Don’t know what to do surgery delays

Diagnosed tnbc brca gene may 21. Treated chemo/radio/mastectomy. Due to have oral chemo as well. Notes got lost no follow up for 6 months missed opportunity for oral chemo. Gutted. Yearly ct scans given. Referred for ovary removal and risk reducing breast surgery. Waited 63 weeks for ovaries No follow up !! Got scheduled for breast surgery 73 weeks later just been cancelled. I am devastated. Don’t know what to do. I knew I shouldn’t have looked at pretty bras again !! No other date scheduled. Completely and utterly lost. Risk continues and body dysmorphier heightened. Any advise ???

Dear Lorry,

I can see you are waiting for one of our nurses to reply to you, feeling sure this will happen tomorrow when department opens again.

I’m so sorry to read your post, unfortunately I’m not medically trained, would like you to know that I’m thinking of you, when you speak to our very kind and understanding nursing team they will be able to point you in the right direction.

I feel the waiting time is not acceptable, and you need answers to what has gone terribly wrong. I do hope you will get something sorted out very soon.

Wishing you, health and happiness going forward, with the biggest hugs from me to you.

Tili :pray::rainbow::pray::rainbow:

Thank you for your kind words just feel at a loss but thank you

Dear Lorry,

Understand where you’re coming from, I can remember only too well feeling so lost, hopefully today you’ll be able to get in touch with our Breast Cancer nurse who will be able to put your mind at rest a little.

Take care, please come back and let us know how you’re getting on biggest hug Tili :pray::rainbow::pray::rainbow:

Hello lorry,

Thanks for posting. This sounds a really difficult time. It’s understandable you feel lost after your delays and the cancellation of your risk reducing breast surgery. We wonder if you were having reconstruction as well.

As @Tili said it sounds like you need some answers. If you haven’t done so already you could speak to your breast care nurse who may be able to help you to resolve the concerns you have. Also, we’re not sure if you’ve spoken to anyone in your treatment team about the lack of follow up and not being able to have the oral chemotherapy you were due.

You may need to get further support with this. How you access this will depend where about you are in the UK, so these services are listed below.

England: If you’re unable to resolve a concern, you do have a right to make a complaint and may want to contact the Patient Advice and Liaison Service (PALS). You can find your nearest PALS office on the NHS website.

This is a confidential service for patients, their families, and carers. They can help resolve concerns related to health matters, explain, and handle complaints procedures and use feedback to help influence change. PALS work with staff, managers, and if relevant, external organisations to provide support and advice to people concerned about the care they are receiving.

Wales: If you’re unable to resolve a concern directly, you can contact your local health board.

The Welsh government provide guidance to people living in Wales on resolving concerns or issues with NHS services. This is called NHS Wales complaints and concerns: Putting things right

Scotland: If you need to raise a concern or need help with making a complaint about your NHS care, the Patient Advice and Support Service can provide advice and support with this.

You can register a concern or complain about your care by contacting the feedback and complaints team at your local NHS health board.

Northern Ireland: The Northern Ireland Direct website provides information on the standards of care which you can expect from NHS services in Northern Ireland. You can also seek advice from the Patient and Client Council They can listen to your concerns and are able to provide information, advice and help if you want to make a complaint.

We also wonder if you have had any form of talking therapy to help with your worries about risk and how you feel about your body. You are not alone in feeling this way. As well as the forums you may be interested in the range of other free services we offer to connect with other women to find out what helped them. You may also want to talk to your GP about this

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).

If you would prefer one of our nurses to call you. To do this, please complete this form ticking the box agreeing to a call back.

Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.

Out of hours you can leave a message and we will call you back when we next open.

Best wishes


Breast Care Nurse

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