No Post Mastectomy care from NHS

Hi

My experience was different to yours.  I left hospital with drains (i had a double mastectomy) so the BCN rang me daily to see how much fluid had drained. I had my drains removed 2/3 days after leaving hospital and then my pico dressings checked a week after surgery.  They had made me an appointment for 2 weeks after surgery for the results but these wasn't ready. However, they told me to keep my appointment so they could do a wound check. I know different areas may have different policies but I would presume you would need to be checked.

If you can I would ring again to see when your results appointment will be. Do you have a breast care nurse as you should be able to ring her 

Hope all goes OK xx

Hi there, I was exactly the same as you. Mastectomy March 2020, kept in overnight, drain removed and sent home. Told I would have follow up appointment to have dressings removed. Had a call from BC nurse and told no follow up appointment and to remove dressings myself. All due to Covid!

Hi Gladitsfriday,

Sorry to hear you are not getting the care and support you should have and need. Did you have a drain when you came out? My experience was also different. I had my Mastectomy on 23rd November. I was under the care of my community nursing care team who visited the first few days to check wound and drain and then phoned every day to take drain measurements. I felt very well looked after by the whole team. If you have any questions I’ll help if I can. Feel free to read my profile 

take care

Janine x

No way would I think this is satisfactory.  Contact Patiennt Advice and Liaison Service (PALS) for your hospital trust and tell them about how you have been treated and neglected.  I would have thought that there should be some discussions about follow up treatment.  What type of cancer did you have?  Was it er+/-, her2+/- ?  I would expect radiotherapy/chemo to mop up any possible remaining cancer cells which may have escaped.

I too have had appalling aftercare after mastectomy. 

No district nurses, had to do all wound care myself, had seroma aspirated 10 times at hospital.  It's gone on for nearly 4 months.it hasbeen a real uphill struggle as I live alone as well, and have felt quite isolated during the lockdown.

 I feel there is light coming now, but it has been a very difficult experience,  not helped by falling on the ice in January and breaking my arm  .

It's best to go through your own GP I found out too late, even if you are still attending the hospital.

Hi sorry to hear you’re having a struggle post operatively, note you’ve liasef with a Nurse Practitioner at Hospital but have you contacted Breast Care Nurse , just in my experience they usually carry pagers so can be contacted directly via hospital switchboard alternatively your Surgeon’s Secretary can normally deal with any queries and facilitate appropriate contact from professionals. If you are accessing Community Nurses they usually require a referral into their Service from a healthcare professional such as GP or Hospital Team they will not automatically be aware of you, unless a referral has been made.

I was advised my Breast CNS could be accessed at anytime and all contact numbers were provided to me prior to surgery 

xx

Hi.I hope you are recovering well and thanks for your response.I now have a F2F appt with my consultant but my breast nurse has been on holiday twice in the period since I was diagnosed and one of these was at the same time as after my op.I am going to see how it goes after the next appt but think all women should have after care.Take care of yourself.x

Hi.I am sorry you have had a horrid time.It is quite scary to be left alone with a wound and not know if it is ok or not.I hope you are recovering.I am thinking about campaigning to change this as I was told it was NHS policy.It is shocking! You take good care.x

Thank you and I hope you are recovering well.x

Hi.Apparently I need to complain to the hospital before Pals but as I might need more treatment I am holding back, in case I am penalised for complaining.I was told it was NHS policy and if that is true I intend to campaign to change this.Its scary and lonely and I had to ask my 25 year old son to look at my wound, because I was anxious about whether it was healing or infected.