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.
This post has been removed due to our community guidelines
Quite an emotive topic I think! I don’t like being treatedas not being able to handle my situation but will freely admit I haven’t been able to handle it at times! Unfortunately I am a fly off the handle type - my emotional responses always kick in first and I have to take time to mull things over and look at things rationally. My mother was diagnosed at 29 and died aged 38 when I was 8, so I think I am predisposed to find the doom and gloom more believable, which means Dr Google can be an emotional minefield. I have had to be very, very careful as to what I research and when in order to protect my mental state. Saying that, I’m perfectly satisfied that I know enough about my diagnosis and treatment plan to enable me to make informed decisions and challenge where necessary. (I also spent 20 years being gaslit by medical professionals about a lifelong condition I have which they were adamant I didn’t…I finally got diagnosed last year aged 46 so I totally get we have to advocate for ourselves…I’m practically an expert on my condition now 
But as it doesn’t carry the emotional baggage for me that cancer does, I found that a lot easier).
Google isn’t the only source of information available . Because I asked so many questions ( or maybe to stop me asking them of her ) after second screening my BCN sent me a huge pile of info. including many publications from Breast Cancer Now and other organizations . This allowed me to build up a better picture of what I was dealing with and the treatments etc. This was helpful when I did start to use Google as I had a much better idea of what was applicable to my case and what wasn’t - there were a whole load of things I could safely ignore and I didn’t allow myself to be pulled in to a lot of the other stuff that pops up. I was put forward for and accepted a medical trial so I did Google that - but not until I had recovered a bit from the initial diagnosis. Google also helped me to decide that I wasn’t going to take Tamoxifen but the initial information that started me on that quest came as a result of reading about the possible ocular side effects on the drug leaflet . When I had my retinal vein occlusion I was diagnosed at an emergency clinic and not given much information and attempted to Google . This was stressful firstly because my sight was so that I could only do it for a short time - that was scary in itself .It also led me to a forum and reading what some people had to say frightened the hell out of me and turned not to be applicable to my situation - however I didn’t know that at the time. Fortunately I managed to find number for the RNIB who supported me as did a local sight loss centre . When I first got BC I was very careful what I looked at on Google because of my experience with that and for that reason I didn’t join the forum for some time either .
Because breast cancer is such a common condition and has been taken up as a cause by so many there is almost too much information about it. If you can approach it with a scientific spirit then you can learn a lot from Google but if you’re spiralling with anxiety then I know from experience that it can make it worse. I think it’s important to use other sources of information as well and for those of us who have a good relationship with their medical team then use them - even if you Google as well . I’m not unfamiliar with the kind of Dr. you describe - at my most recent eye appointment I saw a Dr. who told me I knew far too much ( and I don’t believe he was joking ) . I’m glad that you and many people have managed to learn and gain a degree of control over your own destiny by using Google - it has helped me too but it isn’t the only source of information our there and I don’t think it’s fair to suggest that people who become anxious from Google are ignorant or not wanting to take charge of their own destiny .
Hi,
It’s clear this is a topic which has lots of different points of view, given the spirited discussion.
Everyone’s experience is different. We know that for some people consulting Google can be overwhelming and unhelpful due to the large amounts of conflicting information that can be found online. Our specialist nurses are here for you if you have clinical questions or concerns.
We would like to remind you of our community guidelines to keep conversation kind and respectful of different opinions. You can find out more about our community guidelines and how we moderate the forum here: How and why we moderate & forum guidelines - Welcome and how to use the forum / How to get started - Breast Cancer Now forum.
Sending our warmest,
Lucy
Hi
As someone who has cautioned the use of Dr Google i believe when you are probably in one of the most vulnerable periods of your life you need to be seeking up to date information, guidance, support and answers from your team, breast nurses, or trusted sources such as Breast Cancer Now or Macmillan because we are all individually dealing with whatever this throws at us and our way forward is as unique as we are
To put forward your opinions experience and voice on this forum is to help those who seek assurance, answers or for when it is simply a safe place to ask or vent when needed
As far as i know no one has ever used the ’ doctor knows best card’ or implied or inferred that we as individuals are incapable
Humans are naturally inquisitive and we all want answers to enable us to make informed decisions…just do so from trusted, supportive sources
We had a wonderful commenter here when I first started reading. She was Jaybro. I haven’t heard from her in awhile and fear the worst but regardless her words to me will last forever. She was one of those who cautioned others in the use of Dr. Google and through her I realized that everybody has different ways of dealing with trauma. Some like to research, research and research some more. I’m one of those and I will say at first it was horribly daunting, stressful, and anxiety producing. I wish I could have stopped at that point but couldn’t. Eventually though all that information has fell in it’s proper place and I am a much more involved and informed patient because of it. But am I better off? Don’t know to be honest. I followed what was recommended to me just like Jaybro and none of my research encouraged me to buck my doctors whatsoever. It did drive my decision to take zolodrenic acid infusions but I probably would have been fine without them. Jaybro stated that she never really knew many details of her diagnosis at all and coped simply through meditation. Her care was great and she was doing much better for longer than doctors expected even though she asked few questions. So truly I don’t think any way of coping or dealing is wrong. All any of us can do is evaluate what we need to feel as safe as possible in a world suddenly gone insane and then do it. If that means Dr. Google, fine. But if it doesn’t that’s okay, too.
I read a lot of Jaybro’s posts when I first joined the forum and found them very helpful I have also been thinking about her . Xx
Jaybro was lovely to me when I first joined the forum back in the summer of 2022. We had very different approaches, for example she could never understand my compulsion to get hold of my histology report as she didn’t have the need to know, but her posts were full of wisdom and compassion. I know she became heavily involved in a Facebook group for those with mets and also was very upset when her oncologist moved on, both around the time she stopped posting here. I have often wondered about her and hope she is doing well.
I think Jaybro stopped posting when the site replatforming happened. I have always hoped it was just that that interrupted her, rather than the other obvious possibility.
Oh I hope so. I miss her but would much prefer that she is living a lovely life somewhere else out of here.
That is what I am choosing to believe.
I agree, I want to know everything, I researched all avenues, every medication, as many case studies as I could, I’ve looked at future medicines, future procedures, I follow research from all over the world. 2 of my friends who’ve been through this didn’t even know what stage they were or what size their tumours were. This has been my way of coping, I’ve calmed down now but still very interested in future treatments. My friends didn’t want to know anything and that’s fine too
I think like most things in life Dr Google has its positives and negatives. I’m an ex nurse so jargon is not a problem but sorting the chaff from the wheat can be difficult. I want Dr Google to tell me it will be ok but he can’t. I have given up on him as far as my secondary breast cancer is concerned. I have faith in my health care team who treat me like an adult.
The more I know, the better prepared I am. Plan for the worst and hope for the best. This is my 2nd go round after many, many years, but this time EVERYTHING is different. My situation is different, the test and scans are different and the treatment and surgery will be different. Not one of my doctors could tell me everything I wanted to know and sometimes I didn’t even know what to ask. I wanted an earlier visit with my MO before my upcoming surgery and then Dr. Google helped me to realize there was nothing my MO could say until the pathology was back anyway. Better to leave that time slot for someone who may really need it.
I don’t know if you will see this but I’m sorry that this has made you feel anxious again and sending love xx
I believe medical professional use a tool from the BNF to see if your medication interacts with others. They don’t just Google. I have been to many consultations and it appears they are just Goggling as they are using a computer. GP’s in the past used to have a very hefty book from the BNF to look for interactions or contraindications of drugs.
My last consultation, they typed in each drug on my repeat prescription to check for interactions while I sat and waited to confirm they was no problem with a new medicine.
You can use it aswell, see below.
I have found the internet invaluable to give me the extra background information that I felt I needed for my own diagnosis. I went to reliable sources BCN, CRUK, MacMillan, Predict, Dr Liz O’Riordan, MSKCC (to research Herbs interactions with prescribed medicines), academic papers and other reliable sources. I have so read The complete Guide to Breast Cancer By Dr Liz O’Riordan and Professor Tricia Greenhalgh, which they have recently updated. It’s a fantastic book but didn’t really touch on my bilateral diagnosis with 2 separate primary invasive tumours so I needed to search the internet. The internet provides a wealth on information but you need to be able to know what is reliable and what is not. There is something called the PIF tick for medical information to show that they have researched the subject matter.
At times the internet can be your worst enemy but it can also be your biggest supporter, such as this forum.
Oh it was definitely Google, I was stood next to her while I spelt out the name of the medication and she used a hyperlink to the web site drugs.com
The appointment didn’t go well with her, and I ended up going back a week later in tears. Then unexpectedly I get another appointment with a different oncologist, and he has changed my treatment plan. Bizzare?
That looks like it’s an American website as it’s approved by the FDA. I did just check some drug interactions with my own medication and it seems to work similar to the BNF my consultant used.
In future I would politely suggest they check the BNF as it’s provided by NICE not the FDA