Please.... I don't know what to do

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Hi everybody, I’m not sure how to start this, but I’ll try anyway…
My mother recently got diagnosed breast cancer. She went to her doctor the first of october after noticing a lump in her breast, went to a mammography the 8th and finally got a biopsy two days ago. Is it by the way normal to have to wait an entire week for biopsy results?
I guess what I’m asking is where do I get the best treatment in the world ( price regardless ) ? We live in Denmark, and I have little trust of our deteorating public health care system, and I’m not prepared to gamble in this case. The public health care has scheduled an operation the 31st of october, but we receive the results from the biopsy on the 22nd, and I’m afraid to wait nine days, especially if the tests from the lab come back negative. Should I book a surgery on some private hospital for maybe the 23rd or 24th, and where? Will hospitals, even private ones, admit patients from abroad practically overnight? I was looking through the thread “i want the best care anywhere in world. i will sell my house to pay for it” looking for references. So far two I am seriously considering contacting is Marsden Hospital and Sloan Kettering. But I’m so confused… Without a full diagnose I’m not sure how easy it will be, but isn’t there a hospital or a clinic considered the absolute “best” in the world? I’m terrified of this, and the worst part of this as a relative is the uncertainty and the feeling of being helpless… I’m sorry by the way if this thread has been a little bit uncoherent, I’m just writing from the top of my head, still in shock I guess…
Any information will be kindly and gratefully accepted.

Kind regards, the despairing son

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Hi Peter,

First all…don’t despair, as you put it. I’m sure it’s a far from desperate situation albeit an incredible shock to you both. Just try and calm down and take things one step at a time.

I can’t make any comment about the healthcare system where you are but it’s totally natural to want the best for your mum. I waited a week for the results of my biopsy, some people wait less time…it varies but it’s a dreadful time…I understand. I was treated in this country and went to my hospital where I live so I can’t help you with your question about going elsewhere.

I just wanted to reply to you and try and get you to slow down…try not to panic. I’m sure others on here will be able to help you fully but as I’m said, I’m sure all is not lost. There are many of us here to tell the tale, all with different dx and outlooks.

Sheana x

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I think your reactions are entirely normal…i know when my parents were diagnosed with their cancers, I would have done anything to help them, whatever the cost.My own diagnosis was confirmed a week after the biopsy, and that seems to be quite normal, as they need that time to make sure the diagnosis is 100% certain.Now, I guess the thing to ask is, what does your mum want to do?Does she trust your health system?Would she want to travel anywhere else for treatment, or would she rather be in her own surroundings?In the end,no matter how much this hurts you, this is her illness and she must be the one to make those choices (I learned this with dad.He was always telling me off for trying to move him somewhere else, or to go for new treatments!) I am having my operation next month (which will be two whole months after diagnosis, but I am told this will not affect the outcome, as my tumour is ‘only’ 2cm and a grade 1,borderline 2 , with no apparant spread into the lymph nodes).I am being treated now by Mr Richard Sutton at Bath Royal United Hospital, he also works at Bath Clinic and he has a wonderful reputation.I was told if he couldn’t do my op, then I could go to Frenchay hospital in Bristol, where they have an ‘enviable record of treatment’.Having said that, so far, Bath has been wonderful, very caring and i can telephone them at any time with any worries.Good luck with all of this, i know it’s a terrible shock for all of you…and my family are exactly the same as yours, I have daughters telling me they will raise funds for me to go anywhere I want, but I am quite happy where I am, though of course, I’d rather not be going anywhere!

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Hi Peter

I am sorry to hear about your mother and it must be a big shock for you. Like Sheana says don’t rush into anything. Wait until you have the results from the biopsy. Waiting a few days will not make any difference to your mother’s health at all. Get the results then decide what to do from there. I don’t know how the private healthcare system works here in terms of getting a patient in quickly, but once you know more about your mother’s condition, you will be able to communicate with hospitals, if that’s what you want. I don’t anything about the healthcare system in Denmark but the survival rates for breast cancer are actually slightly higher than in the UK.

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I waited six months for my diagnosis and it made no difference to my prognosis, as my lump even after six months was virtually the same - the important factors at diagnosis are how big the tumour is, what grade it is and any evidence it is on the move as measured by cancer cells in any lymph nodes in the armpit.

despite the appalling delays in my case, my tumour was small, it hadn’t gone to my lymph nodes and it was grade 1 - the best. At the time I expected to drop dead immediately of course, but here I am five years later.

What a surprise

Mole

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Hi Peter
I am sorry to hear of your mothers diagnosis. I agree totally with Cathy about the survival statisitcs for your country. Of course we all want the absolute best when any of us or our loved one’s are diagnosed. The treatment for primary breast cancer is a well troden path and treatment protocols are pretty standard anywhere in the devloped world so there is a good chance that even if you did come over to the UK to the Marsden she would receive the same drugs as you woud get back home and you have all the implications of living far away from you family and support networks during the treatment period (or having to spend alot of time travelling backwards and forwards). Like the others say, I wouldn’t rush into anything just yet. No harm in finding out all your options but maybe wait until you have her results and you know what you’re dealing with and then make a decision.
Good Luck

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Hi Peter

I just wanted to ask, why do you believe the health care system in Denmark is not good? I am sure your surgeons are as good as ours and as Eal69eal says, the drugs are likely to be the same ones we have. Having “good” treatment for a disease like Breast Cancer is much more than just the surgery and drugs. It is about your mother’s total wellbeing, which includes being in a hospital where she feels comfortable, where there are no language or cultural barriers and where her friends and family are close by. All these things go towards “good” care too.

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Hi pete
I had a mamogramme at the end of June, Repeat mamo ultra sound and biopsy on 4th July, results 11 July and surgery 28th July.Now having radiotherapy at The Christie, Manchester UK. As others have said weeks wont make a differnce.You mother may well need the time to get used to the fact that she has cancer, and to get her head round it.

fingers crossed for you both

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Hi Peter

Take a deep breath.It is completely normal to wait 7-10 days for biopsy results,this is standard.I was diagnosed with breast cancer June 2007 (my third primary cancer in 8 years and I am only 38).The reason I tell you this is that even is your mother is diagnosed it doesn’t mean she will die,caught early she can live a full life.It is easy to say you will sell everything to help your mother ,however you have to face reality also.I personally went privately to Ross Hall (Glasgow) for my lumpectomy(tumour removal) as I had the Health Care already and why not.I have always researched my doctors in advance,both NHS and privately,as I only have one life and I am certainly not taking risks with it.What you need to remember is doctors quote on percentages,they tend not to look outside the box,therefore my advice would be ask loads of questions,ask if necessary for the requested scans,(cat and bone scans to ensure that if your mother is diagnosed
with Breast Cancer she is checked to ensure that it hasn’t spread.Never be afraid to ask the doctor loads of questions,never feel intimidated,also research what you are told,ensure that any planned treatment is the correct treatment for your mother.Lastly Peter,a healthy mind promotes a healthy body,if you truly believe you will live,you will,always trust your instinct.

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Hi Cathy

It’s not that the health care system in Denmark isn’t good, is just slow at times. I keep reading stories of infections in the hospitals, long waits for surgery etc. I’m sure that some of the surgeons working here are just as qualified as anywhere else, it’s just the system that’s not working properly. For instance a friend of the family got prostate cancer, and while he was being treated here at two different hospitals (one for chemo and one for something else I think) “they” managed to lose his medical journals two times. This friend of ours sadly passed away, and I can’t help but sit back and think if those extra few days somehow could have been critical. Probably not, but it still scares me.

Hi Eal69eal

London - Denmark is a two hours flight, and I’m only talking about the surgery itself over there. I think chemotherapy would be the same almost anywhere in the world, so unless they have some different medicine in the UK I see no reason to undergo that part of the treatment over there. Also the language barrier would be no problem as we all speak english fluently. Her close family including myself would of course travel with her and support her.

When I wrote the thread I was in a quite emotional state, I apologize if I didn’t explain it properly. The thing my mother ( and me for that matter ) needs the most at the moment is for some doctor to look at her, go “that ? we see that all the time, we’ll have you well in six months”. But for now it’s a long 5 day wait to get the biopsy results. I agree that it is her choice where she wants to have the surgery, but she is also still a bit shocked, and can’t really cope with looking at options for hospitals and treatments. I just want to be able to give her some options, and some really good ones too, when she gets those results. I mentioned in the beginning of the tread that my mother had got an scheduled operation from the public health care on the 31st of october, the thing is that she was actually scheduled for a biopsy on the 28th. It was me who phoned a private hospital to get a biopsy almost two weeks before we could get an appointment with the public health care ( insurance covered it anyway, although they didn’t tell us that it was an option on the public hospital ). The question im asking is, how can they schedule an operation three days after the biopsy tests are taken? Even if they could get the results back in three days, different surgeons should/would be needed for different diagnostics right? These surgeons must have some sort of schedule, so it surprises me that no matter what the diagnose is she would be on the operating table 3 days later. Does this sound weird to anyone but me?

I really appreciate the quick response, thank you for this. Must admit that I hadn’t expected 8 comments in 24 hours. I just want to let you know that this site for me has been an invaluable help so far, and I’m sure it will be in the future as well. Even though i’m writing from Denmark all that I read here about your experiences with the NHS is useful information for me as well, for comparing to danish standards and to learn more about treatments in general.

Kind regards the hopeful son

edit: I just realised that I probably posted this in the wrong forum, probably should have been posted in the “Family, partners and friends” forum. Sorry about that…

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Hi Peter,

Like you, I wanted to be treated at the “best” hospital I could find, when I was diagnosed with a 2 cm, stage and grade 2 invasive ductal tumour, but having got my head around it, realised that the two dedicated cancer hospitals in England (the Royal Marsden in London and Christie’s in Manchester) are some 5-6 hours drive away from where I live in Cornwall, and I needed to be near my home. As it turned out, my hospital in Plymouth, was at that time 2003, one of only 6 Breast Care Centres of Excellence in England and my treatment (2 surgeries, chemo and radiotherapy) was exemplary.

As for the time line, I had the 3 step procedure (mammo,ultrasound and core biopsy) on a Monday and was called in for the results the following Friday. The surgeon already had a date for the Wide Local Excision and sample node removal, in 7 days’ time. I had already booked a 2 week holiday to visit friends in Florida and the surgeon advised me to go ahead with it as a few weeks would make no difference to my prognosis. In the event, I decided to cancel my trip and had the surgery as initially proposed.

All my treatment was on our socialised National Health Service, and indeed was far better than any private hospital, as we are assigned a Breast Care Nurse, who is available at the end of the phone for any queries etc. Private hospitals here do not offer this facility, as far as I am aware.

One thing I would mention is that your mother obtains a copy of the pathology reports - these detail all the facts about the tumour; stage,grade,size, lymph or vascular invasion etc. and are probably the most important pieces of information you will get. I found them daunting at first, like reading Japanese, but with the help of the ladies on this forum, and Google, I finally understood the new bc language.

Like the other posters, we do hope your mother’s diagnosis is not dire…please know we are here to answer any questions, and offer emotional support.

Your mother is very fortunate to have such a caring son who can take the time to research her problem.

Take care,
Liz.

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I’d say there’s no point in panicking. I had the lump out as none of my tests showed cancer. When the lump was analysed I had two kinds of breast cancer, one of which DCIS is preinvasive so relatively harmless, however because of it I had to have a further operation. Surgeons follow guidelines for treatment in the UK and I imagine they do that in Denmark too. My breast cancer was very rare which may have made it more difficult to detect, a six month delay in diagnosis is unusual but anyway here I am 5 years on so there’s a certain amount of luck in it.

You could look at survival rates when choosing where to have treatment - the UK doesn’t have a particularly great record on breast cancer, Denmark may well be better. The main reason here is put down to women not going early enough to their doctors, as 80% of tumours are detected by women themselves. Some areas are worse than others for death rates and they are the poorer areas of the UK. Affluent women get breast cancer more often but they are more likely to survive it. I was quite keen on the USA but you can only get good treatment there if you have health insurance. I had all my treatment on the NHS.

Mole

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Hi Pater
I went for my ultra sound and biopsy on 10th July, I also had to wait 1 week for the results, it was the longest & hardest week of my life, i just tried to keep myself so busy, when i went back fior the results the surgeon, who was so nice and answered all my questions, told me he could operate early August, I was totally shocked and told him no no no, i’m free tomorrow, he assured me that it would make no difference to my cancer grade 2 DCIS, But my breast care nurse said she would phone around other centres and see if she could get me an earlier date, she found me 1 for a week earlier than planned surgery but with a different surgeon, so i decided to go with the initial date of 6th Aug, I had a masectomy and after surgery i felt really good with only minimum discomfort, all i needee was paracetamol. I did have to go back in 3 weeks later for a node clearance as my cancer had spread, i had much more pain with after this surgery, but doing lots of physio and things are improving, I started my chemo yesterday.
The thing with this illness is it’s out of our control but i have found that the people on here are so informative and i think we all would agree that staying positive and having fantastic support does help.
I have had my treatment in North Wales, my sister had her treatment in Glasgow 8 years ago, and she is doing fantastic
Best wishes and hugs to you and your Mum,
Shirl

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Hi Peter and everyone else who has responded - I am envious that most people only had to wait a week for their biopsy results as I had my biopsies done on the Monday (having been cancelled from a clinic the weds before) and because the team were concerned I could only see the Consultant for results - since she was off the following week I had to wait nearly 2 1/2 weeks (from 28 July to 13 August) and that was a very difficult time as I have a little knowledge and some intuition. I had further long waits to see the Consultant again and when seen 27 August my surgery was booked for the first available date - 12 September - 8 weeks after I went to the GP. Therefore, you can be sure that your Mother is getting prompt treatment in terms of the biopsy results. 5 days is still a long andstressful time but at least you will have the results and can make the right decision for you both at that time. Hope it all goes well for you and that your Mother gets her surgery and treatment promptly by whichever appropriate route

Tanya

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del

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Hi Peter

Your comment about Danish hospitals being dirty, having to wait a long time made me smile as you could be talking about our hospitals in the UK! We have huge problems here with hospital acquired infections, but it does seem to be getting better. As for the waiting times, it depends on what you have wrong. Breast cancer is usually done fairly quickly.

I do think it is strange that your mother will have a biopsy and then scheduled for surgery three days later. As you say, it doesn’t give anyone the time to plan treatment correctly as surely they need to see what exactly is wrong with her before deciding what type of operation she has.

I am sure that in Denmark, as in the UK, there are Centres of Excellence for breast cancer, where the surgeons are expert in breast disease. In our country, there is a website called Dr Foster (if you google Dr Foster you will find this). This gives details for each hospital stating how many breast operations they do each year etc. Obviously, the more operations a surgical team do, the more experienced and competent they are. As others have said, the Marsden in London and Christies in Manchester are hospitals dedicated to cancer treatments only and have some excellent surgeons. I am sure there must be similiar types of hospitals thoughout Europe?

Cathy

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Hi Peter,
what a wonderful son you are - your mother must be very proud of you. First of all, I am sure the treatment in Denmark is comparable to all other countries - this is not a new disease, sadly it has been around for many many years so they will know what they are doing. I understand that you want the very best for your mother and gut reaction is to go private but really, in my opinion there is no need to - in lots of areas in the UK the NHS surgeon is the same surgeon who does ops under private health schemes anyway (only charges a lot more) so by going private makes no difference except to your wallet. Ring up and make an appointment with the breast care team at the hospital your mother is being treated at and go and speak to them about your worrries - thats what they are there for - usually you will meet people in the waiting room who have had their ops who will be more than happy to share their experinces first hand which should put your mind at rest. I am sure your mother would prefer to stay at home rather than the added stress and worry of travelling for treatment? and if she did travel, then you would have to think about who would continue her treatment should she need any. Yes, she has been told she has cancer but it depends on what size her lump is, what type of cancer it is and wether it has spread to the lymph glands as to what she will need to have done. It may be so small she will just have the lump removed and that will be it - in which case is it worth the upheaval? Wait until you know her complete diagnosis before deciding what to do - I had to wait 2 weeks for my biopsy results and was diagnosed with a grade 3 cancer - the most aggressive type but when I moaned that I would have to miss George Michael in concert to have my mastectomy my surgeon said that to wait a month was fine and that he would only be concerned if I wanted to put it off for a couple of months so I went to the concert and then dealt with the cancer later so dont worry about a few days or weeks - just be thankful it has been found at all. Please keep in touch with us all - we are all here to help and support you and your mother and like to follow each others progress. Take good care, love and hugs to you both Clarabelle