There wasn’t any mention of infection, only arthritic changes, and my blood results were very good. You too, best wishes, Kate x
I’ve just had my MRI results and while I’ve been NED for almost three years today I was told there is no sign of cancer in my cervical spine (where my mets are) and the scan is now only showing arthritic changes. I said about having been NED (it wasn’t my consultant as she’s away) but he just said again about arthritic changes. Obviously I’m delighted whatever he meant but wondered does anyone know is there any difference? Thanks
You are welcome to join this site. Sorry to hear your mum has cancer. I got my first cancer diagnosis in August 2013 too. When my mum had breast cancer I wish there had been a site like this: I would have joined it. We are a "mixed bunch" meaning we are quite diverse. We can rant, learn to understand different points of view, sometimes even laugh and it certainly helps me to cope a little better sometimes. The site has been a bit quiet recently but there are a lot of people on it. Hundreds of years of experience I guess!
Magick, I'm from the USA and I belong! Also we have had family members join before. How long has your mom had secondaries? Where did it come back at? Mine came back in my lungs 13 years ago. Welcome! FF
Sorry not to have replied earlier Riversidedawn - I thought I had already but obviously not .....which is another thing I'll put down to chemo brain..again ! I don't appear so far to have had any SE from the denosumab . The everolimus and exermestane are the tough ones for me. Even the BC nurse said they can be hard to tolerate but I was crying at the time so maybe she was just being kind to me !. After a scan 2 weeks ago they discovered pneuminitis in my lungs so have had a 2 week break to clear it up as caused by the treatment. Now I'm back on it at a reduced rate and so far so good....although worried that it will only be half as effective now!
Good wishes to everyone on this thread, Gill x
I've been diagnosed with bone mets last week, 5 years after primary. Getting anastrozole and zoledronic acid infusions, is anyone else on this?
I keep crying a lot as well, not sure if its shock or the anastrozole.
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 !
My bone mets were found accidentally after another unrelated procedure. You are so lucky you're getting scanned. I had gone to doctors severat times complaining of various pains but at no point did anyone suggest it might have anything to do with the breast cancer I had years ago. My pains are quite sharp - like being stabbed repeatedly rather than dull aches.
Some ladies have not known they have got bone mets, I was one of them. A routine mammogram showed a local recurrence then a subsequent bone scan picked up a couple of mets in my spine. I now have quite extensive bone mets but that was because I was doing so well a few years back that my regular scans got spread out too much so the changes weren't spotted as quickly as they should have been. On that occasion I did have a ache in my thigh which felt more muscular than anything but it turned out to be more bone mets. Some ladies have had a spontaneous fracture, others have reported having aches which were then checked with scans. It's not always obvious and unfortunately some GPs dismiss a lot of our concerns whereas they should take them seriously especially where there is a history of BC.
I hope your scans do give you the answers you need and that it isnt bone mets. However you have found the right place to come should you need further support.
You may get many different replies to your question, but they are slow coming in. I limped a bit but have limped a long time since an old injury. After the first primary it was assumed to be the tamoxifen. At the second primary I had a CT scan and bone mets were diagnosed then and apparently were from the first primary.
Your scan will hopefully be reassurring.
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.
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?
Mrstimps, Some drs are more aggressive than others. They also go by how you feel. My oncologist will go and look at the scans herself if she isn't sure. If you aren't comfortable with this maybe a second opinion would be good. FF
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
Following a meeting wth the surgeon yesterday, it now seems that she would definitely like to do surgery in the New Year! Am currently gettng herceptin injections which are working very well, but she doesn't want to leave me undefended should I need to stop the herceptin for any reason. Surgeon and oncologist seem to have different opinions
Wonderful news Linda. It makes the harsh SEs we have to put up with whilst on chemo all the more worth it doesn’t it? Thanks for sharing.
It is a lot to take in right now but we seem to learn and adjust along the way. In my own experience and after reading the experiences of many ladies on here over the years surgery is not given very often.
The reasoning behind this seems to be if you have a major operation, such as breast surgery, your immune system can be compromised which in turn can compromise your metastases. Most oncologists also like to have a reasonably time of stability, after initial treatment, to see how your particular BC, and SBC, reacts. If it is more aggressive they might not want to rock the boat so to speak. Their main aim is to prevent the mets spreading any further for as long as possible. By having chemo which will have been targeted to your type of BC it will have treated you systemically. Your original BC lump should have reacted to it as well. Also, from something that an oncologist said to me once, they can monitor the lump easier than bone mets etc which involve far more intrusive scans. My bone mets were found after a routine mammogram some 4-5 years after my primary. I had a local recurrence and was due a mastectomy but once the one mets were found it was straight into chemo nd then hormone treatments nd no surgery. I did ask over the years if I could have a biopsy or surgery and they said that on every CT scan I’d had there was no evidence of disease in the breast so it would have been pointless to have gone through surgery to have found nothing. By the way that was over 10 years ago and I’m still here! Over the years there’s been a lot of debate on this but there definitely doesn’t seem to be any pattern as to survival rates between those who didn’t have surgery for their primary (when they were diagnosed with secondaries at a similar time) to those that did, and very few (on the forum) have had the primary removed
Hope this helps or gives you some questions you may want to ask your oncologist.
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
ff, absolutely! no options should get thrown out of the window. Different things work for different people simply because everybody responds differently, if this wasn't the case a cure would have been found. it is a highly complicated and very individual disease, well done, stay strong,
love and hugs
Ramade, Thanks for that info on tamoxifen. I have never taken tamoxifen and talked to my oncologist about it. That as after ibrance and letrozole but before E & E. She told me since I had used a double agent that a single agent wouldn't work. That tamoxifen wasn't an option. I will be telling her no options get thrown out the window until I try them and they fail! My original oncologist threw all hormonals out til I pushed for them. He told me they would never work for me bc lupron injections did nothing as my first treatment. I've been on hormonal for 3 years now. If my oncologist won't try tamoxifen, I will go elsewhere.
I'm glad it's working for you. How long have you been doing metastatic BC now? I'm tired too. This year has been my worse for tiredness!
Take care, FF