Hi- Newly diagnosed

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Im newly diagnosed with breast cancer that has spread to the bones. I was on Letrozole, Palbociclib, Zoladex and Denosumab injections. Just had 3 month scan and it has still spread within the bones. I'm 37 and my life has completely changed. I'm hoping they can try something else! My mum passed away from secondary breast cancer and my sister also went through treatment. It has helped reading some of your posts. The Lego comment made me smile! Being made of Lego would be so much easier!

  • FormerMember

    Hi Jo 

    welcome to the group! It is good to read isn’t it. My hair sometimes looks like Lego hair :-) 

    Thats a lot to cope with in your family, have you had genetic testing? 

    I hope that they can swap your meds and stop the march of the cancer. What have the team said? 

    I’m on similar meds but riboclib rather than palbociclib, first round so I don’t know for a few more weeks whether it is working. I’m feeling like I’m about to get a cold but it never appears, think it’s my bloods dropping .

    Nicky xxx

  • Hi Nicky,

    Thanks for your message. Genetic testing came back yesterday and it has shown no reason for our cancers. Nothing has been identified on the 8 genes they currently test for although it doesn't rule out that there could be other genes that have not been identified yet. I'm meeting with oncologist on Thursday to see what they suggest so fingers crossed I can try something else!

    Hopefully you feel better and your bloods are ok!

    Jo x

    Jo x
  • Hi Jo,

    I just wanted to say hello and welcome. I am on exactly the same treatment plan as you, had my 2nd cycle last Monday, the 6th.

    I am truly sorry to hear the cancer has spread further - you’ve obviously had an extremely rough and personal time with Secondary Breast Cancer and I sincerely hope that they can offer you other meds.

    There is so much knowledge and positivity in this Group and I am glad one of the posts made you smile Blush.

    Love and best wishes to you xxxxxxxxx

  • Hi

    Thank you. I hope your treatment plan goes well. Xx

    I know there are many drugs out there so fingers crossed we can put a halt on these charmers! I will know more tomorrow.

    The group is a great support as it's very difficult for family and friends to fully understand no matter how much they try.

    Jo x
  • Hi Jo,

    I sincerely wish you well and I really hope tomorrow’s appointment goes well for you. 


  • Hi,

    Just had my 3 month scan results and the cancer has halted on my meds which is great news so back on Palcociclib etc . Gp had told me it had spread further when in actual fact it hadn't- wee mix up with what scans they were comparing! Just sent me onto panic mode for two days until I met the oncologist! So I'll take the good news and hold on to it and await my next 3 month scan.

    Jo x
  • I am so pleased for you Jo. Sorry you had two days of panic but what brilliant news.

    Keep Thinking Positively. 

    DiAne xxx

  • Hi Jo,

    Really pleased to hear this! I’m delighted for you and you hold onto that good news Kissing heartKissing heart.


  • Thank you to you both. Back to being sleepy tired but was pleased to see the box of drugs again! 

    Jo x
  • Just thought I would say hello - I was diagnosed in April 2019 with Secondaries - first time time diagnosis following a routine mammogram at 50 - Happy Birthday to me.

    I was in tail spin for the first three months - I was started on Ribociclib, Letresole and Zodalex injections.  The Ribo did not agree with my bloods and it was halted after the first cycle. I was then only on Letresole for 7 weeks until my bloods came back to normal.  My ONC switched me to Pablo on the medium dose - after one cycle my bloods held so she put me on the highest dose 125mg.  I am now on my 7th cycle and thankfully my bloods are holding.

    Latest bone scan has had good results and I have just had a further 3 month PET scan (yesterday) and am waiting the results of that.

    I have good days mostly and some difficult days where I get fed up with the endless blood tests, appointments and scans and do get a bit tired and a bit achy. Other than that I feel no different.  I went to the Caribbean on holiday in November and I can say the winter sun was marvellous - not aching at all.

    I do get scanxiety it is perfectly normal and I am lucky that my friends, family and fantastic partner are very supportive.  There is also this group who actually really know how you feel and are wonderfully supportive.

    Please have a look at the thread  started some time ago - Positive Breast Cancer Stories it is posted in this room and take the good news stories away from that.

    I wish you all well with your treatment and long may it continue to work well for all of us