Notifications

Clear all

Treatment Decisions

Page 1 / 4 Next

Title

Views

Posts

Experience & personal recommendations re: expanders/implants post DMX w upcoming radiation & potential delayed DIEP

First post and replies | Last post by Iamasurvivor, 2 weeks ago

122

8

I am scheduled to have a nipple sparing DMX on 4/15. I am BRCA2+ and just finished chemo for HR+HER2-. I will have 20 rounds of radiation. I have complete peace about the DMX part as screening didn’t catch my cancer & I fear I will be living in 6mo increments if I chose the screening route vs risk management route. I am really struggling about what to do re: reconstruction options as I don’t know if mentally I will be okay w AFC ~ so I’m trying to make the wisest decision that allows options if available. The radiation effects are unknown ...

By Holly 2 weeks ago
Hi Holly, I was preventative dmx with immediate DIEP at KU. I can't talk about the radiation side but I would say DIEP is totally worth it. I am open to any question you have - the first 5 days are hard but completely do-able. Who is your surgeon? Jenny

By jleeh 2 weeks ago
Hi Holly! I had a nipple sparing DMX back in early October and opted for reconstruction with silicone implants. During the surgery, they installed expanders, which are sutured to your chest wall. I came out of surgery with them just slightly inflated with air, but still very "flat" which I liked because it didn't add additional pressure to the incisions (like straight to implant would have). I also liked that having the expanders allowed me to fine tune my size before reconstruction. They started scheduling expander fills a month after my DM...

By LWilliams... 2 weeks ago
Hi Holly, First off, you don't ever have to apologize in this group. We are here to hold each other up. You can be all over the place or laser-focused. We get it and want to help! I was BRCA negative, so I can't answer that, but I had nipple sparing double mastectomies and chose to have implants instead of the DIEP. My cancer diagnosis was DCIS in 2013. The cancer was like sand granules peppered throughout both breasts. I told my surgeon, also from KU, "If you can get clear margins, keep the nipples. If you can't, take them." I'm glad I c...

By momoftwo 2 weeks ago
Hi @holly, I had a double mastectomy at KU that was nipple sparing, and I had tissue expanders to prepare for implants. I didn’t have chemo or radiation. It has been over a year since my reconstructive surgery, and I don’t have any regrets. I really trusted and appreciated my team at KU. Good luck!

By S2425 2 weeks ago
Hi @holly For what its worth I am scheduled for my NSM to expanders at KU next week as well. I am BRCA2+. My surgery will be risk-reducing due to the mutation rather than for cancer treatment however. I am planning on implants after the expanders are removed and I've healed. I have also spent time wondering if keeping the nipples is the best choice given the mutation, but for me, I feel like the benefit of keeping them outweighs the risk at this time in my life. Wishing you the best of luck. Stay in touch! We can make it through the heal...

By KeepChang... 2 weeks ago
I had a nipple sparing bilateral mastectomy in 2017 at KU. I had expanders placed and had implants about 6 weeks later. Im negative for BRCA gene, but my breast surgeon did tell me that my nipples would possibly be a spot where my cancer could come back. jump ahead to my 5 year “cancer free” anniversary and the time when Dr ODEA moved me to the survivor clinic in 2022. I went in for a CT scan because I had IBS issues and the image found that my cancer had spread to my pelvic bone. I’m now Stage 4 Metastatic THRIVER. i would highly recommend...

By Janymille... 2 weeks ago
Thanks for sharing. Thinking of you and wishing you complete healing!

By Iamasurvi... 2 weeks ago
view all posts

cancer screenings every 6 months

First post and replies | Last post by sjherman, 2 years ago

196

1

My mother and 5 aunts have all survived breast cancer, 2 aunts have had breast cancer twice. As someone with dense breasts and high risk, I add an additional layer of screening by doing an ultrasound when I have my mammogram. 6 months after my mammogram, I have a breast MRI.

By sjherman 2 years ago

First post and replies | Last post by jleeh, 2 years ago

204

1

I had a preventative mastectomy with DIEP reconstruction. (Belly fat) 6 years ago when I started this journey DIEP wasn’t an option for me. Did lots of research and met Dr. Collins at KU, very happy with my results.

By jleeh 2 years ago

Should I get a preventative mastectomy

First post and replies | Last post by jleeh, 2 years ago

378

7

Balance the risks and benefits of hormone replacement therapy

First post and replies | Last post by sjherman, 2 years ago

306

3

RE: Lumpectomy vs Mastectomy

First post and replies | Last post by momoftwo, 2 years ago

227

1

Hi @pkcg , Sending good wishes to you!! I was diagnosed with Ductal Carcinoma Insitu, but it was like sand granules peppered throughout my breasts, so I had a double mastectomy. I was happy to have the double mastectomy so I wouldn't have to worry about reoccurrence. I'm so glad you're here. Take care!

By momoftwo 2 years ago

I chose a lumpectomy

First post and replies | Last post by FOF101, 2 years ago

248

1

I also was diagnosed with stage 1 ductal carcinoma and I had a choice between a lumpectomy or a mastectomy. I did the genetic testing to see if I had the BRCA gene and that was going to make my decision. Praise the Lord I was negative, so I chose to do a lumpectomy. Dr. shook was amazing and giving me all the information, but letting me make the decision. I had implants so he arranged for his plastic surgeon to replace my implants after he filled in the area where the mass was with my tissue. My breast looks great and it’s very hard to tell tha...

By FOF101 2 years ago

Reconstruction then Explant

First post and replies | Last post by Helen, 2 years ago

275

1

I had a prophylactic nipple sparing double mastectomy with reconstruction and silicon implants in 2018. I too wanted to feel as normal as possible after the mastectomy. However, my body did not like implants. I started experiencing random shooting stabbing pains in my nipple area that was difficult to describe to my physicians. I also just began to feel fatigued and achy all the time which might have been just the stage of life that I was in. But the pain was just something I couldn't ignore especially since nothing was detected upon imaging. I...

By Helen 2 years ago

Been using the Estradiol patch

First post and replies | Last post by Juliesfan18, 2 years ago

307

5

Being on the "border" can be unnerving.

First post and replies | Last post by Kara C, 2 years ago

252

1

One of the only things I appreciated about having breast cancer was the amount of research that has been done and the clarity of how to tackle this particular form of cancer. Because of organizations like Susan G. Komen and others, doctors have been able to know so much about this disease and the best way to attack. However, when I met with my oncologist I discovered my scores and my age placed me "on the border" on how best to act. This left some of the decision up to me.... that made me super uncomfortable. I took the advice of my doctor, ...

By Kara C 2 years ago

Page 1 / 4 Next