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Old 04-26-2010, 03:24 PM   #1
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reagan1861 HB User
Lost biopsy; sentinel node biopsy--please help

Hi,

I will try to make this short. I have absolutely no idea what to do so I'm hoping someone can give me any helpful info or opinions.
In Aug of 09 I had a mole removed from my back and they were supposed to send it out for biopsy. I never heard anything from them so assumed all was well. Well, they called me about a month ago and said they wanted me to come back in to check the area. Turns out they had no biopsy results cause they lost the sample.
They then excised where the scar was (it was pigmented in the middle, as if something had come back) and said they'd send that for a biopsy. The dr called today and rattled off all these terms. I need to get my report but what I managed to catch is "abnormal [something] of melanocytes associated with melanoma". The [something] sounded sort of like the word "consonance". I also caught "uncertain malignant potential". Basically he said the biopsy was inconclusive.
He told me I should probably get a sentinel node biopsy. I'm pretty upset because I feel like if they had done the biopsy to begin with, I wouldn't be in this predicament now where I have to have this further test done to find out if I have melanoma. I have two kids under three and I don't have time for this. Not to mention I don't think I should have to pay for these tests either, since it was their mistake.
I guess my question is, Should I get this node biopsy? I have read that it's used to find out what stage cancer you're in--but it's not even known whether I have cancer or not! I feel like since they screwed up the biopsy, they couldn't get a yes or no answer, and so this is the only test they're left with. I'm angry that they lost my biopsy and I'm a little worried that I do have melanoma...Please reply if you have any advice or any experience like this (I hope not).

 
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Old 04-27-2010, 05:47 AM   #2
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sudo59 HB User
Re: Lost biopsy; sentinel node biopsy--please help

Quote:
Originally Posted by reagan1861 View Post
Hi,

I will try to make this short. I have absolutely no idea what to do so I'm hoping someone can give me any helpful info or opinions.
In Aug of 09 I had a mole removed from my back and they were supposed to send it out for biopsy. I never heard anything from them so assumed all was well. Well, they called me about a month ago and said they wanted me to come back in to check the area. Turns out they had no biopsy results cause they lost the sample.
They then excised where the scar was (it was pigmented in the middle, as if something had come back) and said they'd send that for a biopsy. The dr called today and rattled off all these terms. I need to get my report but what I managed to catch is "abnormal [something] of melanocytes associated with melanoma". The [something] sounded sort of like the word "consonance". I also caught "uncertain malignant potential". Basically he said the biopsy was inconclusive.
He told me I should probably get a sentinel node biopsy. I'm pretty upset because I feel like if they had done the biopsy to begin with, I wouldn't be in this predicament now where I have to have this further test done to find out if I have melanoma. I have two kids under three and I don't have time for this. Not to mention I don't think I should have to pay for these tests either, since it was their mistake.
I guess my question is, Should I get this node biopsy? I have read that it's used to find out what stage cancer you're in--but it's not even known whether I have cancer or not! I feel like since they screwed up the biopsy, they couldn't get a yes or no answer, and so this is the only test they're left with. I'm angry that they lost my biopsy and I'm a little worried that I do have melanoma...Please reply if you have any advice or any experience like this (I hope not).

Wow, I can't believe you have to deal with this, I really feel sorry for you. You must be furious, rightfully so, I know I would be.

I think to play it safe I would have the node biopsy done, if not for any other reason than peace of mind.

I wish you well, please keep us posted.

 
Old 04-27-2010, 08:11 AM   #3
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Oleander53 HB UserOleander53 HB UserOleander53 HB User
Re: Lost biopsy; sentinel node biopsy--please help

Sorry to hear this. It sounds like your Doctor may be trying to cover his rear end. Lost a biopsy report since August??????? Not good. Total negligence on their end. The original lab they send out to will have a copy of your original pathology report. I would investigate this further. I would find out who the Doctor's office sends out to and call and ask for your report. It is your report so you have the right to a copy of it. The only way it is truely lost is if they did not send it out at all. If that is the case the know they screwed up big time.

Not sure I myself would return to that office. I had a similar situation that went on for 38 days with a lost bad biopsy report. I got a 2nd opinon and never went back to the first Doctor. When they finally discovered they had not called me they started sending me certified letters to call them.

Find out exactly what you have and why you need a node biopsy. Call the office and get a copy of your pathology report. Do some research and make a decision. If you can afford a 2nd opinion get one. I would probably get the node done if a 2nd Doctor said yes.

Sorry you are dealing with this. This is why when I get a test done now I start calling within 1 week and I call until I get the result. It is a shame I have to do this. MD Anderson puts my reports online for me to view. I like that but do not hesitate to call them if I do not see the results within 7 days.

Let us know what you decide and what you find out. Oleander

 
Old 04-27-2010, 03:36 PM   #4
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reagan1861 HB User
Re: Lost biopsy; sentinel node biopsy--please help

Thank you for your replies! Yes, I am quite angry about this. If they'd just done their job I would know one way or the other and I wouldn't be going through this right now. Not to mention that if, God forbid, I do have melanoma, it has now been spreading for 9 months.
I got my lab report today...I also asked the receptionist at the dr's office if they can show me a record of the sample being sent out. All they would say is "We have no record of it". So it seems pretty obvious to me that they never sent anything out--not that the lab or the mail lost it. The dr's office totally dropped the ball, and it seems so unfair to me that now I have to pay the price--not them. I mean the price in pain, incovenience, worry, stress--not to mention the price for a second opinion (which I will get, as I no longer trust these people) and any further tests or procedures that will need to be done to rectify THEIR mistake. Very unfair.
My next step is to find a specialist in melanoma in my area and see him/her.
Thanks again for your replies and hope you are doing well!

 
Old 05-04-2010, 07:38 PM   #5
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Oleander53 HB UserOleander53 HB UserOleander53 HB User
Re: Lost biopsy; sentinel node biopsy--please help

Reagan, Please keep us up on what is happening. Get a notebook and keep notes about all what happens. It is pure negligence.

Get yourself taken care of and then worry about if you need to make the Doctor accountable.

Medical care can be so pathetic these days. Please let us know what you find out.

Sincerely, Oleander

 
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