why do some med teams not answer Q's?

This is a wonderful facility don’t get me wrong, but I am getting fed up at reading all the inconsistences with advice and treatments we read from various peeps.

I always try to compare like with like when reading threads as I know there are many types of BC and we are all different, but these are the points that I have raised with my med team and got very negative responses back.

1 - Q ‘Am I cured’? A ‘We can never say if you are cured with breast cancer’.

So why do peeps on here say thay have been told all their cancer is gone.

2 - Q ‘Will I have more tests to make sure it hasn’t spread’? A ‘No, not unless you present with pain or another lump’.

So why do some women get the whole gambit of tests as soon as a lump is found?

3 - Q ‘What are the chances of it coming back?’ A ‘Can’t say, no-one can’.

But they do, others on here are told poss statistics of likelyhood of return, spread etc, why not me? I feel like I am being kept in the dark. I have made it very clear that I want to know facts and can cope with any outcome, it’s the not knowing that freaks me out.

Am I alone in feeling like this?

Irene

hi Irene,
Sorry to hear that you havent had any helpfull feedback from your med team, i think sometimes they dont explain things in a way we can understand which can be very frustrating. Every breast cancer is different and even people who may appear to have the same type of cancer can be treated in a different way. Doctors dont like to use the word (cure), when they say the cancer is gone, it is because (at that time )the cancer has been completely excised and shows no signs of spread,however there is a chance of a reacurrance . I think the tests we are all offered depends on whether or not the cancer shows sings of having spread to the lymphnodes,or not having clear margins,or any vascular invasion which is determined through surgery and blood tests, if these are all clear normally other tests are not needed. I dont think docs can tell you the chances of a cancer comming back but they can give you survial statistics for the type of cancer you have ,but of course these are only statistics they base this on staging/grade and spread. I have a 2.3 cm lump with no nodes affected grade 3, and was given statistics for my type of cancer .Like you i want to know as much as i can , i was told by my onc that after 10 yrs with no reacurrance my chances of getting breast cancer again would be the same as anyone else so i suppose mabe then it could be classed as cured.
Hope this helps.
Best Wishes
Lindiloo

Hi Irene

As a nurse I was always taught that very few cancers can be classed as cured, just that they are in remission for want of another word, that they could recur, spread or even mets could occur . Yet, when my surgeon discussed my treatment plan he said that I WOULD BE CURED(will admit that he does not know that I come from a surgical background!), which I find incredible for someone of that level to say. I just got the impression that I was supposed to know nothing, just a member of the public! Not the only mistakes made either - hence my current complaint at the hospital!

Lynn

Luckily, or maybe not at times, I come from a strong medical family! From my first diagnosis I made it very clear to my surgeon and oncologist that I wanted the truth - no bullshit. And I have to say I got it and I respect them for it. I am a very strong tough character and I also have a very good medical knowledge having worked as my husband’s practice manager for years.
But personally I do think it depends very much on the individual. Some people do not want to know and are happy to know that they are fine and the annual checks are negative. I think most people realise and particularly with access to so much info on the web today that you can have a remission. My philosophy is live life to the full while you can and be grateful for every day until they find a cure. And remember we all have a right to see our notes if we want.

Sometimes medical staff use sloppy language (which is unforgiveable) and sometimes the patients just reinterpret what was said (so there is a discrepancy between what was actually said and what the patient thinks was said). Does that make sense?

Cancer doesn’t “come back”. It never really went away. Some people claim they have been told they are “all clear” but nobody can be told they are “all clear”, no matter how long ago they were treated.

At best, patients can be told they are in remission and there are no signs of cancer from any of the recent tests performed. But, and it is a big but, there is no such thing as a totally reliable test. It comes down to the reliability of the equipment or tests, the skill of the person interpeting the results and also taking into account other tests that can supplement or doublecheck the results. Bone scans are often doublechecked by X Rays. A suspected liver met on a CT scan might by checked with a liver ultrasound and blood liver function test. Even when the utmost care has been taken, there may be a few cancerous cells not detectable, that will multiply and cause trouble in the future.

At the Royal Marsden, during my first appointment, I was questioned about my previous profession and higher academic qualifications, so they knew I was strong on science and statistics, so all conversations thereafter were at the right level instead of being patronising and over simplified. I think more hospitals should do that, or do they worry that those who did badly academically will just feel humiliated?

Regarding tests after primary treatment, the norm is just yearly mammograms. All the talk is of local recurrence. Mestatases are not discussed or tested for. I felt let down when my bone mets were eventually diagnosed because I’d had symptoms for nearly a year but didn’t link it with breast cancer several years earlier. My GP surgery failed to make the link, just prescribed painkillers and sent me for lots of blood tests. I phoned NHS Direct when in bad pain one night and they didn’t make the link (told me to have a milky drink, a hot bath and play soothing music). Eventually I was sent to see a renal specialist and he worked it out!

Local recurrence is not an automatic stage before mets (I’ve never had it) and maybe the annual checks after primary treatment has concluded, need to be reviewed? How can they leave it to the patient to say that they need checks for possible metastases, if nobody has told them the symptoms to look out for?

You will notice from reading the forums that there are some people who are convinced they are cured and don’t want to hear scare stories (so one wonders why they still read this website) and some who want honest answers to help them plan their lives and optimise their survival chances. I can understand medical staff giving simplistic optimistic answers to the first group. The second group deserve honesty once they have insisted they really want to know and that they can handle it.

Couple of additional points to make.

I tend to agree that language has something to do with the confusion. I was told in Feb that I was clear - which meant there was no evidence of disease in the batch of tests I had just had. More recently my oncologist discharged me from her clinic (unconditional discharge as I laughingly put it). I have never been told that I am ALL clear. I have always been advised to take note of symptoms and contact the relevant teams if I have concerns.
There are statistics which will tell you something about the likelihood of recurrence in your case - which is not an assurance that you will stay healthy. Its not even a statement, merely a deduction from information gathered and analysed in a particular way - but it helps you get things in perspective. I ask my oncologist for some of these figures and got them.
I am generally very impressed with the quality of my medical care which is NHS in the NE. I’ve heard and read much that makes me certain that I have a good team. SO I would guess the final factor in getting good treatment and information is the post code you live in - but thats a very contentious subject!

Hope you get at the details you need.

Thanks for your in-put ladies. I think you are right about confused interpretation of the word cured.

But It still angers me that I have not been offered further tests to rule out secondaries other than a bone scan that I had to really pester for when suffering shoulder pain.

I did have node involvement, though my tumour was only a grade 2 and so not the most agressive. I can’t get anyone, even my BC nurse to explain who gets furthers tests and when. I know it’s a cost thing. Well I think it is but this is denied. Surely if I have cancerous nymph nodes, the cancer could have spread.

I would love to have the peace of mind that some BC sufferers have once all the available tests have been carried out and nothing was found. Every ache, pain, even cough gets me paranoid.

Irene

hi there

After my diagnosis during one of my consultations, I asked how I would know whether I had secondaries and was immediately offered, chest x-ray, liver scan, bone scan. Have you asked for these tests? Tell them you would like to set your mind at rest as far as possible and could they arrange them.

hope that helps. Good luck

Sharon

Hi Irene, i think every health authority in this country is very different, i have never been offered a bone scan, liver scan or any other scan, but i had no lymph involvement. my tumour was grade 3/2 and was just heading in the direction of going elsewhere, so lucky i found it when i did, but i trust my onc, i have to, i was on tamoxifen, found it very difficult to cope with, am now on zoladex and waiting to have the ovaries out, my quality of life has gone up, ok, i might get some side effects when i start on an aromataise inhibitor, but if it helps to keep it at bay then i will live with the effects, like Holeybones says, i don’t believe you ever get the all clear, cancer doesn’t discriminate, what treatment have you had Irene to make you feel like you do? and has the experience of seeing your onc not been good?

lots of love

Alisonxxx

I thought you might like to hear this girls! I’ve have today received a letter in reply to the concerns I have raised regarding my treatment. In my initial letter I quoted my Doctors who both stated I would (much to my surprise!) be cured post treatment!

The reply says" she has indeed been cured of her breast cancer…"

So who do I believe??? My nursing background tells me to listen to what I know, but with my patients head on should I be listening to what they say???

No wonder we have conflicting concerns on whether we are each getting the best treatment!

Lynn x

I don’t think they should say you are cured, I remember reading in Jane Tomlinson’s book that she was told this after her primary breast cancer was treated.

However, even if they do test after test for secondaries it doesn’t stop them popping up later, if the cancer spreads it is only detectable when it is already causing symptoms and is big enough to show on their tests. So the tests are fairly useless. Especially as early treatment does not appear to affect your prognosis. If breast cancer progresses to secondaries it is treatable but not curable.

Unfortunately there is no certainty in breast cancer, and no tests that will definitely prove you are cured. It is only if you die of something else that they can think you are definitely not going to get it back.

But heart disease kills more people and I expect that this will kill me as it has a number of my past family members.

Unfortunately something is going to kill me as there are only two certainties in life - death and taxation.

Mole

Well put Mole

Alisonxxx

Exactly Mole…

I’d like to ask Mole if she has had any further tests, and if so, did it put her mind at rest? And why is she so fatalistic about when and how we are treated and the outcome of these tests.

I know there is no definitive answers to my initial question, which was, why do some people get told they are cured, and some get loads of extra tests at diagnosis, and others don’t even get basic tests after initial diagnosis of primary BC.

I know I could get the all clear from further tests then later be diagnosed with secondaries, but I still think I am as much entitled to these tests as someone else who happens to live in a different post code area to me.

I am begining to think that it doesn’t do me any good coming on here any more. It is so much easier to not think about the possible outcome, if i am not in contact with those who are treated differently from me for no apparent reason.

Irene

I think it depends on you the patient whether the tests are done if ever I showed any concern my Dr arranged for tests after explaining to me the usefulness or not of a particular test… … each diagnosis and person is an individual and luckily my med team understand that. I’m sorry that some people have trouble getting the tests they need as you say it shouldn’t be postcode lottery…but is it that bad or an excuse for bad handling of a patient??? Looking for some comments on that!!

I read the NICE guidelines on better outcomes for breast cancer and that said that tests for secondary breast cancer are of no value to your future prognosis. Thus I have avoided other tests except when I had back ache. Then I had a bone scan but it showed nothing except degenerative disease apparently due to old age. According to everything I read, the tests only confirm if your cancer has spread, and if it does spread it isn’t curable whether it is caught earlier or later. The treatment you have for primary breast cancer is designed to stop it spreading. If this doesn’t work no amount of tests make any difference. Which is why I am fatalistic.

no point to be otherwise based on the evidence we now have. It saves having unnecessary tests too, which won’t put my mind at rest since they have absolutely no impact on the outcome.

Mole

The NICE guidelines about making little effort to check for secondaries are clearly more about saving money than being in the patient’s bext interest. Too many women having been diagnosed with bone mets AFTER a fracture. If the bone mets had been found earlier and bisphosphonates given, the fracture might have been avoided.

Also, the fracture will send lots of cancer cells zooming around the body, so they can settle somewhere else.

If it doesn’t matter when we are diagnosed, then all the usual post diagnosis treatments are useless?

Really don’t think so!

The NICE statement doesn’t stand up to close scrutiny.

I am in total agreement with Mole (our guru!). I had IDC and DCIS, and lymph node involvement. usual 2 surgeries, chemo and rads. At no time did my bc surgeon say I “might” be cured, he in fact said: “Liz, you will probably die from Crohn’s rather breast cancer as we know so much about bc, so little about Crohn’s”. I didn’t know whether to laugh or cry! He has never used the word “cured” as I don’t think it is in the lexicon of informed cancer doctors. He just said that at Feb 2007 I was NED (no evidence of disease). Well, no cancer, but got big problems with my weekly chemo for Crohn’s with grossly enlarged red cells, but that is another problem not appropriate to discuss here, unless there is anyone out there with both bc and Crohn’s, whom I would love to share experiences with. I am grateful that my bc surgeon always asks how my Crohn’s is doing, as he knows I have weekly chemo. I tell him I am doing fine. I am a supreme optimist, probably misguided.

At my last annual review in February I asked how long I will be monitored, and he said for 9 years from dx. If I have any unusual symptoms he told me to ring my bc nurse for an appointment with him. That’s fine with me, grateful if I make it that long at 63 yrs. As far as the Onc is concerned, I am off the radar - he discharged me after I finished rads 4 yrs ago. I did however manage to upset his stats when I went privately last year for an HER2 test as it was not done when I was dx 4 years ago. He flatly told me that even if I was HER2+ he would not prescribe Herceptin, as I was too long out of chemo, and ideally, he said, Herceptin should be given with chemo, or at least within 6 months. Wish I had printed off some of the responses on the USA bc.org site, where women are getting Herceptin long after being diagnosed. The only solace I got from him was a letter stating I was HER2-, and with ER+, this was a great prognosis!.. I nearly choked at his patronising attitude. However, thankful I was HER2-

I guess because I had lymph node involvement (4/18) I had bone,liver and lung scans immediately after my axillary resection. I didn’t ask for them, and couldn’t have as I was absolutely clueless then. Thankfully, all were clear. Only found this site when going through rads.

I had severe left hip pain about 2 yrs ago and I was worried it was bone mets - went to my GP, he sent me for a normal x-ray at a local community hospital, not the breast care centre where I am normally treated. GP said x-ray was normal. I told him the pain was so bad I couldn’t sleep at night - every time I turned over, the pain came back and woke me up. He sent me for 3 months of weekly physio at a local community health centre. Pain eased a little, but not much. Then I went for annual review with my bc surgeon and told him of the hip pain. Within 2 days I had a bone scan which found I had severe arthritis of both hips, feet and hands, and the surgeon wrote to my GP to prescribe bisphosphonates and Calcichew/Vit.D3. He also wrote to my gastro requesting a DEXA bone density scan, which I had 3 months later, which showed severe osteopenia of my bones. This was not due to cancer, but 30+ years on steroids for Crohn’s. The pain has virtually gone away now, due to taking the bishopshonate. I am just so grateful that I have such a caring bc surgeon - he is very shy and at first didn’t say much, almost blushing, but after he had a stroke last year, is now back at work and has a quite different attitude. Takes one to know one I think.

3 months ago I broke a metatarsal bone in my right foot - all I did was stand up from the dining table at 9.45 am , so I was not inebriated. My leg had no feeling and I fell on the floor. It was a Sunday, so didn’t know the local community hospital was open for minor injuries. I spent the day and night in agony, hubby telling me I had sprained my ankle!. He got a wheelchair from our Fort’s Maintenance Manager at 8 am next morning, and arm crutches from the GP at 9 am and got me to the local hospital where they dx the fracture. I never even thought to tell them I had had bc or osteopenia. Spent 3 weeks in the wheelchair and another 3 weeks on crutches.
Then, I hit my foot on the fridge, broke a bone in a toe in the other foot, so I know I have some serious bone problems. It has never occurred to me until this evening and reading this post to ring my bc nurse to tell her about my two fractues and seek an appt. I don’t think it has anything to do with bc, just ageing problems due to steroids. We are going on holiday tomorrow for the first time in 4 yrs, so I guess it can wait until we return.

I have a brilliant bc nurse, and she is always available if I need help. I got Mondor’s disease of the breast 2 yrs or so ago, and she got me an appt in the breast clinic on a Saturday morning. I didn’t even know the NHS clinics worked weekends!. Unfortunately, my surgeon was not on duty, and the guy I saw sent me straight off for a mammo and ultrasound. Told me nothing was wrong, but I was not convinced, so rang my nurse back. She then got me an urgent appt with my own surgeon, as I thought I have Inflammatory Breast Cancer - the breast being red, swollen and a big nasty ropey lump. He took one look and said you have thrombophlebitis of the breast - and I said: “Oh, Mondor’s disease then”. He was amazed that I had looked my symptoms up on the internet and dx myself. He even had the on duty radiologists and radiographers come in and look at my breast - some cheeky ones even had a poke and a feel! He said in his 30 yrs of bc he has never seen Mondor’s in a bc patient, but has seen it otherwise. I feel exceptionally lucky to have such a dedicated and experienced surgeon.

Guess what I am trying to say is that not all bc doctors are the same - some are exceptional in their experience and compassionate attitude. Others, like the first Onc I had, should never have become Oncologists - radiologists or pathologists perhaps, as they seem to have no idea of how to relate to patients diagnosed with a life threatening disease.

I think most of us have said the same thing - you will always get seen urgently if you have symptoms of bone, liver or lung mets. The NHS cannot do endless CT,PET and MRI tests as my friend with lung and kidney cancer has in the US. As my Oncologist said: “You can have all the tests you want in the US, because you have to pay for them directly.” Like some of the posters, we are not told about mets. Well, I never was, and so we are not sure when to ask for help. I am now very proactive about any symptoms I have - it is my life, not theirs, regardless of the costs to the NHS. (edited in line with the moderation policy- moderator) I have paid into the NHS since I was 14 yrs old, and am still paying tax at 63 yrs, so I feel my contribution warrants proper treatment and attention.

That’s me off my soapbox for tonight! Sorry for the long post - but so good to talk to others with bc.

Take care,

Liz.

Hi Holeybones,

I started writing my response before yours was posted. Do you think my two recent bone fractures in my feet have anything to do with bone mets? It is quite a while since I had the bone scan. My Gp is absolutely clueless, and I never saw him once during all my bc treatment - just relied on my bc nurse. I have been on bisphosphonates (Alendronic Acid + Calcichew/Vit D3) since the DEXA bone density scan, which was after my last annual review with bc surgeon in Feb. I didn’t go to the GP with my bone fractures, just went to the local hospital, where I saw another GP. I did go and see him after attending the local hospital as they said they couldn’t prescribe pain meds as I have Crohn’s. GP gave me codeine phosphate and said bone fractures can be caused by many different problems. He unbelievably told me about some 25 stone sumo wrestler, sitting at a table, leant over to pick up sauce bottle and broke a bone in his back!! Yikes., I would find another GP, but we live in an isolated Fort, and there is no other GP within easy driving distance, so stuck with him. He is lovely really, has all the time in the world for me and my disabled husband, but guess constrained by resources in what tests he can prescribe.

Liz.

I have to say, i am weary of any other tests being done on me, all i’ve had was the mammogram and scan and that was the day i was diagnosed, i have no idea what to expect of future appointments, i know i will have my ovaries out soon, and that i will go onto an aromatase inhibitor, but i really don’t know what tests to expect in the future, i have been told a mammogram every two years, i don’t even know how often i will be seen after my recon nipple/ovary removal, i know i have sore knees, but thats one of the side effects and i am hoping it may ease, if not, well, i’ll be best mates with a bottle of cod liver oil!

Alisonxxxxxx