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Thread: Mariesnowgoose, cancer and some community support.

  1. #121
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    mariesnowgoose is offline Official OTW
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    Quote Originally Posted by harrow View Post
    I had a friend at work who phoned round for CT scans and bargained down a nhs hospital for the best price.

    Its not only women, Sometimes we women are treated as second class citizens

    But your not the only one, my December appointment was cancelled 3 times,
    seen in January doctor says I need more surgery and I will phone you,

    scan appointment arrives in March and had surgery last week,

    I never got that phone call or a doctor telling me what they were going to do.

    I walked around with my phone in my pocket for months waiting for that phone call.

    B**st*rds!!!!!

    Oh, harrow my heart goes out to you

    They shouldn't be allowed to get away with this sort of thing, it is no way to treat cancer patients - or any patient come to that!

    Hope you are recovering well from the op, at least it's another milestone behind you now xx
    Life: unfinished threads in a never-ending tapestry
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  2. #122

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    so sorry you are having all these problems marie.......i can imagine how you feel about not getting any answers from the medical team...........but i think this happens to a lot of folk...not getting answers they need.
    do think carefully about cancelling the op on thursdayllllllll
    hope things go well if you do go ahead with it......good luck......
    where there is hope , there is a dreamer
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  3. #123

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    Iím so sorry to hear all this, makes me realise I was lucky getting superb pre and post op support from my local NHS hospital. Postcode lottery....so sorry. Hug, if itís any use...
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  4. #124

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    blimey , sounds like hard work round your way !. don't really want to share on here , but i've just had a pet scan and saw a consultant a week later to go over the results. i feel sufficiently well informed and only wish i'd thought more about what questions to ask. !
    sounds like it really is a postcode lottery , just make sure as you can you're making the right moves
    too blessed to be stressed
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  5. #125

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    Keep kicking up a fuss Marie. Perfectly ok to keep pestering till you get the answers to your questions. Nothing for the dumb as me granny used to say
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  6. #126

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    Hi Marie,
    Just got my internet back and am playing catchup.

    I hope you've calmed down a bit though it can't be easy when you feel no one is listening,

    I think I would go ahead with the op on Thursday, two reasons,
    1 Whatever else may be going on, you are best rid of those lymph nodes.
    2 When you are in the hospital, you have them on the spot. It's not so easy to ignore someone in front of you.

    If you then feel you are getting nowhere, contact PALS, I'm pretty sure all hospital trusts have them. They will follow up on any concerns you have. I found them very helpful when my dad was in hospital. His specialist didn't want me present when he was doing his rounds but, as my dad was turned 90 I refused to leave. He just walked off. To say I was fuming doesn't begin to explain how I felt. Got in touch with PALS and got a letter of apology. Steam coming out of my ears now, thinking about it.

    Back to you. I don't see why you can't have a full body scan, even if it's not routine. I would certainly be pushing for it, even though you shouldn't have to and probably dont feel like it at the moment. Linked to your dissatisfaction with their communication, you might have a bit of extra leverage.

    If non of that works, tell them that you wish to start a formal complaint, that should kick them up the ass.

    I really hope your wrong about the other breast, it must be really scary......may be your anger is helping to control your fears.

    All I can say is, try to stay strong and get in touch any time you want. You know we are all with you you... Just wish I was closer.
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  7. #127

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    Quote Originally Posted by harrow View Post
    I had a friend at work who phoned round for CT scans and bargained down a nhs hospital for the best price.

    Its not only women, Sometimes we women are treated as second class citizens

    But your not the only one, my December appointment was cancelled 3 times,
    seen in January doctor says I need more surgery and I will phone you,

    scan appointment arrives in March and had surgery last week,

    I never got that phone call or a doctor telling me what they were going to do.

    I walked around with my phone in my pocket for months waiting for that phone call.
    Hi Harrow,

    Treatment such as you have had is truly dreadfull. It's bad enough living with cancer but being left wondering is cruel.
    Glad you finally got your op and I hope your feeling better and getting back to normal, whatever that is.
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  8. #128

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    Marie I would be reluctant to cancel your further op for a couple of reasons

    1) with aggressive disease the earliest intervention gives better results

    2) Consultants despite their title some have limited knowledge or influence over the ultimate care plan and preventative measures and on occasion your history

    More importantly in Hospital you will meet before hand your surgeon ,they are the ones ultimately that will answer your questions they will direct the consultants in your care

    I have met my ultimate consultant once, It was a civilised conversation and answered questions others didn't or were reluctant too, the issue in reality is the bloke has 300 patients under his care and with that workload delegates to other consultants.Its like getting an audience with god

    My pending op is / could be life changing and I found myself having to be firm , My immediate consultant referred to the surgeon to answer my outstanding questions

    You are doing the right thing in engaging in your care, and I hope things get resolved sooner rather than later for you

    Channa
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  9. #129
    mariesnowgoose's Avatar
    mariesnowgoose is offline Official OTW
    Name: Marie
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    So, as hippy would say, here we are at 'silly o'clock' in the morning

    Been attempting to think everything through logically and my thoughts are going along these lines.

    When I was first diagnosed with breast cancer back on the 1st March one comment from the consultant stuck in my mind very strongly:

    He said "It doesn't matter whether we operate on you next week or in 3 months time, the outcome will be the same, there is no rush".

    Also that it was fine to change my mind about whether to have a partial or full mastectomy, the decision was up to me. It made no difference going for one or the other and even if I turned up on the day of the operation and changed my mind at the last minute and decided I need more time to decide it was perfectly OK to do that.

    What has happened in the interim:


    1. I (luckily as it happens!) decide to go for full mastectomy, no messing about.
    2. Follow up from operation I am told that in the end I had made "the right decision" as the tumour was bigger than they thought and I would have needed to go back for a second operation for full mastectomy anyway if I'd initially decided on just partial.
    3. Told their is a discrepancy between the pathology report and the 'team' report and that on that basis it is safer to go for a lymph gland removal operation.
    4. I subsequently notice that the other breast is now starting to show cancer symptoms.

    New to this game, I am then told post-op that mammograms, x-rays and ultra scans don't see everything.
    So tell me what I didn't know - but you medical guys did - after the event why don't you?!

    Which gets me to thinking: if the consultant said at the beginning there is no rush and he could just as easily have done the first operation 3 months down the line then that still stands, yes? So if I decide to hold back on this second lymph node op until I have the reassurance of a full body scan that would be a perfectly reasonable thing to ask for under the circumstances?

    What if the cancer has actually jumped ship and is elsewhere? After all, I know now that ultra scans, x-rays & mammograms can't see everything. They a) can't see the actual size of the tumour or how far the cancer has spread away from it and b) didn't pick up anything wrong with the other breast when there damn well is.

    Seems to me they work in partial darkness on a 'cut it open and see' basis, even if they do follow tried and tested methods for treating breast cancer - or a 'path' as harrow said.

    EXCEPT! - IF there is cancer elsewhere in the body that surely impacts on whether it's worth bothering with the lymph node removal in the first place? After all, quality of life is most important here. If lymph nodes are removed which could possibly cause lymophodemia and a weakening of the muscles in my dominant arm and I find out further down the line that there is cancer elsewhere anyway I'll have an unnecessarily b*gg*red up arm on top of possibly more seriously affected parts of the body.

    I am inclining more and more to delaying the lymph node op until I've had a PET/CT scan which will give a full picture of what the hell is going on inside the body, including which other lymph nodes are/are not infected. To me that's a no brainer, I don't care what the so-called specialists say, cos I'll bet your bottom dollar the reason why a full body scan isn't offered to all suspected cancer patients right from the off is down to COST. Call me cynical, but I bet I'm damn well right!

    Well, it's about 2:45am now, so I'll shuffle off and make a hot drink and go try get a bit of shuteye, there is another battle to be fought tomorrow.

    Wish me luck, and thanks to those of you who bother to read all my stupid waffling!
    Last edited by mariesnowgoose; 17-04-2019 at 01:59.
    Life: unfinished threads in a never-ending tapestry
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  10. #130

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    feel a bit weird hitting like more an acknowledgement of your post and reservations, and I do understand some of your points. My pending op concentrates on a dominant arm or did so you are right to question, you need to go with gut feeling sometimes until things are explained

    channa
    Last edited by channa; 17-04-2019 at 02:17.
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