Delay in Treatment

[R_Evans]

My mum was diagnosed with HER2 positive breast cancer back in September. 

She had a lumpectomy operation on the 19th of October which showed a 6mm lump and the lymph nodes were clear. However, there was a small 3mm pre-cancerous lump in the margins so they did another op on the 7th of December which came back clear.

My mum wants to have chemotherapy and herceptin to make sure that all cancer cells are gone. She wants to get on with this as soon as possible. The problem we have is there is no chance of seeing an oncologist before the 15th of February and then there could be a wait before starting treatment. We’re worried that all the good work of finding and operating early will go to waste as the longer we go without chemo, the less effective it is. On top of this my mother is a carer for my father and she wants to get better as soon as possible to look after him as his Parkinson’s condition is getting worse.

Is there an option of going elsewhere to see an oncologist or even get a private referral from an oncologist and then getting the treatment through the NHS.

We feel helpful and desperate at the moment, but don’t know what we can do.

Any help would be much appreciated.

Thanks

[ChattersJ]

I’m sure you can opt to see someone privately. My oncology care is all private and covered under insurance but I know I could pay for each appointment if I wasn’t insured. If there is a private wing to the hospital your mum was treated at she could call their private outpatients department and see if her surgeon has a private clinic. 
I just wanted to say how much I identify with her situation. I am the carer for my mum who has advanced Parkinson’s (and my husband was diagnosed with early onset Parkinson’s at 49 - what rubbish luck eh?). Sending lots of luck and light to get the answers your mum and family need xxx

[Nurse_BCN]

Hello R_Evans 

Thanks for posting. 

It’s understandable you feel desperate while your mother waits for her oncology appointment and to start her additional (adjuvant) treatments especially as you explain she is a carer for your father. It sounds like a stressful time for you and your family. 

Chemotherapy typically starts around four weeks after surgery. Some people have a longer wait than this and some may be delayed if they have any complications recovering for the operation (for example wound infection). It doesn’t sound as if your mum’s delay is for this reason. 

It’s difficult to say what impact a delay of three months will have on the outcome. According to this study chemotherapy should be started within four months of diagnosis. 

It might help to start by contacting the breast care nurse. Your mum can do this, or you can on her behalf with her permission. Your mum could ask to be seen at another hospital, but this may result in a further delay. As @ChattersJ says there may be a private patient service at the hospital your mum is at. 

If you remain concerned, you could raise this with the hospital. The process for this varies depending on where in the UK your mum is. 

In England it’s the Patient Advice and Liaison Service (PALS).  In Wales it’s the local health board. Scotland has the Patient Advice and Support Service and in Northern Ireland  you can contact 

the Patient and Client Council  

It’s possible your mum will have combination of chemotherapy such as EC-T. There are different regimens available though so again her treatment team are best placed to say which she will have. And as you say your mum will have trastuzumab (Herceptin). It might help to know treatment decisions are agreed by the multidisciplinary team. 

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen to your concerns, talk things through and signpost you to more support and information. 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 tic** king the box agreeing to a call back.**  

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Best wishes   

Jane 

Breast Care Nurse   

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