Feeling a bit lost 😕

Hello everyone. My first post on the forum
so please forgive the rambling that follows. Just feeling rather lost at the moment. Diagnosed with primary BC in 2018. Chemo & radiotherapy following left side mastectomy. Won’t say I sailed through the treatment but saw it as a challenge & felt positive throughout. This is so different. Was experiencing pain in my ribs around Oct/Nov 2023 & following an early morning stretch felt a pop on my ribs & excruciating pain. Thankfully my GP was amazing and to cut to the chase, just after Christmas was dropped the bombshell that I have secondaries in my bones, liver & lung. Commenced Fulvestrant injections & Palbociclib in Jan. Had a CT scan on Day 1 of Cycle 3. Follow up appt with Consultant on Weds this week. Thinking it would just be the usual bloods & well-being chat I went on my own. The treatment hasn’t worked as they would have hoped, and scan shows progression. :pensive:. Couldn’t take in anything more he said after that. Been given info on a trial Sacituzumab Govitecan as well as info on Paclitaxel, Nab-Paclitaxel & Capecitabine to read & decide whether to opt into the trial. I know I should have asked lots of questions but my brain just turned to mush. Sorry for the lengthy post, I’m not even sure what the purpose of it is :flushed:. Guess I’m just looking for anyone else who might be on the Sacituzumab and what their experience has been like? Much love :purple_heart: xx

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I am not surprised you feel a bit lost. This sounds like it came a bit out of the blue. You can totally be forgiven for not really taking in what your consultant was saying for most of the appointment. Have you got a contact (such as a breast care nurse) at the hospital you can call to go through things again?

I personally don’t have experience of secondary breast cancer, but there are posters on here who do. We have a section here for people, and maybe some users there will be involved in the trial and can give you more information.

Living with Secondary Breast Cancer You’ll be able to talk, listen and learn with people who understand the challenges that secondary breast cancer brings. Also monthly sessions, facilitated by a therapist, are held in a variety of locations across the UK and online. Find a group.

You can also call our Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small

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Hi,

Sorry Fulvestrant didn’t work for you it must have been devastating news.

I’m unable to comment on the medication you mention, but i think you should get a letter post appointment from the Oncologist explaining what was discussed. As Scientismafier says reach out to your BCN and ask for a meeting to discuss the information you have been given its a lot to take in, and a big decision to make. I’m not sure if you have a local Maggie’s center or if they have anyone who can help you understand what to expect if you go on a clinical trial. I’m sure you will be closely monitored.

Join the secondaries forum and post any questions you have there and i’m sure someone will reply.

Your team will work had to find a drug regime that works, and due to medical advances there are lots more options now.

Dont feel rushed into making a decision and ask for a second opinion if you think that would help you choose the way forward.

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Goodness, what a lot to take in. My head is spinning just from reading your post.
I had a really bad experience with my previous oncologist so now my husband comes with me to all scan result appointments even though he has no idea what’s going on and doesn’t add anything. He’s just there for when I get news of progression, which my oncologist reminded me “will come at some point”, last time I saw him. Thanks for stating the obvious!
Anyway, I hate it when they give you a choice as they’re the experts not us. I think if it was me, I’d be tempted to go for the trial as I’m not sure you have much to lose. It gives you another line of potential treatment. If it doesn’t work then you’ll be in the same place you are now. The danger is if it doesn’t work it could spread even more, but then it could work really well. I’d give the make 2nds count trial people a call. Patient Trials Advocate Service - Make 2nds Count

Please let us now how you get on.

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Dear Loubylou,

Welcome to the forum, so pleased you have put pen to paper. It’s just what you need at the moment to get it out…

I’m so sorry I can’t help you with the medication they’re offering as I don’t know anything about it but I want you to know that I’m here for you along with all the other lovely ladies on this site. Some will have great knowledge of what you’re going through, anxiety take such a toll on us. Sometimes nobody can help with cancer, but they can with emotions.

Maybe have a note pad to hand to jot down some notes as the days go on. Take it along to your consultation with you or when speaking to your breast cancer nurse as our heads are all over the place at the moment.

I do wish you health and happiness going forward. Please keep posting and let us know how you’re doing, but most of all remember we have all been there and now we’re here for you.

With the biggest hugs my brave lady Tili :pray::rainbow::pray::rainbow:

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I have no experience of sacituzumab govetican, but there are several threads around the site referencing it, usually under its brand name Trodelvy. It’s a possible line of future treatment for me (I have PD-L1 positive TNBC metastised to my liver). Trodelvy is an immunotherapy/chemo conjugate designed to deliver chemo into cells carrying the TROP2 protein, common to TNBC tumours.

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Thank you so very much to all of you for replying, it really has helped massively :smiling_face_with_three_hearts: xx
Since my original post, I’ve been to a group session for secondary BC at Maggies, had a chat witb the trial nurse, and BCN, and appt yesterday with them all & the consultant and also took my sister for support. Also had some really useful links & info from a Facebook group I’ve joined. I feel a bit more knowledgeable now and not so lost! Knowledge is power :muscle:(sometimes ) !!
I’ve agreed to the trial although no guarantees I’ll get the trial treatment obviously.
Thank you again for taking the time to respond it’s very reassuring :heart: xxx Much love & best wishes :heart:

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