NEWLY DIAGNOSED

Hi Margie, I knew that you would receive a great welcome - as I mentioned the women on here are fantastic!!

As to your questions:

• I haven't had the gene test. I am not sure if it is a personal preference to have the test or whether some doctors recommend it based on the individual circumstances of the patient. I have three sons. I think that if I have had had a daughter I would ask my doctor the benefit of having the test and if there was a good need have myself tested first and then talk again to my doctor about having my daughter tested depending on the result. My understanding is that only a small percentage of breast cancer is due to the BRCA1 and BRCA2 genes. Better ask your doc.
• I don't know how anyone would know their stage before surgery. The way it was explained to me is that we can only know the stage once we know the definite size of the tumour (which sometimes is different between the imaging you've had and the surgery) as well as whether it has spread to the lymphs or other places. I had a bone and CT scan before surgery which showed no 'hot spots' i.e. cancer elsewhere in my body. So just because of that I knew I wasn't stage IV.  I then had a sentinel node biopsy of my lymph to see if it had spread which it hadn't.  That and the size of tumour 19mm  told them I was stage IA. I did however get told before surgery what type of cancer it was (HER2+ for me) as well as the grade (grade 3 - aggressive) because of the pathology report from my initial core biopsy. Sometimes people get confused between stage and grade.
• Chemo is SOOOOO different for everyone. What I didn't know before breast Cancer (BC), apart from the fact that there are different types of breast cancer, was that there are many different combinations of chemo drugs. Because of this, it's impossible to know if chemo will be ok or not so ok. Some chemos are once a week, others are every 3 weeks. It just depends. Some women breeze through it and continue to work and exercise and the lot. Others (unfortunately like me) get hospitalised after each chemo round and end up watching endless Netflix while in bed at home feeling like they have the flu. I had what I would call "an eventful time" with chemo and yet I had no nausea, no mouth sores. Looking back it wasn't a walk in the park but it wasn't complete torture, I had good days and bad days. The main thing to remember is that it is manageable. If chemo is on your cards you will get through it. You will have lots of care and support from your medical team who will be with you every step of the way and you will be a trooper once you get to the end. It's kind of like being pregnant - horribly uncomfortable when you are going through it, but soon forgotten once it finishes.
• There are a lot of factors that go into the decision to have a single mastectomy (Mx) or double Mx, or a lumpectomy (also know as breast conserving surgery. Have your ordered the My Journey Kit from BCNA yet? The kit has a lot of information about this and other great things. Factors will be size, grade, type of breast cancer you have, and personal preference. Some women choose to have both breasts removed because they have a better chance of not getting breast cancer again in the future. For my type and size of breast cancer there really isn't any increased benefit from having them both off. My predicted survival rates at 5 years for Mx vs lumpectomy was roughly the same. Based on this I chose to have a lumpectomy because I had this psychological hang up about keeping my nipple. That was a very personal thing for me and other women will be different.

Hope these responses are helpful. Reading the My Journey Kit will really help and reassure you.