Feeling lost

[Island]

Hi,

I was diagnosed mid July with DCIS and invasive ductal breast cancer on what should have been a routine appointment checking a couple of cysts. 

I’ve since had one consultation and an MRI scan. 

My next telephone appointment was cancelled a couple of hours prior as the MRI report wasn’t available so rescheduled for later this week.

Advised today that the report still wasn’t available then a follow up call saying it was so my appointment will now proceed.

A month down the line and feel no further forward, no idea what’s ahead.

Feeling a bit lost as to how the whole process should flow? 

Not sure what to expect.  Not really feeling the ‘care’ atm.

[Shi]

Island So sorry you are not feeling the care of your team Go to your pals office at your trust tomorrow if you can or phone them up and run through the timelines if everything that’s taken place and advise that you don’t feel your care has been satisfactory to date and you would like them to investigate at get back to you. Please do also phone the number on here and speak to a nurse Your team will be planning your treatments but rightly so you want to be having discussions with your consultants and you should have been given a breast nurse as a main contact when you received your diagnosis, again take this up with pals office if this wasn’t the case We’re all here and I’m sure others will pop on with support and any words of experience they have too Do keep asking away breast cancer now is here as much or as little as you need Shi xx

[Artura]

Dear @Island  , the waiting is rubbish isn’t it? Have they given you the details of your breast care nurse? I find they are very good at getting stuff done, and mine responds really quickly when I’ve needed to email or call her. Might be worth giving them a call… If you haven’t been given their contact details, I’d just call the hospital and ask to be put through to the breast surgery specialist nurses.

[Nurse_BCN]

Hi Island 

Thanks for posting.  

It’s understandable that you feel ‘lost’ and waiting for results and a treatment plan can be really difficult.  

As Artura says, you should have details of a breast care nurse to help support you and coordinate your care by liaising with the treatment team. 

Your case should have been discussed at a multidisciplinary meeting (MDT) and a plan of care made. When you attend the results appointment this week, you’ll hopefully have a timeline for your treatment. Do contact the breast care nurse ahead of the appointment to check if she’ll be there or if you can talk things through with her afterwards for clarification.  

You may also like to read about treating primary breast cancer here. 

If you’re unable to resolve a concern, as Shi says, you may want to contact the Patient Advice and Liaison Service (PALS).  You can find your nearest PALS office on the NHS website (England only).   

If you live in Wales, 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 Health in Wales, Putting Things Right.   

In Scotland, it is 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.  

The Northern Ireland Direct website provides information on the standards of care which you can expect from NHS services in Northern Ireland.   

At Breast Cancer Now, we offer a range of free supportive services that you might be interested in. For more details about all of these services, please see the information on the link, or call our free Helpline.   

Talking to someone who has had a similar experience can be helpful and our Someone Like Me service can arrange for one of our volunteers to talk to you by email or telephone. Our volunteers have had a personal experience of breast cancer and are trained to provide support.   

You can ring the Someone Like Me team on 0345 077 1893 or email them at someone.likeme@breastcancernow.org,so they can then match you to your volunteer.   

Your GP or breast care nurse may be able to refer you for some talking therapies if you need some emotional support at this difficult time.  

You’re welcome to call our Helpline if you would like to talk this through or have any further questions. 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 like a nurse to call you do complete this form . Ticking the box agreeing to a call back.    

Our 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.   

We will be closed on Monday 29 August due to the bank holiday.   

Best wishes  

Addie   

Breast Care Nurse   

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