Negative, insensitive doctors?
Hello everyone,
I've found the emotional aspects of my BC dx hardest to deal with - the anxiety, fear, depression roller-coaster I'm sure many of us have experienced - and every time I manage to get myself back to some fragile level of mental equilibrium I get knocked back again by some clangingly negative comment from one or other utterly insensitive doctor. Has this been anyone else's experience?
I live in London and am treated (on the National Health Service) by a multi-disciplinary team. I'm lucky that my surgeon is a man of both great skill and enormous emotional intelligence and he's always been kind and incredibly upbeat with me, reassuring me that the odds are in my favour and that HER 2 +++ is now considered a favourable feature because of Herceptin etc etc.
My oncology/radiotherapy consultants, by contrast, have been appallingly negative and insensitive! For starters, three of them, who are youngish women, walk around in low cut tops, their cleavages very much on display, and I wonder how this makes those of us who have had mastectomies feel. I'm due to start radiotherapy on tuesday, and the radiation consultant came and explained to me last week (with a funeral-face) that "We're giving you this radiation to try and improve your chances of survival...' I've been really depressed ever since then and I realise that it's probably down to this comment (which kind of implies a hopelessness to my situation - far from the truth!)
Another junior oncology doctor went on a blame-fest with me, demanding to know if I've ever smoked, wether or not I've been on the pill, been fat in the past, exercised too little, not eaten enough greens etc!!!
There was a recent excellent article in New Scientist about "Medical Voodoo", the idea that negative expectations on the part of someone in a white coat can produce harmful effects:
http://www.newscientist.com/article/mg20227081.100-the-science-of-voodoo-when-mind-attacks-body.html
Anyway, please forgive the rant - I'm just so upset by it all. A BC diagnosis is hard enough to deal with without having to deal with this kind of nonsense as well!
Hugs and healing wishes to you all...
Lucy
Comments
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Hugs right back!!
Geez. Can you go somewhere else? If not, comfort yourself with the thought that they are young, these doctors. So, they don't know any better and they have never themselves been through a major emotional trauma...
Second, I don't know if you have chemo recently but it made me very emotional and ultra sensitive. I can take a little more distance now. Take someone with you to your appointments and then that person can step in if the dr is annoying.
Hang in!
-Helena.
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WoW! I am shocked at the behaviour of both your rad oncs and the jr. onc. As you were repeating the first comments, I thought you must be Stage IV, and was obviously happy to see that you're not. So the comment seems entirely off-base to me, as are the low-cut tops. And the jr. onc's comments are equally appalling!
I haven't read the article you gave the link for yet, but I know from my own experience that there's nothing like the reassurances of your medical team that they caught it early and you can be totally cured. If you can possibly find doctors who are more confidant in their own abilities and more positive about your outcome, I, too, think switching would be something to seriously consider. However, if you can't, I would start to draft a letter about these insensitive interactions you've had, and plan to send it when you're finished with your treatment. (No sense in rocking the boat any sooner.) But your oncologist, in particular, is someone you will have a relationship with for a very long time -- and an active one as long as you're on Herceptin. So, best to find someone you like who is totally on your team -- not an adversary. So, hopefully, you can find doctors who don't stress and upset you, which is the last thing you need in a medical team! Deanna
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Thanks for the support Helena. You're right - chemo has definitely left me with less emotional resilience - thankfully my chemo's over now though. I also sometimes think that doctors cut off from their feelings as a way of dealing with it all - must be particularly true of oncology. Whatever - I can't go somewhere else unfortunately, because in the UK the best cancer treatment is with the NHS. Will take your advice and take a pal next time though!
Lucy
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Thanks for your advice, Deanna! I may indeed draft a letter after treatment, as you suggest...
lucy
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Why not rock the boat? Whether it's your emotional state or their clodhopper insensitivity, the message you are receiving is negative and not helpful. But your medical team can't read minds. You'll be interacting with these folks for some time to come -- why let it go? For instance, to the radiologist, "It sounds like you are suggesting that my chances of survival are not very good. Is that what you meant to say?" Chances are, you'd get a strenuous back peddle and lots of reassurance. I'm not sure about your encounter with the junior onc -- it's possible he (?) thought he was conducting a straightforward history, but if you felt blamed and upset, you could say "You know, this is very upsetting for me right now -- what is the goal of this conversation? Is this something we can do another time?" Yeah, I know, it's easy to think of good responses at a distance or later, but my point is, why wait to straighten these people out??? If you feel better writing a letter -- do it now so you can all get on a better footing going forward.
You are absolutely right about the "medical voodoo" and the importance of the right "messaging" around your illness. You might look into some self-guided visualization or medical hypnosis techniques to counteract the negativity you've absorbed so far.
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Since you are stage I, your prognosis should be really good. I wouldn't have hesitated to ask the rad onc what he meant by that comment. It really is an odd thing to say given your stats. Your chance of recurrence after chemo and Herceptin should be very low. I'm similar to you and had Taxotere, Carboplatin and Herceptin. In the BCIRG 006 study, recurrence with that was about 7% for node negative. Since my cancer is smaller than those in the study, I expect that my risk of recurrence is 5% or less.
The blame fest is uncalled for too.
My oncs have all been very upbeat about my prognosis.
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Thank you ladies for the wonderful support! I feel better already...
Will look into medical hypnosis/visualization, jenbal, thank you!
And bluedasher I'm hugely heartened that you have almost an identical diagnosis and feel so strongly upbeat about it. A 7% chance of recurrence for HER 2 ladies who have chemo and Herceptin is a figure I've come accross too - but, yes, I'm also aware that, given that, in order to be eligible for the HERA and BCRIG trials participants had to have a tumor over 1cm in size, so really there's still no real data for women who have small HER 2 tumors (like you and me) and have Herceptin. That data will only emerge in the next few years. So there's probably still lots of debate and ignorance going on in oncology circles about how to treat us and what our outlook really is.
I also think that many of the consultants I've dealt with have tended to err on the side of being downbeat and not "over promising" because they're scared that if it does come back, I'll get litigious on their asses. But everybody needs hope. Large dollops of it when you're going through this...
Wish I had your oncs, bluedasher - but then in the USA, am i correct that it's all private health care - and maybe the element of "consumer choice" keeps them on their toes!
While I'm utterly grateful that, here in the UK, I get cutting edge treatment *all for free* on the National Health Service, at world famous teaching hospitals, the downside is that there's a "shut up and take what you get" attitude...
The snotty little junior doctor who went on a blame fest has apparently upset many patients in the past, according to my breast care nurse (who is *fabulous* but gone off to have her baby now). She said junior docs been told off in the past. So why hasn't he been removed from dealing with patients or at least given a warning or something, then?
Anyway, have a great day ladies, wherever you are...
Lucy
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Dear Lucy, I too am a London and I have experienced pretty much exactly the same as you! A friend of a friend who is being treated at Guys has the same experience. I am at the Royal Marsden.
Therer are a couple of things I can relate:
1) I made a complaint about various things about my surgeon (who is a tchnical genius but not easy to deal with) and other matters. This was done through the PALS service. So few people ask for a written reponse rather than a verbal, this caused some big time explosion. I won't being the surgeon for a while anyway, but I am not sure that this actually produced the results I sought.
2) you could have a verbal discussion and meeting with the PALS service, but not make an actual complaint - ask for their guidance.
3) A young onc at a top-line Loncon cancer hospital is by nature likely to be a) quite arrogant - it is a very competetive field b) virtually no experience of the world outside hospitals.
I went to my GP to discuss the relentless change of oncs that I see, and that they were totally negative and tactless to a breathtaking level. Interestingly, he used to be a surgeon and retrained as a GP as he actually likes his patients and wants to communicate with them as individuals, not just a patient number. We spent a long time discussing this (probably 30 minutes - pretty amazing for an NHS GP consultation!!!) and he took on board the very negative effect these people have. Basically, he mooted the idea that I perceive these oncs as talented mechanics and try to avoid the rest. It isn't a bad idea. I know our US colleagues sometimes have a more immediate ability to change hospitals, doctors etc, which in many ways is great, but if you have spent a lot of time looking at different info on this site, you'll see that nasty negative oncs is not only a British phenomenon.
What I discussed with my GP is: are the oncs at the top hospitals all trained the same way/do they do the same courses (the latter because of an almost verbative nasty comment made to both myself and the woman at Guys). He says they are. Also, it is not the habit of British oncs/surgeons to give you much in the way of good news (because they don't want to build up your hopes. As if.... And in my view, because then they don't take any potential flack for anything that might go wrong.
ASnother point - NEVER let anyone suggest that any of this is free. Unless you are a newcomer to Britain, your taxes and NI will pay for this all your life. It isn't sodding free!
I am not convinced you should let this rude behaviour go unchallenged - nothing changes in a system unless we the patients challenge it. I am not suggesting you get into a row, but have a chat with the PALS people at your hospital, making it clear they are not to do anything without you permission.
Last week, genius young onc pointed out that I would have been better off by having children. Odlly enough, all the women in the waiting room were motherly types who almost certainly had children. So it is a bullshit comment.
If it is any comfort, actually we probably won't have to have a long term relationship with the onc- different system here.
For English type info, feel free to call by other bits I post on here, if it would be of any help at all. Or pm me if ever you need it.
I empathise and sympathise with you totally. Who bloody needs it.......
However, at least drugs etc etc are no things we have to fight for through insurance companies - can you imagine having to argue with a call centre!! I would hate having to do that (I have had private healthcare with work and they are useless overall).
You aren't alone at all - vent to your heart's content here - I do incessantly! what a tolerant bunch these lovely ladies are!
Thought - give a copy of the article to the rude onc. Keep numerous copies with you to distribute around the hospital!
Anyway, all the very best wishes for a happier recovery, and it would be lovely if you kept in touch with us all.
warmest hugs -
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Just one thought I will add, which we should consider.
If you research it, you'll find that the reason cancer treatment/remission rates have really gone up in a positive way (in the UK) over the last few years is that A LOT of money has been pumped into it and the results are begining to show, so lucky us. The Marsden is fantastically busy, people come from all over Britain. The chemo room can treat 40 people a day. Speaking for myself, I was diagnosed and operated on quickly and nothing has been delayed and I never wait long for anything. I'll be interersted to see what happens when I ask for a Mets type scan, that could prove a tussle.
But I am glad that things are so busy at my hospital, because I don't think that people could get trated this way only a few years ago. Therefore, one can tell that a lot of people working there myst get very tired. Which is pretty similar to everyone else in long hours Britain.
Thinks - is this good for the nation's health?
!
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Good to see a few fellow Brits (hi from a Scot living in Devon). Virginia, what do you mean by "mets type scan"? If, as I think, you are hoping to be scanned after completion of treatment on a regular basis-it won't happen. You will be followed up for a number of years, but scanninga s routine doesn't happen.
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Bless you Virginia! You have really made my day. I feel massively empowered just by knowing that other people's experiences in the UK have echoed mine.I've been having chemo and now radiation at Bart's (St Bartholomew's) though I had surgery at the Homerton. I will certainly investigate making a formal complaint through the PALS service.A physician friend of mine who is a consultant at the Royal Free thinks the problem is down to the selection process for medical training in the UK - the nerds and boffins with the high grades, who aren't necessarily rounded individuals with good people skills, get selected. They also get told they are 'The Cream" throughout their training and so emerge with a great deal of arrogance.That said, there is a lot I am indeed deeply grateful for. Even as recently as 2006 we HER 2 ladies would have struggled to get Herceptin as early stagers and now it's the standard of care. The NHS also pledged to ensure that cancer patients get seen and dealt with quickly. I was formally diagnosed on 13 January and the tumour was whipped out on the 29th Jan. By contrast, my partner had a male breast condition about 20 years ago and had to wait nearly two years for it to be diagnosed and dealt with. For two years he lived with the worry that it might be cancer!And UK BC survival stats are indeed going up and up. And so they bloody should - they've long been a national disgrace and, despite a big recent improvement, are still the worst in western Europe. And nowhere near as good as the USA stats, if you compare those on the Cancer Research UK website with those on the American Cancer Society's website.Just to end off on a more positive note though, I hijacked my entire case file (it's my bloody property after all!) and read all my notes and all the correspondence about me between various medics - though of course they don't like you doing this. I was moved to tears to find that after every consultation I had with my incredibly compassionate surgeon, he'd made a careful note of how I was feeling that day, whether I appeared anxious or not etc. He has always been warm and upbeat, always encouraged questions and had plenty of time for answers. So, every now and again you do come accross a gem of a doctor, someone genuinely dedicated to the art of healing.And finally - my physician friend says it's the gabby, gobby patients who question, challenge and take charge of their own process that do well and get the most out of the system. Though frequently the more insecure doctors will find them threatening.Big, healing hugs to you...Lucy
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Hi Lucy
I didn't read all the replies to your post (I am at work) but I will share my experience with you. I was diagnosed right from the start at stage IV with mets to my bones and liver. My first oncologist told me we are not going for a cure just quality of life. He was fired by me. My current oncologist told me she is treating me as aggressively as stage II. At the time of diagnosis, I had a bone scan and CT scan that came back clean. At the last minute they did a PET scan to look at a tiny lung nodule which turned out to be nothing but then they found liver and bone mets. HER2+ moves fast! My current oncologist told me she believes many earlier stage cancers are probably Stage IV and nobody knows it because they don't do PETS if the CT scans come back clean. She never once gave me a statistic. She said it is too broad to give survival rates per stage because there are too many things that affect it ... your HER status, ER status, etc. My surgeon told me 8-12 percent chance of a 5 year survival. My oncologist told me to disregard those numbers. However, then it is time for radiation for me since I had a lumpectomy. My local radiologist would not give me radiation. They said due to my stage they felt that my cancer will come back and that the radiation benefit would be minimal and not worth the risk. My oncologist sent me to the University of Michigan (about 67 miles out of my way) but they absolutely said I should get radiation and so I drove 1 1/2 hours out of my way every day for six weeks for radiation.
So, it has been 1 year 8 months from my diagnosis. After 3 of the 6 cycles of chemo I was cancer free... no evidence of disease. I have been able to maintain this status. In fact, I just had a pet scan today and the tech told me he didn't see anything amiss. So POO POO to the first oncologist, the surgeon and the radiologists!!
Don't let them get you downt. I should have written a letter to the radiologist group but I only want positive energy.
You are early stage and Herceptin is a miracle drug in my book. You will be OK. Be a believer in yourself.
Jennifer
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Hi Elaine - I am a Dartmoor girl originally. I sort of assumed I'd get some sort of mets scan post chemo but another Brit has said it is unlikely. Have you any idea if I could commission a test privately (say, at the Lister) and prsent that to the Marsden? Any thoughts gratefully received....
Some other Brits call in on another thread I'm on, which started when I was a newbie in May. call by for cyber coffee when you want!
Ruby - I am so delighted to have given you a little relief from your understandable upset - I felt the same way with my GP's comments! As I feel like rap presently, I am very glad indeed to be able to have done a small things to help.
Your friend at the Royal Free made some very good points. I will just mention that someone I know of via a friend, had trouble at the Royal Free (which does good reseaerch work) and moved across to the Marsden. Another person didn't like Kings, and also came to the Marsden. The lesson is: they are al the same in outlook. i.e. it is the way they do things.
I sympathise with your partner's wait - how awful. As for the UK stats, yes, comparatively still a bloody disgrace. I despair of this country really. One of the richest nations on earth and yet as citizens, we are treated like crap really.
I'm afraid my efforts to date have gained me nothing but unpleasantness. I have not been particularly agressive but it seems that any kind of request for clarification sets off their "don't bug me I don't know/can't help" alarm. Be warned - if you ask PALS for a written response, as I did (what the hell's the point of a a verbal one? how is that recorded?) you will definitely get put on the naughty bench. By all means do it, but be aware of whre that can go, becuase that might not be what you want to deal with right now.
I am glad for you about your surgeon - what a brick. Mine is a very talented technician, but said various things to me which have broken my confidence. example cheery comment "good job you don't need Herceptin because you wouldn't get it." Relevance? this is a really piddly example. (errr, no I wouldn't need it because I am hormone pos. but her point is?)
Other than when my mother died when I was a child, and when my dad died a few years back, I have never looked in the mirror and stared at defeat before. I have lead a very stimulating and challenging life; I would change very little. There have been a lot of difficult times amongst all of that, but I have made it through, with a little help from my friends and lovers. I've always seen it as filled with sun and hope.
But this time, hmm. I persistently feel as if have been kicked in the solar plexus and all the wind has gone out of me. I think the surgeon and oncs enjoy the put down of the gobby one. By the way, do you usually see the same onc, coz I don't? It isn't that these people aren't "on my side". It is that, there isn't a me. I am certainly a number and no more. Because I see so many different doctors, they repeat over and over all the negative stuff, so I am persistently dumped on.
I have done so well in reality. I had a horrible post op (immediate) infection which meant I had no skin on the lower part of my rebuilt breasts. It still is not totally healed. It was painful and looked hideous truly. But I still got out to do my 10k steps every day and got on with everything even though looking in a mirror whilst dfoing dressings just made me shake and feel sick. I feel a lot better now, but it delayed my chemo treatment.
One positive idea that I had after reading your post today, is I wonder if there is merit in a few of us sending a letter to the Royal College of Surgeons, similar "trade body" of oncs, and trying to open a "no blame" debate with them? This might actually achieve something in the longer term.
Personally, I don't want my life to revolve around incessant cancer chat, (if only!) but maybe we could do something about this without it being a lifelong commitment...
In my case, they have been so downbeat about my prognosis that I almost feel like buggering off on the next plane to the Aegean and not coming back. But I sort of sense from others at my grade etc on this site that it isn't really that awful. I no longer know what to think.
Anyway, do keep in touch and warmest hugs to you all too.
xxxxxxxx
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Hi Jennifer,
Just wanted to say that I think you have a wonderful oncologist! That is really great to have someone on your side like that!
Best,
Helena.
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Hi, ladies. I am in the process of switching medical oncologists due to the way I was treated on my last visit. I was given the option of chemo based on my tumor stats, my age (46), and my oncotype score (intermediate) and I decided to go for it and get TC for the 4 doses. I developed severe allergic reactions to the taxotere and Neulasta, so with my med onc's blessing, we stopped chemo after 2 rounds. I then started rads, 33 tx, with absolutely no problems. I followed back up with an appt. at the med onc as I hadn't seen him in 2 1/2 months and I knew that I would be put on some sort of AI. First off, he says to me, "Wow, why hasn't your hair grown back more than that?" Huh??? Well, Mr. Doctor-man, it might be because I had developed follicultis that lasted for over three weeks after the last taxotere? And, your office misdiagnosed it and told me to use something that made it worse? Then he says, because I stopped the chemo, I HAD to go on an AI. Huh again? The chemo was optional, and we both decided it would be best for me to stop, as ER visits each time was not an option I wanted again. Just felt like he had forgotten all about me, and was not only chastising me for stopping chemo, but that I was being forced to have an AI. "Well, YOU stopped chemo early, you didn't finish it." I started Femara and within 2 weeks of half doses had bad reactions and I stopped it the same day the med onc called me to tell me to stop taking it. It was not the best visit with him, and my husband has not liked him or his office since day one, feeling I was bullied into the chemo as well. I am switching oncologists and will see my new one in three weeks - she has a fantasic reputation and is a breast cancer specialist, so I am encouraged that this relationship, which I will have for a long time, will be a better one. Funny, but I love the other two doctors in the group with my former med onc - the breast surgeon is amazing and the radiation oncologist is wonderful. Sometimes you just have to keep looking, I guess.
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chelev - what a journey! all best wishes for a nice new onc. xxx
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hi my friend,think of them as a BAD HAIR DAY,don't let them get to you,i know it can I have been there too,but fact is I am a cancer patient twice,colon first and now Her2 positive Breast cancer,27 lymph nodes affected,we fighters will survive oh yes we will,there are more Positive People than negative ones and so we just keep going ,set your mind to it,works wonders.
I just turned 60 this year,I am not giving up despite so many turns and twists,we all matter in this world and someone always wants and needs us around and so Go for that fight with big gloves.
One thing we all have in common we know the deal we walked in your shoes and we walk and stand by you.
huge hugs across this net of ours
be well
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lovely post Paula - best wishes to you.
The vicar who christened me was Mr . Duxbury!
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I'm bumping this thread even though it's a year old because I feel like I've been run over by a cement truck, for much the same reason. On Friday I had my 6 monthly check-up with the surgeon who did my lumpectomy. In the past he's been one of the more compassionate doctors I've dealt with but this time he gave me the full funeral-face treatment. He basically said that I can never really stop holding my breath - even after many years post diagnosis. He saw someone the other day who had a recurrence after 30 years. What a delightful and charming and hope-inducing thing to share with me! Is he some kind of sadist? What is it with these doctors that they're so terrified of giving you hope? In case it's "false" hope? In case you decide to sue them if you do have a recurrence? WHEN are these doctors going to realise that we patients need them to *believe* in our potential to heal - and that this is as important as any drug they could give us.
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Rubyluby ~ I think you hit the nail on the head in your most recent post when you said your surgeon had just seen someone with a recurrence after 30 years, which has obviously upset him and colored his perspective. I know a couple of times my primary doctor seemed overly harsh with me about my treatment choices (which have not always followed with her advice), but each time I later learned that she'd just experienced personal losses due to cancer. I completely agree with you that our doctors need to be positive and that it's important to have doctors who give us hope and realistic peace of mind going forward. But they're human too, and if yours has always been positive in the past, then I'd just chalk his comment off to his personal reaction to the other woman's situation (which was probably quite different from yours, anyway), and not meant to be as doom & gloom as it came across. Deanna
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Rubyluby, I also agree that you hit the nail on the head. It has been 1-1/2 years since my diagnosis and unilateral mastectomy and still have not had reconstruction due to my insurance company and only choices of implants (after rads) or TRAM in my network. The 2 physicians I can pick from mainly do breast augmentations every day, not TRAMs. No thanks. I am waiting to change my insurance in open enrollment at the end of the year. During my process of appealing to my insurance company's denial for me asking for a DIEP out of network, I asked my radiologist if he would write a letter that I could include with my appeal. He said "no as it won't do any good." I am sorry but you are the doctor that told me from day 1 when I sat down and listened to them all about what I was in for that I could have nothing but a DIEP because of rads and then you won't support me for my appeal with a simple letter???? Dumb@**. also my main oncologist has never throughout this entire thing said to me things will be okay, he scares me more than anything. Every time I ask for stats I am told we are doing all we can, yeah being realistic is cool but I am so scared every time I see him, please give me some positive hope just one time so I agree with you. I guess you can try to look at the bright side of "I saw someone that recurred after 30 years" in the fact that I would be extremely happy to know that I had 30 more years to go before it recurred.
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