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Anyone Else with Bilateral Breast Cancer?

First post and replies | Last post by Fiercelyfiesty, 7 months ago

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Hi! I'm new here and newly diagnosed with bilateral breast cancer. I'm gathering it is quite rare, and wondering if anyone else here is facing the same? I don't have my genetic testing back yet, but it does have me wondering. As well as curious about the effects of having double the radiation. Thanks!

By Creativew... 7 months ago
I did not have cancer in each breast but I did have 2 different spots in one breast. Wishing you good luck and positive experiences in your journey. Post any additional questions you may have and I am happy to help if I can!

By Iamasurvi... 7 months ago
I had cancer in one breast and "suspicious cells" in the other. I had a double mastectomy but no radiation or chemo. Sending good vibes your way. Take care!!

By momoftwo 7 months ago
I did not have in both breast. Do you have your bio marker results back yet? Do you know what type of breast cancer it is. I had triple positive on my right breast. If I can help you in any way let me know. Prayers for you on your journey.

By Lms7663 7 months ago
@iamasurvivor Thank you so much! I will do that as I begin to sort it all out.

By Creativew... 7 months ago
@mirkat63 Did the doctors encourage the double mastectomy because of it being in both breasts? Or was that just what made sense for you for a different reason?

By Creativew... 7 months ago
@lms7663 It is DCIS in on and IDC in the other. They are ER and PR + and right now I have oncoplasty planned (lumpectomies with reduction). But I still need to meet with plastic surgeon and get the results for the genetic testing.

By Creativew... 7 months ago
Hi! I did not have cancer in both breasts but I did have DCIS & IDC in my right breast. I chose to have a double lumpectomy & also had reconstructive surgery on both sides. I was very happy with my decision. Please reach out to me if you want to talk more about this. Thinking of you. ❤️

By SLB 7 months ago
@slb Thanks so much! I will do that!

By Creativew... 7 months ago
@creativewithcancer I wanted the double mastectomy because I didn't want to worry about it later on. At first, they said they wouldn't remove healthy breast tissue. I said I WANT it removed. Then they did an MRI and found the suspicious cells, and because of that, they agreed to the double mastectomy. The surgeon was able to get clear margins, so I had nipple-sparing mastectomies. I still have 5% of my breast tissue because I have my nipples. I go to KU Breast Cancer Survivorship annually, and they do breast imaging (like a sonogram) to make su...

By momoftwo 7 months ago
@mirkat63 They didn't and I forgot to ask. Maybe I'll message the nurse? I do know the chances are somewhat low that genetics will be involved but I think I'll feel more settled once I hear about that. Also, I have two daughters! So I think about them too.

By Creativew... 7 months ago
@mirkat63 Also, they told me the chances of recurrance are the same between the two surgeries -- is that not correct?

By Creativew... 7 months ago
@creativewithcancer Before my cancer dx I was an RN for a breast cancer surgeon. Treatments are so amazing now. I know you’ll going to do great. If you’re comfortable sharing: Who is your oncologist and where are you going for treatment? I went through KU. What stage have they assessed it at? And when you find out I would be interested in your HER2 status. My triple positive (Her2+, ER+,PR+) stage 2 was said to have a 98% positive outcome with treatment. I had Chemo, surgery, and radiation. I also had (and am currently continuing w...

By Lms7663 7 months ago
I had lobular on the left and IDC on the right. They did not discover the lobular cancer until my bilateral mastectomy. It just looked like “salt on the screen.” I had 20 rounds of chemo and 28 rounds of radiation on my right side. The surgeon said I was not a good candidate for reconstruction due to all the radiation so I opted for Aesthetic Flat Closure (AFC). I am HER2+ and it has been two years since my initial diagnosis. I still have to get a monthly shot of Zoladex and take Anastrozole every day. I hope this helps! You are not alone, and ...

By Ironmom5 7 months ago
Sorry so late in hopping on this... BEEN A BUSY MONTH! I had breast cancer twice in the right breast, six years apart... 1992 and 1998. Was using KU, Dr William Jewell was my surgeon. The first time caught on a fluke timing of a mammogram. Intraductal Comedo, which had no known treatment for. This was all before micro-vascular surgery. I had 39 nodes removed from right armpit. All negative - thank God! Had a creative new approach on removing the culprit in the breast with clean margins...inserted 13 iridium implanted glass rods for 36 h...

By Buttercup 7 months ago
@ironmom5 Oh gosh, sounds difficult for sure! I am so grateful for you sharing. I will reach out!

By Creativew... 7 months ago
@lms7663 Wow! Amazing you are so knowledgeable. The DCIS is stage 0 and the IDC is stage 1 and grade 1. So, that's all good news. I'm hoping the genetic testing comes back OK. It is HER2-. I'm making a final decision this week but it is looking like KU and Dr. Khan is the Oncologist. Thoughts?

By Creativew... 7 months ago
@creativewithcancer I’m not that knowledgeable but I did learn a lot more from personal experience than I ever thought I would want to know. lol. Dr. Kahn is my oncologist and he’s wonderful! I would recommend him in a heartbeat! You’re in great hands. I’m so glad you caught it so early. Good news.

By Lms7663 7 months ago
@lms7663 Wow -- that's so good to know! Thank you!

By Creativew... 7 months ago
@creativewithcancer I have two daughters also. My genetic testing came back negative for BRACA so I was relieved. Yes, I'd suggest you message the nurse for the results. Sometimes things fall through the cracks. Keep us posted!!

By momoftwo 7 months ago
@creativewithcancer I'm not sure...Mine was peppered throughout both breasts like sand granules, so I didn't have an option for a lumpectomy.

By momoftwo 7 months ago
@creativewithcancer I agree! I have been with Dr Khan for a year now, he is wonderful! As is Stephanie Lefever and Oanh in his office. (Truly they all are but these are the three I see the most). If you are with Khan you are in good hands.

By Fiercelyf... 7 months ago
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My name is Amy, and like many of you, I’ve walked through the whirlwind of diagnosis, treatment, surgery, and recovery. During that time, I realized how hard it is not just to need help—but to tell people how to help. Everyone says, “Let me know if you need anything,” but when you’re in survival mode, figuring out what to ask for can feel overwhelming. That’s why I built GiftWellSoon, a platform designed specifically for people going through cancer and other hard seasons of life. 💙 What is GiftWellSoon? GiftWellSoon is a care r...

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