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Radiotherapy waiting times.

SARAHBR1
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Hello, 

Not sure if you can help at all. So I finished my chemotherapy on 30th August after 6 rounds and had my usual telephone call with my oncologist to check in after and see how it went. On this phone call she told me there is a long waiting list for radiotherapy, of 6 months for the planning appt and then another month for the actual radiotherapy to start. 

I was really shocked as at our very first meeting in April before I started any chemo, I went with my husband and she mentioned the waiting list then but said it wouldn't apply to me if I was having the 6 months of chemo, I would go straight for radiotherapy afterwards as soon as I was well enough usually a 4-6 week wait. So my husband and I were (now we know) wrongly under the impression that the referral for radiotherapy would happen then to make sure I was in the system for when I fished the 6 rounds of chemo. This I have been told now is wrong and the referral isn't made until you finish chemo and they are now apologising if I feel misled. 

I feel hugely misled and obviously really concerned as I was told the radiotherapy and the endocrine treatment were the most important for me as I was borderline for chemo but chose to have it as I am young (39) so my risk of reoccurance increases over my life span. 

I went to pals with this but they haven't really responded to any of my concerns just kind of said sorry you feel misled but this is the process and this is the wait list. 

I was told other local hospitals are no longer accepting referrals but not offered another option. 

If the wait is 7 months like they said I will be 14 months post diagnosis and 12 months post op (mastectomy and lymph node clearance) before I receive radiotherapy which just seems absolutely diabolical to me.

I'm obviously really concerned that this will increase the risk of it coming back but when I challenged this with my consultant she just said well you can start the tamoxifen in the meantime....

I know tamoxifen and radiotherapy do completely different jobs so this just seems like a token gesture to try and make me feel better. 

This is really affecting me psychologically as I had the end in sight and now I don't. Being told by my oncologist to just go back to normal in the meantime isn't really an option right now as I feel so anxious. 

Thank you. 

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    Hi Sarah

    The waiting time to start radiotherapy treatment is a huge worry for all of us on the lists. The main one being the cancer advancing with time. All hospitals seem to have a big backlog. I looked into getting the radiotherapy I need privately, but the costs soon mount up. Initial consultation, scans and planning treatment, shields if needed, the 20 to 30 sessions, plus care and medication for side effects like burns nausea etc.  Then follow up visits 4 times a year.  £8000+ to £15,000 for a basic treatment  in the first year, and even then there is a bit of a wait to get started. A bit out of my budget. But I think I would go down this route if I could raise the money.

    Best wishes

    Ed

  • Hello and thanks for posting

    I'm sorry about what you are going through right now. 

    The waiting time for radiotherapy to start can be very distressing particularly when you were told initially that the referral to have this treatment was going to be made earlier so that things could move forward as soon as you finished chemotherapy. 

    We are aware that the NHS is under huge pressure at the moment due to staff shortages, This shortage impacts the ability of radiotherapy clinics to operate at full capacity leading to longer waiting times for patients. Waiting times to start radiotherapy can vary between hospitals, and we know from enquiries to our service that delays are happening across the UK.                                                                                                                                                

    You might want to consider pushing further with PALS explaining how this delay affects you emotionally and psychologically. It might also be worth asking your GP or specialist about getting a second opinion. They can refer you to an NHS team or a particular doctor. There are no guidelines about waiting times for a second opinion, which may lead to some further delay in starting treatment. Some people choose to pay for a second opinion from a private doctor.

    I'm sorry not to be able to be more specific but I hope your oncology team or breast care nurse can advise you further on what the impact of waiting to have radiotherapy treatment will mean in your individual circumstances. 

    Give us a ring if you would like to talk anything over. The number to call is Freephone 0808 800 4040 and the lines are open from 9 am till 5 pm, Monday to Friday.

    Kind regards,

    Celene

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