Hi all, this is my first post so this is all new to me. Haven’t read through all the posts and am a bit worried about sounding stupid! I was diagnosed in February and early on my oncologist had suspicions of a boney met in my sternum. All along surgery had been discussed following initial chemotherapy. However following chemotherapy there seems to be a turnaround where my onc. and the surgeon are both now thinking no surgery. Scans don’t show any other secondaries bar the localised bone met. Any one else been in a similar situation and are wondering if it is best to get rid of the primary in the breast? Tks x
Hi LeighL
I’m sorry you are having to join us. You’re not stupid, there’s such a lot to take in and you continue on a steep learning curve.
I don’t have any experience of the question you are asking but if no-one else can help you I would talk to the BBC nurses who should be able to
Hugs Bon x
Thanks Nicky. That’s very useful and also reassuring. From a 6cm tumour it has shrunk to where it’s barely detectable so the chemo and subsequent herceptin seem to be working extremely well. Have to speak to the surgeon today who will likely give me the same answer. Its been great to read so many positive posts on here!
Hi everyone
Just thought I would post on the bone mets to let you know all know. Hospital rang yesterday regarding CT scan results. Liver tumour disappeared and bone is showing improvements. I am currently on weekly taxol. I have had 9 I down to havec12 in total.
I have not put much on here for a while with me being liver and bone mets now. Liver since last October.
Hope everyone is doing OK.
Linda
Great news Linda.??
Brilliant news Linda, so pleased for you.
Bon x
Yeyy fantastic news Linda!
Hugs Janette xx
Hi Linda so pleased for you that is great news. last time we talked we had both started on e/e,didn’t work for me but glad you had a fair time with it. i imagine taxol is chemo, i recognise the name as a heavy 6 month dose years ago after my primary.Hope things keep going in the right direction for you.
love and hugs
Ramade x
Hi Ladies,
Myself and my mom read the forum alot, shes not confident on posting so i said i would for her. She has mets in her lungs and bones, been on letrozole for the last 2.5 years and her latest scan has shown some progression. What we cant get out heads round is her consultant isnt changing her treatment yet and scanning her again in 3 months. Has anyone else experienced this? We aren’t sure wether to push for another opinion or trust that the docs know what they are doing, any advice appreciated x
Mrs timps, sorry you’ve had to join us but you will find this forum amazing. i can only tell you that when my scans are looked at and there is any progression at all my treatment is changed. Do you have a sympathetic gp or a breast nurse you can talk to?
big hugs
Ramade
Hello everyone
I was diagnosed with bone mets almost 6 years ago just 7 weeks after my primary diagnosis. Also had shadows in my peritoneum . I went onto Letrozole and Zometa which kept me stable for about 5 years then my TMs started to increase - scans showed more obvious infiltration in the peritoneum but my last scan also showed some differences in my lower back and the Onc told me that he suspected infiltration in my bone marrow.
I was put on cape and have just started my third cycle and my blood results have been very encouraging. I didn’t ask much about the bone marrow suspicions and am wondering if anyone here has any experience of this…or can point me to a site that has some information.
I am finding that I have lower back pain and am wondering if that is the cause. Have an appt with my GP next week to ask about pain killers.
xx
Hi everyone
Just thought I would join in regarding the discussion about treatments. The oncologist at the hospital I attend try to get the most out of each treatment so it is more a wait and see approach. Yes there are quite treatments for us but we might run out of options. That is what I was told anyway.
Linda
Hi Flora,
I didn’t know I had bone mets when I had a CT scan investigating gut problems. There was no prob there but mets in my pelvis were picked up. A breast care surgeon had previously told me I was ‘cured’.
It’s good that your onc is sending you for a scan so promptly. Not knowing is the worst of all. I hope your results show no problems.
Hugs Bon x
Hi Flora
I was diagnosed with primary in September 2014, 7cm and 2cm tumours with 26 lymph nodes affected.
When I was in hospital in September 2017 for diep reconstruction I had a CT scan because of breathing difficulties, lungs were clear but when my oncologist reviewed the scans 2 months later he spotted bone mets. Why he wasn’t shown the scan in September I don’t know! The bone mets had probably been there a while.
Hope your scan results are good news x
Thank you all, for your replies. And I’m so sorry you have these bone mets. 
I had my scan today, and have calmed down since I saw my consultant last week. I’ll forget it now, until next Monday when I get the results. My surgeon is really lovely, and said that when someone who doesn’t usually complain mentions something, they act. I didn’t go to my GP - I went straight to the BC Nurses at the hospital.
Keeping everything crossed xxx
Hallo Ladies
My bone mets (and lung) were discovered in August this year after I broke a rib back in Dec and it wouldn’t heal. Eventually a nuclear scan showed up the secondaries ! I had BC in 2002 and in the other breast in 2014 and am now devestated that this has now happened. My treatment for the last 3 months has been Denos umab injections, Exemestane and Everolimus which I’ve found nearly as tough as the chemo back in May 2014. I had a ct with contrast scan today and see the consultant next Tues for a comparison to see if the treatment is doing anything positive. I found the BCC forums really supportive before and although I never wanted to be back here it’s a relief to read your threads and understand I’m not alone !
Cheers, Gill
Welcome Gill
Sorry you find yourself back here. I don’t post often but read regularly and fine these ladies hugely supportive and open with their experiences.
I saw oncologist for scan results yesterday, pelvic tumours remain stable but there is activity in my T12 vertebra tumour. He said it’s minor activity and only picked up because the scan I had is very powerful and would not have been picked up on other scans.
I’ve been on letrozole, ibrance, zometa and triptorelin since January. Oncologist says this could be an indication that the drugs are stopping working.
He’s going to switch zometa to denosumab and apply for the cyberknife trial - there’s a 50% chance that I get cyberknife instead of regular radiotherapy.
It’s worry that the drugs are less effective already as trials indicated they could protect me for up to 2 years.
Gill which of your cocktail dp you put down to SEs as bad as chemo? I’m permanently fatigued and gave found my arthritis pain had worsened on my current regime. What’s denosumab going to do to me?
Dies anyone else have experience of my new regime??
I was diagnosed all at once in March. I cried for ages. I’m on Anastrozole and Ibrance. I’ve had two PET scans and both show good results. I’m working full time and apart from low white cell count haven’t yet experienced any side effects. It’s not always easy but for me it’s doable so far! Hope this is encouraging and sorry you are feeling the way you do. I remember it well x
Yes. I felt like that. Gradually you will get used to the treatment plan. I’ve been at this since March and now don’t think about it all the time. I hope you feel better soon x
Lovely good evening ,
May i join your forum although i am from czech republik and not me, but my mother is cancer fighter since august 2013?