I notice alot of people on this site don't answer the question whether you're estrogen, progesterone positive, or Her-2 positive or triple negative....Do you not know this? I'm finding more and more people don't know and I'm surprised more doctors don't teach patients about this because it makes such a big difference in treatment, recovery and chance of re-occurrence. What's your experience?
I have a triple negative, IIA, metaplastic carcinoma - originally diagnosed as a malignant phyllodes. This is a rare, potentially very agressive tumor type. Nodes were clear, but while that is good news, it doesn't necessarily mean that it won't travel. Obviously, since triple negative there is no hormone follow-up. Was treated agressively with surgery, chemo and radiation. So far so good, knock on wood.
Hi @A MyBCTeam Member I read your reply and wanted to help clear up some possible confusion for you.
EVERYONE has a HER2/neu gene.
The HER2/new gene produces HER2 receptors which is where the breast cancer histology comes in. HER2 is a receptor for human epidermal growth factor. Human epidermal growth factor makes cells grow more quickly.
So, if your cancer cells contain a significant amount of HER2 receptors, you are considered HER2+ and the cancer can be considered more aggressive and fast growing.
Hope that helps!
@A MyBCTeam Member: Your words are uplifting - thank you! I'm fantastic. May 2012: I fainted at home (became very over heated) with only my pit/boxer home with me. When I came to, my dog would not allow me to stand up and kept not allowing me to stand up. I required 4 stitches in my chin, down to the white meat. My dog was licking my face when I came to and still dont know how long I was out for. I know he licked my chin and tasted my bloodied chin - his temperment has not changed none what so ever. He's going to be 7 this November. I had the right mind to call my oncologist to tell her that I fainted. She requested a Brain MRI and a few days later, learned that my cancer went to my right cerebellum (balance only) and was measured at 1cm. Started Tykerb June 2012 which is a brain blocker (not regular pharmacy drug, has to be drop shipped from the manufacturer cost about $5,000.00/month for 150 pills at 5 pills a day. My original copay was $80.00/month and now have 2 companies helping to defray the cost of my out of pocket expense, which is down to $25.00/month/ Getting periodic Brain MRIs and Brain Reviews, noted that it was getting a little bigger (1.1cm) and Dr. Ghassan Bejjani(Shadyside Hospital/Hillman Cancer Center, Pittsburgh, PA) wanted to operate. I agreed and everything was very successful. He said that the brain is only for brain things and the tumor was not part of it and wanted to have it removed before it got out of hand and not want it to be something he couldn't control. I do have minor issues with my penmanship, typing and some memory lapses - - other than that, I'm on THIS SIDE, still alive and stories to tell of my own PERSONAL JOURNEY and not shame of the fight I fight everyday to LIVE!.
Even though I am a masters prepared nurse with many years in health care, I agree that it is very confusing to learn the medical lingo and to grasp the meaning of all the treatment options. I had my husband at all of my appointments and did get two opinions before making my decisions. Both surgeons gave me the same information and options. I ultimately chose the Mayo Clinic. In addition to having a very well coordinated program for breast cancer, ultimately, the reputation of providing innovative, high quality care was the reason I chose Mayo. This was the right decision for me.
Initially, it was thought I had left breast DCIS only, which is a stage zero cancer. I chose to have a mastectomy because there was ductal hyperplasia 5 cm from the original tumor. Hyperplasia is a precursor to cancer and I wanted to rid of it as well. If I chose a lumpectomy, 5 cm (2 inches approx.) was a big space to remove on my B size breasts.(After my left mastectomy, the final pathology report also revealed a micro-invasion of tubular carcinoma, stage 1 arising out of the DCIS (cribriform type, intermediate nuclear grade, with and without necrosis). The tumors were ER+/PR+and in addition, the Ki-67 (Proliferation Index) was 1%. The Ki-67 shows the rate at which the cancer cells are dividing and my score of 1% demonstrates an extremely slow growing tumor. One sentinel node was removed and it was negative for cancer.
Because the risk of recurrence is about 1.5% for me, the oncologist felt the use of Tamoxifen would pose more risk than benefit. I opted to follow her advice of skipping Tamoxifen (I was actually prepared to sell her on the reasons I was NOT going to use Tamoxifen, so I was happy that she believed this as well).
I am currently working on reconstruction. I had immediate tissue expander placed at the time of the mastectomy and gradually worked to reach the volume the plastic surgeon felt was adequate. The implant exchange was 8 months after the mastectomy. I was not in a hurry and the plastic surgeon was conservative.
I am scheduled soon for additional fat grafting for projection and shape of the breast and also have some "dog ears" that need to be fixed. After that surgery, the nipple reconstruction will be completed.
I feel fortunate to be on this side of this journey and very fortunate to have the support of many people and access to excellent care.
I hope everyone is able to find one positive thing a day as personal journeys are completed.
Definitely know my type of breast cancer and what feeds it (IDC, ER+/PR+ HER2-) but you bring up a good point. Many people are either uncomfortable around medical lingo or simply don't feel empowered to ask questions and even second guess their doctors.
More likely the issue could be that women are quickly overwhelmed when information is tossed at them rapid fire (which seems to be the feeling when you are newly diagnosed).
Regardless, cancer or no, people need to be their own health advocates. Thank you for bringing that up.