I was called to my GP 10 weeks ago to be told the results of a CT scan of the liver showed extensive malignant liver metastases. I had a previous lumpectomy 11 years ago. There was no node involvement and I had course of radiotherapy so was totally shocked when they said it could be a breast secondary. I saw a consultant who arranged a PET scan and liver biopsy. I eventually managed to speak to a nurse on the phone 2 weeks ago who told me that the biopsy did show breast secondaries and that it was inoperable.
I have had a couple of episodes of severe shoulder pain and I am in constant pain in my neck and head. I know the shoulder pain is referred pain from the liver but I don’t understand what the head pain is. The bone scan was clear.
My main worry is I’m not getting any support at all. I was told I was discussed at the liver MDT meeting 2 weeks ago and then at the breast MDT meeting last week and I am waiting for an oncology appointment but I am having to keep chasing. No one has been in touch. Its been so hard to have been given this diagnosis 10 weeks ago and I still don’t know if they are intending to give me treatment. Sorry for the rant but is anyone else having to wait so long to find out about treatment. I am trying so hard to be positive but it is difficult when I don’t know what I am facing.
Hi just wanted to reach out, Im sorry you have a secondry diagnosis it seems a lifetime waiting for appoinments etc its a scary time for us in the meantime I hope you are getting plenty of support have you a Maggies centre as they have excellant support groups and counselling
i was diagnosed the end of Jan this year have not had any treatments yet but under very close watching will be starting in the near future I have found being able to attend Maggies has helped me massively we are all different as treatments are different so try not to worry too much, once you have an oncology app things will be clearer
how hard for you .i am in similar position but my liver mets have come very quickly after bc diagnosis ,mastectomy,chemo and radio and letrozole tablets
diagnosed bc ,2017 Nov ,
liver mets found April 2019
because I was in the system ,being checked regularly ,my treatment progressed quickly ,my liver mets are inoperable too
you must be proactive and push for your appointment,once you have your onc appointment and a plan you ŵill feel better
positive thoughts
xxxx
janet
my bc is oestrogen positive ,I am post menapausal ,I am having abemaciclib and fulvestrant as second line treatment,
I to have been experiencing that the people you rely on at this awful time,don’t seem to get,that we are at our wits end trying to come to terms with this diagnosis,and they are supposed to be our life line,for treatment.They say that they have a treatment plan or they will have a treatment plan for us,then no correspondence unless you do the work.I am on my second cycle of Palbociclib and I am the one making phone calls to see when next appointments are due,for bone strengthener,etc we have enough to worry about,trying not to stress ourselves out,I wish some would go for medical training so as they maybe would understand,just a little,why we become anxious when our treatment does not begin.
I can say this you are not along at being anxious,or dissatisfied with medical staff.I was at a breastcare meeting and a few of the ladies are in the same situation,I think something really needs to be highlighted,at the lack of awareness of Secondary Breast Cancer.
much empathy for what you are going through. Does your GP know that you have not even been given a date or name of Oncologist for your appointment yet? What kind of Consultant did you see who arranged for your PET scan and liver biopsy?
Think if I was in your situation, I would get in touch with your GP and explain. They could, perhaps, ring the Consultant directly?
Was the nurse you spoke to a Breast Care Nurse? I would ring again and explain how concerned you are about starting treatment ASAP. Ask if she is able to contact the Consultant or his secretary for you. You are right to keep chasing! Thinking of you. P