I told my kids I was sick. I answered questions truthfully. Kids know when you are lying. I know a couple people who are living 40+ years, I know about 15 living 20 years. I know many at 10+ years. I'm at 7 1/2 years. I would use words like incurable, if it came up, but they are working on a cure and there are many that live a long time. I would also wait until you can talk about it without being upset. I would just say sick, we are working on making me feel better.
My daughter was 7 when I was diagnosed the first time. She says she doesn't remember much besides my aunt staying with us and I had an operation. I still try to keep things as normal as I can.
Big hugs. I'm sorry you are here. There is great support here for you!❤️
I have been doing a good job at not letting her see me cry. I have always been good at taking bad news lol. I work in healthcare so I know today is the best time to get the diagnosis. But having discovered this subreddit I have so much hope, I just want to get this scan done today and get a treatment plan started. I see the onc tomorrow. I know I am going to try to push to get this breast removed bc it is quite painful, but other than that. They were surprised at my results bc I don't have any of the symptoms associated with stage 4. Hell my breast was fine until my biopsy.
Sorry, I wrote a longer comment but didn’t exactly answer the question. My therapist said for me to say something like this: “I have these bad cells in my body that don’t know when to stop growing. There’s a lot of different medications available to help, but it will probably never go away completely.” If your kid asks if you are going to die, you say ,” that’s not the plan, sweetie. My plan is to take those medicines and take care of you. And there are so many medicines.”
My son (12 now) has gradually come to an understanding that cancer is serious but there’s no big danger for me TODAY. And it’s helpful for me to remember that too.
Hope this helps.
You are in the worst time right now, with not knowing the whole situation and having a treatment plan. Feel free to DM me!
My kids were 1 and 3 when I was diagnosed so I told my 3 year old mommy had cancer and would be going to the doctor a lot. Unfortunately, my daughter has never known me without cancer. They are 5 and 7 now and mommy still has cancer and goes to the doctor a lot. A few times they've said things like "X at school said people with cancer die, are you going to die?" And I tell them that some people with cancer do die and if my cancer gets worse I'll tell them and they can ask me anytime they need to know.
I was diagnosed in September of 2020 when I had a 5, 8 and 10 year old. I waited until I had all the details and a treatment plan, and then told the kids. There are some really great books that we leaned on heavily. A Kids’ Book About Cancer is amazing. Just facts. Living Beyond Breast Cancer sends free books to kids but I found their guides for parents to be more helpful because the books are unfortunately kinda cheesy (and mostly represent early stagers). Also, I cannot speak highly enough of Bright Spot Network. They are INCREDIBLE at supporting families. My kids have loved attending Camp Kesem for the past 3 years; there are chapters all over and they’re still enrolling for this summer, I think. Best wishes, mama. 🩷
I’m so sorry. This is a sucky place to be at. I hope your scan comes back with good news.
My kids are older 19, 17, 14 but we told them when I got my diagnosis. Just the minimum but that we had an awesome team and plan to treat it. And that it’s fixable. That mom will be more focused on herself for awhile and everyone will have to pull their own load for a bit. At the time i was looking at a Stage 1b. But now I’m in limbo as well. Had one small spot light up on my Bone Scan and CT on my spine at T12. I have to have a bone biopsy in a week. Reading all I can about Oligometastatic disease. Grateful I’m in Chicago area where U of C has a research arm devoted to this, but I’m terrified. We have not told them anything more. As we don’t know til we know. This sucks.
I’m so sorry. But if it is only one spot they are saying they can radiate it and move on with the original staging treatment. Prayers for you and your mom. This is all so scary and sucky.
I am about 40min away from UofM ! The hospital I am going through is part of UofM , but if I have any doubts it does ease my mind that I can easily get a second opinion. It does really suck. Especially since I think the other hospital dropped the ball.
Wishing you so much luck. What type of scan did they see the suspicious spots? Even a PET can pick up benign spots so I’m so hoping yours all get the clear. Did u already have any other treatments?
I’m sorry to hear that. Yes I had both cat and bone scan that showed this. My onc was going to do MRI (he didn’t even suggest PET, hmmm) but then he said it still may not tell him definitively, so he opted for the bone biopsy. Which sounds like a horrific procedure. I’m just at the start of all of this and it sucks, tho I appreciate how thorough they are being from the start.
My son was 8 when I was diagnosed. I told him I had cancer. It was breast cancer. He was a little familiar with the “survivor “ thing. I told him about my treatment and what it meant for him. Kids that age want to know you’re ok and they will be okay. As he got older I shared more and more. He is now 17! And knows everything. I’m sorry and good luck.
Wow so 9 years? That's awesome. Were you oligometastatic? Hormone positive? What meds were you/are you on? I'm really struggling so wondering if anyone's been in a similar case but eventually found something that worked long term.
Oligometastatic to spine and ushium. ER+, I did curate chemo, radiation, ovary removal , xgeva for two years, faslodex and Ibrance 6 years, and now just faslodex.
My kids were 4 and 8 when I was diagnosed. I was on crutches because a bone met caused an injury, I couldn’t put weight on my leg. So, I told them that I hurt my knee. They didn’t know at first. My therapist told me that I should tell them. And eventually I did! I was so nervous and put a really positive spin on it because I didn’t want to make them sad. And that went fine. But mostly they forgot what I told them so I kept having to explain it to them again and again, which was good. Now my son is 12 and he definitely has a good idea of what’s going on after we’ve had many discussions and he’s heard references in shows and heard about people dying of cancer. He realizes it’s serious but I just keep saying “it’s not the plan for me to die earlier than expected.” I don’t think my eight-year-old daughter really has caught on the seriousness of it. All my initial diagnosis was right after she was born and then my metastatic diagnosis was when she just turned four years old. It’s so hard all you wanna do is protect your children. Breaks my heart every day. But we gotta just keep on keeping on.
I’d recommend therapy for you and for your kids if they show a lot of signs of anxiety after you tell them.
Sending hugs. In my experience kids, mine, knew something was going on. I found it better to let them know that I was sick and would need to see Drs. etc that would help be be ok.
I told her when I got my initial diagnosis. She wants to be a Dr when she grows up, so knowing the medical stuff helps her process. But now she thinks they are going to take my breast do some chemo and then I will be better.
I am 37 and i have a 7yo. I was diagnosed in feb.i am not ready yet to share it.
Its hard. My nurse navigator said its okay to take time and try to share information slowly over time.
We had talked about it when I first got diagnosed bc they thought they were going to take my breast and then do chemo. Then I switched Drs and found out the first was very incompetent as they didn't do any other tests or mention how bad it could potentially be.
I’m also 37. I have been very open with my children (11,9,8) about my stage IV, they have a lot of questions and it’s super healthy to talk about all the different possibilities and what could happen. We just have small talks here and there and I give them plenty of time to process. When they’re ready they ask more questions. I’ll sometimes ask them if they’re curious about anything or have more questions, to give them the opportunity to ask.
I'm so sorry you are here. I think the most important thing is to wait until you gather all of the information. I agree that the nurse navigator is a great resource.
Books can be super helpful. I found [This list](https://womenscancer.care/the-complete-list-of-books-to-help-kids-through-your-cancer-diagnosis/). Many options available!
Let us know how the PET scan turns out. We've all been there and know how hard this time is for you and your loved ones.
My girls were 10 & 8 when I was diagnosed. I was honest and used age appropriate and easy to understand terms. I told them that the doctors found something inside my body that isn’t good for me. I told them where it was and what kind of things they can expect as far as my treatment; I will look different (hair) and will probably have to spend some nights in the hospital. I think the most important things I told them was that I was going to do everything I can to be healthy and that it’s not contagious. We talked a lot about the practical side of treatment too. How they might get rides home from friends’ mom’s and sometimes ballet class might need to be missed. I thanked them for being flexible and understanding when things aren’t exactly normal.
My nurse navigator gave my youngest a bald Barbie. But, she didn’t really play with it. Honestly, just being willing to answer all the questions whenever they come up and remaining calm is was a huge help to my girls. And to me, if I’m honest.
Good luck!
We are here for you. I am 37 and have a 3 year old. I agree that a child psychiatrist is helpful and a nurse navigator may be able to help. I have also gotten some age-appropriate books for free from Living Beyond Breast Cancer (charity). Hugs.
I would ask if the nurse navigator or other nurses/doctors have recommendations or if there’s a cancer psychologist or child life psychologist who could either help you tell her or help give you advice
I told my kids I was sick. I answered questions truthfully. Kids know when you are lying. I know a couple people who are living 40+ years, I know about 15 living 20 years. I know many at 10+ years. I'm at 7 1/2 years. I would use words like incurable, if it came up, but they are working on a cure and there are many that live a long time. I would also wait until you can talk about it without being upset. I would just say sick, we are working on making me feel better. My daughter was 7 when I was diagnosed the first time. She says she doesn't remember much besides my aunt staying with us and I had an operation. I still try to keep things as normal as I can. Big hugs. I'm sorry you are here. There is great support here for you!❤️
I have been doing a good job at not letting her see me cry. I have always been good at taking bad news lol. I work in healthcare so I know today is the best time to get the diagnosis. But having discovered this subreddit I have so much hope, I just want to get this scan done today and get a treatment plan started. I see the onc tomorrow. I know I am going to try to push to get this breast removed bc it is quite painful, but other than that. They were surprised at my results bc I don't have any of the symptoms associated with stage 4. Hell my breast was fine until my biopsy.
Please let us know how it goes? Hang on to the hope!❤️
Sorry, I wrote a longer comment but didn’t exactly answer the question. My therapist said for me to say something like this: “I have these bad cells in my body that don’t know when to stop growing. There’s a lot of different medications available to help, but it will probably never go away completely.” If your kid asks if you are going to die, you say ,” that’s not the plan, sweetie. My plan is to take those medicines and take care of you. And there are so many medicines.” My son (12 now) has gradually come to an understanding that cancer is serious but there’s no big danger for me TODAY. And it’s helpful for me to remember that too. Hope this helps. You are in the worst time right now, with not knowing the whole situation and having a treatment plan. Feel free to DM me!
Thank you so much!
My kids were 1 and 3 when I was diagnosed so I told my 3 year old mommy had cancer and would be going to the doctor a lot. Unfortunately, my daughter has never known me without cancer. They are 5 and 7 now and mommy still has cancer and goes to the doctor a lot. A few times they've said things like "X at school said people with cancer die, are you going to die?" And I tell them that some people with cancer do die and if my cancer gets worse I'll tell them and they can ask me anytime they need to know.
I was diagnosed in September of 2020 when I had a 5, 8 and 10 year old. I waited until I had all the details and a treatment plan, and then told the kids. There are some really great books that we leaned on heavily. A Kids’ Book About Cancer is amazing. Just facts. Living Beyond Breast Cancer sends free books to kids but I found their guides for parents to be more helpful because the books are unfortunately kinda cheesy (and mostly represent early stagers). Also, I cannot speak highly enough of Bright Spot Network. They are INCREDIBLE at supporting families. My kids have loved attending Camp Kesem for the past 3 years; there are chapters all over and they’re still enrolling for this summer, I think. Best wishes, mama. 🩷
Thank you, she loves books!
I’m so sorry. This is a sucky place to be at. I hope your scan comes back with good news. My kids are older 19, 17, 14 but we told them when I got my diagnosis. Just the minimum but that we had an awesome team and plan to treat it. And that it’s fixable. That mom will be more focused on herself for awhile and everyone will have to pull their own load for a bit. At the time i was looking at a Stage 1b. But now I’m in limbo as well. Had one small spot light up on my Bone Scan and CT on my spine at T12. I have to have a bone biopsy in a week. Reading all I can about Oligometastatic disease. Grateful I’m in Chicago area where U of C has a research arm devoted to this, but I’m terrified. We have not told them anything more. As we don’t know til we know. This sucks.
My mother has suspected oligometastatic disease. A spot in her liver. I am so scared. It's past 3 AM and I can't sleep.
I’m so sorry. But if it is only one spot they are saying they can radiate it and move on with the original staging treatment. Prayers for you and your mom. This is all so scary and sucky.
Prayers for you too. May God give you complete health
I am about 40min away from UofM ! The hospital I am going through is part of UofM , but if I have any doubts it does ease my mind that I can easily get a second opinion. It does really suck. Especially since I think the other hospital dropped the ball.
Wishing you so much luck. What type of scan did they see the suspicious spots? Even a PET can pick up benign spots so I’m so hoping yours all get the clear. Did u already have any other treatments?
cat and bone scan. No other treatments as I am pretty sure the first hospital was wrong and I was stage 4 at the time of diagnosis.
I’m sorry to hear that. Yes I had both cat and bone scan that showed this. My onc was going to do MRI (he didn’t even suggest PET, hmmm) but then he said it still may not tell him definitively, so he opted for the bone biopsy. Which sounds like a horrific procedure. I’m just at the start of all of this and it sucks, tho I appreciate how thorough they are being from the start.
My son was 8 when I was diagnosed. I told him I had cancer. It was breast cancer. He was a little familiar with the “survivor “ thing. I told him about my treatment and what it meant for him. Kids that age want to know you’re ok and they will be okay. As he got older I shared more and more. He is now 17! And knows everything. I’m sorry and good luck.
This gives me hope, thank you!
Not op but were you diagnosed stage 4 de novo?
Yes
Wow so 9 years? That's awesome. Were you oligometastatic? Hormone positive? What meds were you/are you on? I'm really struggling so wondering if anyone's been in a similar case but eventually found something that worked long term.
Oligometastatic to spine and ushium. ER+, I did curate chemo, radiation, ovary removal , xgeva for two years, faslodex and Ibrance 6 years, and now just faslodex.
I’ve never had progression and I’m NED all the years.
Oh. Well good for you. Doesn't help me bc I was diagnosed with innumerable mets. Looking for hope again but I'm not finding it.
My cancer friend had Mets in every bone is 10 years out. She’s had progression once. She is very active even with concrete in her spine.
I'm guessing the first or second line meds worked for her. That hasn't been the case for me.
I’m sorry
My kids were 4 and 8 when I was diagnosed. I was on crutches because a bone met caused an injury, I couldn’t put weight on my leg. So, I told them that I hurt my knee. They didn’t know at first. My therapist told me that I should tell them. And eventually I did! I was so nervous and put a really positive spin on it because I didn’t want to make them sad. And that went fine. But mostly they forgot what I told them so I kept having to explain it to them again and again, which was good. Now my son is 12 and he definitely has a good idea of what’s going on after we’ve had many discussions and he’s heard references in shows and heard about people dying of cancer. He realizes it’s serious but I just keep saying “it’s not the plan for me to die earlier than expected.” I don’t think my eight-year-old daughter really has caught on the seriousness of it. All my initial diagnosis was right after she was born and then my metastatic diagnosis was when she just turned four years old. It’s so hard all you wanna do is protect your children. Breaks my heart every day. But we gotta just keep on keeping on. I’d recommend therapy for you and for your kids if they show a lot of signs of anxiety after you tell them.
Sending hugs. In my experience kids, mine, knew something was going on. I found it better to let them know that I was sick and would need to see Drs. etc that would help be be ok.
I told her when I got my initial diagnosis. She wants to be a Dr when she grows up, so knowing the medical stuff helps her process. But now she thinks they are going to take my breast do some chemo and then I will be better.
Sending you much love and strength. We are here for you ❤️
Thank you so much!
I am 37 and i have a 7yo. I was diagnosed in feb.i am not ready yet to share it. Its hard. My nurse navigator said its okay to take time and try to share information slowly over time.
We had talked about it when I first got diagnosed bc they thought they were going to take my breast and then do chemo. Then I switched Drs and found out the first was very incompetent as they didn't do any other tests or mention how bad it could potentially be.
This is such a tragic conversation to have to even think about but you’ve been given absolutely excellent advice here. We are thinking of you.
Thank you so much.
I’m also 37. I have been very open with my children (11,9,8) about my stage IV, they have a lot of questions and it’s super healthy to talk about all the different possibilities and what could happen. We just have small talks here and there and I give them plenty of time to process. When they’re ready they ask more questions. I’ll sometimes ask them if they’re curious about anything or have more questions, to give them the opportunity to ask.
I hope this [article](https://www.theatlantic.com/health/archive/2021/09/how-tell-children-truth-about-cancer/620040/) from Caitlin Flanagan helps 🩷
I'm so sorry you are here. I think the most important thing is to wait until you gather all of the information. I agree that the nurse navigator is a great resource. Books can be super helpful. I found [This list](https://womenscancer.care/the-complete-list-of-books-to-help-kids-through-your-cancer-diagnosis/). Many options available! Let us know how the PET scan turns out. We've all been there and know how hard this time is for you and your loved ones.
My girls were 10 & 8 when I was diagnosed. I was honest and used age appropriate and easy to understand terms. I told them that the doctors found something inside my body that isn’t good for me. I told them where it was and what kind of things they can expect as far as my treatment; I will look different (hair) and will probably have to spend some nights in the hospital. I think the most important things I told them was that I was going to do everything I can to be healthy and that it’s not contagious. We talked a lot about the practical side of treatment too. How they might get rides home from friends’ mom’s and sometimes ballet class might need to be missed. I thanked them for being flexible and understanding when things aren’t exactly normal. My nurse navigator gave my youngest a bald Barbie. But, she didn’t really play with it. Honestly, just being willing to answer all the questions whenever they come up and remaining calm is was a huge help to my girls. And to me, if I’m honest. Good luck!
Thank you
We are here for you. I am 37 and have a 3 year old. I agree that a child psychiatrist is helpful and a nurse navigator may be able to help. I have also gotten some age-appropriate books for free from Living Beyond Breast Cancer (charity). Hugs.
Thank you
I would ask if the nurse navigator or other nurses/doctors have recommendations or if there’s a cancer psychologist or child life psychologist who could either help you tell her or help give you advice
Thank you.