Just diagnosed with Her2 positive breast cancer in my lungs. Declining treatment and wanting to connect with people in a similar position

I’m new here and I don’t have same diagnosis but I just want you to know I’m here, I’ve heard you and you’re not alone. I’m sure someone here will reach out. Huge hugs and listening skills is all I can offer right now. 

Thank you so much for your response. It means a lot x

Hello Browning 98.

  I can't help you with your tier 1 question. 

I had a mastectomy in 2018 for dcis.  And was told its clear, no treatment needed and it was only precancerous.  By 2020 the cancer had metastised into my sternum. By 2022 the cancer had spread to my lungs, left axillary lymphnodes,  and was on my chest wall under my mastectomy ( which was reconstructed). I love my reconstructed boob.  I chose not to bother with a nipple.  The scar from the mastectomy sometimes hurts depending on which bra style I wear. But the reconstructed scar tissue is barely noticeable ( different surgeons) I only had SABR 3 times on my sternum to apparently take away the pain.  It didn't make any difference to the pain.  

I also don't have any other treatments. No hormone therapy. No pregabalin. Nothing.  The only pharmaceuticals that I use is one week a month I take neproxen and co-codimol.   The other 3 weeks of the month I use boswellia for bone pain, and lungwort and NAC for my lungs, and occasionally milk thistle to help my liver. ( i always have a weeks break off the herbs so my body doesnt get used to them.)

I was told I'd be dead by last Christmas.  And I believe that I was told this because at the time I had decided to take their recommendation of using pregabalin and steroids and a couple of other pain meds.  I was completely knocked out by them and spent the two weeks that i took them, with no strength, no energy and just lay on the sofa all day every day.  I felt awful. I felt like I was dying.  After reserching the side effects i decided to go back onto my herbals.  They work a lot better for me and I've no idea why i decided to try man made drugs in the first place, maybe just to keep oncology happy. I no longer have anything to do with oncology.  

The end of life nurse rang me this week to say she had to take me off the critical list and hand me over to the stable nurse.  I asked her if she had any other patients that are doing as well as me with all these cancers and she said no. I can't say if it's the herbs that are helping me. Or if it's because I just don't stop moving around.  I gave up work ( massaging) a few months ago. Instead I spend all day on my feet working around the house and garden.  I don't sit down until 8pm.  I'm up at 5am. And I've never put it out there that I have cancer.  Very few people know.  I haven't even told my relatives.  Only my husband and children know.  And we don't dwell on it.  I think not having people giving me a sympathetic sad look works for me.  I only popped on here to see if anyone else is doing the herbal route and thriving.  My cancer is growing , but very slowly. But i feel aeake, alive and perfectly healthy. Nobody would think I've got cancer when they look at me. I hope that gives you answers.  Chances are that I won't look on here again for a long long time, so good luck on your journey, whatever you choose to do.  

Hi Browning98 I am not exactly in same boat as you.  I have secondary lobular breast cancer with bone mets in most of my bones including spine, ribs pelvis skull.  I worked for the DWP for 21 years.  I have just had to take ill health retirement and got Tier 1.  I think this is because I have a SR1 form from oncologist.  As to treatment I am taking everything that they throw at me.  I had stage 3 breast cancer 13 years ago and had lumpectomy, chemo, radio and then tamoxifen as I was 47.  Everyone has the right to decide treatment or no treatment.  I wish you luck.

Lee x