To the point of tears today .....

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bluerose
bluerose Member Posts: 1,104
edited March 2014 in Ovarian Cancer #1
after talking to my Gyno's office. I won't go over all my problems as I have outlined them on these boards before but suffice is to say I am still dealing with a long wait to get my cyst biopsied and on top of that am dealing with a very rude Gyno and nurse who makes you feel like you are bothering them when you dare to call and ask a question. This morning I called them to simply ask about an appointment they were supposed to call me to make to see the Gyno to go over questions on the surgery and of course they didnt so I had to check back. The nurse informs me it won't be for a month yet and then says that it will be September AT THE EARLIEST before surgery.

At that point in the conversation I told her how unreal this all is as to how long one has to wait with this kind of issue and the nurse said 'would you like me to have the doctor refer you somewhere else?' Where the heck did that come from? It's clear that I am a bother to them and that popped out of her mouth. I couldn't believe it and just sat there dumbfounded with a lump in my throat.

This will bring it to a year or more since this cyst has been growing - no one cares that I have had massive rads to the area and previous chemos and am a high risk for secondary cancers - in fact I am treated like a pain in the butt. It is unfathonable to me that a survivor of 20 years is treated like garbage with no priority when new symptoms as obvious as this arise. 'Get checked early'. Someone tell me how in Canada to do this? Blessings, Bluerose

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  • carol2dogs
    carol2dogs Member Posts: 132
    #2
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    So sorry, so unfair and inhumane
    Blueroses,
    Gosh, I am so very sorry that you are going through such completely unneccessary cruel treatment! Do you know, if someone in the US treated their dog that way, a neighbor could easily report them and have them arrested, and convicted, for animal cruelty.
    Here is a thought - is there any way you could get some media attention to your story? Especially right now, with all the fuss about healthcare in the US and the inevitable comparisons with Canadian healthcare. It is amazing how barriers fall when media attention is used.
    Please keep us updated.
    Love and hugs, Carol
  • bluerose
    bluerose Member Posts: 1,104
    #3
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    carol2dogs said:

    So sorry, so unfair and inhumane
    Blueroses,
    Gosh, I am so very sorry that you are going through such completely unneccessary cruel treatment! Do you know, if someone in the US treated their dog that way, a neighbor could easily report them and have them arrested, and convicted, for animal cruelty.
    Here is a thought - is there any way you could get some media attention to your story? Especially right now, with all the fuss about healthcare in the US and the inevitable comparisons with Canadian healthcare. It is amazing how barriers fall when media attention is used.
    Please keep us updated.
    Love and hugs, Carol

    Hey Carol
    Thanks for your quick response and words of validation and support. Actually it has crossed my mind about dealing with the media about this because my background is the media (radio actually) but then there is the whole issue of pressure dealing with it all and not to mention the stigma of being the 'troublemaker' to the docs. Shouldn't be the way it works but it is, I would be labelled and that's all I need. Good thought though Carol, thanks.

    I feel better that I fired the Gyno but of course now am at square one which isn't probably that much longer than how long it would have taken her to do the surgery. I gave the nurse a talking to about respecting survivors and the fact that my history makes me ripe for another cancer in the future and I am left on a list as if I had a zit and no medical history prior is horrendous. You know that grouch of a nurse didn't even apologize? Glad they are gone and I will give it up to God to lead me to someone who has a clue, if there are any out there. My GP has been with me for 23 years and I can't even get in to see her for a month or more to discuss this, left her a note to call me next week when she gets back from holidays, but she is backed up too. Complex patients have a difficult time getting more than 5 minutes from doctors anymore, it's critical. Take care and thanks again Carol for your response. Blessings, Bluerose
  • Unknown
    Unknown
    #4
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    This comment has been removed by the Moderator
  • bluerose
    bluerose Member Posts: 1,104
    #5
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    unknown said:

    This comment has been removed by the Moderator

    Yup Nancy, so I have heard, sigh
    You have no idea how many doctors, including an ovarian cancer group, my family doctor of 25 years and countless others have said 'there is a very good chance cysts are not cancer' to which I said 'yes but can you guarantee me it's not, 100%'. They don't say much after that. Still no help in moving me along. They are running a big campaign featuring an Olympic athelete who lost her Mother from Ovarian and she is saying 'get it checked early' but I yell at the tv when I see that campaign HOW FOR THE LOVE OF GOD?

    Yes I am in Canada. We have a free medical system (free upfront), we have very high taxes on everything that I assume pays for it in reality, but the baby boomers are creaking and so is the FREE system. We are short on specialists, lots going to the states, and it is just such a different world from when I was diagnosed with non hodgkins lymphoma back in 1989. I found the lump, was in to see my GP the same day, was referred to an haematologist for tests within a week and was in treatment 2 weeks later. Here I sit today, many months later after the 'cyst' first was found (they missed it in Nov on a CT), and yes it had grown from that CT til the one in June of this year when it was found accidentally during surgery for another issue. So how long has it really been there?

    I asked for a copy of my pelvic ultrasound and I was told by two separate docs before that it was tiny, helllloooo the thing is 1 inch by 1 inch by 1 and a half inches. Sheeesh that doesn't sound tiny to me. What is big then? Also it has some weird 'node' on it as well just to make things more interesting. I also was told there is some 'tissue' in my uterus, hey why not. Sigh.

    I am past worried. Today I was told to push for a gyno oncologist rather than the plain just gyno I was referred to but I was told that you can't get in to see a gyno oncologist unless you have first seen a regular gyno and they have said yes it's cancer. Seems crazy to me. Anywho now I have an expert saying to push for the gyno onco so I have a note in to my GP to ask for a referral to one. Bet it's not til next year I get in.

    Oh I have asked for an earlier appt from all angles and they refuse. I asked for a second opinion from another gyno and she looked at the pelvic ultrasound and decided it could wait til Oct 21st. GIVE ME A BREAK.

    I have contacted my old oncologist and asked for help, no callback yet. I have only the ER left and if nothing budges by then, that's if I haven't croaked from the stress before, I will get up early on Monday morning and hit the ER. I can't go sooner as it's coming up a weekend and I don't want residents on top of it all. I want gynos working in the hospital to come down and consult when I go in and the ER is usually not as busy early on a weekday morning.

    Just my luck I will pick up swine ful while I am waiting in there. Sigh.

    Hope I don't sound whinney but I am really at a loss for what to do. I also have this pain in my lower back to remind me something is wrong and nothing is being done. Sigh.

    Thanks for the response Nancy. Blessings, Bluerose
  • jane65
    jane65 Member Posts: 277
    #6
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    carol2dogs said:

    So sorry, so unfair and inhumane
    Blueroses,
    Gosh, I am so very sorry that you are going through such completely unneccessary cruel treatment! Do you know, if someone in the US treated their dog that way, a neighbor could easily report them and have them arrested, and convicted, for animal cruelty.
    Here is a thought - is there any way you could get some media attention to your story? Especially right now, with all the fuss about healthcare in the US and the inevitable comparisons with Canadian healthcare. It is amazing how barriers fall when media attention is used.
    Please keep us updated.
    Love and hugs, Carol

    Excellent suggestion, Carol!
  • jane65
    jane65 Member Posts: 277
    #7
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    bluerose said:

    Yup Nancy, so I have heard, sigh
    You have no idea how many doctors, including an ovarian cancer group, my family doctor of 25 years and countless others have said 'there is a very good chance cysts are not cancer' to which I said 'yes but can you guarantee me it's not, 100%'. They don't say much after that. Still no help in moving me along. They are running a big campaign featuring an Olympic athelete who lost her Mother from Ovarian and she is saying 'get it checked early' but I yell at the tv when I see that campaign HOW FOR THE LOVE OF GOD?

    Yes I am in Canada. We have a free medical system (free upfront), we have very high taxes on everything that I assume pays for it in reality, but the baby boomers are creaking and so is the FREE system. We are short on specialists, lots going to the states, and it is just such a different world from when I was diagnosed with non hodgkins lymphoma back in 1989. I found the lump, was in to see my GP the same day, was referred to an haematologist for tests within a week and was in treatment 2 weeks later. Here I sit today, many months later after the 'cyst' first was found (they missed it in Nov on a CT), and yes it had grown from that CT til the one in June of this year when it was found accidentally during surgery for another issue. So how long has it really been there?

    I asked for a copy of my pelvic ultrasound and I was told by two separate docs before that it was tiny, helllloooo the thing is 1 inch by 1 inch by 1 and a half inches. Sheeesh that doesn't sound tiny to me. What is big then? Also it has some weird 'node' on it as well just to make things more interesting. I also was told there is some 'tissue' in my uterus, hey why not. Sigh.

    I am past worried. Today I was told to push for a gyno oncologist rather than the plain just gyno I was referred to but I was told that you can't get in to see a gyno oncologist unless you have first seen a regular gyno and they have said yes it's cancer. Seems crazy to me. Anywho now I have an expert saying to push for the gyno onco so I have a note in to my GP to ask for a referral to one. Bet it's not til next year I get in.

    Oh I have asked for an earlier appt from all angles and they refuse. I asked for a second opinion from another gyno and she looked at the pelvic ultrasound and decided it could wait til Oct 21st. GIVE ME A BREAK.

    I have contacted my old oncologist and asked for help, no callback yet. I have only the ER left and if nothing budges by then, that's if I haven't croaked from the stress before, I will get up early on Monday morning and hit the ER. I can't go sooner as it's coming up a weekend and I don't want residents on top of it all. I want gynos working in the hospital to come down and consult when I go in and the ER is usually not as busy early on a weekday morning.

    Just my luck I will pick up swine ful while I am waiting in there. Sigh.

    Hope I don't sound whinney but I am really at a loss for what to do. I also have this pain in my lower back to remind me something is wrong and nothing is being done. Sigh.

    Thanks for the response Nancy. Blessings, Bluerose

    another suggestion
    Have you considered contacting an attorney? Or at the very least sent a registered letter, return receipt requested to these clown doctors you're dealing with.
    Where did they go to school that allows them to treat their patients this way, and hire such unfeeling staff?

    I don't know if I'm more sad, angry or just frustrated for you.

    We'll all keep trying to help, and NO YOU DEFINITELY DON'T SOUND WHINEY!!! You sound desperate for the care you deserve.

    I hope everyone who'se hoping for this care to come to the US could carefully follow what this poor lady is going through.

    Good luck Bluerose.
    Jane
  • bluerose
    bluerose Member Posts: 1,104
    #8
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    jane65 said:

    another suggestion
    Have you considered contacting an attorney? Or at the very least sent a registered letter, return receipt requested to these clown doctors you're dealing with.
    Where did they go to school that allows them to treat their patients this way, and hire such unfeeling staff?

    I don't know if I'm more sad, angry or just frustrated for you.

    We'll all keep trying to help, and NO YOU DEFINITELY DON'T SOUND WHINEY!!! You sound desperate for the care you deserve.

    I hope everyone who'se hoping for this care to come to the US could carefully follow what this poor lady is going through.

    Good luck Bluerose.
    Jane

    I thought of it
    but what's the point really? All that would happen is that the docs would stick together, cause me more stress and who has the money to take on the medical profession anywho? I just don't know what to do and yup I do sound desperate don't I because I am - no idea where to turn now. Well actually there is the ER and I intend to go on Monday morning with this ever persistant pain in the lower back that is obviously tied to the uterus issue and perhaps the cyst/node as well. I was told by an agency to demand to be referred to a gyno oncologist too but that will go nowhere as here you have to be diagnosed with cancer first by a reg Gynie then they send you to the Gynie Onc. I was surprised today to hear that I should demand that referral, from someone in my same province who is in the medical profession and a Gynie himself, wish everyone would get on the same page already.

    The thing that really drives me crazy is this lacksidaisical attitude about ovarian issues like this. I mean no one can guarantee me this cyst isn't cancerous and what's with that node thing on it? Geez, scares me half to death. Once you have been through a bone marrow transplant and nearly died twice you can get a little nervous when 20 years later something like this forms I can tell you. I was never a patient who was always looking for something to appear, after my transplant I went on with life as best as I could but never thought of cancer again, truthfully, but I'm not stupid and when this kind of major symptom comes up - hellooo you deal with it, right? Apparently not. You would think that with my past history they would realize the distinct possibility of a second cancer years later from all the treatment alone but truthfully I think they do know but the system is jammed up, waits from hell. I really think I am in shock as to what cancer care seems to have become here and it can't be just me. They seemed pretty familiar with my disgust.

    Thanks for taking the time to talk with me about this, it makes me feel better to know that there are people in the know here who understand. I too go through so many stages as you do just reading this, fear, anger and frustration. Blessings, Bluerose
  • jane65
    jane65 Member Posts: 277
    #9
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    bluerose said:

    I thought of it
    but what's the point really? All that would happen is that the docs would stick together, cause me more stress and who has the money to take on the medical profession anywho? I just don't know what to do and yup I do sound desperate don't I because I am - no idea where to turn now. Well actually there is the ER and I intend to go on Monday morning with this ever persistant pain in the lower back that is obviously tied to the uterus issue and perhaps the cyst/node as well. I was told by an agency to demand to be referred to a gyno oncologist too but that will go nowhere as here you have to be diagnosed with cancer first by a reg Gynie then they send you to the Gynie Onc. I was surprised today to hear that I should demand that referral, from someone in my same province who is in the medical profession and a Gynie himself, wish everyone would get on the same page already.

    The thing that really drives me crazy is this lacksidaisical attitude about ovarian issues like this. I mean no one can guarantee me this cyst isn't cancerous and what's with that node thing on it? Geez, scares me half to death. Once you have been through a bone marrow transplant and nearly died twice you can get a little nervous when 20 years later something like this forms I can tell you. I was never a patient who was always looking for something to appear, after my transplant I went on with life as best as I could but never thought of cancer again, truthfully, but I'm not stupid and when this kind of major symptom comes up - hellooo you deal with it, right? Apparently not. You would think that with my past history they would realize the distinct possibility of a second cancer years later from all the treatment alone but truthfully I think they do know but the system is jammed up, waits from hell. I really think I am in shock as to what cancer care seems to have become here and it can't be just me. They seemed pretty familiar with my disgust.

    Thanks for taking the time to talk with me about this, it makes me feel better to know that there are people in the know here who understand. I too go through so many stages as you do just reading this, fear, anger and frustration. Blessings, Bluerose

    Are there any woman's organizations there that could put pressure on the system. You can't be the only one going through this, maybe they'd know the ins and outs of getting things done, maybe they've done the legal system thing already.
    How about contacting a TV station, they must have a medical reporter, perhaps they could give you guidance, or a newspaper.
    I'm just throwing some suggestions out there.

    Worse comes to worse, make up a placard, call the TV station and tell them you're marching in front of your doctor's office until you get treatment!!
    Jane
  • MichaelaMarie
    MichaelaMarie Member Posts: 163
    #10
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    jane65 said:

    Are there any woman's organizations there that could put pressure on the system. You can't be the only one going through this, maybe they'd know the ins and outs of getting things done, maybe they've done the legal system thing already.
    How about contacting a TV station, they must have a medical reporter, perhaps they could give you guidance, or a newspaper.
    I'm just throwing some suggestions out there.

    Worse comes to worse, make up a placard, call the TV station and tell them you're marching in front of your doctor's office until you get treatment!!
    Jane

    Totally Unfair!!!
    I was just wondering if you could go to a lab on your own and ask for a CA-125 to be done for you? I would expect the out of pocket cost to be less than $100.00, but not sure. There is a lab here in the States called Quest Diagnostics, Inc. or something like that whereby you can just walk in off the street for any lab test you want, and without a doctor's referral. I found out about them from going to a Naturopathic doctor a few years back. I would definitely try to find out what my CA-125 number is somehow. It's so disturbing to hear how you have been treated. And, I can only imagine the stress you must be feeling. But, you sound very strong and determined, so keep up the fight!!! Hugs, MM
  • bluerose
    bluerose Member Posts: 1,104
    #11
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    MichaelaMarie said:

    Totally Unfair!!!
    I was just wondering if you could go to a lab on your own and ask for a CA-125 to be done for you? I would expect the out of pocket cost to be less than $100.00, but not sure. There is a lab here in the States called Quest Diagnostics, Inc. or something like that whereby you can just walk in off the street for any lab test you want, and without a doctor's referral. I found out about them from going to a Naturopathic doctor a few years back. I would definitely try to find out what my CA-125 number is somehow. It's so disturbing to hear how you have been treated. And, I can only imagine the stress you must be feeling. But, you sound very strong and determined, so keep up the fight!!! Hugs, MM

    That's a good idea MichaelaMarie
    Actually I had been offered that test with the ex Gyno I had til today but when she said that they aren't always accurate, at that point 2 months ago, I decided to decline because I had no idea that I would still be waiting for surgery and biopsy 2 months down the road with no hopes of it for at least another 2 to 4 months. But now, with the situation I am in, this could be a good indicator and actually might move the docs along to do this thing faster. I run the risk of freaking myself out for nothing if it comes back positive then turns out to be false but once again, at least maybe it would move docs along. On the other hand if it says no cancer traces it could stall things, even if it's wrong. I will have to think that through but it might be worth a shot. Thanks for reminding me about that I totally forgot.

    Oh I wouldnt be here if I wasn't a fighter and advocate for myself but I have to say I am getting really tired with this. It's so discouraging that every time I reach out it's just a 'no'. Not quitting yet though. AS far as costs are concerned it is one of the tests that is not covered by our health system in Canada which is weird really and it is just over a hundred dollars I think.

    Thanks for your comments, ideas and support. I really appreciate it. Blessings, Bluerose
  • bluerose
    bluerose Member Posts: 1,104
    #12
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    jane65 said:

    Are there any woman's organizations there that could put pressure on the system. You can't be the only one going through this, maybe they'd know the ins and outs of getting things done, maybe they've done the legal system thing already.
    How about contacting a TV station, they must have a medical reporter, perhaps they could give you guidance, or a newspaper.
    I'm just throwing some suggestions out there.

    Worse comes to worse, make up a placard, call the TV station and tell them you're marching in front of your doctor's office until you get treatment!!
    Jane

    Good thought Jane
    I think I did another response on this idea earlier about contacting the media. I came from media actually when I worked in radio and thought of that too. I just don't think I could handle the pressure of it all and I think there would be a hastle with doctors after that big time if my face was all over this topic. However, I did think about contacting a reporter who is into medical stuff and actually there is one who works on an advocacy show who had cancer herself (breast) and is well known nationally. If I get any energy bursts I could call her and tell her I can't front this investigation but it's one that she should look into and she might just do it.

    I didn't think of women's organizations though, good idea. I will think about who might be best suited for this kind of topic. You have a point, that maybe someone has gone through the legal side of things and could guide me. Good point.

    Oh that placard idea really is attractive but I don't have the stamina. I just keep thinking to myself that there is no doubt I am not the only one that is going through this and sometimes I wonder if this could be part of the reason that some cancers are found too late, delays in the system. I know ovarian is silent as well but the stalls can put you into a later stage and we all know what that can mean.

    Thanks again for the input and ideas, I will work on them tomorrow if I feel better. Blessings, Bluerose
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #13
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    Hugs
    Dearest Blue, so sorry to hear all the hurddles adn struggles you are having to deal with. I am praying for you and for doors to open to help you. I know in the states we have places in the state that can help but uncertain about canada. Maybe contact American Cancer Society and they could help you or go to acor.org the ovarian board and leave a question there. There are several women on that forum that are from Canada and one very knowledgeable person that knows just about everything about everything. Worth a try.

    Hugs ♥ Prayers Bonnie
  • bluerose
    bluerose Member Posts: 1,104
    #14
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    BonnieR said:

    Hugs
    Dearest Blue, so sorry to hear all the hurddles adn struggles you are having to deal with. I am praying for you and for doors to open to help you. I know in the states we have places in the state that can help but uncertain about canada. Maybe contact American Cancer Society and they could help you or go to acor.org the ovarian board and leave a question there. There are several women on that forum that are from Canada and one very knowledgeable person that knows just about everything about everything. Worth a try.

    Hugs ♥ Prayers Bonnie

    Thanks Bonnie
    Good ideas. I used to belong to acor actually and yup there are women here in Canada on the site very knowledgeable, good idea I will do that today, thanks. Thank you so much for stopping to read my situation and offer your great suggestions. You just never know when something that seems obvious to try to you someone else hasn't thought of when they are right in the middle of crisis. Hope you are feeling well and having a good summer. Blessings, Bluerose.

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