Secondaries in bones, waiting for appointment with oncologist mid July

Hi all, five weeks ago I went to my gp with pain in my ribs and was immediately referred to breast surgeon as I had primary breast cancer 12 years ago. The service so far has been excellent I had my bone scan and initial diagnosis really quickly. I have CT booked for 23rd and feedback from that 27th. Now I just had my appointment through for the oncologist and it’s not until 13th July. Is this normal? I am really anxious to have to wait seven weeks before we even begin to start talking about treatment.
Would also like to mention I was very wary about going on line but I have found this forum so helpful and feel the support out there so thank you all 

  • Hello and welcome.  I can't really say if the wait is normal as my bone mets were found on the scans when my primary breast cancer was diagnosed and as my first treatment for the BC was chemo they started me on bone therapy at the same time.  What I would say is, if you are bold enough, is to ask for an MRI.  I found that whilst the bone scan identified there were mets on my spine, it was the MRI which showed the full extent and the only reason I had an MRI was because I was having tingling in one of my legs.  If you are already in pain, it's possible you might be referred for radiotherapy.  Best wishes, Wendy

  • Hi Lyn, 

    Sorry about you diagnosis, I am not sure why there's such a long wait time to see the oncologist as I thought the guidelines are that you should get an appointment within two weeks. My original letter was for three weeks but was moved forward by one week when another patient cancelled.

    I don't think anyone should be made to wait for so long, I completely understand your frustration as I found the waiting period the most stressful time to deal with. For me it was the waiting time while my care was transferred from gynecology ( I have bone and liver metastases but no primary cancer as had risk reducing masectomies in 2018) to the breast team. My gyneao oncologist had to chase them and eventually a specialist SBC nurse called me to give me an appointment and explained they were working on my treatment plan, which I started  on the day after my appointment, on Christmas Eve.

    If you did not get the contact info for a specialist nurse with your appointment letter I would call the hospital and ask them to provide those details  asap. The specialist nurses are quick to answer any queries and can also support you through treatment once started.

    Good luck. 

  • Thank you both for replying. I have since had a call from my specialist nurse and she was great. Already brought my CT scan forward so I’ve had that. Nothing to do now until the results come through and they decide where to take the biopsy from. When I have that date she will know when my results will be in and work to bring forward the onc appointment as appropriate. The waiting is agonising though as  you will all understand. 

  • I’m glad you’ve heard from nurse, mine are brilliant and help with appointment and scan queries. I do hope you don’t wait to long and that you see onc asap.

    Let us know how you get on.

    (I had DCIS 2004 then spread in 2007, bone scan showed I had metastasis on T9, had chemo etc. Tamoxifen for 12yrs now on Anastrozole and just had first Zoledronic Acid, every 6 weeks for me. CT now 6 months.)

    J

  • Hi all and thanks for your messages. I had my CT scan results today and was pleased to hear that they couldn’t see any further secondaries although there is a very small change on one lung so will redo scan in 3 months. Now waiting for biopsy date but I will call my breast nurse on Monday to see if she can hurry things up. I am very keen to get started on treatment asap to try to avoid further spread at this time. Wishing you all a peaceful weekend.