Hi, I was diagnosed with triple negative breast cancer in December 2023. It was a shock for me. I am 38 years old and have two kids. The problem is that my treatment is delayed so much. It is March 15 and I still don’t have date of starting the chemotherapy. I just called chemotherapy suit and they told me my referral was lost??? They will chase it but it will take another two weeks. I am node positive and my lump was only 16 mm in December but now is around 4cm and it hurts a lot. I am very worried. I don’t know what to do. Is there anyone waiting for treatment that long?
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Hi there
So sorry for the situation you’re in. For me, the toughest part of this whole thing was waiting for treatment to start. I went to the hospital in May and my treatment (surgery) only started at the end of July. I’m triple negative too. Everything seemed (and was) so painfully slow. It was holiday season and there weren’t enough staff.
It’s probably the last thing you feel like doing but I would try and start chasing things daily. You’ll feel like you’re doing something and hopefully you will be/remain high on their radar that way.
I really, really hope you get a date for treatment to start very soon. If it’s any consolation, I found that once I was finally allocated to an oncology consultant, things happened quickly. It was diagnosis/wait for surgery which was slow.
Sending love and hugs
xxxx
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Thank you for your reply and sharing your experience. 
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Hi @hristina_85 I’m so sorry about the trauma you must be going through and indeed about the diagnosis itself.
If you are based in the UK and will be treated at an NHS hospital it might be worth contacting the PALS team at the hospital. PALS stands for Patients Advice and Liaison Services and they will advocate on your behalf with the appropriate departments to get your problems resolved. This isn’t making a formal complaint, although you could do that if it doesn’t get resolved quickly, but you probably wouldn’t want to go through that stress now. Try phoning the hospital and asking to be put through to PALS and I’m sure they can speed up the process for you. There is a link to find your local PALS in the web page below.
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Hi, I will definitely contact them because with my diagnosis 3 months of waiting is extremely dangerous.
Thank you 
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Sorry to hear your diagnosis I am still waiting for my treatment to start it’s been 10 weeks now I finally saw oncology on Tuesday this week and should be starting treatment within next 2 weeks I have triple negative grade 3 stage 2 invasive ductal breast cancer and mine has doubled during the wait I went to pals on Monday and then I was offered appointment Tuesday good luck
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Keep chasing - all sorts of appointments and follow ups are being delayed and ‘lost’ these days - not pointing any fingers anywhere, it’s just the way things seem to be going with volume of patients and staff under pressure (I do not work in nhs or any healthcare btw).
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Hi hristina, have you had any luck in them moving your treatment forward?
I am still waiting for the appointment. The chemotherapy suit received my referral this Monday. The oncologist called me after I complained, to say this is normal waiting, after all this is NHS, if want faster I need to go private. He also said he has a new secretary which has a lot to learn. So I am waiting ……
Even if they give me appointment for next week, which I doubt, the treatment will start the weak after. Nearly month after the oncologist appointment.
It must be awful waiting. I remember just waiting to get on and start treatment. I hope it starts very soon. Do let us know xxx
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Hristina, was thinking of you and wondered if you have any news of a date?
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Hello! They gave me a date - 2 of April. But I honestly couldn’t wait any longer and started my treatment in my country. Unfortunately my situation has changed during that wait. I have more lymph nodes now. I had two but now 6 confirmed. It was difficult decision to leave the country with all my family but I had no choice. The treatment plan is the same as in uk. I had port operation and first chemotherapy was Monday- Pacli, Carbo and Pembro.
I really hope something changes in NHS and no one needs to wait that long.
Unfortunately there is a shortage of oncologist and chemotherapy places in many Trusts.
I kicked up merry hell trying to get into chemo quicker. PALS twice, with no success. I asked if it was quicker to go private or change sites but was told would make no difference.
Eventually got 1st dose at 8 weeks post op when the evidence shows 4 weeks is optimal. (Triple neg stage 1).
Keep shouting but unfortunately I’ve concluded cancer services are just as broken as the rest of the NHS.
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I’m so sorry to hear this. The delay must have added enormously to your trauma. It’s totally unacceptable that more nodes were involved with the delay. I also had delay and by the time of surgery, the cancer was also found in a lymph node, when it hadn’t been beforehand. It was also unbearable waiting. Do you mind me asking which country you are having treatment in? I hope it goes really well for you xxxx
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Thank you. Unfortunately waiting is risky with this type of cancer. I am sorry for that happened to you too. I thought I found it early but apparently not. I am from Bulgaria, the health system here is also broken and could be also very slow. But I went in private clinic and I pay for some of the treatments. Unfortunately private treatments in Uk are very expensive without insurance.