26 years old and just diagnosed with IDC
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hey everyone it seems like it’s been awhile since I’ve been on here but this past week was so rough. I was so angry about everything. Mostly angry that everything is taking so long and the holidays are slowing it all down but I got in touch with my gynecologist who was the first doctor I went to about this and he took me off my lexapro and put me on Ativan and that’s helped a lot! So thankful for it! I had my genetics test and my contrast breast MRI on dec 30. I should have results for my mri tomorrow or Friday. Hopefully that should show if it has spread to any lymph nodes. Counting down the days to meet with My breast care team! I did hear from my medical oncologist though He messaged me about getting scans so I was pretty happy with what he said. Right now I'm wondering, at what point did everyone tell their young kids? Mine are 7 and 8. We haven't told them anything yet and won't till we meet with our team and have a plan on the 7th but after that I'm wondering when the right time to tell them is. Part of me thinks as soon as we know a plan so they can process it before big changes come and the other part of me thinks to wait till it's actually noticeable that something is going on. I'd love to hear anyone's experiences with telling their young children about their breast cancer. When did you tell them? How did they respond being young?
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this is what my medical oncologist wrote me about my scans 0 -
I agree - great communication from the MO. We'll be waiting to hear about your appointment.
I don't have young children, but I don't think I'd use the word 'cancer' in any case. As you've seen yourself, that is a frightening a word. Maybe something like Mommy is having some treatments so she'll feel better. But in any case, I'd wait until it was necessary to address changes in their life styles. Sort of like you wouldn't tell a young child all about sex in great details before they ask.
You will get some answer here. Also go to the search engine on BC since I've seen this question discussed before.
The book I mentioned in an earlier post Dr. Susan Love's Breast Book, has a good section about how & when & what to tell your children. She disagrees with me and thinks you should use the word 'cancer' so they don't over hear it somewhere else by mistake and think it's a terrible secret. I can't repeat enough what a great resource this book is for someone starting this journey. It's a "bible" for women with breast cancer and a tool for empowerment.
While you're considering - think about who else you want to tell - or not. I didn't tell anyone except my immediate family and one very close friend. It worked well for me, but other people are adamant that they want 'people' support. I didn't want to have to be supporting or being nice to others who wanted continual updates and to be 'helping' me all the time when I wanted to be alone or have a few minutes that I didn't have to dwell on the subject.
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I keep forgetting to get that book. I really need it though. Maybe if you keep mentioning it enough I’ll remember to get it haha. I’ll be letting everyone know, as I feel that the reason God placed this on me at this age is so I can be an advocate for it and raise awareness about breast cancer in younger women. My sons Have talked to me about their teachers at school that have had cancer before so they are aware of it in some form,so I plan on being honest about that part I just didn't know when people chose to tell their kids
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I just completed my first round of AC on Monday...I have a 7 yr old daughter (about to be 8) and I have been very upfront and honest with her...I’m sure she noticed my breakdowns and worries and apts. at this time she is taking. It well (but I haven’t begun to show signs of chemo yet such as hair loss). I have informed her teachers so that way if anything changes in school we can keep that line of communication open. She is more helpful in picking up after herself and washing dishes but I do also worry what is to come. My goal is to have to spend time with her cousins as much as possible so she is not stuck here with me (and hopefully protect her from seeing or experiencing too much), kids are resilient and I just pray I can stay strong enough to hold her through all of this 🙏❤️0
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I hadn’t even thought about informing their teachers in case they act out. I’ll definitely be sure do that. I am glad your daughter is taking it well so fa
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hray - I checked and Amazon has the Susan B Love Breast Cancer book as a paperback or for Kindle. $14-15.
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thank you for checking into that for me. I’ll definitely order it soon
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I've been out of town for a week, so just catching up the best I can. It sounds like you've got a great medical oncologist, but it must be frustrating to wait so long to get in for the consult. Be sure to bring at least one person in with you and have that person write down everything!!! Do get a copy of all biopsy results and scan results. I can't tell you how many times I've looked at those since my diagnoses!
My kids were 9, 11, and 13 when I was first diagnosed. I was upfront and honest with them about every step. I told them I planned to fight this with everything I could and planned to minimize its impact to them. I learned that if they still had food, got to their activities, etc, the impact to them was pretty low. I did let their teachers know. I told them what to expect as far as hair loss. They helped shave my head (we did a mohawk first before shaving it...just for fun), and they helped pick out hats, etc. On Easter, they painted my head like an Easter Egg...just because we could. I did not want their memories of my cancer to be all "bad" ones and wanted them to learn to make the best of tough situations. Kids are very resilient. Do give them little tasks they can do to help. Just like you feel powerless over this diagnosis, they do too. They started packing their lunches during my treatment (and they still do). I always made sure they had plenty of choices, but they chose what to put in their lunch, and took are of it. It was one less thing for me to do, and I praised them for being so responsible. They also helped vacuum once per week which was tough after my mastectomy. I told them how much easier it made things for me with them helping to do that. It definitely gave them a sense that they were helping and that is empowering when you feel helpless in a situation. I was always honest every step of the way, and I think that helped them as well.
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To move things to their most rapid pace, you might also ask the navigator about scheduling your port or PICC placement and also scheduling your first chemo. (You can have first chemo PRIOR to port placement, BTW). You could also ask for your chemo-nurse teaching session to be scheduled. Just thinking of things that may hustle the process along so you could begin treatment as quickly as possible after the 7th. So happy to hear you have a responsive MO.
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I may ask about those but probably by the time they got me an appointment it would be time to see my doctors I’m thinking they will tell me to wait anuwats
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Yes just thinking that if you call for those appts on the 8th they will be booking further out than they are today.
I suspect they will have a treatment plan in mind for you by the 7th (though possibly they will still want more info) -- if so, it might be nice to be able to jump on it rather than have another delay to book port placement or schedule chemo nurse teaching session. But it's only a few days more and that's great. Hows the cooking for the freezer going?
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I’ll message my nurse navigator, who I don’t like bu the way lol, about it and see if she can get anything started with them. Cooking for the freezer is going slowly lol I’m so tired and I’ve been working every day so it feels like as soon as I get home I just want to rest and and do something quick. I’m working on getting my house clean right now. And turning my laundry room back into a family closet. That’s the easiest for me when there’s 3 guys in the house and they all lose Thier clothe
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I also focused on cleaning before chemo-glad I did, right now just taking it easy and letting my hubby worry about food and cleaning..
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my main goal is to get my family closet done in the laundry room so everyone’s clothes are in the same place
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I had a couple friends come over on a weekend afternoon and we had a girls afternoon of filling my freezer. It was fun and soooo appreciated.
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I'm also an OCD closet cleaner, lol. I've been organizing my house between surgery and treatments since September, being home from work. Things I've wanted to do for years. Hopefully, you will still be fine to do things around the house. You won't want to lay in bed all the time, I actually enjoyed laundry and dishes as mindless busy work to get me out of bed. Even with the double mx, my arms weren't in that bad a shape. My husband panicked that I would be an invalid and he would have to do everything, but that didn't happen. I made him do all the driving for kids activities for a while. I didn't food shop for a month, but we managed.
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today is the day y’all!! 4pm hurry up!
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hray - in your pocket
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I GOT MY PLAN!!!! Finally!!! I’m doing the ISPY, pronounced like eye spy, clinical trial. I have 4 to 5 weeks worth of all the scans I wanted (part of the trial) and also my port placement will happen at the end of those then I start chemo. 8 weeks of Adriamycin and Cytoxan chemo the next 12 week of Paclitaxel chemo. Then surgery. Y’all know I’ve been so dead set on my double mastectomy and I told them that from the start and they were completely supportive of it. My surgical oncologist said she would check in again halfway through chemo to make sure that was still my choice then set me up with a plastic surgeon. I was happy with that. Then me and my medical oncologist talked for over an hour and I was asking questions about mastectomy vs lumpectomy plus radiation. And he said let me tell you with numbers. The likelihood of it coming back in the breast area with having a mastectomy is 15%. The likelihood of it coming back after doing lumpectomy plus radiation is also 15%. So literally same exact odds. He told me about a study they did that proved this. So now I'm wondering if I should just do the lumpectomy and radiation. I'm not making any final decision on that for now I'm waiting on my genetic testing to come back because that might make the decision for me if I have any gene mutations. It just blows my mind that I was so dead set on something like 100% and every single doctor was supportive of my decision but I kept an open mind and now I may be changing the one thing I was so dead set on. But I'm excited to have a plan and get all these tests going.
They said technically it's ER/PR+ HER2- since it's weakly positive but they will also treat it triple negatively. But I'll also probably be put on an anti hormone pill when this is all done mainly because of the 20% PR+ status. Also found out that it's stage 2A and it's now about 4cm.
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hray, It is great you are set with a plan and good for you for having an open mind and looking at all your options. Thanks for updating us!
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hray, see recent discussion "Considerations: Lumpectomy w/Rads vs. UMX vs. BMX". Glad to know you are feeling better. Are they doing a PET/CT or just CT? 4 to 5 weeks sounds like a lot for an aggressive cancer, but I'm no expert. Mine was considered not aggressive, had surgery first 6 weeks after dx, than chemo almost 4 months after dx.
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thanks ladies. Im also getting over the flu right now so not feeling super great but glad to have a plan.
JRNJ, they are doing another biopsy because it’s required for the clinical trial I’m doing, then they are doing another breast mri, a chest CT, belly CT, pelvis CT, bone scan, echo and port placement. All that will happen in the next 4 to 5 werks
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Hustle them as fast as you can. Be a squeaky wheel to get on the calendar and be available for cancellations. You've already had a delay due to holidays and (I am sorry to say) stuff like this happens faster if we ride herd on it a bit.... One sick nurse can mean her to do list waits for 3 days... etc. Use your navigator to help you here...
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Absolutely incredible how this has worked out AND you were able to keep an Open Mind. Kudos!!!
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could I request to have a different nurse navigator? I just really don’t like mine
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Yes. I bet you could get switched.
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4-5 weeks is prob how long I waited for all the scans, apts, insurance approval for chemo from the time of diagnosis!!! I’m sure you will feel much better once all the scans are completed and your are starting treatment!!! What my docs say is these few weeks are not gonna make a huge difference since we know the cancer has been growing for years until we find it! I def was so fearful of waiting even a day but it gives you time to prepare and gets all these apts knocked out!!! You got this!!
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I agree. I told my fiancé, I said we have 5 weeks to get this house how I want it and everything planned for and prepped so let’s get busy lo
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sounds good. I had all the same things. Two different biopsies two holes each time. Information is good. But had ct and bone scans after surgery because insurance didn’t approve in time. I didn’t like my BS or her PA who was my contact. I suffered til after surgery than did not go back. Wanting to Switch drs etc... has caused me much stress because of their affiliations. Its hard to switch just one. But follow your gut. Now I liked my MO but since starting chemo got passed off to an annoying nurse I feel like I can’t win. I don’t feel cared for
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