Patient initiated follow up after treatment ends

Hi

I did have  a different diagnosis from you, I was triple positive! But I am now on patient managed programme and will have yearly mammograms. I too found my lump but it was confirmed by mammogram, US and biopsies. I can’t really say if you are being over cautious but you know your own body, so trust your own judgement. I also gained weight through treatment, especially steroids! I did slimming world and it has worked for me, I have lost 21/2 stone . I am on letrozole, zometa infusions and nearly finished my Herceptin jabs as I was HER2 positive.

Just tell them your concerns and don’t sign up to anything if you don’t believe it’s right for you. 

Hi, I don’t think you are being over cautious. There was some recent research about mammograms not being effective for dense breast tissue and that an annual MRI or contrast mammogram is more appropriate. 
I was diagnosed last october and had multi focal idc, low grade (3 tumors, largest 2cm) and 7cm high grade dcis. I had a routine mammogram just 15 months earlier and questioned why that hadn’t picked anything up. I talked to my bcn in the end who then advocated for me at a meeting and I have had my monitoring switched to annual mammogram with MRI (whilst still have dense breast tissue). 
Can you explain your concerns to the team? Ask if there is further monitoring given your cancer wasn’t seen on mammogram? 
I hope your appointment goes well.

link for research:

news.cancerresearchuk.org/.../

I asked about contrast mammograms and have been told that they are not available in my county on the NHS. They mentioned that MRIs might be an option at first, but seem to have walked back on that and said the mammograms would be best, as they pick up "all kinds of things". 

My Breast unit also operates PIFU system. Up to now, it has worked fine. A couple of times I’ve had concerns, rung the unit and they’ve phoned me back that same day, with an appointment within days. I do agree though that there is a possibility that changes might be missed, either because we don’t know what to report or we simply don’t notice any changes. My routine mammogram was reported as “ normal “ just 11 months before I found my lump. I’m intending asking at my next test whether I can have a more detailed report. 
A different experience at a different hospital for my Rh arthritis. PIFU may as well not exist. A recent concern of mine went unresponded to for 7 weeks. Even then, they promised to contact me again later that week & I’m still waiting 3 weeks later. Even worse, if a patient doesn’t initiate an appointment they are removed from the system after 18 months. So, I will ask for an appointment even if I don’t need one, otherwise, I’d have to be re referred by my gp. 

• That is very frustrating. 
  I don’t think mammograms and MRIs pick up the same things. However, I guess that  review of mammograms is extra thorough when you are in the system. 
  If it is making you anxious, maybe you can talk to your GP for some advice?