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Has anyone moved to access better cancer care?

Briallen
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Hi all

I'm part way through treatment for breast cancer - stage 2 grade 3 invasive ductal carcinoma. I was diagnosed 4.1.23. After a 6 week wait I had a WLE and SLNB, which showed nodes are clear but unfortunately didn't get clear margins. Still waiting for the results of oncotype test to know if I need chemo.

I was seen and diagnosed within a month of GP referral, but since then I have faced long waits for all aspects of care, which has had a huge impact on my mental and emotional well-being. I am constantly having to chase up people who say they will call me and/or send letters with appointments, results, information etc. Last week I was due to meet my oncologist for the first time, only to find she has gone on leave and no one had contacted me to cancel the appointment. I was devastated to say the least. I was told I needed a re-excision over a fortnight ago and I still haven't heard when it might be rescheduled. I worry that the delays and mistakes in the Welsh NHS will affect my overall chances of survival.

I am seriously considering moving to a different part of the UK to access more timely and consistent care. Has anyone managed to do this partway through treatment? I know in England you are able to change hospitals if you're unhappy with waiting times or quality of care, but this isn't an option in Wales. Not sure how well the devolved NHS in Wales is able to  transfer care to the English system. My main fear is falling through the gaps, admin error etc which will create even more delays and prevent me from getting the treatment I need in a timely manner.

Would love to hear other's experiences of seeking care in a different setting - and whether you recommend or would caution against doing it.

Thank you

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    Brie 

    I went private waisted 7 days for biopsy results on call consultant my consultant even rang me on aug bank holiday weekend my diagnosis was last July I finished everything in nov it went like breeze I can't tell you the name here but if you add me as friend I will tell you x 

    my Oncotype score came back on a Friday late I had a email 7 pm on Friday night thibk that's the difference 

    This is my personal experience not sure if it's the same at all private clinics 

    good luck love Lara ️

  • Offline in reply to laraj

    Sorry forgot to say I didn't transfer I went private from word go my nerves couldn't of stances the waits I needed urgency and I did get it x 

    love Lara ️

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    Hi Briallen,

    I am sorry to hear of the way that you've been messed about. I live in Scotland and I had breast cancer 13 years ago and had a lumpectomy. My surgeon didn't get clear margins, but assured me that he realised this at the time and took a little more away. He assured me that I did not need any further surgery. However, I developed a lump in my other breast within 6 months and he refused to scan this, telling me that it was all right. I refused to have radiotherapy for one breast, whilst he was ignoring the other. I had a horrific appointment with my oncologist and refused to see her again. Breast care nurses were not at all supportive.

    I went to see another consultant for a second opinion and was so impressed with the difference in him and in all of his supporting staff. He offered to take me on and I jumped at the chance. My local hospital is only five minutes down the road and the new hospital is a 4 hour round trip from home, so not nearly so convenient. However, I have never regretted my decision to change. I developed a second cancer, exactly a year after the first and the difference between the treatment from the entire care team at the new hospital was so superior. 

    I owe my life to my second care team and I thank them most sincerely for their care.

    Please let us know what you decide to do. We are always here for you.

    Kind regards,

    Jolamine 

     

     

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    Hi Briallen,

    I'm in Wales too and was diagnosed in October 2021. My experience was great TBH, I waited ten days for biopsy results and had my WLE 5 days later. I would have had to wait over the 12 weeks recommended treatment time for radiotherapy so fortunately was able to claim on workplace medical insurance and get it done privately. 

    This must be so stressful for you, I would be going out of my mind! Fyi I am in north east Wales but I know you can check wait & performance times for each health board if you Google this on Welsh NHS. One option for you is to contact patient liaison at the hospital you're being treated at. Don't take any excuses, this is your life and although you shouldn't have to, don't be afraid to PUSH as hard as you can. Take nothing for granted i.e. don't assume something is happening. Can your GP help? I hope you get your treatment sorted, it's stressful enough to have a cancer diagnosis without this palava. 

    Best wishes 

    Jane 

     

  • Offline

    Thank you all - appreciate hearing your experiences. Jolamine - I am so sorry you went through that, it must have been very worrying having an unsupportive care team. The nurses looking after me are very kind but it's obvious from the waiting times and general shambolic administration of everything that the health service here is not functioning as it should. 

    I have subsequently found out I will have to have chemo as well, so have decided to relocate once I have got this next operation out of the way. Will be really tough to leave behind my life, but ultimately I need to give myself the best possible chance of surviving this illness, and I don't think I can cope with any more waiting around worrying, especially as I have a high risk of recurrence. At least I can feel I am doing everything I can to help myself get the treatment I need in the future.

    Xx 

  • Offline in reply to Briallen

    Brie 

    I saw that you have said you now need chemo however did oncology tell you this or your consultant 

    I was told this by consultant when I saw oncology she rolled her eyes and chemo wasn't required after all 

    or did you get the oncotype DX test which told you this ? 
     

    love Lara ️

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