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.

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

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

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. 

Hi, I also have a single Mets on my T-9.  I was diagnosed 4 years and 9 months after my primary breast cancer Stage 1 - preventative chemo and radio plus Tamoxifen.  I too was petrified when told about my mets last December but look I reached remission aafter 6 months on Ibrance and Letrozole.  It is a hard journey, I am not going to lie to you, but my oncologist is very positive as it is a single mets. The almost 5 years of primary I never thought about cancer not that it would return.  I was fear free.  I cannot say that now unfortunately.  My back has started aching a little again and I am very concerned, my Oncologist does not seem to be and blames it on the Letrozole.

Be strong, keep moving, we have no other option.

Hi Gemini111

Just seen your post from September and hoping that you have settled into your treatment now. I wanted to give you some hope - I had my 8 years cancerversary de novo stage 4 sbc bones & liver mets on 19 Dec and am still going thanks to the treatments that have been available to me (currently on my 12th!). Initial diagnosis is a very hard time and it takes a while before you settle into your new but different life.

My advice, I suppose, would be to try & live as well as you can. Yes there will always be bad days (scan results day usually) but enjoy precious time with the people that mean the most to you and they will make the bad into good days. 

If you want to know anything about the treatments or you’re feeling low, the very best place to get advice and support is from this forum. Please do not Google or look at prognosis statistics.

Take care of yourself.

Helen x