recent diagnosis of ILC and MRI shoed mottle bone

Hello Forum,

I am a recently diagnosed patient with ILC.  I do not yet know my stage, but my MRI showed a large area of ILC (6.8 cm) and multiple other small site all in the right breast.  ILC is commonly multi-focal, multi-centric, so that was not too scary.  They saw no lymph node activity on MRI - Also good.  I am ER+, PR+ and HER2 -.  So far all seemed ok other than the large size of the main tumor. But the radiologist said they saw some mottling of my sternum and ribs, and they did not know what it was, which has me extremely concerned.  I’m 51 work full time, and was hoping to have a long retirement with my family.  This mention of mottled bone and no one knowing if it is anything to worry about has increased by blood pressure and anxiety tremendously.  Has anyone else ever experienced this type of scan?  It will be days before I can get a PET scan, so I have to live with this fear for a while. 

Fearfully,

Jennifer

Hi Jennifer,

My name is Tara, I am 37 and was diagnosed with triple negative lobular cancer in March last year. I had a 19mm tumour removed in April, chemo from June until the end of September and radiotherapy until mid November. 
 
 You have mentioned bone mottling and wanted to know if anyone has experience of this. Well I am not sure if this is the same but after my op and before my chemo ( had to have it this way around because the first lockdown had just happened) I started to get aches and pain in my thighs and in my ribs under my right breast. This was my affected one. Although my tumour was small and had not gone to my nodes it was aggressive grade 3, so I was sent for a bone and ct scan to check for spread. When the oncologist rang with results he said they were clear but they had noticed a shadow area under my right breast above my ribs. As you can imagine I panicked the cancer had spread. I was told that the area had been discussed at the Multiple Disciplinary Team meeting where lots of doctors, consultants, radiographers meet to discuss your cancer, findings from tests and treatment plan and everyone had agreed that it was scar tissue from surgery. Now I was also told not to worry because if it should happen to be cancer then the chemo and radiation treatment would kill it anyway. Last month I was told I am cancer free at this time, however since finishing chemo I have found that I have cysts on my liver which is situated under my right rib. So maybe this was the shadowing that was seen on the scan?

 I am not sure whether you are going to be having chemo, radiation or any other treatment, but wanted to reassure you that your team will do everything they can to cure you of the cancer. Try not to worry too much ( I know it is easy for me to say) as it may not be cancer in your bones. It may just be how things are looking in the scan as in a harmless cyst or fatty tissue.

 It sounds like you are in limbo as things seem a little unclear so I would suggest you could ring your bcn at the hospital and ask them to explain things more clearly, what it means and how will you be treated. The nurses on this site are very good too and will be able to explain things more clearly to you. I find it good to make bullet point notes of things I want to ask so that I don’t forget. You can tick them off then and write a comment of what intends to be done next to each point.

 I hope I have helped to reassure you even just a little bit. Remember treatments are very good now days and more and more to cure cancer is being discovered. You may not know it but you do have the strength to get through this and WILL enjoy your retirement and spend lots more time with your family.

 Sending hugs  

Tara xx