New diagnosis

I’m newly diagnosed only 2 months ago breast cancer spread to spine and lungs. I had blood tests and scan and after all results. We decided on a full mastectomy which I had 2 weeks ago. 8cm tumour removed and 21 lymph nodes removed with 15out of 21 cancerous. I’ve just started on hormone therapy. And then on to ribrociclib instead of chemo. An oncologist decides which is the best treatment plan. I will be then having regular scans to see if has stooped growing. No side affects from hormone therapy as yet. It’s really scary and I’m suffering with anxiety at the moment think it’s the unknown. Hope everything goes ok for you 

Hi 

thank you for sharing your story and I’m sending love and best wishes for your treatment. I’ve had all relevant tests and now await the next appt to discuss treatment on the 13th Feb. I have a tumour in my right breast and cells in my spine, interestingly there is nothing they can detect in the lymph nodes so they aren’t yet sure which wil be treated as primary. 
the anxiety is awful isn’t it - not knowing is the worst. 

Hi 

the waiting is the worse. I’m trying to keep busy new hobbies etc. My blood pressure went sky high as well as the shortness of breath heart pounding away. And the worse that gets the more anxious sending you love and lots of healing thoughts. Xx

Hi I was diagnosed in June 2024 with mets to spine after being in excruciating pain in my upper back and then in the space of a few weeks discovered a lump in my boob, it was such a shock.  I had CT scans and luckily it hadn’t  spread anywhere else.

since then I have been on Abemaciclib, Letrozole and a bone strengthening injection which I have dealt with well so far other than high blood pressure from the Letrozole but that is managed.  Once I had the diagnosis and feeling very scared I was seen by the breast consultant who was lovely and then a few weeks later saw the oncologist who gave me my treatment plan, I had a few weeks not being well after that because the drug didn’t agree with me so they switched me to Abemaciclib which I am good with. I am in a positive place at the moment, I have days where I get scared of the future but I try to not to think too hard about it we just have to get on with it, there are lots of positive story’s on the breast cancer now forum, that really helped me stay hopeful

I have also had 2 scans over the last 6 months and they have told me my spine lesions are shrinking so long may it continue, just waiting for my next results in a few weeks

good luck let us know how you get on 

Hi

im glad things have improved for you I’m hoping the same. Mines also spread to my spine, and something of concern in my lungs as well. Can I ask you a few things like 

have you given up work?

have you been abroad on holiday?

do you get PIP?

Absolutely, I stopped work for 6 months firstly because of my back but then I needed the time to take things easy and get my head around the situation. I was on full pay and my work have been really good with me.  I returned on a phased return in December and still do shorter hours but as of this week I will return to my normal part time hours with a bit of tweeking

i haven’t been abroad yet but intend to go on a girly holiday later in the year  but I have travelled on the train to meet family and friends for short breaks which has been like a breath of fresh air 

I’m not sure what PIP is ?

i hope yours plays ball and does the same as mine has, still an anxious wait for my next results, let us know how you get on

take care and good luck xx

Hi ladies , so sorry about your diagnosis. I know waiting is awful! . I’ve got liver mets and I’m 18 months down the line on abemaciclib and Letrozole (which is good) but I’m anxious for 2 scan results tomorrow. I had to reduce the dose of abemaciclib due to side effects so scared this will make a difference . My last scan was stable. I’ve also had a brain mri due to headaches and tinnitus so praying it hasn’t spread there . Anyway, I wanted to help regarding pip . If you’re stage 4 you should get the highest level of pip whether working or not . Ask your McMillan nurse or Maggies centre about it and they sort it all out for you.  . I’ve medically retired and it really helps! Good luck to you all . Xx

PIP highest level is around 750 pounds per month! Xx

Just to add, I’ve had amazing holidays abroad since diagnosis so it’s doable . I’ve been to Lisbon , Malaga , Seville, Benidorm and Venice along with trips in the UK. There’s no reason why you can’t travel if stable ! You just need to take easy! Just make sure you have good insurance if going abroad. Xx

Hi I hope your results come back fine for you and your cancer is behaving, so you can have lots more holidays. They have told me to get on with my life and enjoy it while I can. I’m hoping to retire from work. And travel going on holiday is the thing I like to do most. Who do you have your travel insurance with. And being able to claim PIP would help enormously I’ve not seen any McMillan   nurses would they fill out all the forms for me. Maybe I’m too early to as have not fully started on my medications yet. 
xXX