Reluctant newbie

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10/24/2010 8:30am
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Replies: 8

I can not sleep and just discovered this site. I'm hoping to find some answers and encouragement here. I guess I don't really have a stage yet  The Dr thought  I was stage 1 but now they want to take more and do a sentinel node biopsy because the labs came back after surgery with rogue cells? Dr said my case is very odd, he has never seen this before. I am floundering here, anyone hear of something like this?

teenagermom - (10/24/2010 - 9:44am)

Hi, just wanted to stop in and let you know that there are many caring people here that will be along to offer advice and support.  My son is the one with mm and I have learned that each person's story is different.  One thing I can tell you is that you need to make sure you are seeing a physician that specializes in melanoma.  We live in NC and found a wonderful doctor in Charlotte.  It is a bit of a drive, but well worth it. 

If you are not seeing a specialist, just post your general location and I am sure some of the members here will be happy to offer suggestions.  Please be sure to hang around and just read.  There is alot to learn, but you are in the right place.

fliberdy - (10/24/2010 - 11:32am)

Thanks teenmom, I am so very sorry you and your child are going thru this. It is so difficult for me, I cant imagine what its like for you a mother to have a child suffering from mm.

I live in Southern Cal and am seeing a surgical oncologist at UC Irvine. If I need further care he will refer me to another oncologist. I am very new to this and am learning allot. I did allot of roving around the internet and got pretty freaked out. I am hoping this site will be more helpful.

Thanks for taking the time to reply and I am praying for your family.

Anonymous - (10/24/2010 - 1:12pm)

Hi,

I hope things go well for you in surgery. I live in orange county too.

Who is your female doctor that you have annual check ups. I been looking for a female doctor. What is this female doctor's specialty???

Stay strong!

fliberdy - (10/24/2010 - 1:29pm)

Thanks, my female doc is Sabine Bernbeck in HB on Beach blvd, but I am reluctant to recommend her because she missed my melanoma possibly 2 times. I have not let her know I have cancer yet, I don't want to make her feel bad. I have been seeing her for over 10 years.  She is a great OBGYN though. She has delivered many babies but now just focuses on check ups and general health.

Stay strong huh, OK I'm humming the Rocky theme in my head as I type!

Anonymous - (10/24/2010 - 2:29pm)

Thank you for the info. You are so nice, I feel obligated to warn you. That I had a bad experience with UCI Medical Center.UCI medical is a teaching hospital and I had to have a melanoma tumor removed. I was scheduled for surgery & was suppose to be under anethesia/twilight. To make a long story short, the doctor who was suppose to do the surgery was in the operating room, but the Resident Doctor did the surgery. I was not suppose to know this but I was awake doing surgery. The end results was that I did NOT get clear margins. To this day, I do not trust this doctor!!!  For what it is worth, be careful.

fliberdy - (10/24/2010 - 3:37pm)

Oh no!  That is horrible!  To tell you the truth I was a little concerned about it being a teaching hospital.  So then, did they have to go back in and take more? Do you think this had an effect on your outcome? Would it bother you to tell me the name of the Dr. that was supposed to do your surgery?  

Thanks for your honesty.

Sharyn - (10/24/2010 - 12:37pm)

First of all, relax! I had MM for a full year before finding this site, and it has been a Godsend! If your Dr is thinking Stage 1, he may be right. And if that's the case, you're in good shape. I don't know much about rogue cells, but I think that if they want to take more just to be sure, then go for it! Better to be safe than sorry. And a SNB will only provide more information. Hopefully it will be negative.

If you're not sleeping, ask your Dr for Ativan. It's a relaxant, and will help you settle so you can sleep. It is more important than ever for you to stay healthy, eat well, and be well-rested. Take care of YOU. Please let us know how you make out.

Hugs

Sharyn, Stage IV

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

fliberdy - (10/24/2010 - 1:37pm)

Oh my Sharyn you have been thru so very much. Thank you for responding, this is all new for me. Yeah this rogue cell thing is very odd according to my doc. He does seem positive though.

I will ask about Ativan, is it similar to Ambien? I tried that a while back and it had the opposite effect on me, I was climbing the walls.  I have been eating well for over a year, became almost a vegetarian. I eat lots of organics. I cant help but wonder if that did not slow this thing down, I have only known about the cancer for 2 months now.

Thanks for your kind response and a big hug back at ya

Nancy (fliberdy)