Hotspots on Spine and a rib

Violetrose

Hi Sandra

I don't have any experiences to share with you but it sounds like you need to sit down with your CNS to understand what your options are and why surgery isn't possible for you. I think you might continue to worry until you understand what is happening and why.

x

Hi Sandra

I'm sorry to see that you have hot spots in rib and spine.

I am newely diagnosed stage 4 and have extensive hot spots in a few of my bones. Including ribs and spine. The secondaries were found before primary in nipple under breast. No lumps etc. My ribs have pathological fractures which was diagnosed as condontoritis (inflammation of cartilage behind rib) for 4 months before they did scan. Back as muscular pain for nearly 12 months.

Whilst I was having tests to find primary I was informed that I needed a specialist  for them to do a biopsy but since they found primary they say that they do not need to do a biopsy.  No real reason as to why not which is frustrating. I don't even get a mastescomy as I have gone through Menapause. I'm 54.

As I am treatable not curable they just try to slow it down to stop it spreading elsewhere.  I am on Letrozole, palbociclib and monthly Denosumab injections. I will have a scan in 4 months to see if this is working. I suppose I am one of the lucky ones that have not had long to wait since diagnosis to treatment about 4 weeks. That few weeks was bad enough so I can understand your confusion/frustration.

Don't know if you have access to Macmillan or palliative nurse. I have a palliative nurse who is wonderful and she is always available to answer any questions I might have. She even arranged for appointments for my GP and practice nurse to get to know me as it is difficult to get appointments at my practice now can get appointments straight away. Which at the moment don't need. 

The oncologist when I saw him told me the bad news its in your bones, good news its just in your bones and no where else and your not going any where soon. People with bone mets are living longer due to new treatments coming out all the time. I have to hold on to this as a positive even though I now have a cough and am aching in new places which could be a side effect of drugs. My pains magically disappeared after diagnosis which is strange as have been in excruciating pain for months and could hardly move. 

Just Keep asking the Dr's and nurses for answer to your questions and hopefully you will get the answers. I am waiting to find out why a biopsy was not performed on my nipple 3 years ago when I presented at breast clinic with problems in nipple which has not changed since then and mamagrams not showing anything up. Hopefully will get answer in couple of weeks told them I need to know so I can move on. I know it won't change anything and I can't go back but it might stop me been so angry. I have no confidence in NHS and have told them this which shocked them but if I ruffle enough feathers it might change the procedures and outcome for someone else in my situation as my cancer does not always show up on mammagrams and ultra sounds so they tell me.

sorry to ramble on. Good look and hopefully they will start you on a treatment plan soon. 

Joanne