Meeting with the oncologist

Dear All I was diagnosed a month ago and had a CT scan a bone scan and two MRIs one of the breast and one of the spine. The bone scan showed an area of concern on my spine. I saw the breast surgeon last week and she said that the PET scan showed three areas two spine one pelvis but she wasn’t sure what they were and she would need to compare with the MRI which although she has she didn’t have the report. I’m having six months of chemo and seeing her again in October. I spoke to the breast nurse on Thursday who had the MRI report but refused to give an my results saying she couldn’t give results over the ‘phone (although she has told me about the bone scan which showed an area of concern and that the lungs and liver were clear). She said she’d get the consultant to ‘phone me but she didn’t. Does anyone know what an MRI would show which a PET scan wouldn’t? I am assuming that she would have given the results if it was good news? Has that been other people’s experience? Also please could you let me know if there’s any questions I should ask tomorrow? Sorry for the anxious post. It’s been a month since diagnosis and I still have no clear information and no plan! Hope all of you are doing well and thank you for the support you’ve given in these early difficult days. I hope I’ll be able to do the same for others one day

Hi Anne

We all understand your anxiety it’s almost the worst part of all this - the waiting for a complete picture of what the treatment plan is and what the mets are etc. In my experience you would normally only be given results by an oncologist rather than a nurse, especially at an initial diagnosis. Afterwards a nurse may let you know interim results but only usually of blood test results rather  than scan results. Also, as you’ve said, an oncologist only gets the full picture when the scan is reported on by the radiographer (which is often the reason why it takes so long to get to know your results as not all hospitals have enough radiographer to do the report immediately).

As to what to ask tomorrow I would ask what type of secondary breast cancer you have ie is it hormone positive and/or HER2 positive. This will determine the type of chemo you will have and also the ongoing treatment once your chemo is finished. Different chemos have different side effects (SEs for short) so don’t read into all SEs until you know the type of chemo you will have. I found that looking on the main (primary rather than secondary) part of the forum under the chemotherapy section of treatments that you get a huge amount of info as there are more ladies having chemo than in the secondary section. Most first line chemos for secondaries will be the same as primary, it’s only when you have had more than one chemo that different ones for secondaries are used. Obviously ask us (best to start off with a post in the main ‘Bone mets’ thread as more of us might read it rather than a specific chemo question) about your treatment, one of us at least is bound to have had it at some time. You can then check out any threads in the secondary section about your actual treatment plan and see if there’s any advice on there.

Although it seems an age since diagnosis to actually starting treatment this does seem to happen. My bone mets were  diagnosed after a routine follow up mammogram after having primary BC. From the date of the mammogram, where in hindsight I could tell the radiographer knew there was an area of concern is a recurrence, to me starting chemo it was 3 months! A very anxious time for me and my family but it’s better to know the whole picture than just some of it, that way you will get the right treatment.

Good luck for tomorrow 

Nicky x

Thank you for replying. I’m struggling to keep calm. I’m going to do some meditation with my friend and am thinking of going to a Quaker meeting next week. It really changes you all this. I’m so glad to have found this forum of knowledgeable people.