I was diagnosed with stage 3 Hodgkin’s lymphoma 12 months ago today. I went through 6 cycles of ABVD chemotherapy. My last treatment was in December. Due to the chemotherapy it has caused the bones in my spine to fracture. I had surgery several weeks ago to have cement injected into these bones to try and stabilise them. 

I am on strong painkillers to help me maintain a near normal life as possible. 

I have been trying to find out what exactly has caused my bones to fracture. I have had a couple of appointments with a rheumatologist (by phone) and she said that I have osteoporosis and wants to start a course of medication which involves daily injections. 

I was 60 this year and I would like to class myself as being reasonably fit for my age. I don’t smoke and I am not a heavy drinker. 
My question is about heamotology. 

I was told in January that I currently have no current evidence of disease after my treatment and that I will have follow up checks for the next 5 years. This was explained to me and my wife as being every 3 months for first year. Followed by 4 monthly the second year and then every 6 months for the last 3 years. I felt that this was very reassuring. 

Once my treatment ended I have not had any contact with anyone concerning my follow up. I have chased haemotology to see when my follow up will be because I want to check that there is no further damage caused after my treatment and the symptoms that I had 12 months ago appear to be returning. 

Today I recieved a letter stating from a consultant haematologist stating that because my PET scan in January was all clear and that I had completed my chemotherapy and confirmed to be in complete remission I do not need to be seen more than once a year. This is in complete contradiction to what I was previously told. This letter has come from a consultant who is new to the hospital and I have never met. 

Is it right that after being told that their are currently no signs of decease that I will not be seen again for 12 months? Particularly as the cancer I had is one the ones most likely to return. 

I feel down that once my treatment ended no department wants to take ownership to confirm what my next course of action should be. 

I would like to hear from others if they have had a similar experience. If I am wrong in assuming that I should get 3 monthly follow ups then it will be okay but I am only repeating what I was told. 

thanks for all your support.