Do you get the information that you want from the medics

Hi people

When I had my meet with the oncologist after my op I felt a reluctance for her to impart detailed information. I realise that some do not want to know it all. However, from the questions that I was asking it was obvious that I am the sort of person who needs detail and all of it!

She eventually asked me if I wanted a copy of the scan report and a copy of the histology report- of course I did. On a winning streak I asked for a copy of the MDT meeting notes when talking about me. Got the lot a few days later. Whilst I had to look up a few details it was useful to understand the disease.

What I found interesting in the meeting was that I had to ask what the grade was- surely one of the first things I should be told. Also when I was told basically 2 options- no chemo but to watch and wait and the chemo route. ( I am stage 1C1 mucinous). I asked what would she recommend- she just repeated the options. Just for fun I asked the question another twice with no recommendations each time. Luckily I had already decided what would be right for me but I was not impressed with the process.

All in all I felt I had to push for anything more than the basics even when it was obvious I wanted more.

I have gleaned much info from this site and others- thanks guys. You all give info freely and is much appreciated.

So I was interested if anyone else's experience and if I was expecting too much.

Fay

22 Replies

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  • Hi Fay,

    Yes I can relate to your experience and Im like you too in that I wanted to know everything too!

    After surgery when the full Path report was released my Surgeon rang me to tell me I had Cancer and it was clear cell and I looked that up myself on the Internet as he was backward in coming forward as the saying goes!

    I researched it and found it was grade 3. I then rang the CNS at the hospital I'd had my surgery and fed back everything I'd researched that afternoon to have it all confirmed. When I met my Onc for the first time I had two pages of A4 - one with things Id researched and just wanted to run past her or to have it confirmed and the other with a huge list of questions that I wanted answering! I asked for copies of my Path reports, letters etc.

    I think lots of Oncs don't give too much detail I suppose as lots of ladies don't want to know - that's definitely NOT me!!!

    I loved reading your post, I'm a visual person and could just see you repeating your questions throughout your meeting just to see if you'd get a different answer!!!

    Take care

    Clare 😀

  • Glad to know I not the only "awkward " one. Lol

    Fay

  • I think in my case, my oncologist was careful with the truth, rather than deliberately withholding information from me, but that only became apparent as I learnt some of the more shocking truths by reading posts on here 😔

    There were only two things that weren't explained to me - the stage of my cancer (I thought 2, but was actually 3), and whether any of my other non-gynae organs were impacted (I thought no, but turns out there was a cheeky bit of OC growing on my bladder). I requested copies of the 2nd CT scan report and the histology report which were very insightful- both terrifiying and reassuring at the same time.

  • Hi Yoshbodh

    Interesting. Careful is maybe a be better way to describe the info given.

    However, you learn. I will be asking for a copy of all future scans etc now that I know that you can.

    Cheers Fay

  • Hi Fay ... yes same experience here too... I found I had a mark on my liver that was in my first scan and there still on my second I stated that I didn't know that and the answer was why would I tell you it's benign ... huh so shocked I would like to read my reports and will be requesting them when I see the surgeons again in January ... I like to know what's going on it's my body ... I feel more in control ... I was also given option if chemo or no chemo but not given what they though would be best option for me it was a difficult decision to make ... such life altering decision not an easy time ... I'm sure I made right one even with all side affects I've given myself best chance of survival 😏

  • Hi Shellygirl

    It is curious how different information is given. I know they should tailor it to the person but I do think they should recognise who wants it all. Good to talk to others to see what happens.

    I wonder what they will say when you start asking for report copies.

    The awkward squad is growing-excellent.

    Fay

  • I wonder too I want to know what's going ... I feel they are hiding something for what reason I have no idea... I want to know!! They are the only source of information really .. frustrating xx

  • Hi Shellygirl

    As you are going to ask for the reports at the next meet in January- why don't you ask the CNS for them now so if you have any questions on them you can ask in January rather than later. Just a thought.

    Fay

  • A very good thought Fay ... I will certainly do that it makes more sense.. thank you 😊

  • Hi everyone

    So far I have been given scan copies and copies of all letters sent to GP giving full diagnosis without having to ask for them.

    I have also attended all meetings fully expecting the outcome as I like to google. This has helped in understanding what is being said to me and preparing a list if questions in advance.

    I have also addressed any outstanding queries or clarifications by email to my CNS as I like to receive written answers.

    So thumbs up for Royal Berks Reading.

    I believe knowledge is power!

    Xx

  • Hi Carole

    Really good to hear you get everything. This should be for all unless indicated otherwise.

    Fay

  • Carole, you must be quite near me! I've been treated at the Basingstoke and North Hampshire hospital - just up the road from the Royal Berks.

  • Hi yoshbosh

    I live near Wokingham. I had my surgery at Oxford

    Xx

  • I had my surgery in Southampton.

  • Unfortunately, some doctors are uncomfortable with imparting information which I think is a shame. I do, however, want a doctor who is bright and wise rather than communicative if I had to choose. Having both things is the ideal, isn't it! Xx

  • Hi Tina

    I had assumed most doctors are bright but not necessarily wise! I think some of it might be people skills and understanding what people want. I would hope if the Dr is lacking in this then the CNS would take up the slack. From the replies it seems that some are good at it.

    Fay

  • Hi Fay

    I was just told I had stage 3 PPC 5 years ago. The detail of high grade serous was only given to me when I had a second opinion last year . When I queried my original oncologist he said that when I was diagnosed I didn't want to know anything about my illness. In fact I had asked them not to give me prognosis just then. I see that as a different request and I did not mean I wanted to remain ignorant . Anything I learned it was from the good women on this site. As for asking the patient to make the decision I do not get that. What would they advise a loved one to do is a good question. I agree too that knowledge is power but now I find that armed with more knowledge my questions seem to irritate some medics. You can't win !

    XXX

  • Hi Molly

    They misinterpreted what you wanted. You wanted information but future predictions.

    Glad you have what you need now. I know that certainly new guidelines in NHS are to give patient choice but that should not mean cut out any guidance.

    Fay

  • Thanks Fay

    At least I got the information even if it took a long time but I would have enjoyed my NED status more if I was fully informed. Now with recurrence I will keep on questioning everything. Take care

    XXX

  • I hadn't even got to the oncology guiny dept, but I asked the doctor in front of me from the non-specialist dept to hand me my file over. He told me that I 'might get upset'. I said I promised I wouldn't cry uncontrollably and held my hand out for the file. He passed it over and sat waiting awkwardly whilst I flicked through things. I asked a few things about what long words meant but then asked why he was the first person to mention cancer when it was clear that it had been known from my blood test a few weeks earlier and increasingly so from each scan since then that there was a high chance that it was cancer.

    When I got to the oncology guiny specialist dept I think I spent around 2 minutes with the doctor before she panicked and went to get the consultant.

    My oncology consultant walked in and said "right, what is it you want to know?" She's answered every question I've asked since the day I met her. She did tell me early on that she had often be called "blunt". So I said "good, because I don't do faffing about with fluffy language". I also made it very clear to her that if everything pointed to me having 3 months to live she should just tell me because I wasn't going to be faffing about going in and out of hospital for random tests or false hopes.

    Following surgery, when we had a discussion about whether it was a 'wait and see' approach or 'chemo now' approach my oncologist spent a while explaining why that was. I asked her recommendation and she said 'wait and see' because we can still use the chemo option at a later date and you'll still have the further surgery option with effect on quality life. She then said "but I know you and I'll get the chemo specialist to speak to you now too". I then spent about 30 minutes with the chemo specialist who explained in great detail how chemo works on particular cells (with pictures she drew!), the differences in my cancer cells and the reasoning behind the stance of suggesting the 'wait and see' decision to me.

    They did also both make it clear that I could opt for the 'chemo now' approach if I wanted and they'd support that. They've offered me options at each step and a recommendation every time I've asked. Each time they've justified their recommendation but stated clearly that if I take the alternative option they'll support me.

    I haven't felt the need to ask for copies of scans or my notes since that first time I asked. However, it is known that I will ask for them if I want them. But in all honesty I don't see why they would be useful to me. What is useful to me is the interpretation of them in language that makes sense to me.

    Admittedly I do have a health training background and the doctors could tell from how I spoke that was the case. But I'm not a surgeon or an oncologist and much of it was new to me.

    The only time my oncologist hesitated was when I asked a very direct question and she took a glance at my partner, thought for a moment and then gave probably her most guarded response she has ever given. I understood her response by reading between the lines. I suspect she either doesn't get asked it very often or she has found the response to be variable in patients so decided to tread carefully despite our prior discussions. Of course, I've asked for complete open-ness but she showed sensitivity to the fact that my partner was in the room and he has to just listen to everything.

    From the comments above I feel very lucky that I was allocated a consultant so well suited to me. I'm astounded that some people don't know their grade without asking as I was told in my surgery follow up meeting along with an explanation of what that meant. It was also in the letter sent to my GP, of which I received a copy. I was of the understanding that it was standard that all patients would receive that diagnosis letter. I don't understand how anyone couldn't receive it as the details are sometimes required in other paperwork, e.g. travel insurance, etc.

    Clearly there's a range of approaches with patients. I'm just glad that I was able to get the understanding that I have with my consultant from the day I met her.

  • Hi Katfish

    Like your style. Especially Teheran hand me my file bit. I remember when I had a polyp removed the file was left on my bed so I read it. A nurse returned and said ooh you should not be reading that as you might not understand it. I replied that it was my file and they were probably afraid that I would understand it!

    You obviously have a good understanding with your HCPs interacting at the level you want. Even though I also have a medical background my oncologist seemed hesitant. Maybe because she had not treated a mucinous OC before. I think I will ask next time I see her. I was surprised to have to ask my grade as it is pretty fundamental wrt to treatment.

    Still sharing info helps us all to get what we need.

    Fay

  • Terehan should be "the" predictive text!

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