Hi
I don't know how long the risk of endometrial cancer has been associated with Tamoxifen. As I recall, CLKD you underwent treatment some years ago so perhaps the relevant studies had not reached their conclusions then and hence this risk has perhaps been stressed more by consultants and appeared in the P.I.L. since then?
Because it was a 'just incase' type of drug I didn't see the point in continuing something that might make me ill for the rest of my Life: nor can I understand the '5 year' protocol.
Some years ago it was protocol to prescribe Tamoxifen to ER+ breast cancer patients for the rest of their lives, sometimes this was for a great many years. My oncology team have explained that this is no longer the case as current thinking points to no additional benefit to taking it for more than 5 years (for primary breast cancer).
In the nearly 6 years since I was diagnosed with breast cancer the protocols for number of years to prescribe different types of endocrine therapy have changed as different studies have concluded; at the moment the recommendation is for 10 years total endocrine treatment and this is usually a combination of Tamoxifen and an Aromatase Inhibitor. This stresses to me the importance of having one's own medication protocols reviewed properly by a specialist team on a regular basis. This does not happen automatically. As patients we need to take responsibility for ensuring this happens.
As regards follow-up for breast cancer patients. In my experience this varies widely between different NHS trusts and with different cases. Like you, CKLD, I was seen frequently, then 3 monthly and then 6 monthly. Going forward I am to be seen by the consultant on an annual basis with yearly mammograms ad infinitum, I can self-refer via the hospital team should I feel the need at any time. It very much depends on individual risk factors and pathology of the original cancer.
CLKD: I hope that as you are unable to go to the forthcoming funeral you are, in time, able to grieve and gain some sense of closure in whatever way you can.