Alopecia (REALLY long...but have to get this out)

Message edited 1/14/2009 9:43:16 AM.

Re: Alopecia (REALLY long...but have to get this out)

I'm so sorry that you're going through this. It sounds like you are taking the right approach. Hopefully you will get the answers you need soon and the medicine you're taking will fix the problem. It's great that your SO is being so supportive. You will be ok!!

Re: Alopecia (REALLY long...but have to get this out)

I am so sorry! I constantly have anxiety with different MDs as well, especially regarding skin cancers. Some say moles look fine, others say no, etc....you know the story.

Who did you end up seeing at NYU? Dr. Cheung? Dr. Levine? I go there every three weeks, and just wondering if we're seeing any of the same MDs.

Re: Alopecia (REALLY long...but have to get this out)

Just focus on the good part about this unfortunately diagnosis...it's not the scarring type, so you will regrow your hair. I know you are not sure who to trust, but NYU is one of the top dermatology centers in the country, I'd lean towards them (trust me, after my skin cancers, I did my research.)

This will not ruin your life, even if it is the worst case scenario, you have a wonderful man in your life who loves you, and you cannot let this diagnosis define you (I just went to a party, and this woman said that exact thing to me about my skin cancer and scar.)

Please FM me if you need anything, I understand your worries, I had them with my surgeries.

Don't know if you still have my phone number, but you can call me anytime.

Re: Alopecia (REALLY long...but have to get this out)

I still have dark moments where I question my MDs, saying, "how do they know they got all the cancer....what if one cell was left out floating around...then it'll come back";

I question every decision my MD makes, especially when they tell me not to biopsy, that the "lesion" is non cancerous. But if I biopsy everything I think could be cancer, it would never ever end!

My therapist keeps telling me that you have to trust your MD or you will go crazy. I am having a difficult time with this, since my cancer went undiagnosed by several MDs....but I have to tell you, I feel most comfortable with NYU MDs. I will probably always have issues with trusting MDs for the rest of my life, but I have the most confidence in them.

BTW, my cousin lost a huge patch of hair on the side of her head from Alopecia Areata, and went through the injections, etc...well, she's got a full thick head of hair, it all came back and you'd never know. I could show you a pic if you'd like.

You will be ok, and you have every right to feel upset and angry. Why does this have to happen to a young, beautiful, kind, woman? I don't know. But you will get through this, and remember, you are not your mother...you will handle this.

I wish there was something I could do or say to make this anxiety go away, because I know it is torture.

Have you thought about finding a therapist in Atlanta?

Re: Alopecia (REALLY long...but have to get this out)

Thanks so much, everything you said helps so much and you are so right!

I do have a therapist and am working through this. I was doing much better and with the follow up it's on my mind again. I do have to do monthly injections so I will be thinking about this a lot more so have to find ways to deal with it a little better.

I am seeing Dr Cheung! Do you see her or Levine? I like her a lot, and really appreciate her being so thorough and talking me through every step we need to take. I will continue with her even though Im down in ATL. I was talking to SO about possibly getting a referral at Emory but we decided its worth it to stick with a doctor, hospital and practice that has been treating me and that seems to be handling my case to the best it can be handled. So I will continue to come up to NYC montly until the area is under control.

Thanks again for the support, and the recomendation to NYU Dermatology, i really do feel it is the best place for me.

Re: Alopecia (REALLY long...but have to get this out)

I see Dr Cheung every three weeks! She's been treating my scar with the Starlux laser and what a differnce.

I actually see her tomorrow for the photodynamic therapy (not looking forward to this procedure again.)

She's wonderful and if I ever have any questions, she calls me back right away. She's def. a smart cookie!

Six months ago, when I first heard my initial diagnosis of morpheaform BCC from a different practice, I contacted Levine, and she was the only MD to take the time to talk to me (mind you, she never met me, I had no appointment, and she just had me read my report over the phone....I ended up calling her nurse, and her nurse heard my diagnosis and said Levine was literally passing by her, so she handed her the phone...talk about luck!!!) Levine explained everything to me on the phone, and assured me that I was not going to die and calmed me down. She was wonderful!

You are in good hands with them. If Cheung is not in, Levine will call you back if you have any questions. So I deal with both.

Re: Alopecia (REALLY long...but have to get this out)

Ugh, I'll be thinking about you tomorrow and sending you lots of strength and good thoughts.

I like that Cheung and Levine are empathetic towards their patients. They not only diagnose and treat you but they also talk to you and help you understand what's happening and what needs to be done. That was so nice of Levine to talk to you like that...I don't think I have ever known a doctor to do that the way she did with you. My other doctor in ATL was basically telling me I was going to be bald on the top of my head but there are cosmetic surgeries where you can cut that part out and etc. etc. etc. I was hysterical and my SO was there and basically had to translate for me that this doctor is just about the facts and worst case and that in no way means that is happening. When I saw cheung...she was optimistic and not convinced i had what the other doctor thought and investigated further...the way doctors really should. Later in the follow-up she found evidence for the different diagnosis.

Again, all the best to you tomorrow and I am praying your experience is easier than your first. Your story has truly touched me, and I really do find myself thinking about you, and find your strength and perseverence inspirational when I am feeling scared and anxious. Y

Please keep me updated on how you do and I am also always available to talk.

Re: Alopecia (REALLY long...but have to get this out)

I didnt see your original post but I have Alopecia areata in one spot ( hopefully) and I have been treated for it . Fm me if you need any info...

Re: Alopecia (REALLY long...but have to get this out)

I sent you FM