Newly diagnosed

Hello everyone.

I had my primary 20 years ago with mastectomy and lat flap and chemo which was awful.  I couldn’t take Tamoxifen or Arimidex and was put on Megace for 12 years.  Long story short Megace kept undiagnosed migraines ay bay until I was seen by a neurologist who diagnosed the problem and changed my meds.  Since then I’ve been a new person healthwise. 

Now this whammy. I have a scan on Friday and then seeing the oncologist the following Friday.  I’m not in a good place right now - have known I have mets for just over a week and at first think for the first few days I was probably in shock and dealt with it well. 

Since then I’ve gone downhill physically and mentally.  I have been diagnosed with sciatica and a hiatus hernia in recent years so hoping against hope that the pain and stomach problems which I’m having right now are really because of those coupled with anxiety but inevitably thinking the worst as well.

Has anyone else felt like me?  I just need a bit of positivity - right now I’m thinking I feel so ill and sick I’m not going to be able to even get to the scan on Friday.  I’ve gone from a happy, mobile 68 year old to a feeble, sickly, quivering wreck in just over a week.  My husband, family, and GP friends have all been amazing and my GP has prescribed sleeping tablets and antibiotics because I also have a UTI. 

I think the positivity on this site is wonderful so hoping someone can help.  Wondering if anyone felt like me when they first found out.

Any help appreciated. Thank you. X

Hi, I was diagnosed with bone mets in February I am 64. Then of course you have to wait while they do further scans biopsies etc and during this period I also became quite unwell. My pain got worse and I had a lot of stomach and bowel symptoms. I convinced myself all sorts of horrible things were going on but after I had all my results and treatment plan the symptoms went away. It was all just physical symptoms of anxiety. Now I am feeling well and enjoying life. All my symptoms came back when I had my three month scan and although I tried to believe it was anxiety again they continued until I got my results. So just to say that a lot of your symptoms could be anxiety and I am sure you will begin to feel better when you have your treatment plan. In the meantime be kind to yourself try to do small things that might give you a little pleasure and rest lots… Take care Lyn

Hi, 

I too have recently been diagnosed with secondary bone mets in spine and hip, and a slight uptake in multiple myeloma in blood test. I am also in shock as my original breast cancer was 2019 when I had a mastectomy and sentinel node involved, so partial auxiliary node clearance. My oncologist score was 4 which was so low I didn’t need chemotherapy only radiotherapy.

So when I started having pain in spine (suffered with fibromyalgia for last 25 years but knew it was a different pain) my oncologist suggested a bone scan , then an mri due to hot spots on bone scan and then pet scan and blood tests. These shown bone mets .I will have a repeat pet scan after three to four cycles and a repeat of the blood test to see if treatment is working :crossed_fingers: :crossed_fingers: .

ihave now been on Abemaciclib 100 mg twice a day( lower starting dose due to mild cyclical neutropenia ) and fulvestrant injections for a month, and have just had the third loading dose of faslodex but my white blood count is down to 2.7 and neutrophils at 1.34 so I’m hoping that this neutrophil count will rise on the next bloods( 10 days time instead of mid cycle.) 

Has anyone else had this problem so early on in the treatment as my oncologist seems happy to continue with the dose that I am on, and I dread him reducing or even stopping the treatment. Does anyone know if it’s a temporary decline in the white blood count( everything else seems okay) and will this readjust when my body gets used to the drugs? 

I really need some reassurance that this treatment will work as I have a lovely husband, daughter and two beautiful grandchildren that I would love to watch grow up .

please anyone , some optimism would be much appreciated.

thank you xx