I need to place this story here. It is not for me but for all women. Please if anyone can understand one thing it is this. I do not want a lawsuit. I want education and this type of game play to stop. It is time we all join together so it cannot continue. I cannot get the medical help I need on my own. I need everyone on board to guide and help. Please let this stop and make awareness so no other female walks my road.
I had many things going on for some time that eventually led to a surgery to remove a tumor off of my left ovary. It was not until recently that I found that those pictures, pathology, flunked pap, and breast showings were really the answer to this all along. I flunked that pap less than two months after they removed that tumor finding. Stupid I kept bringing doctors everything to help me get diagnosed. I could not understand why no one would get involved and help me. They just kept sending me away. Doctors and hospitals kept on writing nasty letters and leaving them in my medical files indicating I was a psycho. I understand now why it was so important for them to leave this type of trail along the way. It was so no one would take me serious when seeking medical help for all of my prior ER visits and ultrasounds done showed the ovary connection and things going on years prior.
When my breast became this bad in January I had called my cousin for insight. She explained Dana Faber told her we carry the BRCA gene for early ovarian and breast cancer. My world stopped and all of my medical records fell into a picture I never wanted to live to see.
I was refused an MRI or a referral to go to a breast center now by my primary. I got my local town hall involved to get into Dana Farber. My insurance with Blue Cross for 28 years is through them. They proved I did have the right to go into Dana with all of this going on.
Little did I realize the size of the circle of game play within hospitals until this appointment? With my breast swollen into my armpit and years of medical records I had given for them to review I was sent away. I never even seen the doctor I had the appointment with this day. When I asked for my medical records back I was told no.
I then asked why you would want my medical records I hand delivered here, if I have nothing going on. They all show the breast and the ovary connection for many years. They again stated no and I was told they are now the property of Dana Faber.
I was then denied the chance to make an appointment for the BRCA genetic testing. I had come with high hopes of having this done to put this on record once and for all.
On the way out of the hospital a doctor had seen me about to cry and came over. I explained to her why I was upset when she asked. I briefly explained why I had come and how I wanted the BRCA test done for me and my daughters. I explained some of what was happening with my daughters and other family members. She stated I most certainly could have that done at this hospital and sent me up to the lobby to book this appointment.
I never did get to make it. I was then told by the receptionist that I was to wait by my phone for a call from a (name removed by EmpowHER Moderator) who was in a meeting. She wanted to come down to talk with me. I showed her the mammogram order I had in my pocket book that my doctor had given when I was sent for my recent mammogram and explained that he had written the reason it was being ordered was for only for Insomnia, GERDS, Headaches, Hematuria, and High blood pressure. He did not write of the many things covering my chest and ribs now. Or of the nodules entering my lungs. He did not write of the lesions on my spine, liver diaphragm, ovary, pituitary or the many other things that are important when trying to get someone who has all of these findings for years of breast and ovarian cancer. Why??????????? Why would a doctor who has followed you for eight years not write of all of these when giving your mammogram order. She was shocked that I possessed a copy of this order. I was then told they would not do the BRCA gene test on me and I was escorted out of the building right then. How do you fight satellite hospitals, big name doctors and insurance companies???
I have a cousin my age that became sick at the same time as I. She was diagnoses with Breast cancer stage three, and twenty two nodes positive. Dana Faber told her it was the BRCA gene mutation type of cancer she probably had. She was transferred to a local hospital in our area to have her chemo and radiation.
I on the other hand did not go on record and I now believe I know all of my whys??????
My early records at this a local hospital now make since. I was sent to this hospital years prior for my ovaries and breast pain. A surgical procedure was ordered for a mass on my ovary and then cancelled. I had returned a few years later after almost losing my life and my daughter in delivery for the same concerns in my breast and ovaries. I was told I only had minute cysts and he drew two ovaries with dots all over them. These are in my records I have with this hospital back then. I do not know if when I returned after that delivery they knew something more but I really am wondering now. They sent me away this time with nothing else done.
But when I showed up at this hospital again years later with a new primary that was part of this hospital and so sick looking for answers after they removed that tumor, I now see this would have shown a connection with them missing this early on with me and that could not happen. I believe then they realized it became more important to hide this than to put me on record now.
I have three daughters that need to go on record now not later because of their ongoing health connections with all of this. I just waited another 3 months to get into Beth Israel. I received a call a week before this appointment and was told that the Doctor I was coming to see is leaving her practice with them and they are unable to see me. My first attempt to make an appointment with them was not good. The young girl took all of my information and I mean all. When I called back as I was told to do the following week, my SOS # was not in the system. I explained I was given an ID number. When they ran this she explained someone had placed me under the name FARM and I should have known then this was not an accident. No SOS or other information was listed at this time.
Where do you go when you know you have had this happen over and over through this all? My primary the past 8 years just sent me a certified letter stating he is no longer my primary. When my breast swelled like this and he refused any further testing I knew he was in on it all along. When you tell a doctor who has been in on the game play this many years that you just learned you may carry the BRCA gene for all of this he needs to send out a certified letter so I will not get referrals. It took me 6 months to see a primary care doctor after that surgery for the ovary and tumor. I know now they will make sure I do not see another primary that will help me.
I am getting to sick to fight them anymore. They track the SOS # and your insurance #. I just played this game when I tried to get another primary.
The most amazing one yet is when I went out sick for ten months and the lesions showed up on my spine. They made me stand in front of a camera that was in the window this day. They took my picture and it was placed on the same form as my labs etc. I found this odd at this time, but even odder was the fact that the camera was not there when I returned???????? I went home crying to my daughter they are not going to help me and I believed then, that they were networking me so I would not get medical help. I grew into this suspicion when I showed up in a hospital system with a hospital I never had been to before. I tried to explain this as a satellite connection thing they use to protect patients. The odd part was the receptionist replying "I thought you have never been here before. Our system is showing all your information that you have been". Was she new there or was I right in my thinking even back then.
If you could see all of my medical records throughout this you would cry. Metastic nodule showed on my Chest CT after removing that tumor and ovary. Pre cancer cells showed in colon. I was so swollen and lost control of my bowels and urine. I have doors closing each step of the way like I have all along. I can just about prove my insurance company's involvement with all of this. I had written of this suspicion. Then I found an article last week on the internet stating that Blue Cross Blue Shield used a software program to track patients like us in hopes of loosing us as policy holders. They were issued a warning by the U. S. Department of Health and Human Services. Kathleen Sebelius. It states they deliberately used a software program to track records down and alerted the company of patients with recent breast cancer diagnoses. Where do you go when all hospitals, doctors and insurance companies stick together to protect themselves and not the patient. When you only hear from your Blue Cross health connection network the day or night prior to your appointments you know they are involved. It is the questions they ask before your appointments that scare me the most when I reflect back on this pattern. But I know it is part of the game play and I proved it when I started to not answer them and just lock their calls into my phone. The pattern became even clearer. I can show these calls locked in way before that article was in
I have a spinal that was done when those first metastic nodules originally showed. The hospital paged this doctor for about two hours. He said he forgot he was going to do it. Another doctor was originally set to do it but this doctor insisted on doing it. On the bottom of that spinal report it states, duplicate ordered, specimen cancelled. Two different testing times are written here. The first was long before mine was drawn. He said he believed this was all MS related then. The bands are sent outside the hospital for testing but the hematology shows two testing times. I now know that part of the spinal would have put this on record back then. My question now is this. Did he run that late because he was doing another spinal that morning at this hospital and used someone else's fluid for that part of my testing??????? It is a sad question but one that needs to be asked now in light of what this is about. I did not know that the game play was to make sure I never made record. A year before the surgery he had written a letter stating I had myself all worked up for this abdominal pain and he was giving me an antidepressant. If this did not help he was putting me in to have me evaluated.
He also told me I passed the evoke testing done prior to surgery, when the tumor was found. I found out I did not pass. It indicated a severe pathway disease off of the left spinal. He needed to hide this just like others. This is where everything was later found in films. I questioned my doctor about this finding and his reply was it was like being in war; you need to let it go. Like all the rest, this was one hell of an answer to be given when you are this sick.
The mammograms and Chest CT's were accelerated for a few years. The last CT of my chest area shows so much I get totally sick thinking of it. They were entering into my lungs on the last scan. On the top of that last CT done it states, Dr. John Chang with a New Hampshire address. My doctor's name is Dr. Jack Chang from Lowell. They stopped doing these Chest CT when this much showed. I was then told too many CT's are not good for my health and they stopped them. At this same time my primary's nurse practitioner had great concern that I had cancer. She was working so hard to help my daughter and I figure out our health. She sent me to see an oncologist because of all of my labs and scans. They too sent me away. When I went back to her for my follow up, she was no longer employed by my doctor. I believe he let her go in regards to her making me that appointment. I am not supposed to get diagnosed.
I now know that my primary wanted that to be the last one so he could say he never received it. The address on that last one is in his favor. I have ended up in the ER and admitted twice since the last one was ordered. I started bleeding really bad from my bowels the first time. The next was for pain in the breast and chest that was leaving me unable to get air. I was told it was some type of iiittttttttssss I was experiencing?? Or GERDS. Causing the zinging in my breast.
I have watched my records disappear. I have found failed tests that I was told I passed. I have sent for records to put this together only to have that doctor call and ask what is going on with me that I have requested my records twice. Stupid I told him what was going on with me and my search for answers and he retired instantly. He never sent my records and they never went in storage with all of the rest. Those are the records that held all of the missing links for me on putting this together back then. He was my OBYNG when I almost died giving birth to my daughter. This report I kept bringing to everyone for how much it contained that I knew was connected to the same pain I had prior, during and after that delivery. It is written over and over of the bloody fluid that was found as I started to hemorrhage a month before my due date. It shows in the pathology indications of this and the placenta was not involved. The abdomen fluid sucked from me is in other pathology reports for what was believed to be my appendix. It was circled not my appendix. I was sent for a follow up because my ovaries were a mess and adhered to my abdomen. This happened four years prior to the tumor finding. My records then show me coming for a lymph node that showed up swollen on the left of my neck that has never gone away. A year later I was sent to have a red nodule removed that was concerning many at a skin cancer health fair at my town hall. The next thing that showed was a nodule on the right of my neck. Yes when that tumor showed they knew then it had traveled already. When I became that sick after that surgery and never got my health back the game went into full play.
The original primary I had for ten years prior to the ovarian surgery suddenly moved away with no notice also. I had asked for a special consultation appointment to review my records after that surgery. He met with me and said he would. When I returned he had suddenly moved to Florida. Yes now that I know the game I see why. They all have known all along since the beginning.
I have been contacting other family members out of state. I have a cousin who just flunked her pap and mammogram. She e-mailed me a thank you for the notes I had sent out regarding this BRCA gene. I have many more I can tell you about.
I do not know what to do or where to go. I am the only person I know that put this much energy into proving she was sane. I don't like what it is about. I can prove step by step all that I have written and more.
You see when the lesions showed on my spine after losing use of my arms and left leg three years back. I sat and wrote a long letter to Brigham and Women's hospital, detailing everything of my health. My daughter had just ended up in ER again with not so good liver counts now has high protein showing in her labs. She stayed Jaundice for months and I was sick because all of her symptoms are the same as mine. So I sat and wrote that letter out to bring to them.
I was sent away by Brigham's that day with a follow up letter that states as they told me. They are not a diagnostic hospital. It states my MRI's are more than a year old. They were just done and the lesions on my spine were the latest findings. This is why I had come. The doctor I had made an appointment to see was cut short as an older doctor entered the room that day. He asked me what I do for a living and I explained I am a waitress. His reply was this. So you're telling me you do not make much money. I went home crying because of his attitude. I really believed that day that he was sending me away because I did not make enough money to come to a big Boston Hospital like theirs. I now see I had written the blueprint of my true diagnoses. He was a neurologist. I was coming to rule out what I was told as a neurological root for no feeling in upper chest and left leg and foot and much more. He knew this day what I had. Why would he then write that I had seen him and this other doctor a few years prior? I never met this resident doctor before this day and wonder now if he even worked at Brigham's a few years prior. I know this can be checked. This again is another one of the game plays involved to make sure I never made record
I finally was able to get in to see an OBGYN last week this is how it went. Now you will see why I am writing Empower her and asking for every females help. I cannot do this alone.
I still need insight and outside help from everyone. I had an appointment the other day with an OBGYN. First the girl said she needed a urine sample. So I gave one. I was then asked for a copy of my medical records that I had brought in. The next thing I heard her say as she placed them back in the slot on the wall was this. Dr. Freidman will not be needing a copy of your records. She then explained that they did not need my urine sample after all. I knew then what is in my medical records I brought was the reason why. They show too much and I know in my heart because of this no doctor is going to get involved and help me. He out talked everything I said. He kept on telling me I had nothing going on. He just sent me away and did nothing not even labs. He did do an internal ultrasound in regards to the pain. It hurt so bad to have this done. He dismissed it as being simply my bowels that hurt in there. They hit something in there that triggered my pain even more. I called to come back to him two days later because it is so painful in my womanly area. He asked me why I would think anything is going on here and I explained this. I swelled so bad and was sent for emergency appendicitis. It is circled in that report it was not my appendix. It was my ovaries that were stuck up and adhesive to the abdomen wall. My report reads that much fluid was found in my abdomen and suctioned out. It is circled the appendix appeared normal. I still kept swelling and I showed him the lymph node on my neck that showed up after that surgery and is still here. I then had an internal and external ultrasound done and this is when they sent me for a pelvic CT. This is when they found the tumor on the ovary and did the surgery. I tried to explain that my uterus was enlarged in this report and showed him the pictures of the nodules that had showed in the pelvic wall. I showed him the report of how a large red nodule then showed up on my leg. I have been very ill ever since this surgery. I then flunked my pap and the showings started in the breast next. I was later found in testing to have lesions showing on my bladder, liver, kidney, diaphragm and my right ovary was covered with cysts. He still would not listen to me and refused to do an external ultrasound or CT regarding my pain in this area. He even lied and said he could not order these only a primary doctor can. I know for a fact that any OBYGN can order these. I explained how my primary doctor just suddenly moved away and now my breast on the left is this swollen and all of the lymph nodes you can see by looking at them are swollen.
I had told him how I have sent out my medical records regarding all of this to ovarian cancer awareness sites and they told me to come back and fight him to do the testing needed and for the pain I have. He still refused and told me if I did not like his final answer I could go elsewhere. This is his way of telling me he will not be putting me on record or getting involved. I even had explained that had been in contact with you from the patient’s advocacy. He simply stated I should not listen to anyone especially advocacy places.
I am so dam sick. Not a little sick but very sick. Everything that I write to about is true. I wish more than anything that it wasn't. There is no one out there who will go against another doctor or hospital and help me. I need everyone’s help Hun. This is me but could have so easily been your mother or sister or friend. Please help me to get the medical help I need in regards to how much is in my medical record and how much hurts in every organ in my body. I am so dam swollen and I can no longer eat. I do not have one organ left in my body that it hasn't traveled to. This is why he would not make a copy of my medical records. He does not want to be the one to step in or up in regards to this. This is why no one will help. I even explained to him that when that chest ct was done and showed lymphoma or metastic lesions I had another doctor who wanted to do a spinal to rule this out but this doctor jumped in to order himself. It states duplicate ordered, specimen cancelled and two different testing times going on. One of these was an hour and a half before my spinal was drawn. This doctor I know screwed with my spinal because a year prior to the tumor showing he had written a letter saying I had myself all worked up for abdominal pain and painted a nasty picture of me. This is why it shows to different testing times. I know that spinal would have put this on record a few years back. I know in my heart they did not catch this early and are afraid of a lawsuit of some sort. I want medical help and I never want to see a lawsuit in regards to how bad I now am. I believe that any lawsuit would only make another person suffer as I have when not caught early. I want to sign anything I can to prove I will never file a suit. I want education and awareness made in regards to ovarian cancer. I want every female to know the education that is getting out there now. It is up to each female to slow down and learn to listen and never be too busy to learn. I need medical help hun now more than ever before. I do not wish for anything other than this. I know they know how bad I am. I still deserve to be diagnosed for what I have and I would love nothing more that to close my eyes and mind and blame them for missing me early on but I cannot. I should have trusted my own symptoms long before it got to that point. I do not know what you have to offer me for help in regards to my situation. I do know also had several years of OBYGN medical records simply disappear along the way regarding this all and I want to know if they can be found. I had sent for them twice but never received them. I did get a call at home from him asking me why and what I had going on. I explained my health and he simply retired. My medical records did not go into storage with everyone else’s. I know they know. Can you help me????????????