Freaking out
I am freaking out. The following emails say it all. I can't handle this shit. I just can't. I can't do this again. My heart is breaking.
Me:
"Hi Dr. Surgical Oncologist,
Sorry to bother you directly. I have been calling your office for a month now trying to get my path results from the excision you did back on July 25th, without any luck.
I have requested that you call me multiple times, or that someone let me know what is happening. My calls are not returned and when I do happen to reach your secretary directly she says she'll call me back with info then doesn't. The one time she did return my call, it was 2 weeks later and she wanted to book me for the excision! I had clearly left detailed messages that I had had an excision and was looking for the pathology report.
I resorted to calling Dr. Medical Oncologist's secretary the week before last and she is having no luck getting the info either. Dr. M.O. called and left a message that there was no record of me having the excision at all.
Is the pathology not in yet? What has taken so long? When it is found, can a copy please be sent to me at home?
I cannot be reached during the day this week but please do leave a message on my answering machine or email me back if you have any information.
Thank you
Sarah"
Reply from Dr. Surgical Oncologist:
"Dear Sarah
The pathology report is available through the Mount Sinai Hospital which is probably why Dr. Medical Oncologist's office couldn't find it. The nodule that I removed was melanoma that had come back just under the skin in the soft tissues andI have been wanting to speak with you about the results and also about the MRI scan of the axilla which I reviewed again with the radiologist after we saw each other last. I know that my secretary was trying to get you to come in and see me. She offered you an appointment for last Friday. When she said that you did not want to come in I have been planning to call you to discuss the results but because of the long weekend I have not had the opportunity.
The problem is that I went around the nodule (what I could feel) but there were melanoma cells at the edges of what I took out. Also, the MRI suggests that there may be another nodule in the underarm....it looks worrisome and may be another recurrence in the soft tissue of the underarm. It seems to be in the lower underarm against the chest wall, not the upper part. I wanted to see you to reexamine you to see if I could identify it and also try and figure out what we should do next, first to try and and see if it is true, try and find out where this is and what we should do about it. I would very much like to see you to reexamine you. Please let me know what you want me to do.
Secretary, can you please mail the pathology report from MSH to Sarah? I excised an area from the underarm in June/July. Also please include her most recent MRI scan.
Dr. Surgical Oncologist"
Me back:
"WHAT?!
How could this information not have been relayed to me? I have been calling for a month. When I spoke with your secretary a couple weeks ago, I asked her about the path and she said all she had was a note that I had my MRI and I needed to set up an appointment to have an excision. I said no, I already had the excision on the 25th. She said she'd look into it and then I never heard about it again. Obviously there was miscommunication, but how could it not have been sorted out sooner? I have called and left more messages. I should have just emailed you directly Dr. S.O. as this all got sorted out in a couple hours.
So, I can see you ANY time and would like to see you, obviously, as soon as possible.I am completely shaken and in shock. Was not expecting this.
Thanks
Sarah"
FUCK!!!!!!!!
6 Comments:
Sarah,
I can understand you freaking out, this is not good news and to have waited a month to find this out is unacceptable in my opinion. The secretary sounds stupid and, as we all know, you can't fix stupid.
I don't know if this would still be considered local recurrence, I hope so. I don't get the idea from your post that there's organ involvement either, which is a positive thing.
Hopefully more surgery is all you have to do, I know it sucks, but if you're anything like me, it seems like the lesser of all the evils, if you know what I mean...
Wishing you the best and sending you a big hug.
Heather
Gosh Sarah,
I don't know what to say about the foul up at your doctor's office. I am so angry on your behalf. I guess the positive part is the doctor is accessible and now it will be taken care of. Even so there is no excuse for his staff.
I have read your patnet, although not recently. As I recall you have had several regional recurrences. I guess the next thing I wonder about is whether or not there are clinical trials that it would be practical for you to do. I know you live in Canada and I am not familiar with what's available there. The NCI website has an advanced search where you can enter a country and they sponsor some trials in other countries which might be something for you to consider, if Canada doesn't have any you want to do. I am sending out good thoughts for you and angry ones at the nurse. I try to give all health care people the benefit of the doubt, knowing they have hard jobs but there is no excuse for what she did to you.
As ever, Carver.
Thanks ladies,
I have woken up this morning with a clearer mind.
No, it doesn't look like there is organ invlovement but it worries me that it looks like something on the chest wall. That is pretty darn close and to the lungs and possibly hard to get at. And would it still be considered local? I don't know. It also concerns me that she didn't say, if it is something, we'll get you in a do something about it. I read it as she doesn't know what she could do.
Last time I saw her she indicated that if the large mass in my armpit was melanoma (it turned out to be scar tissue) that she didn't think she could ressect it. So, I'm getting really worried that the time is coming soon where this starts to get inoperable.
As ever, both of you, and everyone atthe mpip board are pillars of strength for me. I know that I can walk this path that so many others have before me.
Always in my thoughts.
Sarah
Oh, Sarah. I'm so sorry about this news. And I'm infuriated on your behalf for the secretary's fuck-up.. and worse, the fact that she clearly lied about it to your medical oncologist.
Take care. Hope the next round of news is good (and faster coming!)
Take care Sarah. I'm so angry on your behalf about this terrible mess that you've had to deal with, on top of all the emotional turmoil.
It's not fair. :(
Hi Sarah
I cannot believe that you are going through all of this waiting and now this cockup! And I thought Australia was bad! It sounds as if that secretary could find herself looking for a new job (and rightly so! - we're not talking about flipping burgers here and getting the order wrong!)
I think you are right, that this is a local recurrance with no organ involvement. Good news (isn't it funny how our goal posts change - just having this in the first place isn't the best of news!)
As I am not in Canada I cannot give you any advice, just want you to know that I am thinking of you and Derek.
All the very best
Kristy
PS I'm so pleased you were also in contact with Imo. Wasn't she a lovely, lovely girl.
PPS Tax legislation?
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