Newly diagnosed and need support
Hi all, I’ve been reading here for the past couple of weeks but finally have the courage to reach out and ask for help. I’m really struggling right now. I was diagnosed just before Xmas with lobular b...
Forum Discussion
Hi @Liz27, you have come to the right place for lots of support and information. It sounds like you are in good hands and your doctors are being thorough and keeping you informed.
Your story could just about be mine except I joined this group 1 year ago when I was diagnosed with ILC in December 2019. There is never a good time to be diagnosed, but close to Christmas has another layer of challenge that’s for sure. I too took a bit of time to post, I was just terrified, shocked and struggled to make sense of everything that was happening. Take your time and ask as many questions as you need. I had ILC in left breast and I knew from the start that I wanted the bilateral mastectomy - my decision as I had dense breasts etc. I had chemo first (4 x AC, 12 x taxol) which gave me time to think about everything.
I also had expanders put in and switched to implants in December 2020. Typing this reply almost feels like a letter I could have written to myself 12 months ago.
What you are feeling is very normal and it is normal to experience all different emotions in a day. I enlisted a psychologist who was excellent in helping me to process everything. Whilst I too have a very supportive family, I needed to be able to speak with someone who was emotionally removed from the situation. There is also support available for your children and your breast care nurse may be able to help you with connecting to it. I am a teacher and would definitely recommend making contact with your kids’ schools so that they can offer support as well. I am not sure where you are based, but schools are generally open the week before the kids start back.
I am going to tag @arpie because she is a wealth of information and will also point you to the separate ILC group on this network.
Try to be gentle and kind to yourself. You have had a huge shock delivered to you and it kind of feels like everything is in a state of flux, but this is the hardest part - the waiting, the tests and the temporary uncertainty. Your medical team is going to come up with a plan and once you start, I think you will feel more secure. I had a fabulous breast care nurse, but I slipped through the cracks a bit because I did chemo first, so I really had to chase it up. I realised what I had been missing because she was really able to talk me through the surgery.
My surgeon was very supportive of my decision for the BMX. Please make sure you ask your surgeon lots of questions especially if your are at all unsure about having the BMX.
Now, this is so easy to type, but can be difficult to master - take one day at a time and don’t get too far ahead of yourself. This time will pass and you will get through it and you will be offering support to others who join us. If I can help in any way, just let me know. 12 months ago the fabulous people on here reassured me that I would get through what lay ahead and they were right and I want to pass that onto you - you are going to be ok. Sending you a hug M x
Your story could just about be mine except I joined this group 1 year ago when I was diagnosed with ILC in December 2019. There is never a good time to be diagnosed, but close to Christmas has another layer of challenge that’s for sure. I too took a bit of time to post, I was just terrified, shocked and struggled to make sense of everything that was happening. Take your time and ask as many questions as you need. I had ILC in left breast and I knew from the start that I wanted the bilateral mastectomy - my decision as I had dense breasts etc. I had chemo first (4 x AC, 12 x taxol) which gave me time to think about everything.
I also had expanders put in and switched to implants in December 2020. Typing this reply almost feels like a letter I could have written to myself 12 months ago.
What you are feeling is very normal and it is normal to experience all different emotions in a day. I enlisted a psychologist who was excellent in helping me to process everything. Whilst I too have a very supportive family, I needed to be able to speak with someone who was emotionally removed from the situation. There is also support available for your children and your breast care nurse may be able to help you with connecting to it. I am a teacher and would definitely recommend making contact with your kids’ schools so that they can offer support as well. I am not sure where you are based, but schools are generally open the week before the kids start back.
I am going to tag @arpie because she is a wealth of information and will also point you to the separate ILC group on this network.
Try to be gentle and kind to yourself. You have had a huge shock delivered to you and it kind of feels like everything is in a state of flux, but this is the hardest part - the waiting, the tests and the temporary uncertainty. Your medical team is going to come up with a plan and once you start, I think you will feel more secure. I had a fabulous breast care nurse, but I slipped through the cracks a bit because I did chemo first, so I really had to chase it up. I realised what I had been missing because she was really able to talk me through the surgery.
My surgeon was very supportive of my decision for the BMX. Please make sure you ask your surgeon lots of questions especially if your are at all unsure about having the BMX.
Now, this is so easy to type, but can be difficult to master - take one day at a time and don’t get too far ahead of yourself. This time will pass and you will get through it and you will be offering support to others who join us. If I can help in any way, just let me know. 12 months ago the fabulous people on here reassured me that I would get through what lay ahead and they were right and I want to pass that onto you - you are going to be ok. Sending you a hug M x