lesion and mine are very similar, and I know that I must face the possibility that my nodes will not be clear, as yours were not. I read your profile, and I have made a decision to be a little more honest and forthcoming with my boys than I was planning to be. They (and my husband) are a strong team, and I am lucky to have them ar my side. 

As a mother, I do not want to hurt them. I know my news can only cause them pain. 

Hardest thing I've ever faced in my life.

Thank you for sharing with me. All the best to you.

Elaine

Anonymous - (6/22/2014 - 8:06pm)

This is certainly a tough question as everybody's situation is different. I have a 16 year old boy and a 13 year old daughter and in my case I chose not to tell them (13 and 10 at stage 4 diagnosis) as I didn't want to spoil the magic of their childhood just yet. For me it was the right decision as my treatments have kept me going strong since my stage four diagnosis in summer of 2011.  I had a left lung wedge resection done and recovered during the second week of a two week vacation. The SRS/cyber knife treatments were not an issue although the second round had some hair loss but I grew it longer and pretty much covered it. It was ski season so wearing a ski hat was pretty much the norm. The later brain surgery discussion was fine discussed over dinner. I chose to say I was having some headaches from a pressure spot inside my skull but I was having a procedure that would relieve the pressure. Was in and out in 2 days. Those staples were a bit more visible but less than I expected and after wearing a ball cup for a week or do the staples were removed. I got lucky on this as the surgeon lifted a flap of scalp for access and then laid it back down like sod.  I go in this Tuesday for a likely single zap of SRS for a spot that developed between the brain Derma and the skull. Outpatient procedure and it will be a quick in and out. Life goes on normally in our home and my kids along with their Mom  will joke about Dads attention span or occasional memory lapse but every day that passes and I hear another day of innocent stress free children's laughter makes my deceit by omission the right decision for us.  I am hopeful I beat this disease back into submission and in the event of it accelerating I would undoubtably revisit my decision but until then I live life and remain determined not to let this disease define who I am and cast a shadow over my children's memories. 

Such a personal decision, but I'm glad to see you're seeing a variety of perspectives, none better than another, just what's right and what worked for individual family situations.  My daughters were 13 and 16 at my diagnosis, and within 10 days, I was staged at Stage IV.  My wife and I chose to be as forthcoming as we could, knowing that we couldn't keep it 100% secret, and with our girls, their curiosity (and anxiety) would run wild and ultimately lead to more misinformation.  When we didn't know the answer, we said so - especially to the big one that (of course), the younger one asked first: "Are you going to die?" Funny how a question that I asked myself from the first phone call from the doctor had such a bigger impact when hearing it from my baby girl.  But I was prepared to hear it and honestly said that I didn't know but that we were going to do everything we could to fight.  We didn't know what would happen next week, month, or year, but we would be open with them.  We also told them that if they ever felt like there was something they didn't want to know, that was O.K., too, but of course to ask any questions they had of us and make us their information source (not Internet, friends, etc.) We reached out to teachers, friends, church, etc., those who knew the situation, and asked them to be on the lookout for changes and communicate with us, while not singling the girls out or making excuses for changes in academic performance, social stuff, etc.  While not new to us, we continued to make sure that each of them had one-on-one time with both my wife and I, recognziing that what they might say to one parent, they might not say to the other (especially "the sick one"), or might not say in front of their sister.  We committed to trying to keep things as normal as possible throughout, but also said there would be inevitable changes - the uncertainty extends to everything, including finances, so we said we'd all be making sacrifices.  When I was in the TIL trial at NIH, Bethesda is 3 hours away from Philadelphia, so over six months, I was in the hospital for a total of about 8 weeks.  We have very little family locally, but my mother and sister-in-law travelled a couple of times each to stay with the girls during my hospital stays - it was during the school year and allowed them to be at home.  Lastly, we tried to instill in them that our expectations about school and responsibilities were the same.  If they were struggling, we'd deal with it, but they had to let us know, and there wasn't anything they couldn't come to us with.
 
Four years on, and like us, they've grown, too, 17 and 20, with the one off at college and thriving, the other one getting ready for her senior year of high school.  Our fight, and they understand it was our family's, not just mine, has influenced so much, including our daughter's choice of college and location.  I'm proud of how they've managed and while we never would have chosen this path for them, they're stronger for having followed it.  And I still can't give them a better answer now to "that question" they asked me then.
 
There isn't a perfect answer, only what's right for your family situation, perhaps your faith, and what you know about your kids, but again, I think there are some great responses in this thread.
 
P.S.  Not trying to equate kids and pets in any way, but...  pet owners may understand, though.  Our two cats went through some terrible behavioral issues starting not long after my diagnosis.  People stopping by with meals, new faces, different schedules, us being away, etc., really through them off to the point they weren't using their litters (among other things).  Come home from the hospital to the smell of fresh cat urine in the carpet, just amps everyone up.  Ultimately, both cats ended up on Prozac, and they got through it, too.
 
Joe
 

Hello,

I really am so touched by the honesty and thoughtfulness of the members of this board.  This is not a place I ever expected to be and certainly wouldn't have wished to be, but I know I'll be better for interacting with the other fighters on this board. 

I have never had to struggle with anything like this before.  I'm trying to be as thoughtful as possible, not rash, especially in dealing with my children.  Parenting is hard work, and I'm ready for the work. 

Thank you for your responses.  I am considering all the different angles.  I have my surgical consult tomorrow, and I'm hopeful that learning the date of my surgery might alleviate some of this seemingly unbearable stress.

Thanks again to all of you,

Elaine

RJoeyB - (6/24/2014 - 12:49pm)

Regardless of how you decide to discuss your diagnosis with your children, you're already taking all the right steps in your approach, not only in understanding and dealing with all the medical "stuff", but also the other parts of your life -- and for us parents, that's such a huge part!  For me, the biggest thing was just wanting to know, no matter what happened, that my family was going to be O.K.

Wishing you the best in your consult, upcoming procedures, and tests.

Joe

 

Thank you, all.

My husband and I sat our three boys down just a few days ago and shared the truth with them.  We decided to focus on the fact that the melanoma is believed to be early stage, and that the treatment involves removing flesh from my leg, and hopefully being done with it after that.  Although we did not say "that is all that will happen", we did not dwell on the fact that we have to wait for the results of the node biopsy. 

Since then, they've had many questions and have been supportive.  They have not asked if I will die, but they have had other questions like if I'll be able to run again and what my recovery will be like. 

All in all, I'd have to say it went well and I was so grateful for the guidance from this group.  My surgery is on July 10th, with the nuclear medicine procedure on July 9th.  I meet the plastic surgeon on July 7th to see what his thoughts are regarding the possibility of a skin graft.  I met the surgical oncologist on June 24th, and I am very comfortable that he will do great work.  

Thank you for your support!

Best, 

Elaine