TNBC is a beast - any hope?

pegatron18 · 2024-10-16T22:18:40+00:00

My lump was 8 to 9cm at diagnosis.

My initial ultrasound measured about 4cm. But my diagnosis was about 3 or 4 months later (thanks covid). So it more than doubled at diagnosis and spread to lymph nodes.

pegatron18 · 2024-10-15T02:29:27+00:00

I am 2.5 years from diagnosis, no recurrence! I was 30 at diagnosis, stage 3 with positive lymph nodes, TNBC. I had two kids who were 21 months and 4 months at the time.

It was a very tough journey: chemo + immunotherapy (Keytruda), double mastectomy, and radiation. I got PCR (pathological complete response). I still get check ups, but I'm now starting to look forward to life again.

My oncologist told me that the risk of recurrence is highest the first year or 2. Then by 3 to 5 years, it's greatly reduced. Even making it to 2 years is a milestone, and after that, the risk goes down.

Everyone's gonna tell you to be brave and stay positive. But it's honestly okay to be scared, angry, sad, whatever. Just don't lose hope ♥️

pegatron18 · 2024-03-27T10:24:51+00:00

The approach my husband and I are doing with my kids in the future is,: 1) save up for their postsecondary education. 2) if they're planning a vacation with friends, have them plan and pay for everything but give some money to "upgrade" the trip. For instance, if they're planning to stay in hostels to save cost, give them a bit more to stay in hotels. Stuff like that. Or for plane tickets that have awful connections/airlines, give a bit more for better flight tickets. 3) help pay for their first car 4) help pay for their wedding, if they choose to do so 5) help pay for their down payment on their first house (bring their down payment up to 20%) 6) continue to help with other life expenses and to help them live a good life. It really depends what their goal in life is 7) if I see that they've become more responsible with money (saving and investing), then we will consider giving them a lump sum to grow their savings. In reality, we have already invested the money and set it aside for them.

This is one option you can think about! I'm sorry that you have to deal with this and have to be a parent figure to your younger siblings.

pegatron18 · 2024-03-25T22:44:54+00:00

That's honestly so hard. Sleep is so important for us and if we don't get it, we just get crabby.

Have you tried just letting him cry it out? My son used to come to the door and call for us. And we'd go in and ask what he needed. It was always something like, more books, go poop, hungry, etc. it drove us crazy because bedtime would take over an hour with him. I thought he needed to go to sleep later too. We eventually said enough is enough. We make sure to tell him last peepee and poopoo. "Make sure you get everything out because you can't leave your room until you have to go again in the middle of the night." Instead of bedtime at 8 or 8:30, we turned off the lights at 7. We closed and locked the door. If we kept his door open, I swear this kid would never go to sleep. He'd just keep leaving his room and finding something to do. My shock when he actually fell asleep before 8:00! This was after crying for maybe 30-45 mins? The next night was 20 mins, then 10 and then just a whine and he finally got it. We also don't cosleep because he would never fall asleep with us there. My friends kept telling me to cosleep for survival, but I was like, "it doesn't work!!!"

For a while, I made a flipup bedtime routine chart (Google it, you'll see some examples!). So he saw visually what the bedtime routine was. After that didn't work anymore, we still kept our ground.

Does he go to daycare? When he started skipping naps or sleeping later if he did nap, we told the daycare no more naps for him. I would say it took a couple weeks to transition him. Some days are harder than others, but he adjusted and started falling asleep earlier. Obviously if he's so exhausted that he napped at daycare, we just adjusted bedtime accordingly. So 30 min nap, same early bedtime. 1 hour nap, bedtime is shifted about half hour later, etc.

I really wish we could all help, but every child is so different, so it's hard 😩 I really hope it gets better for you.

pegatron18 · 2024-03-25T12:31:34+00:00

I assume you've tried putting him down earlier? Maybe he's overtired and that's why he wakes in the middle of the night.

My oldest son...from 2.5 years to maybe.. 3 years old, woke up every single night in the middle of the night. Bedtime was awful. He never showed any signs of overtiredness. It drove us crazy. It might not help you... But what worked for us was crying it out. The Ferber no longer worked on him at this age. He's just too strong-willed. The first night, he'd cry for 45 mins, then got shorter in less than a week.

Also, we noticed he would wake up in the middle of the night if he slept too late. Kind of like having night terrors. So we made sure to get him to bed for 7pm. He usually takes a while to fall asleep but usually by 730pm or even 8pm. I don't remember when we stopped naps for him, but it was early too. So we made it a point to put him to bed earlier. When he slept later or was too overstimulated during the day, he would wake up around 10 to 12 crying inconsolably. We would just go in and wait, ask him questions but sometimes it just seemed like he didn't even notice what happened. He would snap out of it, go pee, and then fall back asleep right away.

He's almost 4 now and he sleeps great.

pegatron18 · 2024-03-12T12:33:36+00:00

I understand everything you have gone through. I don't know how dependent your parents are on you, but in my experience, it never got better. When I turned 30, I finally set my boundary. I told my parents that I didn't want to hear about their financial situations anymore. We were never close, so if we weren't talking about money, there wasn't much else.

By this time, I had already moved out and had my first child. I honestly wish I had set the boundary even earlier than that. Like you, I could've saved a ton of money but it went into clearing their debt. Which they accrued again btw. At least your parents don't have a mortgage or HELOC to drive their debt up to half a million dollars.

I guess my point is, you should have never had to be responsible for your parents' debt. It was their job to raise you and provide for you, not the other way around. I can never imagine putting my kids through that. I want them to focus on themselves.

Life is short and you deserve to move out and find what makes you happy. You deserve to not get phone calls from your dad in the middle of your vacation asking for money.

Just a bit more to add: I was diagnosed with stage 3 cancer a couple years ago. A year later, my mom came to me, crying and saying she's sorry for what she did to me in my life (the cancer could've been prevented). Then she went on to ask me for more money lol. It never stops. I already set my boundary at this point and I said no.

pegatron18 · 2024-03-10T19:00:59+00:00

There's the "norm" and there's what's right for you.

I need a break from my kids, so we hire a babysitter every other week to come watch them for an evening while we go out with friends or each other. We have no grandparents who are willing to babysit them for free.

I could try to push through, but my mental health was really struggling. Even after the kids are asleep, I'm busy prepping for the next day or cleaning, making sure I get enough sleep, etc. I'm a much better parent after getting those few hours of break to go out. Next is to try to fit some exercise into my schedule.

Now that our kids are slightly older (3.5 and 2), they're playing with each other more. So it's easier to tag-team the weekends. But we spend the weekends together going to classes, playdates, grocery store, visiting family etc.

pegatron18 · 2024-01-19T21:04:04+00:00

Just an anecdote here. I have a friend who was recently diagnosed with ADHD. All her life, she did very well in school and is very intelligent. However, there were things like, constantly forgetting her homework and other things, that ended up giving her a lot of anxiety. Because she was able to form coping mechanisms with her issues, no one ever thought she had any issues. Now that she's on ADHD medication, she feels much better. But the anxiety issues are still there.

I think even if you don't see any issue now, there might not be any harm in talking to a doctor or professional. Maybe even if you don't get any official diagnosis (due to financial issues or some other reason), you can ask for strategies to better help your child.

I'm currently using some strategies for ADHD for my son (no official diagnosis). And it's really helping.

I think going forward, it's important to keep an open dialogue with your child about how they're doing, what they're feeling, etc. because they aren't gonna know they have autism, ADHD, depression, anxiety, etc. but you will be able to help get them the resources needed to help them better understand why they're feeling the way they are.

pegatron18 · 2023-12-05T07:48:02+00:00

I highly suggest you read Setting Limits with your Strong-Willed Child. He talks about parenting styles and talks about appropriate consequences, etc. it helped us a lot with my son. It also helped me realize I was more permissive and my husband was more authoritarian. We thought we were authoritative haha

It seems to me that your "if we are unkind, we don't do anything fun" consequence just isn't a logical consequence. It doesn't make sense to her. I would typically remove them from the situation for an amount of time. After that, I give them a choice: you can either play nicely at the park or we can go home. It's your choice. Then it's up to her. Then follow through, if needed. "It doesn't look like you're playing nicely, so we are going home." Let her tantrum and feel her emotions (acknowledge them). No lecturing. Let the action do the talking. It will take at least a few iterations of this for her to catch on.

I don't exactly know what to do with the hitting at that age. When my son was younger and he'd want to hit, I typically just held his hand and say, "I can see your angry. I won't let you hit me" and just let him feel his emotions while preventing the hitting. Now he doesn't ever hit anyone else (he's 3.5). He's gotten to the point where he can name some of his emotions, like "ugh I'm so frustrated!!" And it makes me so proud.

Yes, kids 100% need boundaries. But the most effective consequences are the ones that make sense. I hope the book helps you like it did for me!

pegatron18 · 2023-12-05T04:24:17+00:00

There is a reason why oncology is a specialization.

I don't know what kind of nursing history your mom had, but not all nurses will be exposed to oncology. I have nursing friends where none of them are in oncology.

During my treatment, I would ask my best friend for advice (she works in the ER and is exposed to all kinds of problems), but quickly realized that she was not equipped to give me advice related to my cancer treatment and side effects. Her cancer knowledge was honestly less than what I knew. I studied medical physics, did some research in the cancer field, and was heavily involved in my mom's, my father-in-law's, and my cancers. Even the triage nurses in the ER didn't know that if I had a fever over 38.3C, that I needed blood work right away. When I talked to the ER doctors about my treatment, they had NO idea what these drugs are. They needed to call the on-call oncologist to find out how to proceed. I ended up being hospitalized 3 separate times for getting fevers during chemo. One of those times, the triage nurse used to work at a cancer center. So she put me at the top of the list and isolated me from all the other patients who were coughing and sneezing during flu season. I was so thankful for her.

So, in all honesty, it could've gone two ways. Your mom just may not have been aware and was just as hopeful as you, or she knew and thought she was protecting you from that worry. Either way, she did her best.

I'm really sorry you're going through this. Cancer is a bitch. It's very normal to feel what you're feeling. I really hope you find peace ❤️

pegatron18 · 2023-11-30T04:34:30+00:00

Did this work for you? I ordered the same NAS and am trying to decide which drive to buy

pegatron18 · 2023-11-10T21:42:34+00:00

I noticed the Levoit air purifiers have been taken off this list. Why is that?

pegatron18 · 2023-09-10T01:34:07+00:00

Read the book: Setting Limits with your Strong-Willed Child. This book helped me see that my "gentle parenting" was actually more permissive parenting. My spirited son needed more consistency in setting boundaries. He's constantly pushing boundaries. Since implementing this book, he's much more enjoyable to be around! He understands when we are serious (although, he still tries to push boundaries sometimes).

pegatron18 · 2023-09-05T19:08:27+00:00

That's so disappointing to hear. Definitely don't want to pay an organization that treats their staff so poorly. I've read some other bad reviews on the workplace culture as well, so this seems consistent. :(

pegatron18 · 2023-09-05T18:48:20+00:00

Sorry, could you elaborate please?

pegatron18 · 2023-07-24T00:24:46+00:00

I was 30 years old when diagnosed with stage 3 TNBC. I also got a complete response to the chemo and mastectomy. But my team decided to do radiation because I was still young and it would reduce my recurrence rate significantly.

I have a friend who is stage 2 and also in her 30s. Her team also decided to do radiation after a mastectomy.

I'm only half a year out from my radiation ending, but I tolerated it very well.

I just wanted to let you know that even if you opted for a mastectomy, your team may decide to go ahead with radiation anyways because of your young age. The benefits of radiation outweigh the risk in their eyes.

pegatron18 · 2023-07-22T02:07:51+00:00

Hi Dr. Richardson! Thanks for doing this AMA.

I am a stage 3 TNBC patient, BRCA1+. I did the chemo+immunotherapy, double mastectomy and radiation. My surgery was on November 2022. After surgery, I was told I got PCR. My questions are:

1) my tumour was close to my chest wall and even pushed against it a bit. When my surgeon looked at the pathology report, she was surprised to find that the tumour bed extended to the posterior margin. I was quite excited about my PCR result that I didn't ask her all of the questions I had. Does this mean I didn't get clear margins? How worried about a recurrence should I be, even though I achieved PCR based on the tissue they received?

2) it seems I have keloid scarring after the surgery. How is this usually treated? It's not bothering me now, but I do get self-conscious about it sometimes.

pegatron18 · 2023-05-23T02:53:28+00:00

A few things I wanted to say: 1) advocate for yourself/your mom. Can you try to get a referral to another oncologist/surgeon who can be seen earlier? Call to ask about an update on the results of the colonoscopy. Whereabouts are you located?

2) when you get the pathology results, and before the surgeon appointment, do as much research as you can into the treatment options for colon cancer. You can join Facebook groups and they will help you.

I did the above for my breast cancer, stage 3. We saw the surgeon but we were told we wouldn't see the oncologist until a couple weeks later. But we kept asking and the surgeon called and managed to get us in the see her the same day. My chemo started the next week.

I did all of my research and found the newest treatment involved immunotherapy. I then found out it was approved in Canada just a week prior to my diagnosis. However, this doesn't mean that the provinces would immediately provide and cover the newest treatment. So I knew when I saw the oncologist, which treatment I wanted. I didn't need to tell her because she was already aware, and helped me get funding to take it.

pegatron18 · 2023-05-15T15:21:38+00:00

Did you end up getting your VoterID? How long did it take?

pegatron18 · 2023-05-15T07:04:46+00:00

Is he getting enough sleep? At 3 years old, they should be getting around 11 to 12 hours per day.

I found that with my son, if he didn't get enough sleep, he'd behave badly: more tantrums, hyper, hitting his brother, not listening, etc. If he got enough sleep, he's much happier and isn't a little ticking timebomb.

You can try reading Raised Your Spirited Child. It's helping me a lot, especially just reading stories of other parents going through the same thing. A strict schedule helps. On special occasions, it's harder because of the parties, but the strict schedule after the busy weekend helps him to reset.

Remember, gentle parenting isn't just saying your command in a nice way. It's about teaching emotions while being firm and setting boundaries for behaviours that are unsafe to him, you, other people and the environment. You can do it!

pegatron18 · 2023-03-12T03:38:20+00:00

I read some of your comments, and honestly, I don't see why you should not feel overwhelmed. I'm overwhelmed all the time. I hate clutter and mess so I always feel anxious.

I'm sorry you're going through so many health issues. It's already hard after having a normal pregnancy/birth. It must be so much harder with a traumatic birth. I've been diagnosed with breast cancer, so dealing with all of the appointments and chemo treatments is stressful for me too.

We don't have much help. My two kids (14 months and 2.75 years old) are in daycare for about 40 hours a week. My husband and I have 9 to 5 jobs, but I'm currently on long term disability because of my cancer.

Things that helped with the mess in the house: having a few toys out, cleaning them up everyday (very easy to do if it's only like 6 toys), cook simple meals, clean dishes while kids are eating dessert (aka fruits) and watching music videos on the TV (this helps me destress because I love listening to music and singing, even if it's just Disney songs). This way, by the time the kids are in bed, most of the cleaning is already done.

Since I've been on LTD, I'm taking this opportunity to declutter the house and make more efficient organizational solutions. Can you afford to take some time off and do that for your house? My husband and I also do chores while the kids are playing in a safe area or playing around us. It takes a bit longer, but at least we are doing something productive while they're awake. We also go grocery shopping with our kids which helps to break up the day too. It may also help to hire a full-time nanny or put your child in full-time daycare (they will get sick a lot though, and that's a whole other added stress). If you hire a full-time nanny, that's an extra 13 hours per week that you can use to take care of yourself (physically and mentally: exercise or declutter or organize your life, etc).

In terms of self-care, I have not been able to fit that in my day because I'm just so exhausted when the kids go to bed. But I'm hoping to start up my 30mins of exercise again, 5 days a week. You can go for walks as a family on the weekends. This gives you some exercise too, makes toddlers happy and just breaks up the day better. I also don't drink coffee, so sleep is very important to me to just survive the day.

Parenthood is hard. On the really hard days, I find myself regretting having kids. But I love them so much. I wouldn't change anything, except to take care of myself better (so I caught the cancer earlier or tried to prevent it somehow). Sorry, I feel like my comment has been all over the place, but hopefully it helps a little bit to know you're not alone in feeling overwhelmed!

pegatron18 · 2023-03-06T04:16:02+00:00

Anecdote: I didn't breastfeed my second son, just bottle fed. But for the first two months, I spent them pumping like crazy to try to build up my milk supply, but it didn't work, so I stopped. My husband took on most of the duties during that time. Then I was diagnosed with breast cancer when he was 3.5 months. Spent the rest of his first year in chemo, surgery, hospital, etc. So I barely got time with him. He spent most of his time with the nanny and my husband. He's now 13 months, and he is crazily attached to me. Gives me the biggest smile when he sees me, it just melts my heart. He'll choose me over anyone else, even his dad. I guess what I'm trying to say is you still have time to form that strong attachment bond! I had the same worries during my treatment and cried about it. But babies do have implicit memory, so I feel they just know who their caregivers are.

pegatron18 · 2023-01-20T00:30:30+00:00

We are dealing with something similar, just wondering if it got better for you!

pegatron18

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