thanks for that but we are ok.
The new PSA test is amazing at detecting prostate cancer in the early stages, according to the RSH if you are going to get a cancer this is the one to get, it is so slow growing that you can choose to live with it.
maybe they will be able to detect possible BC that way one day.
keep up the good work
My biggest gripe with this area was the length of time I had to wait for HER2 results,even longer than Chris.I was private too!I also feel that sentinel node biopsy should be available everywhere.I just had node sampling.When I began this journey I was clueless and accepted what I was offered.Now I'd probably shop around more but,overall I am pleased with my treatment and with the expertise and care of my medical team whose kindness and professionalism was exemplary.dear Chris I am sorry to hear of your husbands dx.Get in touch if you want to meet up for a chat.Love Valx
I have had fantastic NHS treatment here in Cornwall. I found the lump the monday before Easter last year, saw a locum GP the same day, she got me an appointment with Consultant for the next Tuesday (8 days including easter) where I had a Mammogram, Ultra Sound and Needle Biopsy, the only reason they did not give me results immediately was consultant radiographer was off sick. Returned next Tues told malignant and had Lumpectomy on Thurs. Got results 6 days later told it was Lymphoma and referred immediatley to Haemotologist. Saw her within an hour, had Bone Marrow test next day and CT scan a week later. Second lot of tests said it was Non Hodgkins Lymphoma Grade 3 and had to wait a week for more tests. Was then told it was agressive breast cancer not lymphoma. I saw the Breast Consultant the next day and he called in the Consultant Oncologist at the same time. By then I had 2 new 5cm. lumps so started TAC Chemo within five days. Masectomy in Oct. Node clearance in Nov. Bone & CT scans in Dec and Rads in January. All finished now as triple neg. All results in less than a week and the only delay was due to errors at Path Lab and then they sent samples to two other labs for second opinions. I feel I have been very lucky in the circumstances and will never complain about NHS again.
sorry I have not been able to get online until today.
I have sought out an alternative hospital and surgeon and am glad I am the type to do that .
The purpose of my starting this post was to make others aware of the fact that they too have options and some are so overwhelmed by the whole diagnosis that they are unable to motivate themselves as I did.
I too had private medical cover in the days I worked full time, could not take the chance of needing time away from work and fortunately never had to use it.
But breast cancer and other illness like it should be the same for everyone regardless of where they live or ability to pay.
And its only by speaking out will any changes be made so those who choose to critcise my posting, feel free to get your anger off your chest but no one is to blame for your BC so why not channel your anger into making a difference for the future of others diagnosed as I am attempting to do.
I dont know how to raise awareness for others in my area yet. if you do let me know and maybe we can change things countrywide for the better.
My husband has just been diagnosed with prostrate cancer, double whammy for us this year. We believe some things are meant to be and its how you deal with it that makes the difference, do we feel sorry for ourselves no thanks got too much living to do.
got to go keep well all we're busy helping my daughter move house
I have to say here in Nottingham at the City Hospital the waiting is nowhere near as bad as you are experiencing, we have results within two days, paying for private care would seem to hold little benifit in this case. I have had to chase things up regards waiting time for scans, but thats because the doctors haven't seen things as urgent as I have.
Bear in mind that you do have the freedom to ask for treatment anywhere in the country even under the NHS, you might need to travel but thats not a lot to worry about if you want the best (Granted you shouldn't have to play the postcode lottery).
I think your waiting time is totally unacceptable so I am glad I am not in your shoes, have you thought about ringing or writing to the Health Trust in your area? I have always received swift replies and shortened waiting times when I have made a nuisance of myself, yes I know that is not necessarily the best way or fair to others but I have only ever asked for what I am entitled to and never asked to be 'jump the queue'.
Be proactive its the only way in my experience.
I too feel I have received first-class treatment on the NHS both times. With my first bc in 1998, I found the lump on Dec 6th which was a Sunday. Went to see GP on Monday morning and had an appointment at the one-stop clinic at Shrewsbury on Dec 15th. The only reason I didn't get the results that afternoon was that the pathologist was away and couldn't analyse the biopsy that day. Instead the consultant rang me at home with the results on the 18th. Because of the Christmas/New Year holiday I couldn't have my op until January, but was at the top of the list on January 10th. 5 weeks from finding the lump to surgery seemed fine to me in the circs. Didn't have chemo but rads started as soon as my WLE scar had healed.
Second time round I was treated at the Churchill in Oxford. Found the lump under my ANC scar on holiday, rang the hospital as soon as I got back and was seen the following Monday, August 1st. Unfortunately the lump felt like and was thought to be scar tissue (except by me) and therefore the precautionary ultrasound was scheduled as routine and it took over 3 weeks for me to have it. The ultrasound was inconclusive so I was given a mammogram straight away and even then the lump didn't look like cancer. As a precaution I had a core biopsy and got the results straight after the Bank Holiday. After that things moved quickly, with full scans and tests before I saw the consultant breast surgeon, and I had my chosen mastectomy at the beginning of October.
Given the fact that breast cancer is very common and resources are inevitably never as generous as we would like, I think the NHS does a very good job in difficult circumstances.
"I have worked my whole life and paid in to NHS and now when I need them they are failing me."
Sorry Chris, but the way to look at it is 'now when I need them, they have saved my life'. Some tests take longer than others - they have to grow cultures, or something. Getting results quicker makes no difference to the outcome. I know the waiting for results is difficult, but at least you are not waiting months for treatment now. As for paying in, add up what you have contributed versus what the treatments you have received over the years have cost - you will be in for a shock. Cancer treatnents are expensive.
I mix and match between private and NHS, my insurance covers everything except chemo and the only advantage to private for me has been appointments running to time, private room and initial consultation same day as I saw GP. I pay for both NHS and private and apart from the privacy factor do not feel I have received preferential treatment over NHS patients.
On the whole, I think we receive exemplary treatment through the NHS and thank God for the system.
I have to say that I agree with Palomino - it appears to me that it is the are where you live that draws the distinction, not whether you are private or NHS.
I live in south west Scotland - and cannot fault the rreatment I have received via the NHS. I saw my GP on 31 Oct, was referred urgently to Breast Clinic - got appt for 1st Nov, had mammogram, ultrasound and biopsy on 1st and got results same day. On 7/8th Nov I was sent for bone/lung/liver scans, had mastectomy on 13th Nov, got path report, including HER2 status, 21st Nov and started chemo on 28th - the entire process taking less than a month from original diagnosis.
At the time, I was reading on here how many weeks people were waiting for results - and that made me realise just how different the various PCT's/health boards work - and made me extremely grateful to be living where I do.
To date I have had 4 x fec, 20 rads sessions and am about to start 4 x taxotere, followed by a year of herceptin. I can contact BCN and/or consultant at any time and have received tremendous support from both them and the nurses in the chemo unit. There are never more than 5 patients in the chemo unit at one time (that I have seen) and I am on first name terms with all nurses.
As I have said - I couldn't fault it at all.
Despite being treated privately I have full access to bcn and had the facility to contact chemo ward 24/7.my treatment was a bit mix n' match and I feel the only thing I would have liked that I didn't get was a sentinel node biopsy,instead it was node sampling.My friend another member of these forums was entirely NHS and had the same treatment as me,same medical teametc only diff was Neulasta and the location of the clinic.I do see the consultant every time and she sometimes sees registrar but can ask for consult.I think Chris was unlucky with her original surgeon who sounds appalling.HER2 results take a very long time here but I was told that you cant have Herceptin until after chemo and I couldnt have chemo till after surgery.Once I was known to be er/pr neg chemo was inevitable so the wait didnt matter.I had the results after my second chemo and they were negative.
I would just like to add that when I was studying for a degree in health sciences, one of the subjects was about accessing NHS treatments. In the discussion it was apparent that it was what you knew ie how the system works, who to contact, your rights, how to complain etc etc that was the most important issue in accessing the best treatment, not just money. And it all starts with your GP - a good GP who fights your corner for you is worth their weight in gold, not to mention private health care costs!!
What this seems to highlight is that it is not simply NHS vs private that makes the difference, but where we live. I'm glad to be where I am (Cambridgeshire) but nobody in this country should be in a position to wonder if they'd be treated differently 50 miles away, whether NHS or not.
I have had all my treatment on the NHS. I was referred and seen within 14 days, had official diagnosis 2 weeks later after a core biopsy, surgery 1 week later, results 10 days later, then oncology appt 2 weeks after that. I saw the oncologist last week who was a registrar not a consultant but was nonetheless very approachable and got a planning appointment on Thursday for radiotherapy. All in all, I think I did very well in the system. I am sure I would have been able to choose my own consultant etc if able to go privately, but as I don't know one from another, I was happy to have one chosen for me. Anyway, in my experience, the registrars often are younger and more in tune with the latest research than some of the much older consultants. I also got direct access to the oncologists secretary (I asked him for a direct number and he gave me it) who was brilliant. She got my appointment request sent through immediately and I received an appointment less than 48hrs after speaking with her. I guess I am just lucky??
its so interesting to read all your comments. It would be interesting if they did a survey of survival rates for NHS v Private.
I am being treated in a Shropshire for NHS treatment.
saw GP wed, appointment at hospital next Tuesday (9 days), had needle biopsy, mammogram, scan.
had lumpectomy 10 days later by local anaesthetic, received results 2 weeks later that I have BC. was booked in for following week to have WLE and nodes but cancelled this and went to a better hospital.
5 weeks after the lumpectomy I received the hormonal results after I phoned to find out if any results were back.
I am told by the first hospital that it will be about a further 3 weeks before I receive results of her2.
my new hospital, Birmingham are to do the nodes and WLE 11 April.
I have worked my whole life and paid in to NHS and now when I need them they are failing me.
My sister and i share the 'distinction' of being diagnosed with invasive lobular cancer 12 months apart -as she was going back to work I was sitting in the hosp waiting to see the consultant. she had private health insurance, i don't.
the differences and similarities so far - my sis was seen by a consultant 8 days afer consultng GP, i was seen on day 13. hers was evident on mammogram. Mine was not on mammogram or ultrasound but confirmed by core biopsy. All my tests were done on the same day and i had the results 2 days later, confirming cancer. Apparently i have dense breast tissue (LOL I still find that funny) so i then had an MRI. That took 2 weeks.
we were both given the same treatment path - mastectomy - both rightsided, chemo and radio.
She had a private bedroom/bathroom post op. i shared a room with 4 other women (they were gynae and tethered by catheters) so effectively the bathroom was mine. we both left hospital after 2 nights.
my niece has seen her mother's wound scar and mine. notwithstanding all the stuff about how we heal differently... my niece says wow auntie J... that's like just a line - no lumpy stuff like mum has. My sis has dog ears. hmmm ok...luck of the draw on surgeon skills.
i have had access to breast care nurses and she has not. they are invaluable.
despite paying she had a 'grim' oncologist who gave her life chances and made her feel they were not good.. i took pot luck and got prof grieve who tells me his role is to make sure i die of old age.
She has had to buy everything from prosthesis to wig with no help. I have had support and help and subsidised stuff.
She had lovely nurses during chemo and routinely had bone marrow booster drugs. i have lovely nurses - no boosting drugs but i am on a trial so i will be doing different drugs from her soon. Even with her booster drugs i am (so far) doing better than she did in terms of bloods and no delays. this may be me doing cell thing better naturally but i think it may also be psychological in terms of support?
Nobody from the hosp ever rang her post op/treatments. I had 3 calls in 12 days post op from breast care nurse and the oncology breast care nurse rings me roundabout day 10 post chemo.
i may be lucky in where i live but i think i am receiving a better service than my sis and she saved a whole 10 days overall.
the main difference where my sister does better than me is that she does have a husband who loves her. i don't. She is a fortunate woman.
my sis always just walked in and saw whoever/had treatment, i have had to wait. i always expected to wait and take a book
Be thankful we have only a two-tier system. There are people in other parts of the world who have a considerably worse time dealing with cancer, or indeed any serous illness. As for what one reads about the problems in the US, there are times when one is left speechless.
The NHS seems great when dealing with the emergencies, and tied up in bureaucracy for anything else. Deal with that and it is very probable that those who opt out and go private through anger and frustration at the delays and procrastinations would be perfectly happy to stop paying private fees.
As to the large scale clinics - if they stopped closing all the smaller district hospitals, the clinics would be smaller in each and less stressful for staff and patients.
...and sorry, to add to Kelley's comments, I was told I can ring them (the chemo suite in the BUPA hospital) 24/7 and should contact them rather than my GP about absolutely any medical concern during my treatment. They will supply the name of a wig salon and also someone who would come to the house with a selection. I don't know the position regarding support groups but don't feel that is for me at the moment so I haven't asked.
I just wanted to add that I visited the chemo suite today - this is at a different BUPA hospital from the one where my routine appts and SLN biopsy were done - and the nurse said, "The big difference here is we have 15 chemo patients each day and the NHS unit has about 50. It means you and the team get to know each other pretty well, and that you can have all the time and privacy you want".
This is the first real difference that has been set out for me in so many words. Oh, and I don't think I get an NHS voucher towards a wig.
I had my op privately as my husband was covered through work but it still took over 4 weeks to get the path results following my mastectomy. I was offered a different chemo regime which hadn't been approved by our PCT. The down side of having private treatment is the lack of support. I could only ring the chemo ward in Bupa during office ours 4 days a week whereas i think NHS patients could ring at any time. There was a BCN but only one so there was no-one when she was off work sick for quite a long time. I was expected to by my own prosthesis and had no help with the wig issue and had to sort it all out myself. It was also very isolating as i never met anyone else with breast cancer until i went to a BCC living with cancer course. Everybody there seemed to know each other!
So there are 2 sides to it.
I was referred straight away by my GP, and seen within 2 weeks, but diagnosis took 6 months as the consultant told me to stop hrt and go back in a couple of months. My lump did not show up on anything and the fna was inconclusive. Eventually after more tests and core biopses the dx was ilc. I cannot fault the treatment after that despite having to pay for an MRI scan because the NHS could not do one quickly enough. Overall I am happy with the NHS.
Pinkdove - is is easy to swap between private and NHS? I have had all my treatment to date privately but I guess there will come a point when I eaither leave work or they refuse to pay for anything - do you just then get signed up as an NHS patient? I assuming that's the case but would like to know!
Although it took quite a while to first get into the NHS system I can't fault my hospital. When I have my CT scans (3 monthly) my oncologist rings me within a couple of days, I've even had her tell me on the day sometimes after she's seen the consultant radiologist but I think that says far more about her as an individual rather than it being the norm as she's aware that it raises anxiety.
I went privately 3.5 years ago when I was diagnosed with secondaries purely for the scans as the MRI scan appointment was going to take quite a bit of time through the NHS but as soon as I knew the results I went straight back into the NHS and they have been brilliant. It's not a level playing field across the country as it should be.
I too think the differences are shocking.I was dx through routine followup to mammo.This was NHS and there were about 4 days wait between tests and return for results.Not clear after repeat mammo and FNA so had to go back following week for core biopsy.Another week to wait for results.At that consult[not before ]I mentoned I had limited private health cover for cancer.The surgeon said,''In that case I can give you a date for surgery now''.That was 3 weeks on.The differences it has made are that I had a private room and elaborate food menu;the consultant did the op himself;a consultant anaesthetist did the general and the surgeon came to my room a few hours after sugery and told me the size[2cm]and grade of the lump.He said the nodes looked healthy[sample of 6]but I had to see him in a week for final diagnosis.It was a further week before I saw the onc.I've always felt this was no quicker than it would have been on NHS.I know my chemo was not then available on NHS but it is now.I was given Neulasta as a precaution against neutropenia and that is not readily available on NHS although GCSF injections are.Although my followups are all in a pleasant private clinic,and I got followup mammo results in an hour I dont feel there was much benefit beyond the chemo[which was a lot].My cover only lasts 2 years so after October I will opt to pay for yearly mammos so I can get results without waiting.I am in same PCT as Chris99.I think bc treatment is very much a postcode lottery and in hindsight I should have shopped around a little as Chris has done.Ah well,onwards and upwards.Love Valxx
This is a tricky one to answer in just one posting and i am sure others will have far more knowledge of it than me.
However i do think we live in a society which has a two tier system in place in a lot of areas not just health.
One of the areas that annoys me is education, as we struggle to help kids thorugh uni and they will leave with Â£20,000 debts. Many of their friends parents can pay it all for them. Private schools have smaller classes and far more opportunities than state schools too.
I do think Money talks.
I have been treated quite well on the NHS during my BC journey, However waiting for results has not been one of them. My freind goes private and her consultant phones her the same evening with the results where as i have had to wait 2-3 weeks for some of mine.
Another friend has been seen by a consultant and operated on the same week, not with BC i may add.
The area that annoys me most is where certain drugs are not available unless you can pay, I hope i never get to that stage but feel for others who have.
I believe we are all equal and as important as each other. and should in an ideal world be treated the same regardless of money or anything else.
I think its a crazy system. The only difference going privately should make it that you have a choice of hospital and who does the treatment. It should not mean that treatment regimens are different - that is unacceptable. This two tiered system that the government keeps wanting to avoid is going to get wider and wider and depending on where you live in the healthcare lottery, there are likely to be three tiered and even four tiered systems. I don't know what the answer is, but this has got to stop. We have enough to contend with without thinking we could have better treatment if only we had the money.
I have private cover through bupa, however found a lump went to the doctors on a friday 4.00pm appointment on the monday got a call from the hospital for an appointment for the tuesday, had a scan, mammomgram and biopsy, had a call from the hospital to come in on friday and on friday was told it was cancer. I then told them I had bupa cover and wanted to know if things could be done any quicker, which they couldn't at most often its the same surgeons who operate on both bupa and NHS. I cannont fault or even knock the NHS for the speed they have worked at.
Hi i was fast tracked by my gp to nhs hospital, but when i did get my results and was told it was cancer i asked about going private and was told i would be treated exactly the same by the same staff and get exactly the same treatment!!! stayed NHS and cant really fault them, i was even made a cup of tea in bone china cups and saucers after my biopsy (they had told me it wasnt looking great though)
hi i am in bedfordshire.
i saw Dr with lump on a Mon was told i would have phone call in 48 hrs i did with an apt for the following Mon. on that Mon i had mammogram nothing showed so a biopsy and i had the results on the Fri. at Fri meeting i was given a date two weeks later for lumpectomy. i had this on Thurs and sentinel node and again the following fir i had results back. showed more spots so recommended to have mastectomy and imm reconstruction. so i was booked in three weeks later as i had a holiday abroad booked and was told to take it. otherwise it would have been sooner. i have had brilliant treatment almost too quick to get my head round it. i was in a nhs hospital that had private wards and i even got a private room for both ops that did cost 100 a night but well worth it. i am looking for private health care cover now as spoilt by private room but i have read these small private hospitals are not as trained in BC as nhs who deal with lots. anyway i want best of both worlds nhs care but private room. take care
I live in Fife and have been dealt with really quickly and efficiently on the NHS, I could not fault them. I had my first meeting with the breast clinic on a Tuesday got the results on the Thursday, a bone scan Friday, a CT scan Monday and results of scans by onc on the Tuesday (all done in a week) I started chemo the following Wedenesday so I would like to praise the NHS>
What I feel is unfair is that at the moment private patients are recommened different chemo/drugs than NHS. It is the onc that are prescribing these drugs it's just that the NHS have not rubber stamped the licensed drug, I get so annoyed to think that we are not getting the best drugs available because of NICE and the length of time they take to authorise something.
Then if you ask if you can pay for that part they tell you that that would be creating a two tier NHS system so that it's all private or all NHS. So even that part you are entitiled to free then becomes very costly in's an absolute scandal, I intend to take them on on this one from the outset, I simply refuse to take this two tier argument seriously when for years people have paid for scans to save them waiting and at the dentist, he dentist don' t suddenly charge you private for everything because you want one white filling.
I would just like to comment on Private v NHS.
I was given a 17 week waiting time for my initial hospital referral and decided that, that was too long and paid to see a woman breast specialist at another hospital. This probably, was the best Â£100 that I have ever spent. I saw her on the Friday where she did a biopsy, and by the following Wedensday I was booked into her clinic. When I paid the bill she even tried to get it cheaper for me as she knew that I didn't have cover.
On the Monday following she phoned me at work to tell me the results, I had asked her to do this, as I wanted to be in some kind of control, and the waiting for results is enough to send someone 'over the edge'. (well it was with me)
I had a lumpectomy the following Thursday and 5 days later she phoned me at home with the results. I started 25 of rads. 3/4 of the way through I felt another lump, within 1 week I had had another biopsy, results given, MRI,CT and bone scans were arranged the week after and as I got the results of the bone scan at 4.00pm on the Thursday I was on my way to hospital at 4.30pm for a mastectomy which was performed on the Friday by my surgeon who came in from her day off to do it! On the Saturday night, I got a phone call from her at 11.00pm, she was phoning from her holiday to see how I was!! This is pure dedication, and I was so lucky to have found her. (I have since heard stories from other girls who she has done exactly the same thing with) So I think that it is so important to get a good surgeon, and I have tried all the way through this terrible ordeal to still get them to treat me as an intelligent woman who has a right to know what is going on as soon as possible. It really is cruel to expect us to wait any length of time.
I sent thank you notes all the way through, just to remind them that I was still here and grateful for the way they were dealing with me.
I don't know if it was my attitude or that I was just lucky, but I am very grateful for both the NHS and Private system.
Good luck girls!
Love Debbie x
Hi Chris, I don't know where you are but I'm in Cambridgeshire, having private treatment simply because we happen to have BUPA although the NHS has an excellent reputation locally. I still had to wait a week for SLN biopsy results, had mastectomy, axillary clearance and immediate reconstruction, and got results just over two weeks after surgery. I may have had a different team of consultant surgeons working together than would have been the case with NHS treatment but they are all superb here, there is no sense that a different one would have left me less happy with the cosmetic result, and I certainly don't think there is any discernible difference in care between private and NHS here. Some of my appointments have been at a BUPA hospital but as the recon is done in a specialist plastic surgery unit the actual surgery was in the teaching hospital that both NHS and private patients go to. I can wait an hour to be seen whichever hospital I visit and the main advantage of the BUPA one is that parking is free, though it's still a nightmare finding a space!
I have just discovered from talking to others that anyone with private medical cover in my area receive results earlier than those on the NHS.
does this bother me I am furious! obviously our lives are not as important, we might have paid in for a lifetime but hey who cares.
I know of others who have had some results on the same day that I have waited 5 weeks for and have still to wait another at least 3 weeks to go for the last.