Stage IV breast cancer with brain mets

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Hi Everyone, Unfortunately I am joining the group that nobody wants to belong to. I was diagnosed with Stage IIIb IDC ER8, PR0, HER neg in March this year and underwent lumpectomy and wide local excision in May and re-excision in June. 5/13 lymph nodes were cancerous. I started EC x3 in August to be followed by Docetaxel x3 not without problems. Cycle 1 saw a PICC line infection and clots so PICC line removed and Hickman inserted. Cycle 2 saw my BP plummet so I was forever passing out and became dehydrated. Cycle 3 I suffered neutropenic sepsis and was in hospital for 10 days, 2 days after cycle 4 I had a headache that wouldn’t go with painkillers and then started vomiting. After a further trip to A&E and an MRI scan I have was told last week that cancer has metastised to my brain and I have several large tumours both sides. I saw the oncologist on Monday and she is convinced that this spread before I had lumpectomy.

Everything has happened very quickly and I am still trying to process this information. I am having Hickman line removed tomorrow, all further chemo has now stopped on my breast and I am undergoing whole brain radiotherapy next week. I am managing pain with dexamethasone, morphine and have started Letrozole

Is there anyone on the forum in a similar situation that can provide some much needed support and encouragement on how to proceed from here. The hospital has been great and is putting palliative support in place but it would be great if I could share experiences and have some expectations on what to expect moving forward.

Good luck to everyone on the same journey

  • Hi

    It sounds like everything has happened really quickly and that you've had a really tough journey.

    I'm not a member of this group but I noticed that you hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list where it'll be more easily spotted. While you're waiting for replies you could have a look through some of the more recent posts in the group and join in with some of the conversations.

    It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hi Kazzangnu,

    I see your post is from a year ago but not sure if you ever managed to track any others down.

    I’ve just joined the forum looking for people in a similar position to me (more info is below). Hope you are doing well

    ——-——-

    My situation:

    My primary breast cancer diagnosis (invasive ductal carcinoma) HER2+ ER+ was in Dec 2018 and had extensive treatment. For approx last 2 years we thought I was clear. 

    In March I was diagnosed with secondary breast cancer that has spread to my brain, bones of skull and liver. I’m In treatment on docetaxel & Phesgo (trastuzamab and pertuzamab single injection) at the moment.

  • Hi Fiberty, 

    i read your story with interest as I too have skull base mets recently diagnosed also in tthe brain.  I’ve actually got facial paralysis on one side which they incorrectly diagnosed as bells palsey!  They’ve been somewhat grim regarding my prognosis but you seem to be doing well which I’m pleased to read.  Ive just had 5 sessions of radiotherapy and they want to put me on Alselib an immunotherapy drug.  I’m going to also check with them the treatment you’re having to compare so your post was really helpful.   

    have you had any issues with hearing or eyesight? 

    ali xx