Knowledge is power. Tell me all things IDC related.
Hi all, I am new to this group and newly diagnosed. I am a 43yr old female that had IDC Grade 3, Estrogen Progesterone Positive, Her negative cancer. So far, we believe my cancer is contained to one tumor appx 2cm in size, no lymph node involvement shown on MRI. My mother recently passed from breast cancer. However she was a PALB2 carrier. My maternal aunt passed away in her 40s from breast cancer (unsure if she was a PALB2 carrier). I have tested negative for PALB2 gene.
I am meeting with a surgeon and plastic surgeon in a week. I am a surgery first candidate. I am preparing myself for the fact that I think the surgeon is probably going to tell me to do a lumpectomy with radiation but I think I want to do a double mastectomy instead. I watched my mom have a lumpectomy with radiation only to have the cancer come back years later and then have to do a mastectomy anyway. I am worried that if I do the lumpectomy I am going to live in constant fear of feeling a lump and having to have scans and more biopsies. I am also terrified of the cancer coming back or developing a new cancer in my other breast. I am also scared that if I did a lumpectomy they would not get clean margins first time and I would have to have another surgery. Radiation also terrifies me. The thought of having to do it for a long period of time every day and the potential side effects are scary. Plus if I did radiation then cancer came back later, I would have to do mastectomy anyway.
Help! Any advice from people with same cancer as me? What did you do? Lumpectomy/Radiation or Mastectomy/reconstruction?
I am also having anxiety about the fact that I will not know if I need chemo until after surgery. I am a planner and all the unknows terrify me.
The thought of having to do hormone therapy for years after beating cancer is scary. Are the side effects of these meds really as bad as all of the things I have read?
Thank you in advance for any stories you will share with me.
Jami
Comments
-
Hi Jami,
We welcome you warmly, and we’re so sorry you’re here, but really glad you found us. ❤️
Everything you’re feeling is completely understandable, especially with your mom and aunt’s history.💔 Many women in your situation struggle with the same decision, and you’re definitely not alone. Even if your surgeon recommends lumpectomy + radiation, it’s very valid to feel that a double mastectomy would give you more peace of mind. This is such a deeply personal choice, and you deserve to have your concerns taken seriously. We encourage you to express this to the surgeon.
The waiting and unknowns about chemo and long-term hormone therapy are some of the hardest parts early on. One thing to know is that with ER/PR-positive, HER2-negative early-stage breast cancer, many women are eligible for a test called Oncotype DX after surgery. This can help determine whether chemotherapy would truly be beneficial, and for many people, it provides reassuring guidance.
Try to remember you don’t have to figure everything out at once — step by step, your team will guide you. And when it comes to hormone therapy, there are different options, and your doctor will work closely with you to find the best one for you and help manage any side effects you may experience along the way.
We’re so glad you reached out. Please keep posting and let us know how your appointments go. 💗
0 -
Hi @jsjohn11
Sorry that you have had to join us, but very glad that you have found us.
First of all, stop and take a deep breath. You've got this! You WILL get through this. You need to take things one step at a time. It's really too much to try and think through all at once.
You are now in what many of us would say is the hardest part of the journey. There are so many questions and so many decisions that it is truly mind-swirling. Know this. Most of us have found that once you have 'a plan', things seem much more manageable. You then can tick off things one by one as you get to them.
The decision between having a mastectomy and lumpectomy should be YOURS. If your surgeon is not willing to allow you to make that decision, it might be time to talk to another surgeon. Do you have someone that you could bring along to your appointment to help be sure that you get your voice heard? If not, it will be okay, you will still get through it. Prepare yourself with a list of your questions and concerns so that you are sure to get them all answered. Just focus on that appointment for now.
For the short term, set aside your concerns about chemo and hormone therapy. Many people get through both of those without too many issues and with chemo, the Oncotype test the mods mentioned will help you decide whether or not that is something to consider.
We're here for you. Take things one step at a time.
Take Care.
0 -
Just dropping in to offer a virtual hug and affirm what others have said about the surgery decision. My cancers were different than yours so I can't rightly comment much more than that.
You might find it helpful to join the "in treatment" virtual group. Listening to others' stories might offer helpful perspective, and of course give you some emotional support as well. Keep us posted!
0
