Hi there. I was diagnosed with BC in May of this year. At the time a very early catch following regular mammogram and was talked through surgery (lumpectomy and sentinel node biopsy), radiotherapy and hormone therapy route. Surgery was delayed by crisis event of having a subarachnoid haemorrhage two weeks before hand. Although this was an emergency, I have recovered very well. I finally had my surgery three weeks ago and see the oncologist next week for the first time. Pathology is complicated as is potentially my next treatment options. Does anyone else have a complicated medical story like this - someone with a brain or subarachnoid haemorrhage or a stroke maybe? I’d be very keen to hear about your post surgical treatment options.
I’m so glad to hear that you have recovered well following your brain injury and managed to get your surgery completed successfully.
I had my surgery in 2022 and was initially prescribed Tamoxifen by my Surgeon - but there is up to 1 in 10 chance of eye problems with Tamoxifen and I had a retinal vein occlusion and haemorrhage in 2019 which has resulted in permanent damage to my eyesight . No clots were seen on CT scan though it is often caused by a clot .
I live a normal life following 7 months of adjustment and a course of injections into the affected eye . I’m not on an anti coagulant at present but on medication for high blood pressure and CPAP for sleep apnea which I wasn’t aware that I had as I didn’t have the symptoms that most people who have it normally suffer from. When I went to see the Oncologist we were supposed to be discussing radiotherapy but when she asked about Tamoxifen I explained that I was afraid to take it and why and she said that a central retinal vein occlusion is classed as a thrombotic event and she altered my prescription to Anastrozole. My cancer was a particularly low risk and grade so after developing a lot of side effects I made the decision ( just for me , my overall health and circumstances and Predict score ) to stop hormone therapy.
When hormone therapy is discussed they don’t always think about your history so you make sure you tell them everything - write it all down beforehand so you don’t miss anything. if you’re not sure of your menopausal status go to your GP surgery and get them to test you as this may affect what you need and can be prescribed . They should do a Predict score with you to help work out the benefit of having both radio and hormone therapies . V3 of Predict has just come out but most clinicians are still working with V2. I’m not sure how radiotherapy plays into your history but the Radiology team will be the best people to answer that or you could post in the ask the Nurses section as they will know more .
Best of luck xx
Thank you for the extra information. Everything helps ahead of meeting the oncologist. I’m so sorry about your health too. You are very brave. I haven’t actually heard of Predict but I am a candidate for the oncotype dx test and I will get that done. Certainly they are considering chemo or they wouldn’t want it done but I want my recurrence score. Been on letrozole since SAH as everything got pushed back. Didn’t get a choice in that as it turned up one day in my meds while I was in the neuro unit. But coped with it so far and not keen on a move to anything else now. Also got lots of blood pressure meds as hypertension was probable cause of SAH and all that will need managing alongside treatment plan as I go forward. X
I’m glad you get along with Letrozole and that’s a better choice than Tamoxifen with your history and I doubt that they would try to change it . I was going to say that you are very brave - not so sure that I have been. I hope your appointment goes well xx