Long wait to start treatment

[OrangeGirl]

Hi my lovely,

Don't suppose you're under Shrewsbury are you?

It took 6 1/2 weeks for them to bother to see me...and that was after me threatening to throw myself off the cliffs at Whitby Abbey! It was a catalogue of incompetence with everyone thinking someone was doing something and no one was. Even the GP didn't bother to help initially.

I understand the head running wild bit and I felt like I was being eaten alive from the inside out.

They had 2 consultants on holiday at the same time for 3 weeks over the summer. It felt barbaric being left in limbo. I contacted pals who were lovely but impotent. My complaint has been escalated to the chief exec but that has a wait time of 2 months for a response...I didn't know if I would still be alive at that point! 

I've had to do so many phone calls, research, nagging to get my treatment on track as I had to have urgent spine stabilisation surgery first then no one seem to bother doing anything. I had to chase pathology results then found no one had bother to request them, oncology were refusing to see me until the results had come back but they hadn't even been requested! 

I was only dx with MBC at the beginning of July...no wonder my head is in a spin!

Started my first cycle of densoumab and abemaciclib today so mixed feelings, glad it's all underway but now scared as to what's yet to come...

Love to you and hope you're doing better xxx

[Jules1064]

Thanks jaybro

That's really reassuring. It's easy to imagine cancer having a merry old time whilst I am waiting for treatment/test results.

I'm sure you're right that the mdt wouldn't put me at risk unnecessarily.

It will be another long 3 weeks to wait but you are right, I need to be on the best treatment possible. 

[Jaybro]

Hi Julie

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

[Shi]

Jules1064 ❤️ You shouldn’t be having to run around chasing things and asking the questions but do keep on at them all of them ❤️ Do go to pals and if they don’t come back with answers you are satisfied with regarding you then it’s up to you if you take it further ❤️ The biopsy not being sent off delay is in my opinion not acceptable for starters, your meetings and feedback shouldn’t be delayed because your consultants on holiday, again in my opinion not acceptable but it’s entirely up to you how you proceed with calls and any chasing you do ❤️ You can be polite and firm ❤️💪 because you do need to know what’s happening regarding treatments moving forward instead of the current limbo you’ve unfortunately found yourself in ❤️ Please do try and speak to a nurse on here ❤️ They can professionally advise you what you can do and questions you should ask your team ❤️💕💕✨✨Shi xx

[Jules1064]

My consultant was going to get a different consultant to see me but she wouldn't be able to guarantee the results would be back earlier. I feel so frustrated that weeks are being wasted with no treatment plan.

I may contact pals but the biopsy is done at a different hospital trust so I doubt they will be able to speed things along.

[Shi]

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

[Jules1064]

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.

Julie