Lack of support for private patients

I was diagnosed June 15, had a mastectomy in July followed by chemo and radiotherapy.  My treatment has been very good but I have had no help with choosing protheses, bras etc and no offer of counselling. Have other private patients had similar experiences?

Hi NJ, 

I am sorry to hear you are having trouble accessing information regarding prosthesis and I am sure users will be along soon to share information and offer support.

I have moved your post to the Living with breast cancer board to give users more of a chance to respond.

In the meantime you may want to call our support line at 0808 800 6000 who will be able to provide you with some support and information.

Best wishes, 

Lizzy 

Digital Community Assistant 

Hi I was diagnosed March 14 had surgery,chemo, surgery then rads. I too found we fall into a hole with regards to support. Also my surgery was at a differen hospal to oncology. However i did find help ftom a nurse who yad had breast cancer and this forum was my saviour especially being able go alk to the support team on the phone

Hi NJ

 

I just wondered what area you live in?  Breast Cancer Care holds information sessions on bras and prosthesis following surgery and you can find out where these are held here; breastcancercare.org.uk/in-your-area/support-events

 

If there isn’t one in your area you may find our publication Breast prosthesis, bras and clothes after surgery helpful breastcancercare.org.uk/information-support/publication/breast-prostheses-bras-clothes-after-surgery-bcc123

 

Shelley

 

Regional Services Coordinator

 

 

I was DX in September 14. Had all my treatment privately. Surgeon and onc fantastic and very available through mobil numbers and quick access to appointments.

Chemo at home seemed like a good idea, no travelling or hanging around and timing of my choice to fit in with school run. Also 100% attention from my nurse throughout. And the nurse came to my house the day before to do blood test.

Rads at a different hospital 30 miles away, for which they laid on transport.

However, no other support offered. I had a big mental crash towards the end of chemo. Macmillan nurses useless as they only support terminal patients, ditto for local hospice. It wasn’t til I’d finished chemo that I found a local support group and hair saloon who have a weekly morning session exclusively for cancer patients. Now nearly a year post chemo I’ve found a local charity offering one to one support.

I do not know if I would go private again - it’s convenient, but unsupported.

I was diagnosed only a week ago, and am yet to have my first treatment of lumpectomy. However, having gone privately for the first two appointments I started to get concerned and feel stressed about a few aspects of how things were going. I even wrote about it on another thread on ‘just diagnosed’, I felt alone and there seemed to be no structure of support in place. I felt left to decide things myself and even ring to book my own surgery without even having seen a breast cancer nurse. I came on this site and found out from others the sorts of experiences they had had on NHS from diagnosis and it became clear that the private system wouldn’t work for me. I didn’t just want a nice room, I wanted people around me and to be part of a big set of resources to give me the best support emotionally. I transferred back to the NHS, and although I’ve yet to experience any further appointments many people including my surgeon sister have said that the ’ lack of guidance  and clear process’ in the private sector would have been hard for me over a longer course of treatment. A one off operation or need might be different of course.