I was diagnosed June 15, had a mastectomy in July, chemo and radiotherapy which finished in December. I cannot fault my medical treatment at all but emotional and practical support such as choosing bras and prosthetics has been completely lacking. Does anyone else have similar experiences?
I had my treatment private in Thailand As hubby was working there
at the time and I found that as well. Fantastic nursing aftercare by all but .i couldn’t even get a bra lol. I’d to go to Bangkok and as for prosthetics it was non existent… I.d to buy over the Internet and hope they arrived.
i used this this site for most of my information and support.
Hi NJ
I got my prosthesis from the hospital where I had surgery ( NHS)
Did you not even get brochures for mastectomy wear suppliers?
if you still need to get equipped my advice would be to look online at Nicola Jayne and Amoena
I have found both to be be very helpful and they will give you telephone advice if you can’t make it to a branch.
From speaking to women who had BC surgery privately I know you are not alone
Best wishes for your recovery
Had MX and immediate recon Feb 14 as a private patient, and totally agree that the care etc whilst an inpatient is second to none but there was only access to a breast care nurse two days a week and though I am on a supposed 5 year check I am still waiting for my yearly mamogram appointment to be issued by the private hosptial and no doubt will have to chase!
I had my mastectomy and reconstruction privately but always felt like I as missing something. The NHS ladies I met seem to have more information and knew more than me. My care was second to none but I felt isolated and although my BCN was fine I just felt like another breast cancer woman and not an individual.
Thank you all for your replies. Its good to know I’m not alone. Is anyone getting any support about making decisions regarding reconstruction? Or just dealing with what we’ve been through now treatment is over?
Today I spoke to the breast care nurse at the private hospital in Brighton where I had chemo. I finally phoned her having texted twice over two weeks and had no reply. I told her that I feel they should offer some sort of ‘Moving Forward’ support (particularly as the Breast Cancer Care ones are all a minimum of 45 minutes drive from where I live) . She has asked me and a fellow chemo patient to go for a meeting to discuss all the support we feel private patients are missing. I feel pleased about this and it seems a positive step forward. I suggest anyone else having treatment privately does the same.
I can’t fault my surgeon and oncologist who are both leaders in their field in the local NHS hospital. I have heard from NHS patients who never get to see them, often delegated to their registrars.
They also attend a weekly MDT meeting where is appears they discuss both their private and NHS patients.
My surgeon also discussed all reconstruction options and with me, provided post op bras and softie prothesis. I also ordered a spare from "knittedknockers.CO
I do agree that the emotional support is lacking as is the peer support that I assume you get in a chemo unit.
I attended a Macmillan moving forward course reasonably locally. Would thoroughly recommend it and look good feel better workshop.
I am currently benefitting from the bonus of having private care - had reconstruction surgery earlier this week, my surgeon called in to see me the next day and ended up back in surgery to remove a blood clot. Then she’s kept me in until drains can come out, we have spoken / texted or emailed each day since as she’s been away. I sent her photos of a concerning swelling and she’s calling in tonight en route from the airport. Don’t think I’d have got that service at the general hospital. I’d have been kicked out on Tuesday then taken my chances with junior docs in A&E.