sorry to see that msmolly. I read it last night and thought you had a very valid point.
Dawn
I just thought I’d bring this back to topic a little by seeing if there is anyone else here who had BC in both breasts at the same time, ie growing independently
I know it’s a subset of all BC patients but you never know.
Not being a stay on topic militant or anything just thought I’d ask.
Angie
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I didn’t say anything about money. I didn’t say they weren’t dedicated. I said they were not good at communication, and I still hold it is paternalistic to suppose that certain women can’t cope with the internet or other sources of information and should therefore in some sense be protected from it, and also to suppose that the source of information (the internet in general, forums in particular) is a problem - which seems to me to be leading to a conclusion that information sources should be limited in some way, that the existence of the internet, for example, is harmful to some women. I think that is a misdiagnosis and wrong prescription for some people’s anxiety. That is all.
But perhaps we are not going to agree, and I do not want to fall out over it, so I apologize for any offence caused.
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I did have bc in both breasts at the same time. On the right side I had grade 2 invasive ductal tumour and a separate area of DCIS. On the left side I had DCIS, though a different type (papillary) than on the right side. I was 43 at dx and given a MRI scan, which is what picked up the DCIS (mammogram found nothing and ultras sound found tumour only). My surgeon didn’t really say if it was rare or not.
Though devastating news at the time, it was important to know about all the separate areas and certainly influenced my decision on treatments. I went for bilateral mx and immediate recon, whereas I had favoured single mx and time to think about recon when I thought only one side was affected.
Regards
Misha
Snowwhite, I must disagree with your view on doctors. It is fairly harsh to say the least and a huge generalisation, if I may say so. This is the second time I have had to deal with cancer - first my son, now me. I have come across extremely dedicated, hardworking, committed clinicians who have spent endless hours trying to ensure that I had the right amount of information. It was very difficult for them because I needed to know a lot - probably too much in the sense that some of the things they told me regarding my son never happened and I spent a considerable amount of time worrying about this. It was an extremely distressing situation, but they handled it expertly and with great compassion. Never once did I feel that they were only interested in the blood and guts of my son’s treatment. I remember sitting up all night (yes, all night) with a very tired but dedicated consultant oncologist who ensured that I got as much information as I needed as my son was being included in a clinical trial. This particular lady was devastated when children in her care died, even though they were seriously ill. She and many of the team would attend funerals and be genuinely distressed at each and everyone. They gave up much of their spare time to talk to grieving and upset parents, staying long after their shift ended. There were one or two individuals who were not so good with the communication side as one would like, but they were in the vast minority and I guess that in all walks of life you are not going to get 100% all the time.
I am a dental hygienist and work in a dental hospital alongside very senior people. They are so hardworking, it is untrue. Yes, as you say, they are amply remunerated (although I would argue that if you compared what they earn to someone equivalent to their experience and time spent at university in the corporate sector, their pay is modest) but they earn every penny. They are constantly researching new evidence to ensure that patients get the best treatment. They are well aware of the problems perceived in terms of information provision. It is a huge problem, mainly because as the NHS system is operated, there simply isnt always the time necessary to give each and every patient the amount of information they need. I have a very limited amount of time to see patients and I have to not only treat them clinically but also ensure they make an informed decision about their care. This can take ages for some patients depending on their understanding, language barriers etc, but I do my utmost in the alloted time.
It isnt a perfect system, far from it, but to say that most of us would rather distort or cut short information to make life easier for ourselves is simply not true.
Whoa ladies, calm down.
I presume nightowl was not asking for people’s opinion on the medical profession or inappropriate use of the internet or forums. I imagine she was seeking reassurance about the possibility of her second lump being malignant and asking how likely this is.
I went through that horrible scenario 18 years ago when I found a lump in my left breast 3 weeks after diagnosis of a cancerous lump in my right breast. This lump turned about to be benign but I can still recall the horror of those further 2 weeks when I was waiting for the results on the left breast. To make it worse, my results were not back from the path lab at the follow up appointment and I then had to go home and wait for the oncologist to ring me.
So nightowl, I really feel for you at this time and hope the lump turns out to benign.
Take care.
Wendy x
Hi Nightowl
Wendy has a point - it seems as though your original thread has been hijacked and I admit I am partly to blame because originially I responded about the bilateral cancer, saying it was rare and in response to your question about a lot of ladies on the forum having bilateral cancer, I felt that you should view these forums cautiously in terms of being represpentative. I too really do hope your lump is benign and hope you get your results as quick as possible and get all the information you need from your doctor.
It was after me suggesting that perhaps the forums are not also accurate that comment that the discussion on whether we receive adequate information started, so I am sorry we have detracted from your original question. However, a lot of interesting issues have been raised and to date, I don’t think anyone has been upset with the debate as we appreciate that there are many different views and opinions - all valid and that these debates are necessary to ensure that our concerns are aired, so I hope you understand.
Oh gawd. I didn’t want to upset anyone. I can see what’s happened here. I’m sorry Cathy, everyone, but my own experience was bad, and I am full of anger over it, and it spills into my posts. I don’t want to offend, and I apologize for the way it came out. It came out the way I feel it from my own bad experience. I haven’t got across what I meant, which I don’t think is incompatible with what you are saying.
I don’t think I’ve said that health professionals aren’t dedicated, I don’t think I’ve said they don’t work hard, and when I mentioned that they are amply paid, I meant that from where I’m standing they get what looks like reasonable compensation for the difficulty of the job they have chosen and so cannot be excused, on that count, for not doing it well when they don’t. I can in any case forgive failures where with the best will and intention things just go wrong. God knows I’m not quite perfect myself (this thread could be a case in point, but if you want examples I’m not short of them).
I accept that in general they are dedicated and work very hard under difficult constraints to meet burdensome requirements. I know too, that as a profession, they recognize that communication is a problem area; and I also recognize how very difficult it is to judge the needs of the individual and to be sensitive, unambiguous, comprehensive, etc. But before we all break down and weep for them, what I have been trying to say is that for all their good will and strenuous efforts they in practice sometimes lose sight of the patient - perhaps because of all the other demands upon them. I have to say that I believe this is not as rare as we might wish. I mean that their agenda is full of technicalities (that was where the ‘blood, guts and gore’ came in: I meant they deal admirably with the technical and practical stuff, for which they have high standards) but only right at the bottom, if it is there at all, is what their technical expertise means for the patient - the personal, or emotional, or if you will, spiritual significance to the patient receiving that expertise; and, alas, it can sometimes, quite simply, since they are mere mortals, be easier for them if the patient just fits in with their agenda, rather than having to ask the patient what they want - which would be emotionally demanding for them when they are already at full tilt. And, I wanted to say, since the patient is their raison d’etre, this is no slight omission - when it occurs. You might argue that ‘spiritual’ stuff is no part of a doctor’s brief; I would disagree: a person is not just a body - I needed to be treated as a person with a cancer, not a cancer with a rather inconvenient person.
This is no place to go into details about what happened to me - I did mention some of it in earlier posts. I don’t think, Cathy, that you would be impressed by a doctor who declined to answer specific questions, met them with ‘Let us do the worrying for you’, then closed your meeting by opening a conversation with you about certain events in the hospital that day which had absolutely nothing to do with your consultation (so, pushed for time then?), which, as he should be aware, you had waited anxious months for to put your questions about your serious condition. That is just one from the catalogue and one thing I had in mind when I said some medics were “inexcusably underprofessional” - that is not a case of “with the best will things went wrong”. I suffered from misplaced good will too - to allay anxiety they misled me, and that is about poor communication, but enough of that now. I was damaged by the way they treated me, I think partly because they are too bogged down in technicalities to see the patient as a person and I say that is inexcusable because in my view if they are to be doctors and not mere technicians it is part of the job. I’m sorry if I seem bitter, I don’t want to be like this, but I wouldn’t be if they had done their jobs better in my case.
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Hi Snowwhite
you have had a really rough time with your doctor. I think I would be as frustrated and livid as you if I had encountered your patronising doctor. Unfortunately, the “old school” types do exist and although I hope and believe they are in the minority and dying out, they do so much harm for the medical profession. A good doctor clinically wise, does not equal a good communicator and in this age of informed consent, it is vital that medics learn good communication skills. I agree that commucation skills are taught ad hoc at the moment although communication skills are being added to the undergraduate curriculum although nowhere near enough. Also, the way in which they are taught is not underpinned by evidence or research and very much depends on the individual tutor, completely in contrast to clinical skills which are all evidence-based. I am studying for a Master’s in Health Communication so I can help to address that particular problem in the dental profession. If communication skills are made more prominent in the undergraduate training, then medics will respect the need for them more.
My only concern with your original post was that you were overgeneralising, which is understandable when feeling so mad and frustrated. I felt that I needed to add another dimension to the debate. As said, I welcome these debates. They are very informative and help us understand what is good and what is not about our treatment. We, as the consumer of the medical treatment are the ones who play the biggest role in shaping and developing the medical profession. Without our voices, they will continue in their traditional ways so please don’t feel for one second that I am upset or anything else at your posting.
Cth
Thankyou for that, Molly and Cathy - and I am faintly encouraged to hear they are putting communication formally on the agenda even if there’s a long way to go.
I hope nightowl got the info she was after too.
Flippin eck girls that was one H**L of a discussion i am worn out reading it.
@ the end of the day we all have a choice to use the forums or not to use them.
Do you mind me asking Cathy59 what type of rare tumour you had.
over and out X
Lol, Kippy! We could put it all together and enter it for a dissertation!!! My tumour is an intracystic papillary carcinoma. I had the insitu version so very lucky. There is one other lady who uses this forum who has one, but to date havent found anyone else.
Hello Jane
I have read your comments on the secondary board regarding this thread.
I am disappointed that you have decided to refer to this thread and the comments made here (extremely inaccurately I think) without allowing those of us engaged in the thread the opportunity to participate or respond.
I have explained before that my comments were not intended to insult anyone but you have unfortunately chosen to perpetuate this notion.
I shall endeavour to explain my position once more as I don’t like my words and opinions being misinterpreted, misrepresented or distorted.
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Veterans to me are people with knowledge and experience. I am used to the US definition of the term. It is a term of status and respect. My cousin has been living with endometrial and bowel cancer for 8 years. She calls herself a cancer veteran. She is 29 years old.
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We were discussing the role of information derived from forums. My belief is that forums are not representative of breast cancer in all of its forms because the information contained in them is limited by the experience and contributions of forum participants.
3)The most enthusiastic participants of a forum will have their opinion “out there” in greater quantities than those who don’t post so often. Ergo their opinion becomes a “dominant” experience/opinion. This is my interpretation of all internet forums not just this one. It is not a damning indictment - it is an objective opinion.
There was no accusation of people being “bitter” (your word) or any inference of anything negative or malign. There was no inference of anything derogatory at all.
I do hope that has cleared the matter up once and for all. If you do have further problems regarding the comments made on this thread I hope that you raise the matter here ON this thread rather than elsewhere so that participants are not denied the opportunity to respond.
As you will appreciate it is unpleasant being slagged off behind one’s back.
We all have breast cancer. All of us. We are all staring down the barrel of a gun.
Thank you & good luck.
Molly.
well said, MsMolly
A
I did read that thread also and felt that your comments were taken the wrong way. I hope this clarifies things now
I was just going to ignore this as have pmd msmolly, but as others have picked up this is what I said:
Hi there
Sorry…no intention of slagging you off behind your back…my points were general ones…these issues have happened repeatedly…look forward to more debates with you
best wishes and hope treatment OK as it can be for you
Jane