› Forums › General Melanoma Community › UCSF 2nd Opinion Update
- This topic has 30 replies, 3 voices, and was last updated 9 years, 6 months ago by
JustMeInCA.
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- December 2, 2014 at 6:16 pm
Hi Everyone-
I went to UCSF Melanoma Center yesterday for a 2nd opinion & they reviewed all of my pathology slides. They found that I never had a Severely Atypical Mole that was not re-excised & turned into Melanoma InSitu like I had thought. It turns out that 2 years ago it was actually Invasive Melanoma 0.4 mm in thickness, extending intraepidermally to the peripheral margin Stage 1A.
So the Invasive Melanoma was left on my face for 17+ months & retaken out 2 more times this past March & now I am being told that I need to have another surgery because I have never had the proper margins of 1 cm I only have 5 mm at this point.
I also showed her that my PET/CT Scan light up on a few areas my Spine, Ovaries, Lymph Nodes under both of my arms, & my right knee. She said this needs to be looked into.
What do you all think of this?
Thanks!
Stephanie
- Replies
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- December 3, 2014 at 12:30 am
Whenever things light up in the spine for people that worries me probably because that's where my worst stuff showed up. I would think the looking into needs to be a biopsy to see if there is a need for concern. Which to biopsy I dunno. For me they only had ct's and mri's to go on so they biopsied the t10 vertebrae. It was a few days later they did the pet/ct so they saw the other stuff light up. Once you have the biopsy result you can figure out how to proceed. However things light up for various reasons especially when the numbers are small like less than 3 so maybe it is nothing but in my opinion you should get it checked out.
Artie
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- December 3, 2014 at 12:30 am
Whenever things light up in the spine for people that worries me probably because that's where my worst stuff showed up. I would think the looking into needs to be a biopsy to see if there is a need for concern. Which to biopsy I dunno. For me they only had ct's and mri's to go on so they biopsied the t10 vertebrae. It was a few days later they did the pet/ct so they saw the other stuff light up. Once you have the biopsy result you can figure out how to proceed. However things light up for various reasons especially when the numbers are small like less than 3 so maybe it is nothing but in my opinion you should get it checked out.
Artie
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- December 3, 2014 at 4:13 pm
My T10 at that time in June of 2013 was 9.5. The symptom I had was a large bulge about half the size of my fist showed up in my right side over night. That was May of 2013. That finally got diagnosed as a seperated right external oblique muscle. And in the CT scan they saw something odd with the T10 and it pressing on my spinal cord. Back in Oct 2012 is really when things started with just washing my hands I had to grab the sink to stand for about a minute. Lots of miss diagnosis and massive back pain until January 2013. Then I thought I was fine with minor back pain and everything fine until that bulge in May. Most all the other tumors I had at that time in June 2013 were about the same number as yours. They have grown since but yeah back then that is what most of them were around 5.0 just the t10 had the large number.
Artie
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- December 3, 2014 at 4:13 pm
My T10 at that time in June of 2013 was 9.5. The symptom I had was a large bulge about half the size of my fist showed up in my right side over night. That was May of 2013. That finally got diagnosed as a seperated right external oblique muscle. And in the CT scan they saw something odd with the T10 and it pressing on my spinal cord. Back in Oct 2012 is really when things started with just washing my hands I had to grab the sink to stand for about a minute. Lots of miss diagnosis and massive back pain until January 2013. Then I thought I was fine with minor back pain and everything fine until that bulge in May. Most all the other tumors I had at that time in June 2013 were about the same number as yours. They have grown since but yeah back then that is what most of them were around 5.0 just the t10 had the large number.
Artie
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- December 3, 2014 at 5:43 pm
Oh no that sounds so terrible. I have had this muscle type pain on the left upper quardeant of my back that starts right next to my spine and goes all the way over & up to my shoulder. It keeps comming for weeks then it will ease up for a few days & return. My daughter feels like a buldge but it seems like my muscle. I take asprin & ice it etc & it is manageable. However, this past friday I woke up and was laying in bed looking at my phone & all of a sudden it felt like I was stabbed in my back I could barely move it hurt so bad. That whole area was so tight & painful I was in tears. I have been taking Motrin 800 mg & 1000 mg Tylenol along with ice/heat & creams & it is still sore & painful. I can walk fine so I dont know if something on/near my T11 would be causign this type of pian…Thoughts?
Thanks so much & I wish you all the best!!!!
Stephanie
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- December 3, 2014 at 5:43 pm
Oh no that sounds so terrible. I have had this muscle type pain on the left upper quardeant of my back that starts right next to my spine and goes all the way over & up to my shoulder. It keeps comming for weeks then it will ease up for a few days & return. My daughter feels like a buldge but it seems like my muscle. I take asprin & ice it etc & it is manageable. However, this past friday I woke up and was laying in bed looking at my phone & all of a sudden it felt like I was stabbed in my back I could barely move it hurt so bad. That whole area was so tight & painful I was in tears. I have been taking Motrin 800 mg & 1000 mg Tylenol along with ice/heat & creams & it is still sore & painful. I can walk fine so I dont know if something on/near my T11 would be causign this type of pian…Thoughts?
Thanks so much & I wish you all the best!!!!
Stephanie
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- December 3, 2014 at 5:43 pm
Oh no that sounds so terrible. I have had this muscle type pain on the left upper quardeant of my back that starts right next to my spine and goes all the way over & up to my shoulder. It keeps comming for weeks then it will ease up for a few days & return. My daughter feels like a buldge but it seems like my muscle. I take asprin & ice it etc & it is manageable. However, this past friday I woke up and was laying in bed looking at my phone & all of a sudden it felt like I was stabbed in my back I could barely move it hurt so bad. That whole area was so tight & painful I was in tears. I have been taking Motrin 800 mg & 1000 mg Tylenol along with ice/heat & creams & it is still sore & painful. I can walk fine so I dont know if something on/near my T11 would be causign this type of pian…Thoughts?
Thanks so much & I wish you all the best!!!!
Stephanie
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- December 4, 2014 at 3:29 pm
Thoughts? Yeah that sounds very familiar to me back in Nov Dec of 2012 when they kept misdiagnosing me. Then finally from Jan to May the pains seemed to pretty much go away. Little did I know at the time it was this disease. So yes the T11 can easily be causing such things. I hope you get a biopsy soon. It could just be muscles but with what I'm hearing it might not be. They thought mine were muscle spasms and muscle things and had me go to a physical therapist which just made things worse.
Artie
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- December 4, 2014 at 3:29 pm
Thoughts? Yeah that sounds very familiar to me back in Nov Dec of 2012 when they kept misdiagnosing me. Then finally from Jan to May the pains seemed to pretty much go away. Little did I know at the time it was this disease. So yes the T11 can easily be causing such things. I hope you get a biopsy soon. It could just be muscles but with what I'm hearing it might not be. They thought mine were muscle spasms and muscle things and had me go to a physical therapist which just made things worse.
Artie
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- December 4, 2014 at 10:43 pm
It depends on where they can do it. Since mine was the t10 it was basically light surgery with anestesia but I wasn't supposed to be totally out and they put pain shots in the area so no it wasn't really a big deal at all. Even afterwards I was fine and the tiny spot on the back healed really quick. There was basically tiny pieces of bone from the t10 that had broken off so that is what they took out for the biopsy.
Other spots are much easier where they can just do a needle biopsy. I'm not sure what is involved in that but I've seen people getting it done when I walk back for treatments sometimes.
One thing these hospitals are good at is handling pain. Pain shots, pain pills and who knows what else. I've tried to avoid the pain pills but the past several weeks with my knee and hip I finally started taking 2 pills of 5mg oxycodone a day.
Artie
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- December 4, 2014 at 10:43 pm
It depends on where they can do it. Since mine was the t10 it was basically light surgery with anestesia but I wasn't supposed to be totally out and they put pain shots in the area so no it wasn't really a big deal at all. Even afterwards I was fine and the tiny spot on the back healed really quick. There was basically tiny pieces of bone from the t10 that had broken off so that is what they took out for the biopsy.
Other spots are much easier where they can just do a needle biopsy. I'm not sure what is involved in that but I've seen people getting it done when I walk back for treatments sometimes.
One thing these hospitals are good at is handling pain. Pain shots, pain pills and who knows what else. I've tried to avoid the pain pills but the past several weeks with my knee and hip I finally started taking 2 pills of 5mg oxycodone a day.
Artie
-
- December 4, 2014 at 10:43 pm
It depends on where they can do it. Since mine was the t10 it was basically light surgery with anestesia but I wasn't supposed to be totally out and they put pain shots in the area so no it wasn't really a big deal at all. Even afterwards I was fine and the tiny spot on the back healed really quick. There was basically tiny pieces of bone from the t10 that had broken off so that is what they took out for the biopsy.
Other spots are much easier where they can just do a needle biopsy. I'm not sure what is involved in that but I've seen people getting it done when I walk back for treatments sometimes.
One thing these hospitals are good at is handling pain. Pain shots, pain pills and who knows what else. I've tried to avoid the pain pills but the past several weeks with my knee and hip I finally started taking 2 pills of 5mg oxycodone a day.
Artie
-
- December 4, 2014 at 3:29 pm
Thoughts? Yeah that sounds very familiar to me back in Nov Dec of 2012 when they kept misdiagnosing me. Then finally from Jan to May the pains seemed to pretty much go away. Little did I know at the time it was this disease. So yes the T11 can easily be causing such things. I hope you get a biopsy soon. It could just be muscles but with what I'm hearing it might not be. They thought mine were muscle spasms and muscle things and had me go to a physical therapist which just made things worse.
Artie
-
- December 3, 2014 at 4:13 pm
My T10 at that time in June of 2013 was 9.5. The symptom I had was a large bulge about half the size of my fist showed up in my right side over night. That was May of 2013. That finally got diagnosed as a seperated right external oblique muscle. And in the CT scan they saw something odd with the T10 and it pressing on my spinal cord. Back in Oct 2012 is really when things started with just washing my hands I had to grab the sink to stand for about a minute. Lots of miss diagnosis and massive back pain until January 2013. Then I thought I was fine with minor back pain and everything fine until that bulge in May. Most all the other tumors I had at that time in June 2013 were about the same number as yours. They have grown since but yeah back then that is what most of them were around 5.0 just the t10 had the large number.
Artie
-
- December 3, 2014 at 12:30 am
Whenever things light up in the spine for people that worries me probably because that's where my worst stuff showed up. I would think the looking into needs to be a biopsy to see if there is a need for concern. Which to biopsy I dunno. For me they only had ct's and mri's to go on so they biopsied the t10 vertebrae. It was a few days later they did the pet/ct so they saw the other stuff light up. Once you have the biopsy result you can figure out how to proceed. However things light up for various reasons especially when the numbers are small like less than 3 so maybe it is nothing but in my opinion you should get it checked out.
Artie
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- December 3, 2014 at 12:12 pm
I've been wondering about you, Stephanie, so I was glad to see your update but sorry it wasn't better news. Unfortunately, I've read of a few people who were misdiagnosed or not treated properly. Dr. Ortiz is an expert, so I'd trust her far more than anyone you could find here locally. Hopefully, others with more expertise than I have will chime in.
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- December 3, 2014 at 12:12 pm
I've been wondering about you, Stephanie, so I was glad to see your update but sorry it wasn't better news. Unfortunately, I've read of a few people who were misdiagnosed or not treated properly. Dr. Ortiz is an expert, so I'd trust her far more than anyone you could find here locally. Hopefully, others with more expertise than I have will chime in.
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- December 3, 2014 at 12:12 pm
I've been wondering about you, Stephanie, so I was glad to see your update but sorry it wasn't better news. Unfortunately, I've read of a few people who were misdiagnosed or not treated properly. Dr. Ortiz is an expert, so I'd trust her far more than anyone you could find here locally. Hopefully, others with more expertise than I have will chime in.
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- December 3, 2014 at 3:54 pm
Hi!
I was pretty shocked to say the least when she told me of the mistake. She is trying to get my insurance to approve the additional surgery to be with them so I am praying that it is approved.
Were you able to get the meds for your dad?
Thanks for thinking of me!!!
Stephanie
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- December 3, 2014 at 3:54 pm
Hi!
I was pretty shocked to say the least when she told me of the mistake. She is trying to get my insurance to approve the additional surgery to be with them so I am praying that it is approved.
Were you able to get the meds for your dad?
Thanks for thinking of me!!!
Stephanie
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- December 5, 2014 at 11:16 am
I'll send up prayers as well that they approve you. With my dad, once he got the treatment referral to UCSF, then everything they did there, including surgery, was covered.
I'm hoping to be able to go by the dispensary tomorrow. We're at the end of the quarter at school, so I'm crazy busy. The good news is that Dad has been feeling a lot better. Not sure why, but the pain seems to be reduced.
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- December 5, 2014 at 11:16 am
I'll send up prayers as well that they approve you. With my dad, once he got the treatment referral to UCSF, then everything they did there, including surgery, was covered.
I'm hoping to be able to go by the dispensary tomorrow. We're at the end of the quarter at school, so I'm crazy busy. The good news is that Dad has been feeling a lot better. Not sure why, but the pain seems to be reduced.
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- December 5, 2014 at 11:16 am
I'll send up prayers as well that they approve you. With my dad, once he got the treatment referral to UCSF, then everything they did there, including surgery, was covered.
I'm hoping to be able to go by the dispensary tomorrow. We're at the end of the quarter at school, so I'm crazy busy. The good news is that Dad has been feeling a lot better. Not sure why, but the pain seems to be reduced.
-
- December 3, 2014 at 3:54 pm
Hi!
I was pretty shocked to say the least when she told me of the mistake. She is trying to get my insurance to approve the additional surgery to be with them so I am praying that it is approved.
Were you able to get the meds for your dad?
Thanks for thinking of me!!!
Stephanie
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