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Newly diagnosed

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Member

Re: Newly diagnosed

Hi gemini

Sorry you are joining us here, I too posted a similar post a few months ago...  

My primary was back in 2003, and purely by accident last year I discovered that I have mets in my bones, and base of spine. . So thats 16 years of not knowing . they do believe that it has been there for quite some time.  So I'm living on my nerves.. I've two young children, and really can't snap out of this doom of death...

I'm due a scan mid October, and really am expecting bad news . 

I'm on ibrance, faslodex and Bone injections. It really is so hard to function daily, every moment of my day I think about my diagnosis, I wake up thinking about it and I go to bed thinking about it.. ...

 

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Member

Re: Newly diagnosed

Hi Gemini

I am newly diagnosed in april with mets to liver, lung, 1 rib and left hip. My primary was 2015. I am still reeling with shock as I had no symptoms from liver or lung, I went to GP with a slight on off niggle in rib in march, i was referred for a bone scan which picked up low volume spread to those bones I mention. I was then sent for a CT which then showed the spread to lung and liver, I nearly passed out when I was told results which was over the phone at home due to covid.

I finished 6 rounds of taxotere chemo in August, a CT at the end of august didn't show any great success in fact some areas in liver and the lung lesion had progressed slightly so I'm now on letrozole and I'm continuing with herceptin and perjeta infusions every 3 weeks, next week will be my 8th treatment of this. I too feel very scared and teary but not as much as I did when first diagnosed. 

Coming on here is helpful as theres lots of support and encouragement. 

 

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Community Champion

Re: Newly diagnosed

Hi Gemini, sorry you have to find yourself here, as GillyflowerI has already said. We do all understand what you’re going through right now as we have all been there. This is a place where you will get practical advice and support from ladies living with secondary BC who share their experiences with you,  it obviously cant provide all the answers as we’re not oncologists! The first bit of advice is do not google anything! I did any years ago, 2008, when I was diagnosed with secondaries to my spine and even then the stats were way out of date and they haven’t been updated since! I have found it’s also not useful, shall I say, to ask your oncologist of your prognosis, to be honest they don’t know yet and will only be taking an educated guess. I think they do understand more once you have been on treatment for a while so they can judge how you react and cope but until then they generally don’t know. On the forum we are a group of mainly ladies, I think one chap posted a few months back, who cover all sorts of secondary BC for both treatments and where we have mets (metastasis) so there almost always will be someone who can answer any question you might have. You can either start a new thread, like you have done with this one, or ‘Reply’ to an existing one - it will just appear as the most recent posting and doesn’t mean you’re only replying to the last persons post.

Once you know more about your treatment  and when you will start I think most of us have adjusted and coped better, it’s the fear of the unknown that really gets to us. Once you do know, or have questions about what you already know please feel free to post and we will try to provide any answers we have.

Nicky x

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Community Champion

Re: Newly diagnosed

Hi Gemini,

You are so welcome!  It helps to share and listen to each other's stories I think, as I have found lots of hope from other people sharing their experiences.

Its been 9 months since I got my secondary diagnoses.

I was also pre-menopausal at diagnosis - I was 38 when my primary diagnosed in 2018 and 39 when I was diagnosed with secondaries. 

As soon as the secondaries were diagnosed, I was put on Zoladex (to put me in menopause), Letrozole, Palbociclib and Denosumab.  This worked really, really well for my bones.  After three months, I had to change to Capecitabine, as my Oncologist was worried I had mets in my liver (but it could also be benign cysts as I get a lot of those on my liver too).  I'm still waiting to find out what the liver lesions are so in the meantime that means I have to stay on Capecitabine.

Treatment has been very very good for me, thank you for asking.  I was very lucky to have very few side effects and to be honest, there are days when I feel so physically well that I *almost* forget I even have cancer.  I have also spoken to lots of other people who have the same diagnosis and many of them are doing very well.  Hopefully some more people will reply to your post and you can get a sense for just how many people do still live for many more years with this 🙂

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Member

Re: Newly diagnosed

Hi gillyflower 

thank you for your response and kind words I really do appreciate it. My oncologist was really positive but not quite post menopausal yet, so currently receiving Prostap injections, letrozole and   Abemaciclib twice a day.

im sorry to hear your diagnosis but you sound so positive which is uplifting for me to read.

how long have you been diagnosed with secondary BC? How’s your treatment going for you?

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Community Champion

Re: Newly diagnosed

Hi Gemini,

Welcome to the forum but of course I am sorry you find yourself having to come here at all.  Its a real shock to the system when you are diagnosed with secondaries.  No need to apologise at all, it is a miserable thing you are going through and many of us here are able to relate to what it feels like just after getting the diagnosis.  Sending you virtual hugs xx

I was also diagnosed with my primary in September 2018, finished the full raft of chemo, surgery and radiotherapy by the end of May 2019.  A solitary lesion had also been found on my spine on my C7 vertebra during treatment for my primary, but I was told not to worry about it as it as they thought at the time that it was something harmless.  In January 2020 I was diagnosed with secondaries, the C7 vertebra had collapsed and further little mets were found dotted throughout my spine, pelvis and ribs.

I also remember thinking at the time of secondary diagnosis that this was the end and feeling like everything had spiralled out of control.  I was pretty devastated.  I also asked "how long have I got?" but my Oncologist did not want to look at things from that perspective.  Instead, she was very positive and essentially said "look, its not good news of course and there is no cure right now, but we CAN treat this long term for many, many years."  She was clear with me that sometime in the future, the disease will eventually progress, but the treatment plans they put in place are there to slow down that progression as much as possible and still enable us to lead a good quality of life.  I felt very reassured by her positive outlook even though she was giving hard news.

If you have a look around this forum, there are quite a few long term survivors and lots of stories of hope!  When you have adjusted to the news and you have a treatment plan in place, things can start to feel more back under control again and you find a way of living a "new normal".  In fact, I recently posted an article on here about a woman who has been living with metastatic breast cancer for 25 years!!

Has your Oncologist discussed a treatment plan with you yet? xx

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Member

Newly diagnosed

Hi everyone I have Recently been diagnosed with a single mets in my thoracic area of my spine. All I can think about is how long have a got left 😔 I feel so out off control. My initial diagnosis was in October 2018 Stage 2 nodes 1 breast cancer. I would be grateful for any advice and support. How long have you guys been surviving? Sorry to sound miserable 😩 but I’m so frightened.