Hi all,
Just wanted to know if anyone out there who is being seen privately has been asked to go on any trials. Obviously I know that going private has advantages but does anyone else feel isolated as no communal backup etc as all done behind closed doors.
I am triple neg is anyone else who is on any trials??
Thanks
C
Hi zjlove,
Yes, I agree that going privately everything is done behind closed doors so you do feel very isolated. I am grateful however for the speed that my treatment has moved along. I have not been offered any trials, my onc is not aware of any current trials specifically for triple negs, however there is one at Guys available soon. Not soon enough for me though.
Take care, A xx
Hi Andrea
I agree aswell I was diagnosed on the 15th August and have had surgery and 2nd chemo already the hospital although i hate the place is really clean and the staff are all really lovely but I just feel that i need to see other people as well as this forum, How did you hear re trial at Guys is that where you are having treatment, I am in Gloucestershire.
Thanks
C
My onc told me about the imminent trial at Guys - it hasn’t started yet and I don’t know any further details. I am being treated in Kent. I agree that you just don’t get the opportunity to meet anyone at the hospital, although I would rather be there than anywhere else. I start my first chemo on Weds, have had surgery and was dx 19th Sept.
A xx
Hi
I have had all my treatment (chemo followed by surgery) privately so far as I have medical insurance from my company. Maybe it is me, but I have appreciated being “just me” and not having to be sociable when I m having treatment. I like to exchange experiences here but like the individuality of my treatment
Andrea - where are you being treated. If, like me, you would fall under Maidstone and T Wells NHS Trust, you are probably glad to be private! I know that I was when I saw the media. I have been treated at the Nuffield Tunbridge Wells
Sharon x
Hi zjlove,
I to am from Gloucestershire, but was treated through NHS, who, I have to say have been marvellous.
I was recently at a Breast Cancer conference in Gloucestershire and a lady actually raised the question regarding feeling isolated ie., having no contact with Breast Care nurses etc., as she was being treated privately…the nurses did say they were happy to see/talk to private paitents and although they should, they don’t charge them. The lady was advised to take the issue up with her consultant.
karen x
Taking up Karen’s point about not being able to see the bcn, there has certainly been no problem with me having access to mine because I am a private patient. My consultant copied her in on all correspondence. She even came to the hospital twice to see me after my surgery.
Sharon x
I have been treated privately (work pkge) and had a breastcare nurse, local charity get togethers wig fitting ,look good feel good in fact everything I could possible want also a free course of complimentary therapy for both myself and partner. The treatment I am now having is still private but have in NHS hospital which is equally good… I really have no gripes either way. Sorry forgot the private room with bathroom is the one thing esp if your bowels etc sickness aren’t doing what they are supposed to do.
Hi Sharon,
Yes, the media has been v. scary so pleased to be private. I would come under the same NHS Trust as you.
Have you been able to work thru your treatment?
I have been in touch with the bc nurse on numerous occasions so no problem there.
A xx
Hi
I am being treated privately too - had my WLE as a private patient in an NHS Hospital - but my chemo is in a Private Hospital - I do feel as though I have had to find information out for myself - my Breast Care Nurse works for the NHS and I have to leave a message for her to contact me - you can’t just speak to her there and then. I am also triple neg and been told that chemo and rad’s is all there is for me.
I would have to travel long distance if I was not covered by my husband’s work - local BUPA hosp is do-able, so for the sake of some kind of “normality” and petrol costs, I am pleased to be covered.
Karen
Hi
I had all my treatment private through a work insurance package. I had lumpectomy and WLE at Alexandra Hospital in Stockport and it was wonderful. Own room, clean etc etc. Surgeon came out on a Sunday night to drain wound twice . The Alex has a breast care nurse who is wonderful.
I had my chemo there and again most of the nurses were wonderful. I was in a very bad state mentally and two of them would sit with me for hours ressuring me and supporting me - I am sure they would not have had the time on the NHS. Also I was given chemo drugs (taxol) which at the time was not available for node negative patients on the NHS.
However when I went for my radiotherapy at Christies ( NHS) as no radiotherapy machines at Alexandra, I did find it very levelling to see all those other people suffering like I was and it did make me realise that I was far from the only onewhich in a way was comforting.
There are pros and cons to both but if I had my time again (please God that I dont!) I would opt for private.
When I had my yearly mammogram last December I took the films straight back down to the consultant to be read - none of the awful waiting days that the NHS put you through.
Love to all
Alise
Hi Andrea
I normally commute to London for work so when I started chemo (before surgery) I was advised not to travel on the trains because of the immune issue and later, of course, the fatigue. When I am working I leave the house before 7am and don’t get home till 7pm - you can’t really reduce hours or do half days when you do the commute that i do.
My company have been great and I have been doing a reasonable amount of work from home, in between treatment and resting. I have been to the office about 6 times for specific meetings and the company have arranged a car each way to take me.
I am just getting over surgery before my rads start on 5th November but that is at Maidstone as it is the only radiotherapy unit locally and I’ll be starting my herceptin mid Nov at the T Wells Nuffield. After a holiday in Oz over Xmas I will start back to work mid-Jan on a graduated return starting at about 2 days a week or whatever I can manage
Sharon x
I am triple neg and was treated privately but it only made a difference with op where I had private room and consultant surgeon and anaesthetist.For chemo I attended NHS chemo nit but was given neulasta.not available here on NHS.Rads was also in NHS unit.Isee my consultant at the private hospital for checkups.I was offered a place on a trial for new anti sickness drug but turned it down as possible side effects too scary!Will have mammo at private hosp but surgeon says I will still have to wait a week for results.I will query that in the ligt of what you have said.I have been satisfied with all aspects of my treatment so far.If I have to go through it again I would go private for surgery even if I have to pay myself.I would also make sure that whatever is th current ‘best treatment’ is available on NHS.If not I would remortgage my house to pay if I had to.I think its wrong that we cant all have the very best whatever our circumstances.
Hi I have private insurance but was told that the private consultant was on holiday for at least another week so I was booked into see a consultant with the NHS for the following week. They were excellent and very supportive. The surprise was that when I was booked in for surgery a week later I was told the name of the consultant who would carry out the WLE and it was the same one as I would have had if going private. He did an excellent job. I was a day patient but had I been told that I had to stay in I would have opted for the private ward.
Caz xx
Hi Horace, I’m pleased you have been satisfied with all aspects of your treatment. Can I ask what anti sickness drugs you took, and did you take the ones babyboo referred to - Metroclpamide.
Thanks, A.
I was diagnosed a year after letting my BUPA cover lapse - we figured that as neither of us had claimed on it for 10 years it was something we could do without and we needed the money as we had started a business 5 weeks before my diagnosis.
However, I have had marvellous treatment on the NHS. When I had my ANC I was in a side room with en-suite for 5 days, as were 2 other ladies who were having mastectomies. I had my chemo done at 2 hospitals, both had brand new haematology wards and were very comfortable. I am now on Herceptin every 3 weeks and I have this done at home as the hospital treating me has funding to offer this to patients who would otherwise have to make a 50 mile round trip every 3 weeks. I don’t think I could have had better treatment if I was still on BUPA.
I have private medical insurance, but was told as i chose to do a trial it would not help. If i used my insurance the only differenence would have been that i would have seen my consultant at every visit rather which ever doctor was there. I felt it was of no benefit so didn’t bother. The only use was when i stayed in hospital for my operation and they paid out for the stay in a nhs hospital.
Gaynor
x
I was diagnosed on 25 May 2007 and had a lumpectomy on 27 May 2007. I have private medical insurance through work. All my chemo was given at home and I am currently receiving Herceptin at home. Went to NHS hospital for rads. I had access to a breast cancer nurse. Having the treatment at home means that I don’t have to travel and then wait to be seen. During rads, I met some women who, when having chemo at hospital were there for the best part of the day. I felt a bit isolated at first but I went along to Maggies Centre and received fantastic support and also met loads of other people going through not only breast cancer but a host of other cancers.
Margaret
I think that, in my case, the breastcare nurse would have been able to give me better care had I been treated in a National Health hospital. My operation was in a private hospital (paid through a work scheme). There was a lovely breastcare nurse whom I saw once during my stay, and who would later telephone me back when I left messages. However, she also works for a National Health hospital a few miles away. When I developed an infection and wanted to show it to her, she said she did not have a room in the private hospital to see patients, and that she could not see me in the National Health Hospital because I was a private patient. She told me to go to my GP! I think that the system is not flexible enough. After all I have paid towards the National Health for several decades; I was not a health tourist. I did make an appointment to see the GP, but that wait delayed my treatment when the breastcare nurse would have been able to say straight-away that antibiotics were necessary.
Me again, folks. There was another thing that made me feel that private treatment was isolating. I had the radiotherapy treatment at a local National Health hospital, and I waited with National Healt patients, but radiotherapy was paid for by the private health insurance. When I asked about hospital transport, I was told that I was not eligible because I was a private patient. My disabled husband could not drive me, so I just had to drive myself. It was not easy, and not fair.
Elena