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Placental Site Trophoblastic tumor!! incorrect biopsy??

Posted In: Medical Stories 3 Replies
  • Posted By: memories
  • October 28, 2009
  • 03:19 AM

So here's my story and frustration. Let me know what you think..... aprox 6 years ago I had extreme pain, irregular menstrual cycles I did not have one for over a year. During the time I had the severe pain on my Left side along with greenish discharge and fluid for aprox 6 months I have several ultrasounds, paps, swabs, etc everything negative and fine. The Dr's then decided to do a scope along with a Biopsy of the uterus, there findings a Haystack fluid filled cyst with 350mls of fluid, and Several other cysts. Couple weeks later I was asked to come to the drs office and bring support. More findings from the biopsy, 3 drs looked at the cells of the biopsy and it was found that I had a Placental site trophoblastic tumor, only 100 cases in the world at that time. The dr said he had never seen such a case, he then gave me hcg test all negative and an ultrasound to see if he could find a mass which was negative he then brought me into office again and said "I'm going to assume you don't have it" "I think" the "biopsy was incorrect" ????? WHAT???? Incorrect well they were incorrect about the pain, the cyst, and now a rare tumor?? If it was a common tumor i could maybe see it but something like this. I had every sign and symptom but with negative HCG result. I asked if he would do another biopsy to be sure or something and he said no i was fine and to go home. I could not believe it. Now 6 years later I now have a lump on my cervix, and am going for a ct scan to see whats up, ordered by a different dr. Can biopsies be wrong? if I have a tumor and it is what it was 6 years ago believe me I will be upset.....:mad: Here's to fingers crossed that Im OK.

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  • Hi there, did your doctor repeat the hcg tests over time or base his "you don't have it" on just the one test? If so, maybe that was the mis-read test? I'm not a doctor so have no idea if biopsies can be wrong but I would be going to different doctor than the one you went to years ago. I would be dead if I had stayed with my original doctor. Mine occurred from 1996 pregnancy and wasn't diagnosed until 1998. By then it had metastasized to lungs. There was (is?) a wonderful doctor named JOhn Lurain (chicago) that I found by researching on Internet (specialized in these types of cancer) and I called his office (sorry, no longer have that number but sure it can't be too hard to locate). I did have elevated hcg levels; no period; pregnancy symptoms like weight gain, sore breasts, dizziness, fatigue). I had hysterectomy and 5 months of intense chemo. I sure hope you are able to find a different doctor and are able to get some answers. My very best wishes and I will definetly keep my fingers crossed for you! WendySo here's my story and frustration. Let me know what you think..... aprox 6 years ago I had extreme pain, irregular menstrual cycles I did not have one for over a year. During the time I had the severe pain on my Left side along with greenish discharge and fluid for aprox 6 months I have several ultrasounds, paps, swabs, etc everything negative and fine. The Dr's then decided to do a scope along with a Biopsy of the uterus, there findings a Haystack fluid filled cyst with 350mls of fluid, and Several other cysts. Couple weeks later I was asked to come to the drs office and bring support. More findings from the biopsy, 3 drs looked at the cells of the biopsy and it was found that I had a Placental site trophoblastic tumor, only 100 cases in the world at that time. The dr said he had never seen such a case, he then gave me hcg test all negative and an ultrasound to see if he could find a mass which was negative he then brought me into office again and said "I'm going to assume you don't have it" "I think" the "biopsy was incorrect" ????? WHAT???? Incorrect well they were incorrect about the pain, the cyst, and now a rare tumor?? If it was a common tumor i could maybe see it but something like this. I had every sign and symptom but with negative HCG result. I asked if he would do another biopsy to be sure or something and he said no i was fine and to go home. I could not believe it. Now 6 years later I now have a lump on my cervix, and am going for a ct scan to see whats up, ordered by a different dr. Can biopsies be wrong? if I have a tumor and it is what it was 6 years ago believe me I will be upset.....:mad: Here's to fingers crossed that Im OK.
    Anonymous 42789 Replies
    • October 28, 2009
    • 09:01 PM
    • 0
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  • Hi Wendy, thanks for your information. The HCG test was done about 2-3 times a day for about 4 days, the HCG was never elevated. So that is when he said I did not have it and after the Ultrasound was done and there was no mass found. He said the biopsy was wrong?? I was like how can it be incorrect about something so serious, and asked if he would do more testing and he said no. I was concerned then 5 years ago when this happened I just felt stupid telling another Dr I need more information and a definite yes that I did not have it. I was concerned that the HCG would not be going up not because I didn't have it but maybe because it was an inactive tumor?? but I'm no Dr. I just wished he sent me to someone whom knew about the tumor, Im also in Canada so we will See whats going to happen. Im going for a ct scan should be in a week or so as its an urgent one so maybe they will see something. Im so very happy to hear you are better! Im now concerned because of the lump found in my cervix etc. We will c.
    memories 1 Replies
    • October 29, 2009
    • 02:29 AM
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  • I found the following info on World Journal of Surgical Oncologyhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC1164436/"Unlike choriocarcinoma, the level of serum β-hCG in PSTT correlate neither with tumor burden, nor with the malignant behavior. Thus β-hCG appears to have no predictive value and the disease may still progress even if levels are not raised . The range of serum β-hCG concentrations at diagnosis in 79% of the patients is below 1000 and in 58% lower than 500 ."Indicate that you can have PSTT without having raised hcg. Seems like doctor would take biopsy results as definitive anyway, since here they always say "Where there's an issue, get tissue," for biopsy. If I were you, I would try to get my hands on copy of biopsy results and send to specialist for another opinion. I found the number for the John Brewer Trophoblastic Center at Northwestern University's Medical School where Dr. Lurain practices. It is (312) 472-4684. It has been 10 years+ since I spoke with him so it's possible he isn't as accessible as he once was but surely somebody at the center will speak with you. Have your questions written down ahead of time so you don't forget to ask anything. I doubt they care or would even ask you *where* you are calling from. In my experience with medical issues, you are your best advocate .. nobody will look out for you better than yourself. Research, research, make phone calls, get second opinions (I know it's different in Canada), make some NOISE!!! This is your life and this type of cancer, if that is indeed what you have, is not something to mess around with. Good luck with your cat scan next week and with everything to come. Wendy
    Anonymous 42789 Replies
    • October 29, 2009
    • 04:44 PM
    • 0
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