Waiting for diagnosis...

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  • MugsBugs
    MugsBugs Member Posts: 111 Member
    edited March 2019 #22
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    Laceygirl said:

    I don’t think he will do a d

    I don’t think he will do a d&c because he’s taking the uterus out in a few months anyways.  

    Not a Doctor but I would push for the D&C

    I was preliminary diagnosed with abnormal cells  from the biopsy. I also had several fibroids.  It only took days for them to get the results back to me.  My gyno then scheduled a D&C with hystoscopy within a week (the waiting is the worst).  The hystoscopy allowed her to look at the uterus and determine where to take scrappings.  I didn't find this board until after I had the D&C.  My cancer (thank God) was grade 1 stage 1.  I didn't find this board until after I had the D&C and a positive diagnosis.  Chances are you don't have cancer but if you do you want your doctor to be well-informed and you want a gyno-oncologgist who specializes in these types of cancer to be the one who does the hysterectomy.  Biopsies aren't always accurate because they have to get the biopsy where the cancer lives.  A D&C is definitive and it will tell the doctor what kind of cancer they are dealing with.  I had laproscopy surgery and the doctor told me he would make one initial incision through the belly-button and take an initial look-see.  If it looked like the cancer had moved outside the uterus then he would do the surgery with the open incision.    

     

     

    Before I had surgery I had biopsy, D&C with hystoscopy, CT scan, colonoscopy (they thought they saw a potential problem in the colon from the CT scan), hysterectomy.

     

     

     

  • janaes
    janaes Member Posts: 799 Member
    #23
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    I remember it was about this

    I remember it was about this time 3 years ago i was in my gynocoligists office doing the biopsy. It wasnt much longer ( i can remember exsactly how long) that i got a call from the office telling me i needed to get into the office right away because i had cancer. They had the appointment set up and everything. I had just started a job that  school year so they did change the appointment for me very reluctently. It was changed to an apointment that was in a day or two of the one they had set up. My hysterectomy was going to be in the summer also until they found the cancer. I had my hysterectomy the first week in May.  

    I hope yours is not cancer. From what others have said its probably not. Im not a doctor either but i just wanted to share my experience so you had that as you go forward.

  • Laceygirl
    Laceygirl Member Posts: 9
    #24
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    Hi Everyone:  I just made an

    Hi Everyone:  I just made an appointment tomorrow to see my family doctor as I keep feeling extremely weak and nauseous.  I am not sure what is going on and if it could possibly be related to the mass crowding out my abdomen, but something just doesn't feel right.  It just seems like I am always sick these days.  I have been constantly burping (sorry) and have had heartburn that makes my lungs feel like they are on fire.  Now, today I am feeling so sick I don't even want to eat....this has been progressing for the last 3-4 days now and I have never had these kinds of problems in my life.  Has anyone else with a large mass noticed these symptoms?  

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited April 2019 #25
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    Doing the right thing

    Going back to your doctor for these issues is the best thing you can do. Hopefully he can figure it out and if not advocate for you to get the right care quicker than you could on your own.

  • Laceygirl
    Laceygirl Member Posts: 9
    #26
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    So went to my family doctor

    So went to my family doctor and he chaulked up my constant nausea and other digestive issues to be caused by the antibiotics I was on a week ago and told me to take some probiotics.  He also told me if I wasn't happy with my surgery wait time (about 3-6 months!) I could pay privately (which would cost me upwards of $10,000).  I am so unhappy with Canada's supposedly best healthcare system.  I know they don't think it's cancer but what if they are wrong and I end up with it.  From all the research I have done on leiomyosarcoma of the uterus (which is what they can't rule out) it is impossible to tell if it actually is cancer even with an MRI.  This kind of cancer is usually confirmed upon the removal of presumed fibroids.  I get that it is rare but it doesn't mean I can't have it.  If I have to wait 6 months for my surgery I am sure my outcome will not be very good.  I now am suffering from yet another (had one a week ago) bladder infection and I honestly think it all has to do with all of the extra pressure in my abdomen.  I am so frustrated and uncomfortable and I know something is not right.  I have had nothing but constant problems "down there" since I first went to my doctor last month.  I just can't get anyone to listen and I feel lost in the system.  I don't have the money to pay privately so I guess I just have to wait....

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    #27
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    Laceygirl said:

    So went to my family doctor

    So went to my family doctor and he chaulked up my constant nausea and other digestive issues to be caused by the antibiotics I was on a week ago and told me to take some probiotics.  He also told me if I wasn't happy with my surgery wait time (about 3-6 months!) I could pay privately (which would cost me upwards of $10,000).  I am so unhappy with Canada's supposedly best healthcare system.  I know they don't think it's cancer but what if they are wrong and I end up with it.  From all the research I have done on leiomyosarcoma of the uterus (which is what they can't rule out) it is impossible to tell if it actually is cancer even with an MRI.  This kind of cancer is usually confirmed upon the removal of presumed fibroids.  I get that it is rare but it doesn't mean I can't have it.  If I have to wait 6 months for my surgery I am sure my outcome will not be very good.  I now am suffering from yet another (had one a week ago) bladder infection and I honestly think it all has to do with all of the extra pressure in my abdomen.  I am so frustrated and uncomfortable and I know something is not right.  I have had nothing but constant problems "down there" since I first went to my doctor last month.  I just can't get anyone to listen and I feel lost in the system.  I don't have the money to pay privately so I guess I just have to wait....

    Hi

    Hi Laceygirl,

    Gosh so sorry you are going thru all of this and then having to wait..... just awful. Is there anyone around you that works in the healthcare system to let you know any tips or tricks to get to the front of the line. 

    Not sure about Canadian healthcare but can you be the squeaky wheel and if nothing else go to the ER (A&E) and keep telling them you aren't feeling well. I think after a few ER visits it would be cheaper to get you into surgery then keep seeing you in the ER. 

    All the best and I hope you get some answers soon. xoxoxo

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #28
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    I have a friend in Vancouver,

    I have a friend in Vancouver, BC and she told me Canadian health care is great until you're really sick. She said anybody with money went to the United States to have their problem taken care of. Her daughter had a suspicious spot on her toe and their primary doctor said said it's probably nothing and would not give her a referral. Sadly, it turned out cancerous.

    From the time I saw my gynecologist for the biopsy (which, unlike a lot of ladies here, was pretty painless) until my first chemo after my hysterectomy, it was less than a month. 

    I'm hoping you can get in sooner because the waiting is hell! Good luck!

    Love,

    Eldri 

  • MAbound
    MAbound Member Posts: 1,168 Member
    #29
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    PET Scan

    Could you afford to pay for a PET Scan? That would certainly show if there is cancer and would be cheaper than the surgery even though it would still be expensive. I found the below when googling:

    https://www.triumf.ca/sites/default/files/TRIUMF-AAPS-Martinuk-PET-Across-Canada-REPORT.pdf

    I think the document is from 2011, though.

    The cost of a PET scan varies significantly from a low of $956 in Quebec to a high of $1,800 in Manitoba and Nova Scotia. The average cost of a scan in Canada is$1,506.20. It should be noted that the province with the lowest cost per scan (Quebec) is also the province that does the most scans.

  • Laceygirl
    Laceygirl Member Posts: 9
    #30
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    So I got really desperate

    So I got really desperate today and called my gyno's office to see if I could get my surgery date figured out.  It turns out the receptionist (very sweet lady) was sympathetic to my cause.  I told how difficult my life is dealing with this and how desperate I was to have it resolved ASAP and she bumped my surgery! It went from sometime in the fall, after everyone comes back from vacation, to June 12th. I am also on her radar for anything that comes up sooner than that..so just wanted to say thanks so much for the advice.  It just goes to show that the squeaky wheel really does get the grease!  If you don't avocate for yourself, who is going to?  Please if you are in a similar position, keep bugging them because it does work :)

  • LA123
    LA123 Member Posts: 41 Member
    #31
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    Laceygirl said:

    So I got really desperate

    So I got really desperate today and called my gyno's office to see if I could get my surgery date figured out.  It turns out the receptionist (very sweet lady) was sympathetic to my cause.  I told how difficult my life is dealing with this and how desperate I was to have it resolved ASAP and she bumped my surgery! It went from sometime in the fall, after everyone comes back from vacation, to June 12th. I am also on her radar for anything that comes up sooner than that..so just wanted to say thanks so much for the advice.  It just goes to show that the squeaky wheel really does get the grease!  If you don't avocate for yourself, who is going to?  Please if you are in a similar position, keep bugging them because it does work :)

    Great news!

    So glad your surgery got bumped up. Mine did too (back in 2015), it is really nice to get it out of the way, the wait game is the worst part. I wish you the best, hang in there, and keep the faith!

    Lucy

  • LA123
    LA123 Member Posts: 41 Member
    #32
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    EZLiving66 said:

    I have a friend in Vancouver,

    I have a friend in Vancouver, BC and she told me Canadian health care is great until you're really sick. She said anybody with money went to the United States to have their problem taken care of. Her daughter had a suspicious spot on her toe and their primary doctor said said it's probably nothing and would not give her a referral. Sadly, it turned out cancerous.

    From the time I saw my gynecologist for the biopsy (which, unlike a lot of ladies here, was pretty painless) until my first chemo after my hysterectomy, it was less than a month. 

    I'm hoping you can get in sooner because the waiting is hell! Good luck!

    Love,

    Eldri 

    Canadian Health System

    I live in Canada too. While I agree the Canadian Health System is not perfect, my experience, and that of close relatives also diagnosed with Cancer, has been nothing but outstanding.  I was diagnosed with UPSC May 11 of 2015 and my surgery was less than a month later, on June 9 2015. I had a robotic Radical Hysterectomy( everything out but the kitchen sink). It will be four years this spring since I started this battle, I take it a day at a time, but am happy to report I remain cancer free by the grace of God. Calgary has a great cancer centre (Tom Baker) and is in the process of building a brand new one at the cost of $1.4Bln. Both my parents were diagnosed with cancer in Ontario (Eastern Canada). They were treated at the Princess Margaret Cancer Centre which is one of the top five cancer research centres in the world.(and yes, 'Centre', not 'Center' is how the word is spelled in Canada, LOL)I have relatives in the US (California) and their experience has been great, but they do pay over $2.2K a month in health insurance premiums for a family of three (they own a business so cannot rely on an employer subsidized plan). From my observations, the US Health system is great if you have a good insurance plan. If you can't afford it, you options are more limited. I am grateful for Canada's Health system. We never saw one bill, not for my cancer treatment nor for my parents' and received the best treatment delivered with compassion and professionalism. IMHO, when you are fighting cancer, dealing with the shock of a grim prognosis, the disruptions to our work and family lives, dealing with health Plan's claim adjudicators could be an unwelcome additional source of stress for some people.  My advice to anyone, regardless of where you happen to be fighting this monster, is always be vigilant, there is no such thing as a 'stupid' health question, advocate for yourself as if your life depends on it (it does), be informed (thank God for this forum!), make no apologies for respectfully challenging medical practitioners opinions and, last but not least, keep the faith, fight this disease with all you've got, and trust God with the rest. 

    Lucy

  • Wannabeatit
    Wannabeatit Member Posts: 100 Member
    #33
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    Laceygirl said:

    So I got really desperate

    So I got really desperate today and called my gyno's office to see if I could get my surgery date figured out.  It turns out the receptionist (very sweet lady) was sympathetic to my cause.  I told how difficult my life is dealing with this and how desperate I was to have it resolved ASAP and she bumped my surgery! It went from sometime in the fall, after everyone comes back from vacation, to June 12th. I am also on her radar for anything that comes up sooner than that..so just wanted to say thanks so much for the advice.  It just goes to show that the squeaky wheel really does get the grease!  If you don't avocate for yourself, who is going to?  Please if you are in a similar position, keep bugging them because it does work :)

    I too am from BC. I live on

    I too am from BC. I live on Vancouver Island. I’m glad you talked to someone. I was going to suggest getting yourself on a cancellation list. You need to be in the system but sometimes you can get in even sooner than a bumped up date. Good luck.

     

  • janaes
    janaes Member Posts: 799 Member
    #34
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    Im so glad you know your

    Im so glad you know your surgery date and that it was bumped up to June. Im sure that will help alot. Your right about the sqeeky wheel does get the greese. I really does sound like yours is not cancer and i hope that for you. I had to advacate for myself at the very begining. My regular doctor was great and did what they were supposed to do. If it wasnt for the physiisiins .assistant there it would not have worked out for me but before i got there i had went to a insta care doctor because it was new years and nothing was open because of weekends and the holiday. That doctor told me if my abmormal bleeding stoped i didnt need to do anything about it. Well my bleeding did stop. I was worried it would come back and interupt my work so i desided to make a appointment with my gemeral practitioner.  Boy i dont even like to think about what would have happened if i wouldnt have gone to the doctor that day.

    I dont want to scare you .i just want you to let you know you did .the right thing calling the doctors office and telling them how you feel.. 

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