Lung Cancer/ speaking to my kids

Portal Forums Coping With Cancer / Social Work Coping Strategies Lung Cancer/ speaking to my kids

This topic contains 14 replies, has 8 voices, and was last updated by catdander forum moderator catdander forum moderator 2 years, 2 months ago.

Viewing 15 posts - 1 through 15 (of 15 total)
Author Posts   
Author Posts
May 14, 2015 at 3:21 am  #1269538    

aliciauk

Hi there, I think this issue is probably outside the focus of this fantastic site, but I wondered if there were any psychiatrists or psychologists on Grace or any plans for such. I have alk lung cancer, on zalkori for 2.5 years with a little recent progression. Because I am well and hope to do well for a considerable time yet, we have not told our now 17,15 and 13 year old children that my cancer is incurable/life limiting as we felt it would be burdensome for them to live with this knowledge for possibly several years – Neither have we said I will get better, but because I am well, they assume my illness is not a serious problem. They are happy and thriving. I would appreciate the perspective of a psychologist/psychiatrist who has experience of working with families such as ours on this withholding of information by us. Because we have not told the children I am incurable, we have told very few adults this either as we are very mindful that it would not be right for them to find out accidentally. Thank you Alicia

May 14, 2015 at 10:08 am  #1269548    
catdander forum moderator
catdander forum moderator

Hi Alicia,

Thank you for the wonderful post. Psychologist/psychiatrist specializing in cancer and terminal disease is a very dear subject for me as well. We unfortunately don’t have anyone who specializes solely in this and has for the most part been put on the oncologist and staff to try and navigate these waters with families.

A little left of topic: Even though it’s been shown through clinical trials that people live longer and happier lives with stage IV nsclc when given palliative care starting at the beginning of diagnosis there aren’t near enough who employ or practice this wonderful service. http://cancergrace.org/cancer-treatments/2010/07/30/is-palliative-care-giving-up/ Palliative care physicians aren’t psychologists at least not normally but I’ll ask our palliative care specialist to comment (if she’s back from maternity leave).

You have nerves of steal and it sounds as though your children are very lucky to be left out of having knowledge that no one can understand anyway.

Janine

May 14, 2015 at 10:19 am  #1269549    
catdander forum moderator
catdander forum moderator

Dr. Harman is still on maternity leave so I’ll ask a nsclc oncology specialist who also has specialized or does specialize also in palliative care.

May 14, 2015 at 10:35 am  #1269550    
Denise Brock
Denise Brock

This is such a great subject, honestly, and one that really could spur a great discussion. I would love to see others – members of our GRACE community chime in. As a child, how have you dealt with the subject matter? as a caregiver or patient, how have you discussed it with your younger or older children?

My daughter was 8 when Melissa passed. Melissa’s daughter was 7. There are so many discussions surrounding this – from how do we deal with the thoughts that mom won’t be here any more, the ‘why’ of this all… and love. there are deep emotions that you don’t even know are bubbling to the surface, and sometimes I found they manifested in weird ways.

I know that sometimes I feel that the position I put my 8 year old in at the time may have been very heavy. She was like the older sister to Melissa’s daughter, I explained that she needed her very much right then, and she was very important in the knowing that everyone is here for her. What I realize now is that I put a lot of responsibility on my own daughter in this – and though I recognized her sadness as well, perhaps I didn’t protect her like I should have.

I look forward to others discussions in this thread!
Denise

May 14, 2015 at 11:26 am  #1269551    

Tom Norkunas

Lucy’s boys (my step-children) are fully grown, we have been forthright that she has stage IV lung cancer. One asked if they have given her an expiration date, I said “No”. Similar with a grown grand daughter, just put it out there.

We have 2 younger grandchildren (3 and 5) and 4 great-grandchildren (3, 4, 8 and 10). We tell the youngest ones that grandma is sick (they see her coughing all the time, and taking occasional naps), but I make sure I communicate to the 8 and 10 year olds that grandma is very sick, that it is as serious as can be. I’ll let them drive the questions when they are ready, but won’t push the information until things are farther along.

All the extended family adults know, although many of them are hoping for a cure. I just tell them the doctors can’t cure this, a cure would have to come from God, and leave it at that. I keep family and friends updated via facebook, although serious info goes by direct phone calls to immediate family, and the facebook stuff is a little less direct.

In my opinion, it’s sounds to me like you are doing the correct thing, why burden them until it’s needed?


Wife Lucy DX stage IV adenocarcinoma NSCLC 11/13, T2AN2M1A. Right lung tumor 3.8 cm, nodes and plueral fluid, SUV 5.2. Pluerodesis to deal with fluids – success. EGFR wild type, ALK-. 4 rounds of carboplatin, paclitaxel and bevacizumab, tumor 2.7cm, stable. 2/14, started ECOG 5508 bevacizumab arm 2/18/15 progression. 3/3/15, two brain mets, ineligible for Roche MPDL3280A “OAK” trial – stereotactic surgery to brain mets, pemetrexed second line therapy.

  • This reply was modified 2 years, 2 months ago by  Tom Norkunas.
  • This reply was modified 2 years, 2 months ago by  Tom Norkunas.
  • This reply was modified 2 years, 2 months ago by  Tom Norkunas.
  • This reply was modified 2 years, 2 months ago by  Tom Norkunas.
May 14, 2015 at 11:29 am  #1269554    

Dr Ramchandran

Dear Alicia,

Thank you for your thoughtful post and sharing a bit about your family. As a medical oncologist and a palliative medicine physician at an academic medical center we quickly recognized the need for experts in the field of anticipatory guidance for children, and bereavement work. We partnered with our children’s hospital and are working with their child life social work team. They work with parents at Stanford to do counseling specifically on this topic- when and how to talk to children based on their developmental needs and personalities. I am curious to see if you have an anticipatory guidance program at your health center? A palliative medicine team would also be helpful.

Some basics that I have been taught from my colleagues on our anticipatory guidance team include

1. Direct, honest information with space for questions
2. Emphasis on asking questions directly to you, rather than googling or asking friends
3. Setting up a counselor or support person whom the child identifies with so they have another safe space

I hope this is helpful. I am glad they are doing well am wishing the best for you.

Warmly,
Dr. Ramchandran

May 14, 2015 at 12:28 pm  #1269555    

wadvocator

Hi Alicia,

I can only share from experience…..

If I read your communication correctly, you are asking 3 things:

1. Should the children be told?
2. How should they be told?
3. Once told, what are the best ways to support them?.

We learned of my wife’s diagnosis 4 years ago when my children were 21 and 19 and both in college. They were getting close to finals and we didn’t want anything to distract them from. We know that we eventually will have to tell them but we want them to be home for the month long Holidays before telling them so that we can support them on the initial impacts and answer questions and hold them when the message sunk in.

My wife started treatment and side effects totally caught us off guard and we ended up calling 911. The medics were running up the stair while my wife was lying in bed telling my daughter that she has lung cancer. To say it was one of the worst day in my life would be an understatement. On that very day, I also learned how strong and capable my daughter was. A couple of years later, I asked both of my children about delaying in communication with them. Both of them informed us they knew something was not right and wish we had told them sooner rather than later. We learned that our children were emotionally stronger, and more resilient than we give them credit for. We have grown stronger as a family and we went beyond “why? (which there is no answer) to being proactive. Among many things, the educational information from GRACE is one mean for us to be proactive.

One question I have been asking myself is that when we made the decision to hold off in telling our children, am I really protecting myself or am I protecting my children? My conclusion is that after the children reached certain age, we have to treat them like the young adult that they are!

May 14, 2015 at 4:07 pm  #1269556    

aliciauk

Thank you all for your thoughts on this topic, it is really helpful to hear others’ experiences, we do not have an anticipatory guidance program at our health center which is quite small ( I live on a small island off the coast of England), however I have requested my oncologist to refer me to such a program on mainland UK and I should get an appointment in a few weeks, hopefully this will help me decide if I ought to tell the children at this early stage that my illness is life limiting. I am very interested to hear what other people in similar situations have done and hope that more people might share their experiences and how it has worked out in this thread. Thank you, Alicia.

May 15, 2015 at 7:52 am  #1269558    
JimC Forum Moderator
JimC Forum Moderator

Hi Alicia,

Since Liz and I never had children and didn’t face this issue, so far I have not posted in response to your thought-provoking question. But having read the excellent responses you’ve received from the wonderful GRACE community, I have a few thoughts.

First, it seems to me that your kids know you have cancer and are old enough to know what that can mean in terms of limiting life. They have access to the internet and have probably done a bit of research on their own, and may have discussed it among themselves. So unless you develop more significant progression, I don’t really see the need to suddenly tell them that this may be life limiting.

To me, the most important positive aspect of a cancer diagnosis is the way that it reminds a patient and their loved ones how precious life is and that each moment together must be savored and appreciated. During Liz’s battle with lung cancer, each beautiful sunset, each smile and laugh we shared took on an added depth of meaning. Perhaps you can find a way to impart that feeling to your kids without scaring them into thinking something has changed. Something along the lines of “none of us knows how long we have, and when you have cancer it makes you realize that even more, and appreciate each day”.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

May 15, 2015 at 11:37 am  #1269560    

wadvocator

I agreed with Jim’s second point and also want to provide additional perspectives to the first point.

Yes, our children did searched the internet for information. Without in depth knowledge, the unfiltered information from the internet can be scary, intimidating, and a loss of hope. Both of our kids were really upset after rounds with the internet. I was a few months ahead of them in learning and also had the opportunities to ask our oncologist in SCCA a lot of question to steadily get a whole picture. I was able to guide them to steadily learn and connect the dots medically. They also went with us to oncologist visits to learn that we are in a best scenario of a difficult medical situation. Data is not power, the right information is. This process is a critical part of acceptance and how to move forward. The point I am making is the importance of structured learning and engagement vs. sheltering. That part of the process was important for me as well as our children.

May 16, 2015 at 3:08 am  #1269563    

aliciauk

Thank you, I will post once we have spoken with the anticipatory guidance program, to share what we learn which might possibly be helpful to other users facing similar parental issues, Alicia

May 18, 2015 at 8:47 am  #1269578    
catdander forum moderator
catdander forum moderator

Alicia, I hope you feel good about the info you get from the anticipatory guidance program. Dr. Harman contacted me though still on leave and suggested the following book. May…”include some helpful references used by our peds bereavement program that can may have some useful chapters:
Raising an Emotionally Healthy Child When a Parent is Sick by Paula Rauch”

Too I wanted to add from my own experience as the youngest child of 5. My dad died of cancer when I was 11, other siblings were 12, 15, 17, and 19. We didn’t know until 4 days before he died. It was 1970 and his cancer was not diagnosed and nobody knew except my dad and his doctor and they only assumed. So circumstances were different. He’d been sick for a year, in and out of the hospital and at least 2 surgeries. When we were told the idea was so foreign to me that I didn’t even get it until the end of the conversation. Your children are older and much more sophisticated but for me at 11 in 1970 I think I was much better off not having to try to imagine what might be ahead.

A note about denial and how well it can work for some: My sister on the other end of the sibling chain was 19 and in nursing school. She was working on the floor with terminally ill patients, my dad was on that floor and my sister didn’t know his health wasn’t going to improve. She remembers daddy “looking at me like I was an ignorant child when I assured him he would get better after surgery”. She still finds if especially fascinating that she was in such a state of denial. The following link is on the subject and the comments that following are also a must read. http://cancergrace.org/coping-with-cancer/2009/04/29/denial-coping-mechanism/

Everyone is different.

Janine

May 19, 2015 at 9:48 am  #1269598    

lionsole

HI
I have terminal colon cancer an was told in 2013 that I had a 5% chance to live 5 years, with a swing range of 1 to 2 yrs already gone, depending on how long my lymph nodes had been spreading the cancer thru my body. My doctor told me due to that , I would be highly lucky to see my 40th birthday, I was 37 at the time, an 39 right now. Due to that thought I had to make some tough choices, the main being telling my 11 yr old son, that I was dying an had a high chance of not being around to see him become a teenager, let alone a young man. An so, last april, 6mths after I was told by my doctor an a couple second opioions from others, I told my son. He took it very badly at first, but with counseling from weekly visits with a family therapist, we now have talks about it. He asks questions, asks about my doc visits an enjoys the time we have left to share. It might have hurt him, but I feel that knowing is better than hiding the truth an letting them get hit blindside with the truth..Just my opoion…Please forgive my grammer an spelling

I do love this site an all the advice an ideas I have read within them
Thx

May 19, 2015 at 10:32 am  #1269602    
catdander forum moderator
catdander forum moderator

Thank you so much lionsole for your post. I can’t imagine there is a right answer here, but I do believe there is a great amount of help in discussing it.

When I was a kid we didn’t have access to any type of counseling. I’ve learned later in life counseling can be very cathartic. I think it just shows how difficult a decision this can be. I wonder what you think of Alicia’s situation where she may feel well for, really years isn’t too much to realistically hope for. As the children move into adulthood…does that change. Is it too much to ask for support from your children to share the burden of knowing. (sorry my question mark is on the fritz.) I don’t think so but there is a level of emotional maturity that parents usually have an good window into about their children.

More rambling,

Janine

May 26, 2015 at 8:10 am  #1269957    
catdander forum moderator
catdander forum moderator

Alicia, I received a link from Dr. Harman that she thinks may be relative to you situation.

From The New York Times:

Thanks to a 4-Year-Old, a Laugh Stronger Than Death

Silence doesn’t protect our kids. It steals their chance to say goodbye.

http://parenting.blogs.nytimes.com/2015/05/24/thanks-to-a-4-year-old-a-laugh-stronger-than-death/?mwrsm=Email

Viewing 15 posts - 1 through 15 (of 15 total)

You must be logged in to reply to this topic.