Am I the only one¦
Am I the only one¦ ¦ who has an unquenchable thirst for knowledge about her own particular breast cancer? I know that I have become obsessive about finding out every conceivable fact associated with mine, and am driving all and sundry mad with this!
My multidisciplinary team has been excellent in trying to help me find answers to my interminable questions; my onc even consulted with an eminent professor of oncology about my particular, unusual case (HER2+, but with other prognostic indicators good).
So why do I still probe and dissect? I know that I am pi**ing everybody off with this, but can’t seem to help myself.
I am only five months from surgery, and therefore have not had a repeat mammogram yet. Will it get any better when I have had (hopefully) the reassurance of a clear result?
Mcgle
I’m the same - it’s almost an obsession. I’m worse now that treatment has ended and my head is clearer. I can still think of unanswered questions. I am considering writing to my onc and asking for copies of all relevant papers in my file but i haven’t quite worked up the courage yet.
My prognosis isn’t brilliant so i don’t know whether i’m doing it to try to find positives. I tend to think the worst and that my onc always put a positive spin on everything as he’s a real believer in the importance of being positive.
I constantly put phrases into google to find out things but it’s really very frustrating. Am I obsessive?
Kelley
For Kelley Is it the teacher in us?!
Mcgle
for Kelley and Mcgle don’t think it can be the teacher in you both, i’m the same and i’m not a teacher but i 'm nursery nurse!!!
i’m always scouring the web to find out things, sometimes i don’t like what i read but it doesn’t stop me from looking for more information.
reckon i must drive people mad as well, i know some people prefer to not look at info., etc., but i feel i need to educate myself [sorry no pun intended wot with you 2 being teachers!!!]
karen
Does it help knowing Until I started reading these forums I never felt the need to know anything about my cancer, going back 20 years and now my recurrence.
It was only by reading everyone’s details that I realised I didn’t know anything about mine, just that it was hormone related as I have to take Tamoxifen. It wasn’t until a month or so after surgery that I went to the Gp and asked what type I had.
I’ve never questioned the fact that I wouldn’t benefit from chemo, haven’t got a clue as to my prognosis and what chance there is of yet another recurrence.
Maybe I should ask more questions but do I want the answers.
Jan
You are not alone - Every day I sit at my computer looking at every site I can think of. I google breast cancer news every day looking for any new stories and treatments. I am totally self obsessive - however I have now got to the point where I do not talk about it much to anyone as I know people are sick of hearing about it, and now my main treatment has ended most people think everything is over and ok. That is why the web is so good for me as I want to know everything I can. I do get down when I read the negatives and although my prognosis is quite good I had vascular invasion which my consultant said was unusual in a case such as mine as it was usually found in more agressive cases and this depresses me. I am always googlin vascular invasion. I have a morbid interest in everyone else’s prognosis and even on this site I always look to see everyone’s profile to see if it is similar to mine. I have my first check up in a week since rads finished and although I am dreading it I want to be able to ask lots of questions again. Saying that the last time I went I had a list of questions and my onc peered at me over his glasses and said I wasn’t unique. So do not hold out much for info from him again. Sandra
And me I am exactly the same and could have written these posts myself.
I am 22 months since diagnosis and still feel obsessed with it all. I think I have more issues and worries now than at any other time,the fear of recurrance has really set in and I really need to find a way of keeping that fear under control. I was given a relativley ‘good’ prognosis but I quite often forget this fact and worry about the not so good aspects like the fact that I had 2 tumours one was quite big and also it was lobular b.c. so has a higher risk of a new primary in the other breast and lobulars are difficult to detect on screening.
I also don’t talk about the b.c. much outside of this site and to the friends I have met on here. I wish I could be the type of person that doesn’t ask question or need to know everything but we can’t change the way we are can we? I know a lot of people that were posting on here when I first found it just over a year ago don’t post anymore.Maybe there comes a time when you feel enough is enough and just have to stop being involved with the websites in order to try and put b.c. to the back of your mind. I doubt I will ever be able to do that. I get some comfort from knowing there are people out there who know what I am going through even though I am almost 2 years post diagnosis.
Sandra hope your appt. next week is a ‘good’ one.
Best wishes to you all
Kim.
Nightmare Patient - asks too many questions Is I’m sure written on my notes somewhere - I always have a long list of questions (I have a healthcare background so I tend to start a conversation with “I read about … on medline” .
I don’t like a lot of what I read (so why do it says my husband??) - Why indeed, (my prognosis is not good -but as I say on a regular basis this actually means very little, as good or bad no one knows what side of a survival line we will fall - a fact very sadly brought back home to me again this weekend with the news of the death of a BC friend).
Why do I do it - I know a fair bit - I need to fill in the gaps - if I don’t know I will only wonder and to me the unknown is worse. The trouble is, the more I know, more questions can be raised, so the more info is needed.
Surgeon and Oncologist are both very good - listen to what I have to say - I feel that I am “involved” in my care as far as is possible.
It is hard at times if I read “new” developments/reports/trials etc. etc. as it is tempting to think “why didn’t I have that?” or “perhaps that would have been better for me?” I have to remind myself that I am where I am, treated in the way I have been and that I need to look forward and live my life as well as I can for as long as I can.
Sandra
Sandra… …are you snoopy from breakthrough site?
karen
Karen MY daughters idea - can’t work out how to change it so its stuck( got a snoopy avatar on the other site!!)
Sandra
I cant help myself either, there are days when i try not to get on the computer but these are few and far between, i also google breast cancer and then scare myself silly, my husband tells me off but i cant stop, but to be honest im glad i have educated myself on bc, because i can now educate others i.e. my sisters, friends etc… there are so many people out there who think bc is a good cancer to get (i have actually been told this) well now i can educate them… and knowledge is power
alison x
Musa Meyer’s book Apologies to those who’'ve seen me post about this before.
Musa Meyer has written an excellent book called After Breast Cancer. In it she says that some women with breast cancer are ‘information seekers’ and some are ‘minimisers.’ I’m certainly an information seeker who wants to know as much as possible about my cancer. I think its my way of feeling in control (other people have other kinds of strategies like funny diets and healing but thats not my way.) The book is really good for anyone who wants to keep thinking realistically about the implications of living with breast cancer.
Having said this I find that the further from diagnosis I get the less new information I want. I found out a lot very early on and I’ve noticed I’m less interested in the minutiae of treatments than some other people.
What fascinates me is the process of living with cancer, the different ways we learn to live with it, how people live with getting recurrence, what sense we make of living…and of dying…how people with cancer are treated and stereotyped, the myths about cancer etc etc.
Jane
Asking questions I do it because I’m inquisitive about breast cancer. I feel I might as well know as much as I can about the beast. I sometime ask questions which are absolutely nothing to do with my own circumstances, but because they strike me as interesting. I think many medics like patients to ask questions as it gets them thinking and builds up the doctor - patient relationship.
Regarding the good/not so good prognosis. I know that there have been many observations on the forum that this doesn’t really mean a lot as there are known cases of people with good prognoses who ultimately do worse than those with a poor prognosis.
I venture to suggest why that may be. If you have a low grade cancer, good prognosis and are thought to be at low risk of recurrence or secondaries, you will have less adjuvant treatment than those who are deemed to be at higher risk. For example, you probably won’t have chemo if you have no cancer in your lymph nodes. Therefore, your continued NED is based on the assumption that no undetected cancer cells have escaped and are growing elsewhere in your body. If this is not the case and rogue cells are at large, you have not had one of the lines of defence a person with higher grade tumours/lymph node involvement has had - chemo- so the good prognosis is dependent on the accuracy of your medics’ judgement that chemo is not necessary and I guess occasionally they get it wrong.
I hope I haven’t scared anyone who has a good prognosis. I have a good prognosis and I just wanted to do a reality check and think through why some people with a good prognosis might not do as well as expected.
Another thought is that the longer we all live after a breast cancer diagnosis, the more new developments in surgery and treatment we will see and inevitably we will feel rather sad that they weren’t available when we needed them.(Sentinal Node Biopsy for example) But such is medical progress, and I suppose we can take some comfort in the fact that if we have recurrences in later life, there may well be treatments available second time round which weren’t available first time round. I’m in a “cup half full” frame of mind at the moment so I’m ignoring NICE, postcode lottery and all that stuff.
Wow, ladies, what a load of responses!! It was reassuring to read that I am not alone in my thirst for knowledge about our condition, and it was interesting to read that Daphne likes to discover things about bc which don’t necessarily pertain to her own. Your comments about adjuvant therapy also hit home, Daphne, as I did not have chemo and have not been recommended herceptin either. But whatever our prognosis, we all have to live with the fear of recurrence¦
Kelley – I, too, would want to have copies of relevant papers relating to my case, and will be asking for these next week. Good or bad, I need to know¦
Karen – I can’t help scouring the web for info either!
Janice – maybe you don’t want to find out any more because of your recurrence?
Sandra (Humble) – know what you mean about obsessive, as I am now glued to the HER2 site! Also, my nearest and dearest are worn down with ‘cancer fatigue’!
Kim – I was interested to read your comment about people no longer posting. But you can’t help wondering if there might be another reason¦
Sandra (sip11) – I am sure I have been branded the ‘nightmare patient’, too! My onc even kept a copy of my last list of questions on file for the next unfortunate individual (if not himself) who comes across me. There will be another list next week, as well as downloaded info which I think may be relevant to my case¦
Alison15 – people can’t understand that we have all stared down the barrel of a shotgun, and that memory never leaves us!
JaneRA – when I first joined this site, you upbraided me (gently) for just concentrating on the positives. Clearly, you realised that I had not yet come to terms with what had happened, and now I think I have. There are still more ‘positive’ days than ‘negative’ ones, but trying to remain upbeat all the time is not realistic. In my opinion, it is better to be forewarned and forearmed for whatever lies ahead¦
Thank you, everyone, for your replies.
Mcgle
obsessive Hi everyone, from another ‘obsessive’.
A very interesting thread, and one I’ve thought about a lot
My good friend was diagnosed 6 weeks before me, and we noticed how different our ways of dealing with bc are. both treated at same hosp. She had WLE and rads, I had mast and recon.
She has never been on a bc site, or googled anything. She hasn’t asked many questions, and trusts her Drs.
I am the obsessive, going for comp. therapies, changing my diet (actually she’s dairy free and organic now too). Constant reading, researching and discussing. Endless questions to onc, BCN and surgeon.
Will it make any difference to our journey, or indeed , outcome?
I sometimes think I have spent so much time and energy worrying, I wish I was more like her!
I guess you can’t help how you are. I just like to feel I’m in control of my treatment, and as an ex-nurse am naturally distrustful of the system! sad really.
Helen
Thankyou Mr Internet Inventor Prior to breast cancer I had no interest in learning to use a computer. When a friend gave me an old one (huge, cumbersome and S L O W) he said he knew I would need it to keep myself informed. How right he was!
As you say, knowledge is power.
Being able to access lots of new cancer information also allows us to acknowledge and live with our cancer in a ‘real’ way even if we can’t talk about it much in the wider world.
Logging on to this website does too. This is the cancer ‘dimention’ in my life and it means I’m not living it in a vacuum.
And I think none of the above makes any sense but I hope you can get the gist!!
It is great to know that we are all out there xxx
How sad is this that I am already looking for replies to my Helen – wish I could be more like your friend! You’re right that spending an inordinate amount of time worrying is probably not productive, but we can’t help the way we are! And if we need to learn, then we need to learn!
Dare I ask why you (as an ex-nurse) are so distrustful of the system?
Chalee – like you, I did not know much about computers until a few years ago, when I was going into schools (as a supply teacher) and expected to take IT lessons. Thought I had better learn pretty damn quick! So glad I did now¦
Mcgle
Thirst for knowldege Hello Mcgle and all others!
I think the quest for knowledge and answers about breast cancer increases after treatment. You may not necessarily stop your need to probe and question your md team about your bc - I think it too has something to do with the individual. Did you always have an enquiring mind prior to bc about other issues? If so, it stands to reason that you’ll also be ‘interested’ in learning as much as you can about your own disease - it’s yours after all and whilst the medical teams, carers and friends do a great deal to help we all must take ownership for our health - perhaps that’s what you are doing?
I am nearing the end of my treatment 3xops; chemo and radio) and whilst I’ve always been on google (and accessing medical sites when I can get in!) and researching throughout the last year now I’m even more anxious to fid out more! But as I say above, before bc (bbc!) I liked to find out as much as possible about things/issues that affected or interested me, so maybe that’s why I haven’t changed my attitude just because I had bc.
Once treatment is over you are left (I think) pretty much to your own devices - it’d be great to be ‘weaned off’ the medical assistance and care. Are patients given a leaflet or instructions on coping and checking post treatment and inbetween the regular medical check-ups? I’ll be taking tamoxifen and whilst I know that its benefits outweigh the risks of other cancers, what are we supposed to look for, do we get yearly gynae check-ups as a precautionary tale, etc?
I’d ideally too love to have my notes but don’t think there is too much postiive in there (as I did get a sneak look a while ago and was given a poor prognosis on the NI scale). I think we can only hope that our medical team - onc/surgeon has the right approach and is able to answer questions honestly and openly.
Anyway, hope this helps and sorry for rambling on!
Morgan
obsessive too Hi Mcgle and others
I’m sure you know from other postings of mine Mcgle that I have wanted to find out as mcuh as I can about my cancer.
My Mum died of bowel cancer and whilst she was being treated she never once asked a single question, just “did as she was told”. I found it extraordinary and I found it very difficult to accept and to respect that this was her way of dealing with it.
I have been totally the reverse, always asking questions, looking things up on the internet, reading medical journals etc. I have to say that this has helped in a lot of ways. My partner and I went to my first oncology appointment armed with info about delays in radiotherapy and why it wasn’t good - we had been told by BC Nurse that it was 18+ week wait in my area (that’s after waiting for an onc appointment). Instead of getting fobbed off I was sent out of area for treatment.
I only got an HER2 test done because I had bothered to read up about it and to insist on it. When it came back positive I did loads of reading up - when I also found out about my negative test result I then looked into methods of testing etc. I think I could have gone on Mastermind with it as my specialist subject! It made it easier to ask informed questions though. As my GP (great lady) said to me - you need to know what questions to ask.
I don’t tend to google so much these days as having researched I do feel I have had the right treatment - but it was important me to find out as much as I could to come to that realisation.
I do fear recurrence especially with the HER2 thing but I don’t think my fear is any greater for seeking out more information. I like to think that it gives me a realistic view on what might happen - therefore making recurrence less of a shock.
i was really interested in your views Daphne, I didn’t have chemo (clear lymph nodes) it came to light too late that I was (probably) HER2 positive to have chemo and Herceptin. I met the criteria for the HERA trial and I think that in the future people with my type of cancer will be treated differently (they already are in France). What I have found though in the past that my fears of recurrence etc are dismissed too readily for my liking - I keep being told that my cancer was a “good cancer” (still don’t think the words “good” and “cancer” go together!) and that I shouldn’t worry. My chance of recurrence (not including HER2+) from adjuvant online are 1 in 4 - I personally don’t call that nothing to worry about. I do think that sometimes people with good prognosis are not investigated quite so thoroughly as those less fortunate with a bad prognosis. Maybe this is why some slip through the net.
bjj