New here

  • 2 replies
  • 14 subscribers
  • 189 views

Hello all.

I just wanted to join the group as i am 3 months on from diagnosis I am still struggling with new reality.

I had grade 2 breast cancer 11 years ago. Chemo, mastectomy, nothing in lymph nodes and then 10 yrs on letrasol. I was so certain I was all clear!

I turned 60, and came off letrasol as instructed (v happy to do so, sick of hot flushes) and within 3 months odd aches and pains started, mostly in my back. Finally an MRI (in July. 7 months after stopping letrasol) and the PET/CT scan showed multiple lesions, spine. Ribs, hips, etc. 

Since early oct I have been treated, denosumab, palbociclib, and new trial drug. Plus what seems like lots of morphine to try and control the pain.

It seems like a long and bumpy road ahead, all the uncertainty of how long things will work for, where it might "appear" next, how to cope with ever changing symptoms. I have a wonderful family, husband, son, siblings and v elderly (but still active at 90) mum. I struggle with crying, with explaining my feelings, not being too negative or unrealistic positive. 

I guess its just good to hear other peoples stories, to take advice, so, here I am !!

  • Hi Lysbeth, I completely understand how you are feeling, I turned 60 in February and started with excruciating lower back pain and then upper back pain , I was sent for an MRI scan and found out I had mets in my spine, my original cancer was from my breast and I had no idea I had either it was a terrible shock.  I am now on Abemaciclib, Letrozole and a bone strengthening injection once a month.  I had one session of radiotherapy on one of the lesions in my spine because they were worried how close to my spinal cord it was and since then my pain has pretty much gone with the help of paracetamol and one codeine twice daily to the point I wouldn’t know I have cancer. I have read some really positive stories of people with mets to bones etc and it keeps me going, I am also on the breast cancer now forum which is really good.I had my 3 monthly scan yesterday and am worried it may have spread but I think we all go through the uncertainty.

    stay strong you can do this and it sounds like you have lots of support, sending love and hugs

  • Hi. My secondary bone cancer, caused by my original bowel cancer, is also in the spine, specifically my neck vertebrae, This causes pain in my left shoulder and arm. I have had one course of palliative radiotherapy, which significantly reduce the pain so I now get by on paracetamol, Naproxen and Orimorph. I also receive six weekly Densumab injections to help maintain bone density. I also have an unrelated spinal cord compression lower down my spine.

    I am not pain free but live life as fully as I am able in the knowledge that there will come a time when the cancer will disable me. I have accepted where this journey ends and with that have found a peculiar empowerment, which allows me to take a detached view of my situation, removing some of the emotion that arises when discussing it with family and friends.

    The best medicine is positivity, although I will admit that gets harder to maintain as things progress.

    All the best.

    Maninbath