Confused? NHS or private

Hi, I have found the lump on my left breast on the 3rd of August and spent a good amount of money on Private hospitals in Turkey as I was on my summer holiday in Turkey. ( 3rd day sadly not on my last day of holiday) My remaining holiday was gone worrying if ? I was told by Turkish doctors looks like cancer but needed biopsy to confirm it.
I arrived on the 22nd of August and went to my gp same day and I was told it would take 2 weeks to arrange hospital on NHS so she suggested I should see an oncologist privately and get my biopsy done quickly for piece of mind . So I arrange an appointment same day and done my biopsy and confirmed on the on the 25th invasive ductal grade 2 .

I received a letter from nhs hospital in St Georges in Tooting for 3rd September Wednesday 10.30 and also another appointment from private hospital Park side at 11 am same day.

I was so confused which one to go and cancel one of them, as I don’t have a private health insurance I chose to go for NHS.

I was told to have c.t scan , cxr scan, bone scan and Live u/s by my private oncologist.

I thought for the first month my bill already piled up over 2k I thought I could go on NHS and start my treatment there and have all my test done. So cancelled the private appointment went for NHS.

When I met the nurse on breast unit in the hospital, she told me we do not do any of these tests here as they are not necessary and you will not have these done here .
I panicked and upset not being able to see a oncologist just a nurse telling me we will arrange your surgery , she told me they used to do these tests before and they always appear normal so they stop doing them.

I rushed back to private hospital and asked for my appointment back as I was late about 20 minutes but he couldn’t see me. He did arrange my c.t scan for today and done it and Friday arranged my bone scan. I have a new appointment with him on the 9th now. I am happy although I have no idea how much bill I will receive next week.

Question is : did any of you had your test done on NHS or did you have to have all your test and treatments done privately?

Question 2 is ; is it true they do not offer any of these test on NHS ?

Question 3 : Does life and critical illness insurance help pays some of the hospital expenses? ( called them but not very helpfull I am still waiting for the claim form a week is gone since)

I am sorry for asking all these as I have not seen on this forum no one is talking about hospital expenses , I know this is not time to think about money but we all don’t have private health insurances unfortunately. I will have to ask for a loan to pay my expenses.

Thank you
Gul

Hi Gul

Sorry you have had to join us. I have just had my lumpectomy (Tues) after being diagnosed 5/8. I had private insurance but to be honest, I am still waiting for the form to say go ahead, after paying £40 for a Dr letter confirming my condition and now a further £20 as they need more information. I have had the op and I had three biopsies, and mri scan and x-rays done at my NHS hospital with no worries at all. I have been told I can have chemo privately if I choose, but to be honest I am going to stick with the NHS, they have been brilliant and have it all under control with regular updates, and you know where you are for the next 5 yrs with follow-up appointments. As for the tamoxifen I have to have, I don’t know if I can get that privately or not yet, but I will find out.

When I go get my paperwork back from the insurance company I will tell them I have already had the op. As for the costs - I am afraid I do not know as we pay monthly for ours. It will be costly though, I know MRI exams are very expensive.

Good luck with everything, you will find lots of support on here and I am sure one of the other ladies will be able to breakdown costs for you.
Much love
Netty xxx

Hi Gul,
sorry you have had to join us, but this is a great place to not only ask questions, but also get emotional support. The vast majority of us have or had breast cancer and can understand your fears, and hopefully support you. Others have close family or friends with this disease.

From my own experieince, the normal procedure in an NHS breast care centre is to have the 3 step procedure: a mammogram, an ultrasound and a core biopsy. I had these tests on recall after a regular 3 yrly mammo. It was quite evident, even from the original mammo at a travelling unit, that I had a malignant tumour as the mass was “spiculated” around the edges, like a starburst. I was told immediately I had cancer, was introduced to my breast care nurse, along with the Director of the clinic, who is a Radiologist, They already had a date for surgery, two weeks hence. I had a Wide Local Excision (lumpectomy) and 8 sample lymph nodes removed. Two nodes were malignant, so I went back for total axillary removal, one month later, when my scars had healed. They found another cancerous node, so I was then offered chemotherapy, and radiotherapy, which I had. I had invasive ductal cancer, stage and grade 2, similar to you.

I have no experience of private treatment for breast cancer, but do have a friend who had medical insurance and went privately - she didn’t see a breast care nurse, and she now she wishes she had had her surgery and radiotherapy on the NHS. I found it helped immensely to be in a ward with other women with breast cancer, as we could share our feelings wih each other.

As far as other tests go, such as CT scan of bones, liver and chest, these I believe are only done if there is “spread” to the lymph nodes or vascular invasion, to determine if the lungs, liver or bones are affected. I had these as a matter of course, as I started chemotherapy, thankfully all clear. When you go privately, you can have any test, within reason, because you are paying, just as they do in the United States.

I am afraid I can’t help with your 3rd question, as I have never had critical illness insurance, nor life insurance, as I have had Crohn’s disease for 38 yrs and have always been refused personal insurance. I am sure other members will be along shortly to help you on that score. I am not sure, but I think they only pay out when you are stage 4, terminal, which means the cancer has metastasised to other organs.

It would be unusual to see an Oncologist before surgery, unless the tumour is very large, when chemotherapy is often used before surgery to reduce the size, and the surgeon able to do a WLE rather than a mastectomy.

From my own experience, the most important pieces of information I received was the two pathology reports, one done after the WLE, the 2nd after the total axillary removal. This details all the important factors about your specific tumour, such as grade,stage, oestrogen and progesterone, HER2 receptor status, and this will determine future treatment. It will seem like a foreign language at first, which I was baffled with, as my surgeon did not discuss it with me - I found out what the acronyms meant by coming onto this forum, where people were very patient in explaining what I did not understand.

I do hope you have a date for surgery soon, and it all goes well. No question is too trivial or silly to ask on this forum - we have all been there, and are grateful for the help and support we have received.

Take care,
Liz.

Hi gul

if you proceed with private treatment you are going to run up enormous bills…dont underestimate this. Some hospitals will do the baseline tests before treatment and others will not - i dont think thats the difference between private and NHS its just different. I dont know your details but surgery will be - just guessing £8 k, radio £15 k and chemo £25 k, these are just guesses but they are reasonable. if you have criticall illness cover do you want to use it on private care? maybe …but maybe not.

I think all the ladies on this site who are being treated privately are doing it through insurance policies that they have at work or their partner’s work…there can be advantages to private treatment - some polcies will pay for drugs that are not generally available but generally the advantage is treatment at a smaller (very clean! ) hospital with a consultant that you have chosen, with times that you chose , and that really is it!!!

good luck
Cathy

I’ve had great treatment from my NHS. They do not do the whole barrage of tests/scans etc unless there’s some indicator that it would help, as really early tumours can’t be picked up and it can make you worry unnecessarily.

As to critical illness, mine paid out with minimum fuss and we paid off the mortgage and still had a few grand left, which is a great feeling and take financial pressure off everything else that us bc girls have to concern ourselves with. We have another life insurance policy, but this one will only pay out if I get a ‘terminal’ diagnosis, which means expected to be gone within 12mths, so I am desparately hoping not to claim on this one. I also have income protection, which kicks in after 6mths off sick.

Good luck with surgery, and my one bit of advice is not read too far ahead on the forums, just deal with the bit of treatment that you are having now, as it all gets a bit bewildering.

Ask anything on here, someone will always help and support.

Kinden
x

May I join in here?I had private insurance limited to 2 years so now at the end.I had my op and did not see an oncologist until after my post op appt with surgeon.I was not offered scans till 1 year post surgery[I said no thanks]because no nodes or vascular invasion.Chemo and rads at NHS clinic with NHS staff and patients but ins paid.I was able to have taxotere before it was generally available for primary bc.I also got Neulasta to keep white cell count up.I will now pay myself for mammos and consultations[between £100and£200 a time]but any future treatment will have to be NHS.I have been told I can have scans whenever the onc and I feel I have worrying symptoms.I have friends whose current NHS treatment is exactly like my private,we even share a bcn.I would never consider paying for scans or surgery the costs could be astronomical and I wouldnt really miss the private room,the menuetc though the en suite was a blessing.love Vx

Hi

I went private but my consultant didn’t even mention other tests, they only did the biopsy and then a mastectomy.

When I was told it was cancer the consultant said he could do the mastectomy 4 days later, I was in shock and agreed. I asked about immediate reconstruction and he said people don’t do it these days. If I had gone on the NHS I believe the treatment would have been the same but a bit slower, but it would have given me a change to absorb the info and do some research, (and find out that immediate recons are normal). Also I was not given a breast nurse.

My private medical also won’t cover the full costs of the recon, so I am thinking about going on the NHS, but I am very confused in my mind about it all at the moment

My tamoxafin is on a NHS prescription

Whatever decsion you come to should be OK, the NHS is very good, just a bit slower. Good luck in your decision

Deb

XX

i went privately for initial consultation because my GP took two years plus to think I needed to see someone - and then just for reassurance. immediately i was seen the surgeon suspected CA breast. I transferred to the NHS immediately, had biopsies the next day, diag confirmed 3 days later, bone scan, ct and MRI. Surgery planned for the 8th I intend to have my treatment on the NHS because with cancer care I believe the best services to be available in the cancer centres rather than private provision. I may be proved wrong but given the amount of money invested in cancer services over the last few years on can only hope. Di

For diagnosis and initial treatment, the NHS can be as good as you will get - depending on the PCT, its targets and its spending. Most cancer centres are efficient; some have problems.

For ongoing or chronic treatment, the private sector advantage is that you see the consultant of choice and have consistency of care. The continual turnover of staff in large hospitals can mean you do not see the same person twice.

I really can’t complain about the NHS they have been really good.I think sometimes it depends on your post code,and what hospital targets are.I’m with stockport and under Manchesters Christies cancer unit.I waited 3dys to see specialist went in after dx for WLE 5dys later got complete results 11dys later.started rads 5wks after WLE. Hope everything goes ok for you xxx

Hi Gul,
I am being treated privately through my husbands work policy, and I def glad that I not paying the bills they are mega!!!. I was dx last July 17mm grade 3 ductal, and had 8 chemo first then ops then rads and am now on Tamoxifen. From the begining even before if known in lymphs they said they dont do scans as standard practise, there are other threads on here that say the same. Apparently show up lots of false positives and other abnormalitys more than cancer. Seems to be quite common now to wait and scan later if any signs of probs. I have now finished treatment and had 1/16 nodes affected and I recently asked again aboout scans and I am ok with not having one and I am geting on with my life now and feeling fine.
I have had friends treated on the NHS who have had loads of scans and checks and others that havent, I think it really depends on area and consultants ideas.

Can you explain financial concern and your worries and ask oncologist that you are seeing privately to move onto his NHS list.

Maybe you can get another app for NHS and go see specialist to talk through your worries. I am sure that breast nurse will be right though because it seems fairly usual at lots of centres.

As you are worried maybe you could ask for second opinion on nhs where do you live? you maybe you could go to the Marsden which is a centre for excellence fro breast cancer, or ring them up for advice.

Whatever you decide you need to try and get sorted but dont get yourself in debt, I sure like for most ladies on here the NHS is good.

Take care,
Let us know how you get on
Dawn X

This is an interesting post as i could have been like you. I phoned my local private hosp when i was referred about the lump i had. Rather suprisingly the consulatants secretary told me i would be better waiting the 2 days longer to be seen at the NHS hosp unless i had private healthcare and could see through ‘everything’ on it.
I have a few quibbles about my care ie mainly long waits at the clinics, long waits for results however i have been given scans whenever they have thought them necessary.
I have a friend who has paid for all her treatment and i do find the consultant is so much more person with her, phoning her home same day with results. Money does ‘talk’ unfortunately, however unless your rolling rich which most of us are not i think the NHS is adequate in what it does for BC patients.
Walton the speed of your Dx and treatment is far more rapid than here in Liverpool at the LMC.
Would you mind if i used your experience when i attend a meeting with the higher archy at the hosp in Oct to discuss these issues?

Rx

Hi to you all, thank you so much for all the info really helped , I had my c.t scan yesterday and received the invoice this morning they were pretty quick with that. (£1250) I am having my bone scan tomorrow morning 11 am and no idea of the cost as I did not ask.
After reading all your comments I have decided to go with NHS ( also I don’t think I could even if I wanted) just wait to see the results and discuss the treatment with oncologist first and I will ask him to reffer me to charring cross hospital in Fulham. My breast Surgeon when he first confirmed I was invasive grade 2 bc he did told me if I wanted he would do my operation on NHS in Charring Cross as he also worked there, also the oncologist from my private hospital. So this mean I will carry on seeing the same doctors instead of private see them on NHS seems good deal to me.
As my lump is 4cm I need chemo first and radiotherapy and after surgery if I remember right. Also he said many glands but appear all normal and lymph node no cancer , it sounds good but I guess more test needed to confirm if not spread.

Thank you again to you all, I am finding it hard at the moment to reply each messages but I will soon get used to it. I can not believe time goes so quickly when you are searching and learning all these new medications and what they are , how it works and all very very tiring, I must go and get some sleep and I hope no nightmares tonight.

Sweet dreams to you all and Love
Gul

Can I just add to this thread for anyone thinking of going privately and self-funding,very often the charges are negociable.The costs that insurance companies pay are often much higher!

Hi liver be my guest, I have really been shocked at some of the waiting time ppl have been waiting.
I do so wish that they would do mammograms at an early age,as we all know the quicker this disease is caught the easier it is to get rid of.
I know it mainly comes down to money but hey it must cost a fortune treating all these ppl with bc,there are so many between the ages of 35 and 50,which is when You have your first mammogram on NHS, at 50 I am lucky that I work for a company not just any company a M&S company they send all the women from the age of 40.
to a private clinic for a mammogram every 2yrs.if anything is found they then pass you over to NHS,The one I work in has approx 500 women,and we never go 2yrs without a few being dx,and there are always ppl under the age of 50.if they didn’t get them they would probably not know till They had their first one done at 50.I have been really lucky that mine was caught as the lump was only 6mm and clear lymphs,so only rads and arimidexfor 5yrs,i was on HRT for 5yrs and it was hormonal.
Well the rant is out of my system now,afraid you got a bit more than you bargained for SORRY,Hope everything goes ok for you allxxxxx

I have health insurance through my work and my GP advised to use this for a quick referral at the start. I saw consultant who confirmed the lump was not a cyst and ordered a mammo and ultrasound then a core biopsy. I had surgery to remove tumour and node sampling - this was done private. He did not think it necessary to do MRI, bone scan etc as there was no indication that there was a problem anywhere else. Had my nodes been affected he may hvae investigated further. I did not see an oncologist until after my post-op check-up with my surgeon.

After seeing my surgeon a week after the operation he strongly advised that I have my oncology treatment under the NHS as they can provide a bigger multi-disciplinary team. I have had radiotherapy under the NHS and have attended an NHS oncology clinic for the past 6 months.

I did have a bone scan in July but this was ordered by my GP as I was suffering back-ache and it is procedure that anyone who’s had a breast malignancy and suffers back pain has to be referred for a bone scan.

I think in come cases the private hospitals can go over board on tests and scans etc. The NHS will not order certain tests as standard but no oncology unit will fail to order a test that is necessary. Please do not dig yourself into a huge pit of debt with private tests, it will just be one more thing for you to have to deal with.

Hi
Just to add my twopenny worth!

I had a routine mamogram in June, had recall on the 4th July - 10 days after, for second mamogram, ultrasound and biopsy, appointment with the consultant on 11th and planned surgery for 28th July. Follow up 10 days later for results - 6th August. Appointment with Oncologist 19th August to plan treatment. I could not fault the NHS for the speed of sorting out my BC. As I am being seen at Christies Hospital in Manchester I would hope that IF they thought that bone scans, CT csans etc were needed they would do them.

I would query if all the tests requested by your private chap were needed before you had a full and proper diagnosis - or just a money maker!

Angela

I too have to add a word here. I was just at a point of wondering whether I ought to take out private insurance when I was diagnosed a few weeks ago. And I am so glad I have stayed with the NHS. I have had prompt, caring treatment and am having choice about everything, plus sensible discussions with surgeons, bcns, anaesthetists etc.All my scans have been organised. The other thing I was so glad about last week was when I had my re-excision, I was in a small bay with a little group of women and we were such a support to each other, I would so have hated being in a very lovely - but lonely - private room. I’m at Guys myself, but I think Georges has a very good reputation for ca care. There’s also the Marsden not far away.

Good luck with whatever you decide to do xxxx.

Hi all , thank you for all the comments , really helped , I am just getting all my initial tests and speeding a bit with private hospital and hopefully on Tuesday when I see the onc will let me know with what type of treatments I will need and which hospital he will reffer me to. I think I would like to go for either Marsden or Charing cross hospital. Do any of you had treatments in either of these hospitals and any comment will be appreciated…

Thank you

Gul

Hi Gul, I would think that if you had the choice of the Marsden you couldn’t do much better - I know people who have been treated there and hear nothing but praise. I don’t know Charing X or anyone who has been treated there. Good luck on Tuesday xxxx.