"Advanced prostate cancer ; feel medics complacent."
Partner diagnosed advanced PCa May 2013, Agressive tumour, spread to bone, lymph, soft tissue. On Stampede Trial. Hormone therapy arm. Withdrawn as needed radiotherapy to prostate. Radiotherapy staff great. Since diagnosis have never had any discussion of bone thinning due to disease and HT yet this is a serious and important issue. Partner needed kidney stents, communication between oncology and urology, Southmead poor. Feels as if no one is co-ordinating care so we have always had to do lots of chasing up. Partner broke arm Feb 2014. Saw oncologist. I Insisted partner be offered bone strengthening meds especially with his diagnosis. Asked for dexa scan also. No luck but agreed to bone and CT scan. Just as well as these have showed possible spread to liver and femur. Had to chase up results of scan. It all seems so impersonal. Partner did have RT to broken arm but should have a systemic approach, not wait for fractures to happen and been prescribed bone strengthening meds much earlier. Partner also has lymhoedema. Contacted hospital. Nurse took a week to reply and just told wait for scan. In meantime I found Macmillan lymphoedema service myself and had him referred. It is terrifying when it feels like incurable cancer is a do-it-yourself service on part of patient and carer, but that's how I feel. Partner's cancer likely to not respond long to HT but monitoring has revolved around PSA, not likely to be full picture for his disease, thank God we didn't wait for this to rise and pushed for the scans. Now waiting for discussion about treatment . I feel we will have to battle for everything and don't have much confidence in the service. Also, need adequate time to discuss with oncologist, especially if we want to query treatment options. If patient knows very little about their disease I consider they would be at a huge disadvantage. I just want to see a medic who is seriously up to date on advanced prostate cancer, if need be will chase up latest Trials and meds and who recognises the seriousness of my partner's diagnosis. Like many carers, this is a terifying thing to be going through. Also, need a proper considered treatment plan, options and contingency. Feels like approach is very piecemeal. Also, unless patient willing to educate themselves, they will not know about all the Trials, not just Stampede for Prostate Cancer, which again will limit options. Seriously concerned about general lack of info given to patients, would help even to direct patients to organisations like Prostate Cancer UK.