It concerns me that there are so many posters warning other people not to use the above. I just don’t get it.
Knowledge is power. Understanding what we may (or may not) be facing is surely better than remaining ignorant. And if breast cancer is confirmed, how much easier it will be to face if you are well versed in the processes. This old idea of ‘doctor knows best’ is well past its sell-by date and surely we owe it to the medical professionals working on our behalf to be as well-informed as possible?
Of course its bad to take things too far. I once had a neighbour who spent her days reading medical text books and if she heard me coughing in the garden, would call over the fence telling me I might have lung cancer. But once you’ve got a diagnosis and as soon as you’ve left your oncologists office you have a thousand questions, surely its only natural to do some research?
I hate this idea of ‘women won’t understand the medical jargon’ or ‘it may frighten them.’ I find most available medical data pretty easy to follow and a lot of it is very reassuring. Above all, it makes one realises what enormous steps forward have been made and how the vast majority of us will come through a difficult diagnosis. The days when people put their heads in the sand or talked in whispers about the big C must surely be put behind us. We need to be treated as adults and partners in the treatments that may lie ahead.
I have used Dr Google at every stage of my several different diagnoses and on one occasion it undoubtedly saved me from possible damage due to an adverse reaction to a particular chemo drug which had NOT been picked up by the hospital. Okay, that is rare but, come on ladies, and do your homework. Get well-informed and in charge of what is happening to your body. YOU are in control, not cancer
OMG I feel exactly the same way. I get the rationale between perhaps sometimes spiralling late at night reading negative posts on forums (because let’s be honest no one really comes on & says I took this drug and it was great and I had no SE etc etc) and likewise don’t let Susan from Hull on a forum somewhere who says this happened to her influence your decisions about your treatment.
But like you, having the basic understanding and knowledge is invaluable - most of us knew nothing about this before we got it so having the confidence to advocate for ourselves is so important.
I am under the care of 2 hospitals across different trusts, as I think many are too & sometimes things get missed or glossed over so again having read around the subject & knowing what the protocols are and should be etc is so important.
I have even had a BCN say to me (upon me asking for a copy of my MRI report) “you won’t understand it”. That’s for me to judge surely, or educate myself to understand it if I don’t.
I do find myself wondering if men get the same kind of messaging….
Exactly how I feel. Posters with a diagnosis pending get told not to do any research but they never explain why. Are we to presume that they think ‘the little woman in question’ is too stupid to understand medical terminology or that it is something she really shouldn’t bother her pretty little head about? Doctor will tell you in his own good time…Really?
The logical conclusion of that is if the diagnosis is confirmed, the poor medics have to explain everything to somebody who is probably in shock and can’t take it in. Are there really still women out there unable to cope with hearing the plain truth about what is happening to their body? Like yourself, I am under the care of different hospitals and it is my job to be the co-ordinator of what is happening. Nobody else’s, MY JOB.
I warn others to use Dr. Google with caution. Look at the dates of the papers you read. Understand that everything is going to be slightly dated because that’s just the way it works. And if you have questions, your first resource should be your doctor. But do I used Dr. Google? Hell yes. From the beginning every step of the way. And it’s been invaluable. It’s why I started zolodrenic acid after all. I noticed my rising ALP rates and even though my doctors weren’t concerned I was. Researched and researched until I finally believed that it was probably because my bone density was decreasing too quickly to be replenished. Pushed to start infusions, did last year, and four months later when I was checked again my ALP went back down to a very normal rate. So there you go. No one is going to know your body like you do so by all means educate yourself. But remember that not all sources all equal, not all things are correct that you read and be very mindful of that so that you don’t make decisions based on erroneous information.
I do understand why people say stay away from Google. It does have historical information that is out of date, and it’s also easy to read information that may not be relevant. And of course, some people just want someone else to deal with their problem or simply don’t want to know the extras. No arguments from me.
Having said that, I’m a competent internet user, and steer away from sites that look and sound misleading. I was looking up something to treat a minor burn from the oven…there are sites out there that try to scaremonger and in this case, I could have believed I was going to get gangrene and need my hand amputating! Those sites are not helpful.
So yes, caution is required but there are many very good, official medical sites other than this, such as Cancer Research and MacMillan, and others worldwide e.g America
Without those sites I would still be living with the snippets of information given to me by my medical team. I’m not criticising the medics they are trained to give you the more positive aspects. But I now know and have questioned some elements of my treatment thanks to Google. It opened up conversations that would otherwise been overlooked.
I say……use the internet for support material, but always discuss your findings with your medical team before you make any decisions based on your discoveries.
X
I understand where you’re coming from I’m not someone who likes to be patronized or drip fed information at a rate that the Drs. are comfortable with - I want as much of the picture as possible and as soon as possible. I remember when I was told I most probably had cancer being told that I didn’t need to know about radiotherapy at that stage - but I felt that I did want to know as much of the picture as possible. I especially don’t like being lied to eg ; just 1 in 10 people taking aromatase inhibitors suffer with joint pain and it often clears up in 3 months - don’t believe that anymore . Or having the truth withheld from me - after my retinal vein occlusion I had to ask why although my vision initially improved with treatment it hadn’t improved any further and only then did a very kind Dr. tell me that I had had a second occlusion on top of the first and that it wasn’t going to improve much more - I was devastated but I needed to hear it.
I have discovered that Google can give you the information the wrong way around . An example ; after my retinal vein occlusion I was asked if I had sleep apnea . I was in denial and said no and actually I had none of the symptoms that Google said I should be having if I had sleep apnea - like falling asleep in the middle of a conversation or falling asleep in the day. The treatment for sleep apnea is CPAP therapy - I googled that and it said that a large proportion of CPAP users have retinal vein occlusion . The cause and effect was not made at all clear - it read as though the CPAP caused the CRVO rather than being part of the treatment to prevent another one. You need to be able to interpret the results and unfortunately not everyone can.
Furthermore Google is just artificial intelligence and it shows you more and more of what you’re looking at or asking for - just the same as if you hold a particular political view and you Google something that supports that view and read it it will then show you similar articles which confirm what you want to believe whether there’s any truth in it or not .If you have just been told you’ve got / might have cancer and you’re scared you’re going to die if you type the wrong word into that little box it will show you all the worst outcomes . Unfortunately I think this is what a lot of people with a new diagnosis or awaiting one end up doing even though it’s not their intention .The information is often out of date or contradictory - how do you pick your way through it all unless you you get a fast track degree in the subject or get someone who has to interpret it and put it into perspective for you- the problem is finding the right people to do that for you and for this reason I think that the helpline and services on here are invaluable . It’s during that initial phase when people are very anxious that I advise people not to Google as it’s just a tool that like any other tool is best used when you’ve got a clear head.
I think the internet can be invaluable but the time I would advise caution is the time when you don’t actually know your diagnosis and you’re waiting for those first results. Even though I was told before biopsy that it was likely cancer, I obviously wasn’t aware what type, grade, stage etc. Googling at that point was completely counter-productive and just added to my already massive anxiety as I self-diagnosed the absolute worst case scenario. Once I knew my diagnosis, I was able to make far better use of internet research, and I do think we should all be as informed as possible about what is happening in our own bodies. But I still don’t think I’d recommend googling before your diagnosis is confirmed - it really did me no good at all. That’s just me though!
Another two things came to mind after my first post.
I asked my oncologist when prescribing Tamoxifen if it was alright with my epilepsy medication. She jumped onto Google, looked at the first result, and said”yes it should be fine”. It was the same site I had used, but wanted professional confirmation.
And then there was the instance where I asked the BC nurses about risk of spread via cancer cells in blood vessel (which had been slipped into my diagnosis). The initial response was, they’d not heard of that and only in the lymph nodes. And had to rebook oncologist by which time I had researched, and had questions prepared to ask.
Those were two very important questions for me. I still support and value their medical skills, and I am proud of our NHS, but they can only do so much, and they can’t possibly know the answer to every question straight up.
Hence I’m an advocate of Google used with caution, and as ive said earlier, always discuss finding before making any decisions.
This is an interesting topic. I was a researcher in a former life and always need to have all the details before making any decisions. Dr. Google can be great because it can lead you to science journals that will give explanations that perhaps your doctors won’t give or don’t have time to give. I was just telling my husband the other day that Google has gotten very specific with their usage of AI. We can look up the science and then throw a question or two at the AI and when there is a match we can breath easier.
Heck, there is even a website where you can cut and paste your pathology and it will rewrite your report for you in simpler language. I’m in a holding pattern right now waiting for surgery next month. If I didn’t have Google to use, I’d be a basket case. Groups like this one and Reddit are also very helpful. Everyone’s experiences are different, but also similar enough to have an idea of what’s to come.
I research absolutely everything. I subscribe to medical resources and I read academic papers, especially clinical trial data relevant to my situation. I am careful to use relatively recent and properly published information. It has enabled me to be my own advocate. It’s enabled me to understand how particular drugs work and the risks involved (this was particularly helpful when I had a checkpoint inhibitor induced adverse event). What I don’t do is read whack job ideas, and I read about other people’s experiences with caution. I also dislike the implication of “the poor little woman won’t understand it” when faced with such advice.
Very well put. I live alone so when I got my diagnosis, it was vital to be able to research the subject slowly and carefully and weigh up all my options. I always advise people to get their own minds sorted before they start spreading the news to the nearest and dearest. Sure, you want consolation and support, but your loved ones are going to be paralysed with fear if you just wade in with a tearful blunt diagnosis. Let them think you are treating your medical condition in the same way as you would any other problem. Information gathering first, treatment plan agreed, condition monitored and options considered.
Hi. I have very high risk breast cancer. It was in most of my lymph nodes and was extremely large.
To be honest, dr google sent my anxiety through the roof and sent me into despair.
Also, there were / are so many studies that talk about the number of deaths per study caused by cancer.
I was diagnosed with high risk breast cancer in 2021, yet I’m still here with no sign of recurrence yet.
I am clever enough to understand the statistics and data, it just terrified me.
So, I am one of those people who says don’t use dr google as I wish someone had said it to me.
Also, if you are going to look online use trusted sources like MacMillan or Breast cancer now in my opinion.
Also, even a recent study published a few years ago or even more recently is still a little out of date because science seems to be progressing so well and survival seems to be improving.
I think my mental health is doing a lot better now since I’ve stopped googling.
I get why someone low risk, with low grade cancer caught early might find it comforting to google. But I’m 43 and was riddled with guilt when diagnoses age 40 and I’d recommend people stage 3 or higher avoid dr google in my opinion.
@teddy271 Okay I was on board with this discussion but the last response to @notdoneyet was unnecessarily abrupt. People are totally entitled to their own opinions and methods of coping with their situations without snarky comments just because their opinion doesn’t match your own. Please can we not turn this forum into an X type platform for people to force opinions onto others and belittle anyone who doesn’t agree?!
If it wasn’t for Google I wouldn’t know what it was all about, after my diagnosis, I learned so much that my surgeon said she felt like she was talking to a doctor, you have to keep routing for the answers, and go to different country’s for their trial’s, I’ve learned so much from my research, it’s amazing.
I’ve saved myself all that anxiety of not knowing, and getting information in dribs and drabs.
I am sorry you felt my views to be poorly expressed. I have removed the post out of respect for your feelings although I stand by my sentiments. I remain in shock at the idea that women are better remaining in ignorance if their diagnosis is severe
Hi, notdonyet,
I didn’t find your response abrupt and understand your view. I’m almost 2 years from diagnosis with a high risk cancer and I can’t help but google as I like to understand as much as I can.
Initially Dr Google did increase my anxiety and to be honest that had its good points, as I sorted lots of admin stuff out that I needed to do but had put off. Two years down the line I have come to terms and accept life with the uncertainty of breast cancer. I am still receiving treatment and realise that I’ve never had control over my life span and I appreciate life, it’s precious.
I found them to be poorly expressed, especially the last parting comment ‘good luck’ which I found to be sarcastic.
I’m getting to a stage where I can move on with my life. I only occasionally pop on this forum now to reassure high risk people like me that you can, a few years later at least, be here without a recurrence,
When I was first diagnosed and tried to find evidence of that I found it difficult to find.
To be honest your reply did offend me and I thought of a lot of things I could say back.
I’ve done loads of research and know exactly where I stand.
Your reply to me though has made me decide to back away from this forum as I’m now feeling anxious again when I was completely fine.
Thank you for removing your post.
I am going to stop updates, so if you do reply I probably won’t see it.
Good morning all . As Community Champions we do often advise people to stay away from “Dr Google” . The people we usually give this advice to are people who are in a high state of anxiety and fear and/or who are totally overwhelmed . They are often people who’ve found a lump who Google “breast lumps” and immediately jump to breast cancer , people who have been just diagnosed and are totally overwhelmed with information , people who’ve had a diagnosis of certain type or grade / stage of cancer who when they Google find statistics and outcomes that terrify them and that are based on treatments used 10 plus years ago . At these points frantically googling often just fuels fear and is not helpful .
There is most definitely a helpful side to Google but you need to be in the right place mentally to fully take advantage of the information you find there .
Please be respectful of each other views and express your own views kindly , you have no idea what place mentally the people you are responding to are in .
Hmm. You make valid points. I apologised if I had caused offence and removed the post, but received a less than gracious reply. When I wish someone good luck, that is exactly what I mean. Good luck. May I gently point out that posters participating in this discussion agree with my point of view by a huge majority and it is obviously a topic of interest.
But we live in an age of choosing to take offence so I suppose I should have expected it. Of course this forum is for everybody and, as such, must encompass a huge different variety of personalities, opinions and response to diagnosis. I belong to the ‘take charge of your own life’ brigade but I respect that there are many others that don’t. Where I have a problem is treating women as somehow not able to handle their situation. It should surely not need saying that when doing research, it is helpful to evaluate rather than fly into a state because one website somewhere says something particularly gloomy. I treat women as adults whose mental processes are not diminished by cancer. If they make an informed decision not to learn more about the disease then that is a right and proper decision for them to make. What I disagree with is those who advocate ignorance and then call foul because others take a different view. Adding that a post on a discussion forum has now made them anxious is what I would term passive aggressive.