Newly diagnosed IBL, HR+ and scared

Hi Leanne just replying to get you bumped back to the start in the hope you will get relevant answers.  Lov from Ann

Hi Leanne

I was diagnosed with invasive lobular breast cancer in September. In the whirlwind of tests that followed it was discovered that it was in my lymph nodes so I had a wide local excision with 3 lymph nodes removed. 

I’m due to have radiotherapy but not chemo as I had Oncotype testing which is genetic testing of the cancer, which determined that chemo wouldn’t be beneficial. 

I’m a bit older than you (55) but my first thought was for my granddaughters. I thought there was no family history of BC but I did find that my great grandmother died with it (this was in the 70’s and she was 102 and declined treatment).

This is a brilliant site for support. There will be others who experience the same as you. Any questions ask away. 

Rachel

Hi Leanne. I was diagnosed on 17 Nov, so just a few weeks earlier than you. Mine was a different type - invasive mucinous carcinoma. Who knew there were so many different ones!? I'm 47, also with no family history, and like you was completely floored when I found my lump. All the initial tests and appointments are so overwhelming, and all consuming.

I had a mastectomy with immediate implant reconstruction on 20 Dec. So tomorrow I will be 3 weeks post op. 

Things definitely improve once you start on your treatment plan and somehow we find a strength within us that we didn't know existed before.

I just wanted to say Hi and wish you well. Everyone said to me, take one day at a time. It's so very hard to do, but otherwise you can just worry yourself silly xx

Hi Leanne.

I was diagnosed in October with a type of ductal cancer in situ. It was quite a large lump  (4cm) which was thought to be slow growing and non-invasive. 

I had cysts for years which on previous mammograms hadn't been of concern, so the October result was a bit of a shock. 

I had a mammoplasty in December and 4 sentinel nodes removed for checking. 

No cancer was found in my nodes but as the lump was estrogen positive I'm on letrozole for 5 years. I have my oncologist appointment in two weeks to see what's next

Asking questions on this forum and the breast cancer nurses helped when I was imagining all kinds of outcomes. As I got more info and started to see a path through this, I started to feel better. 

Take care  xx

thank you for replying thank you for replying. I’m so sorry that you are going through this aswell. 
is it a good thing about the oncotype? I’ve not heard of this yet so please excuse my ignorance 

Thank you so much for your reply also, I really didn’t realise there was so many types!! I’ll have to looK your type up. I do hope it’s not to much of a rough ride for any of us. It is really scary although I’m putting on a very brave face to everyone around me. I am trying to take it one day at a time. Thinking to far ahead just increase my anxiety. I think I’ll feel a little better once I’ve had the op and got it out of my body. Does that make sense? I know there’s plenty to follow after but that’s my focus at the minute. I don’t have a date yet. I’m waiting on my mri scan first 

Reading all of your stories breaks my heart that we are all going through this. It’s so unfair isn’t it? As awful as it is, just hearing from you ladies and knowing I’m not alone does help. So thank you for replying. 

thank you 

I’m currently struggling with what to do surgery wise. 
my consultant is suggesting lumpectomy might be a good idea, but I feel like asking them to take both breasts. I’m so scared of recurrence or it not being removed fully. Maybe I’m being over cautious but I really want the best shot of getting rid of this. What do you ladies think? 

I have definitely felt a huge sense of relief since the op and am sure you will too. I spent so much time considering what I thought were my options for surgery, but when it came to discussing it with my consultant it quickly came down to one best option.

I honestly have no idea if they would take both breasts if only one is affected??

My initial recommended treatment plan was for lumpectomy + radiotherapy, but following my MRI this changed to mastectomy + radiotherapy and possibly chemo (depending on the onco score).

• Now I know from my pathology report that as well as a 2.4cm invasive tumour I also has 10.7cm of DCIS! This was not picked up from any of the tests, so for me, mastectomy was 100% the right action. I have read how plenty of others only need a lumpectomy though.. x