I was diagnosed with sbc in my liver in March 2022. I started ribociclib and letrozole but my scan at the end of June showed progression and wasn’t working. The oncologist was really surprised as she said people are often on this combo for years. Just my luck.
Saw my oncologist at the end of July who said they were going to test my biopsy taken in March for a gene mutation. If it had the mutation I could go on a brand new treatment. Went back to see the oncologist on 16th August but the biopsy results were back so can’t start any treatment.
Consultant rang me today to say the biopsy hadn’t been sent off till 9th August. I can’t see the consultant now till 13th September because she is on leave and it will be another 2 weeks after that before I can start any treatment. She said she would arrange for another ct scan to get a baseline as by then it will be 3 months since my last scan.
I am so worried that the cancer is continuing to grow and spread whilst I’m not having any treatment. The oncologist doesn’t seem to be worried or share my urgency.
Has anyone else had such a long wait for treatment. I am so worried.
Jules1064 Can you speak to your team there must be another consultant at your trust that you can be seen by instead of continued delays, you need to get some kind of treatments plan in place so you can try different combination also do take it to pals office that your biopsy want sent off till 9th august, that’s not acceptable. Also do try speaking to nurse on here they will have professional guidance for you too Sending big Shi xx
I remember that feeling. It took ages after I was given my diagnosis to actually starting treatment and I have triple negative bc which is very aggressive. The fact is, they need to get things right and these tests eliminate you or indicate treatment X, Y or Z is right for you. My biopsy has travelled as far as the USA - that took 3 months but I was already on my first treatment. In fact, my poor biopsy has failed every test! That has meant I wouldn’t benefit from various trials or drugs. Urgent action would have meant an inappropriate and pointless treatment and also eliminated me from the key drug I will have next as there are strict protocols about the order in which you can use different drug combinations.
It IS worrying but your MDT wouldn’t put your safety at risk. It took me 13 months to get my secondary diagnosis thanks to covid and a callous GP (I self-referred via the BCNs in the end) and I envisaged those vicious little cells running rampant and unchecked but my oncologist assured me that the delay made no difference - if the treatment works, it will deal with everything. That kind of reassured me and every CT scan since has proved him right. Suspicious areas in the first have never been noted again. It’s easy to say try not to worry but it’s too late for you - the worry has set in. I would ask a BCN about it and if they don’t have the answer, request (or push for) a phone consultation with an oncologist so someone can explain things to you and allay those worries. Meantime, be kind to yourself xx
