Setting In
The reality is hitting tonight. I was diagnosed with ILC on 23 November and it's just been surreal. I've been going through the motions. Hasn't felt real until now. Had an appointment with surgeon ...
Forum Discussion
Hi @Yellow_Daffodil, I am sorry you are joining us here and we all can relate to what you are feeling. You will find endless support here and a lot of knowledge and great tips. I agree with everything that has been said here. I too was diagnosed with ILC almost 2 years ago. I remember those initial days very well. Whilst I have vivid memories of that time, there have been changes in treatment protocols in those 2 years. There is a test that can be done on your tumour - the oncotype test - which will cost you about $4000 to have done, but it can provide a lot of extra information about your BC. This was not offered to me at the time, but it is now offered particularly to women who are post menopause as it can give more information about whether chemo will be effective etc. This is a ‘user pays’ test here in Australia, but is standard in the USA. As mentioned, there is a Facebook group that is based in the USA and the members always speak of their ‘oncotype scores’. This may be something you want to discuss with your doctor.
Each of us have tumours that are unique to us which means our treatments vary. I had neoadjuvent chemo followed by a bilateral mastectomy (BMX) with reconstruction. I elected to have the BMX and my doctor fully supported it. My ILC was 4.8cm but as you know, ILC is more an area rather than a discreet lump. It was not seen on a mammogram but was seen in an US. My lymph nodes were clear and the doctor got clear margins.
ILC that is hormone (+) responds very well to AI’s. Generally speaking, a lumpectomy and radiation go together, but sometimes, a mastectomy may mean radiation is not done.
Many people who have ILC have surgery etc and avoid chemo and have the tablets (AI or tamoxifen) for 5 - 10 years.
Waiting for information is extremely difficult. Write down your questions for your doctor and try to have someone with you at appointments. Try to do things you love to do and keep busy. I know that is easier said than done, but it will help. Even though all the tests and scans are overwhelming, each one is going to give more information and help you with your decisions. Take care 🌸