5 yrly review and referral to an endocrinologist!

Hi all
Just had my 5 yrly review today, brought forward by 2 months because of concerns with the tumour breast. I could not believe that my Oncologist retired last April, my bc nurse in December, and the Director of the breast care clinic, who dx me, also retired last year. Thank goodness my bc surgeon is still working.

I had a mammo of both breasts, ultrasound of the suspect area on the tumour breast and all was thankfully fine. Both my bc surgeon and the Consultant Radiologist said the changes are due to radiotherapy - some 4 yrs ago. I questioned why these changes didn’t occur after rads and my surgeon said they can occur up to 40 yrs after rads - I responded “I should live so long”. I do wonder why no-one told me these changes could happen and I could have been spared the anxiety. Last year when I was seen by my bc surgeon he told me it was lymphoedema in the breast. Does make me wonder what I have.

The thing that really surprised me today was when he said he wanted to refer me to a Professor Wilkin because of my bone problems evidenced by recent DEXA bone density scan. Duh? I asked if he was a rheumatologist, and he said no, he is an endocrinologist with a specific interest in bone loss through Arimidex. In my case the problem of bone loss is compounded by 30yr of steroids through Crohn’s. Well, I am willing to see anyone who can help me. I have had 2 fractures in both feet recently, - quite spontaneous, and I am of course worried about a hip fracture.
I just wonder if anyone without secondaries has the problems of bone loss that I have, and what their doctors have prescribed. I live in Cornwall, so don’t have access to great cancer hospitals like the Royal Marsden or Christies, but feel my doctors are doing the best they can.

I have been taking the bisphosphonate Alendronic Acid and Calcichew/Vit.D for about a year and this has helped with the hip pain, but obviously not the bone loss. I did some research on the internet and found Zoledronic Acid has a 30% better prognosis for bone factures, but this is an annual infusion in hospital. My bc surgeon said he doesn’t know much about this, but does know it has been used at my hospital in Plymouth, and this is why he is referring me to an endocrinologist.

Anyone had similar experience? Would love to hear from anyone who can help me put this current problem in perspective.

I am waiting for the results of a recent MRI on my abdomen (Crohn’s related)- had an endoscopy of the small intestine, showed one stricture so my gastro ordered an MRI. He rang me last week to say I now have two but needs to see the radiologist’s report before we meet with a gastro surgeon for possible resection. Gosh, these medical problems never seem to end. I am very relieved tonight to know my bc has not recurred and will now get on with the other problems. shall have a blessed night’s sleep with no nightmares thankfully.

Goodness Liz, you have had a tough time of it, afraid i can’t help you much, but all the best with the other results