Fill Out Your Profile to share more about you. Learn more...

Advice on what and when to tell my pre-teen

LI77
LI77 Member Posts: 68
edited February 2022 in Just Diagnosed

I just got my biopsy results back on Monday and met with both the MO and surgeon this week. I'm still waiting for HER2 results and I have a PET scan on Monday (which is a whole other can of worms; I am terrified because I've been having back pain since the end of October). So at this point, I know I'm at least stage II with lymph node involvement, and am both ER and PR +. I won't have a treatment plan in place until we know HER2 status.

I have an almost 10 year old son, and he is very perceptive and sensitive. So far, I haven't told him anything at all. I'm just acting like everything is normal. I'm thinking that I need to wait until we have all the information and the treatment plan before I tell him anything, but I'm not sure that this is the best approach. Does anyone have any advice? I'm really not sure how or when to tell him or what to say.

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,730

    Ll77,

    Sorry that you find yourself here. Children are often very perceptive and although you think that you’ve been acting in a normal fashion, chances are good that your son knows that something is amiss. He may not be able to put his finger on it or verbalize it but if he is sensitive then on some level he may sense it.

    There are many books available to help children understand a parents cancer. I believe the American Cancer Society has a list of those resources. I am not big on giving advice because our situations are very individual but I urge you to be open and honest at an age appropriate level. I say this not only as a mother and grandmother but as a recently retired elementary school teacher. I have seen students face many issues regarding parent health. Almost without exception the students who have been dealt with honestly feel far less anxious than those whose families try to keep things hidden. At age 10, your son is old enough to understand a great deal. Again, I’m a strong believer in being honest with our children as long as it is age appropriate. Take care

  • parakeetsrule
    parakeetsrule Member Posts: 605

    Knowing something is wrong and not knowing what it is is one of the worst feelings for anyone to experience. We see it all the time here when people are faced with the uncertainty of not knowing if they have cancer yet or not, not knowing what the treatment plan is, not knowing if treatment is working, etc.

    I agree with the others that most kids know when something is wrong. If you say your son is perceptive and sensitive, then it seems even more likely that he not only knows something is wrong, but that he is already actively worrying about it.

    I think you should tell him the basics and see what questions he asks. That's what my family did with my preteen relatives. And make sure he knows he can talk to you about it because if he has internet access and he feels he can't go to you for answers, he will ask Dr. Google instead.

    I hope you get a clear PET! ♥️

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,730
  • alicebastable
    alicebastable Member Posts: 1,934

    I'd be inclined to talk to him now, but keep it light and un-dramatic. Treat it as more of a nuisance. Try to talk about it while you're doing something else, like if you're both doing the dishes or some other light chore that doesn't take any concentration. That way it will feel less like A Talk and more like just a normal conversation. And if you can interject any humor, or at least smile a bit, that might help.

    Good luck with your son and with the PET scan. Remember when you have it that even if things light up, it can be for benign reasons. I've had a couple and had to have a biopsy after one. It was benign.

  • laughinggull
    laughinggull Member Posts: 511

    4 years ago, I was you, only my twins were 10 years old. I didn't tell them anything until I had a plan in place and I was more confident myself. I also had lymph nodes affected from the get go, didn't know anything about breast cancer and was terrified. The day I was diagnosed, this young man (twenty-something) arrived to my office to start working for me. Once I had a plan in place, I told my coworkers -before I told my kids. Then the young new guy told me that his mom had breast cancer when he was 10 years old. His perspective was very helpful to me. He said: “I didn't know anything about cancer, and I believed what my parents told me: that mom had this disease, was going to be in treatment, lose her hair then get well. That is what happened and she is still alive and well today. It was a normal year for me and I don't have any traumas. I hope that it will be the same for you and for your kids"

    So I tried to replicate that. My husband and I told the kids the day of my first chemo. I went through treatment, kept working, they kept going to school, I kept my life as normal as possible and also theirs. We had more visits from family (my parents) and an extended vacation at the end of the year. They didn't know anything about cancer and we explained it to them somehow at a level they could understand. When they had questions, we answered. Ask the social worker at your hospital for materials on how to talk to kids about cancer. They will help. If you keep things light, their burden will be light too.

    Best of luck. You are not alone. You can do this!

  • salamandra
    salamandra Member Posts: 735

    I agree that you have to talk with him sooner rather than later, because on some level he already knows. What a person's imagination will supply is much more terrifying than the reality (as so many of us experience as adults when we are waiting for test results). On top of that, the longer you wait to tell, the more he supplies his own theories about what he can or cannot trust you to share with him, or what he himself should or should not share with others.

    That said, I think you need to gird yourself and set up a very supportive structure for you, so that you are not dumping fear onto him. Process before and process after, if it helps. Keep the conversation factual and honest, but this is a "the truth" situation, not a "the whole truth" situation. It can be healthy to TELL a kid that you, too, feel fear, it's ok for him to feel fear, and model how you cope with that, but the kid should not FEEL the emotional intensity of your fear, if that makes sense.

    I would definitely both tell him that this is breast cancer and *ask* him what he thinks he knows about breast cancer. He might have some misconceptions that you need to clear up. I would emphasize both that it's a serious adult disease and that you expect to go through some serious treatments that you are still learning more about, *and* that doctors have excellent treatments for this disease, you trust your doctors, and you are planning to stick around for a very long time. You can tell him that you will be having a lot of adult conversations and information and you will not be sharing everything with him, because it's your job to take care of your health and it's his job to be a kid, but that he can always ask or tell you what's on his mind, and you will share as honestly as makes sense. Not sugar coating exactly, but staying focused on the best possible version of the truth.

    If you were getting results tomorrow, I might say to wait. But between the HER+ status and the PET scan, you have a while to go until you'll have clear info and in the meantime, he'll be understanding that something is wrong, so very very very wrong that you can't even tell him about it, there's nothing he can do, and it's too unspeakable for him to even bring up.

    That said, I would also tell him in a place where he can check in and out of the conversation as he needs to, physically even. Ie, not sitting in a moving car or in his room. The backyard or something like that could be great for this. Some kids use movement to help them process or regulate themselves, so it's good to let him have that. Don't do it when he'll have pressure to go do something else after, especially something that might feel stressful for him, especially if transitions are tough for him anyway.

    Hoping for the best possible results for you! Heart

  • lillyishere
    lillyishere Member Posts: 770

    My kids were 11 and 15 when I learned my diagnosis. I processed the news with my husband and we told the kids after 3 weeks of the diagnosis. We set down and I told them that I have some news. My 15 yr old jumped: are you getting a divorce? DH and I said, no, no... I'm diagnosed with BC and you kids should not worry because it is small (I didn't know at that time how much it had spread) and I am in good hands. My 11 yr old got very emotional and I kept telling her that it is very small, and it is under control but I have to go through some surgeries, etc. All white lies to calm down a scared child. My 15 yr old was totally ok. It is been over 2 years and I still have to reinforce my youngest that everything is OK, I do have SE from meds but that's OK because it is keeping me alive. I told HR and my boss at work, and a couple of friends. I'm sure my kids weren't comfortable when they saw me after my BMX and my DH never told me what conversations he had with them but I don't feel it is necessary to worry my kids.

    Good luck with PET scan and handling the conversation with your son.

  • LI77
    LI77 Member Posts: 68

    Thank you, I appreciate all of your advice and support. I think I need to wait until I get the results of the scan back so that I can (hopefully) get rid of some of my anxiety before I talk to him. All of this sucks so much.

  • dres123
    dres123 Member Posts: 45

    My wife and I have a four year old—she was three when my wife was diagnosed. At first we didn’t tell her anything, because she was only three. But then one night, about two-three weeks in, she was acting up and crying a lot. I asked her why she was doing that and she said it was “because she did something wrong and we’re mad at her.” That absolutely broke my heart. We talked to doctors about what to do and they said the best advice is to tell your child and to tell them that you’re in treatment. It was hard to try to explain cancer to a three year old, but I think it was a good decision. She still asks question about things but for the most part she is soldiering on.

    I think kids’ worlds are so self-involved and not telling them can be a hard thing especially if they know something is wrong.

    Much prayers to you and your family. You will get through this.

  • laughinggull
    laughinggull Member Posts: 511

    I agree 100% on addressing your anxiety first. I did that too, thats why I waited a few weeks, and in the end we told them only the day I started chemo. Remember the instructions for the oxygen masks in a plane? You need to put your own oxygen mask first, before you can take care of the kids' masks. Take your time, and take it easy on yourself.

    When we finally talked, we kept it very light and casual -rather than solemn and important; then we answered their questions as they came in the next few days and weeks and months.

    You can do this. Best of luck with the scans. Hopefully the cancer will be contained to the breast and you will be breathing much easier.

  • SandraDublin
    SandraDublin Member Posts: 16

    It sounds like you have a plan in place but thought I’d share my experiences also as have pre teens too, 10 and 12, as well as a 6 year old and also recently diagnosed too @ at least stage 2 with lymph node involved.

    It is just so hard when you don’t have all the facts and details (and I’m still somewhat in this place over 1 month from my initial dx as waiting for bone scan and pathology results post op!). I also needed to take some time to get my own head in place and deal with work first also to start handing over and arrange leave.

    My kids however could tell something was up between minders, appointments, phone calls and a change to the normal plus we were going to have to isolate them from school / friends due to Covid to ensure I could have my operation as scheduled. So we told them I had found a lump and we were undergoing tests and we’d let them know once we had the results, there is a chance it may be cancer and I may need a operation and further treatment. Once my CT done and results came through and operation confirmed we told them this was cancer, the consultant believes this is treatable and outlined at a high level the next steps ahead starting with an op. Books for kids on cancer on hand to talk through really helped to explain and answer any questions, the main one being will I lose my hair :)

    They are doing ok so far, they are indeed so resilient and we’re trying to keep their routine and usual activities as much as possible. Some good advice from others here I’ll also take on board!

    The waiting is just Terrible I know but hang in there andwishing you good results and positive thoughts xo

  • hartnsole
    hartnsole Member Posts: 24

    I was diagnosed on 1/24 stage 2 and it has spread to a lymph node as well. My son (13) was with me when I found out, so he knows. Since I'm a single parent, he's often with me and after getting the news, I didn't really have time to process it all before sharing. As a result, I did get a bit emotional (which he's never really seen before), but he handled it well. I've talked to him about it a few times since and let him know that just like me, whatever he's feeling is ok and that he doesn't have to bottle anything in. He overall just told me that he knows I'm going to be ok and he seems to have just settled on that outcome. I don't believe he's allowing himself to think of any other outcome. I haven't noticed a change in his behavior or any indication that telling him was the wrong choice. I figured he'd find out sooner rather than later anyway since I'll more than likely at the very least have to have surgery.


    I hope you find the right words to share with your child. It seems from your latest reply that you've settled on waiting to get all of the information first so that you aren't as anxious when you talk to him, and I think that's a good idea. I know the waiting can be hard, because I'm still waiting to speak with my surgeon and to go over everything myself. However you choose to tell him the news, he will be ok.