Jul 15, 2022 07:24PM oldladyblue wrote:

Hi tedebarre, it is great that genetics aren't involved and your daughters can breathe easy. I had the same reaction when I found out. Sounds like things are in control for moving ahead for you.

Jul 26, 2022 03:29PM jonib wrote:

I had a recurrence in 2016 after 8 years of being cancer free. The second time was much worse than the first emotionally. I had genetic testing done and there was no genetic link to my cancer although my sister was diagnosed a year after my first diagnosis. Genetic testing did find that I have a slightly greater risk of colon cancer than the general population. Stay positive and enjoy every day.

Aug 13, 2022 05:51AM oldladyblue wrote:

Woohoo tedebarre! Glad all is going well and cancer is gone!

Sep 24, 2022 05:18PM mavericksmom wrote:

Glad I found this topic! I am on my third diagnosis with breast cancer. IDC in 2003, 2 lumpectomies, due to margins, chemo and rads. Dec 2018 diagnosed in same breast with ILC, treated with mastectomy with DIEP reconstruction. I was on Letrozole for 6 months but quit. I was refused a bilateral mastectomy at the cancer hospital I went to in Philadelphia because the surgeon said the policy there was not to remove a healthy breast. He said I could get a second or third opinion, but I was already in shock from getting cancer again after almost 16 years of being cancer free. I couldn't stand the thought of gathering records and disks and seeing another doctor. I thought I was already at one of the best facilities in the area. I was wrong. Thankfully I transferred all my records to a local hospital in July and saw a wonderful breast surgeon, oncologist and plastic surgeon (he specializes in lymphedema which I have) prior to the mammogram that started the whole diagnostic process. That is huge because it is the first time, I wasn't diagnosed first and then assigned a doctor.

I received an invitation to a survivor's event at the cancer hospital ironically to be held on the same day as my upcoming mastectomy! I wrote a letter to them telling them I couldn't attend because I will be having a mastectomy that day! I was professional, not angry, but I told them how their policy is affecting so many people. Not only does this affect me, my husband, children and grandchildren, but I work with special education students in a school, and they will be without support in many of their classes while I am out on disability. The worst part is it is their fault because they refused to allow me to have a bilateral mastectomy. I do have a strong family history, mother, two sisters and a cousin on my mother's side all had breast cancer! My letter to the hospital explained all that and it is my hope they will change that policy so no one else goes through what I have gone through!

I think there might at least be a chance for policy change because they wrote me and told me it was under review, and they will let me know in writing within 30 days. The letter was sent certified.

I did see a genetic counselor in 2020 and was tested for 54 gene defects. I had been tested for BRCA genes only in 2004, so I knew I wasn't positive for that.

I am still trying to wrap my head around all of this. Having it for a third time is like having it again.....for the first time!

It is just starting to feel real now. I had my pre-surgical appointment with my PS last week. I didn't realize that it will be an outpatient surgery, but I am actually glad, as I can do my own thing in the comfort of my own home. The only downside is no IV pain relief. At least no one will wake me in the middle of the night to take my blood pressure! I also have a phobia of hospitals, whenever I am in one, I get panicked! They don't know that, but just another good thing about it being an outpatient surgery! I messaged my breast surgeon and told him that since this would be an outpatient procedure, under NO circumstances will I stay overnight! I refuse to get hit will all kinds of medical bills because even if you stay overnight, it can still be considered an outpatient procedure.

As someone else said, I am much older now too, late 60's! I am also scared to death. I want to cancel the whole thing, but of course that would not solve my cancer issue! The only reconstruction choice I have now is with an implant. So I will get two drains and an expander. Oh goodie! Ironic because I wanted both breasts removed without reconstruction in 2019, but they would do that. They talked me into the DIEP surgery. I thought about going totally flat now, asking them to remove both my real and fake breast, but I went through so much after the DIEP surgery and I really like how my fake breast looks and feels. I heard from others that the implants are not nearly as good, so I have a feeling I am not going to like the end result of this surgery. Not much I can do about that.

And, as if having an arm twice the size of the other due to lymphedema from 23 nodes being removed in 2003, now, thanks to my former breast surgeon, I must have lymph nodes removed from my other side! I will just look really fat with two lymphedema arms! I might get lucky and not get lymphedema, but luck isn't something I normally have. My PS this time specializes in lymphedema and plans to do a lymphovenous bypass. He did tell me there is a chance he won't be able to do that. I am fully expecting a double whammy of lymphedema. Prepare for worst, hope for the best, right?

Sep 25, 2022 01:00PM mavericksmom wrote:

I have my mastectomy on the 12th. Let's hope it is a lucky day for both of us!