› Forums › General Melanoma Community › I’ve taken your advice !!!
- This topic has 30 replies, 7 voices, and was last updated 9 years, 4 months ago by
Linny.
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- December 26, 2014 at 6:45 pm
I will be going to OSU James Cancer Center on January 6th !!! This happened because my nurse told me that all the Braf gene does is determine my treatment , which is true but she thought I hadn’t done my research !!! I’m over them !! They told me that they test for the braf gene when they remove the melanoma ! My doctor ask if they had tested and she said no …that was on the tenth of Dec. Ummm my surgery was on the 7th of November!! When I called a week later she said it takes 10 days to get the results back ….I thought to myself ….really …its been over a month since my surgery …shouldn’t you already know ??? The doctor had assumed i had already been to oncology !! When i told him no he looked at the nurse and said make the appointment ! I called 2 weeks later to see when my appt. Was and she said that oncology wont take me until i have the rest of my nodes in my groin out ….funny cause the doctor didnt seem to think that mattered !!I am so dissatisfied with the way they have handled things….lies after lies !!! I know that going to OSU is going to scare me but I also know that I will have a fighting chance!!! I am always polite but it gave me GREAT satisfaction to call them ( answering machine) and tell them that all my records need to be sent to OSU !! God bless all of you !!!
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- December 26, 2014 at 7:30 pm
Will OSU obtain samples of your tumor (usually stored in paraffin e.g. wax blocks) from your current (now former) provider? If they're available? Did that come up in your discussions with OSU?
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- December 26, 2014 at 8:10 pm
They just want path reports,all documentation and a CD of pet scan !!! I’ll know more after my appointment!!! -
- December 26, 2014 at 8:10 pm
They just want path reports,all documentation and a CD of pet scan !!! I’ll know more after my appointment!!! -
- December 26, 2014 at 8:10 pm
They just want path reports,all documentation and a CD of pet scan !!! I’ll know more after my appointment!!!
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- December 26, 2014 at 7:52 pm
Good girl!!!! I'm glad to hear that you made an appointment elsewhere. Don't forget to make a list of questions for the folks you'll be seeing at OSU.
My gut instinct was correct — that place you were going to was very poorly run. When the a$$ doesn't know which hand is doing the wiping, you have a big problem. And when that involves your life, it's time to run like the wind.
My lymph node was removed at a local hospital and when their pathology report stated it was melanoma, they referred me to Johns Hopkins for care. I had an unknown primary (no mole/skin lesion — it just showed up in a lymph node) and the local surgeon felt I needed to be seen by specialists. When I went to Hopkins for my consultation, they were all ready with a game plan: a second surgery to remove the remaining lymph nodes from my armpit followed by a consultation with their oncologist to discuss treatment options after I was healed up.
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- December 26, 2014 at 8:12 pm
Thanks so much !!! Although its scary I know I will be in better hands !!! -
- December 26, 2014 at 8:12 pm
Thanks so much !!! Although its scary I know I will be in better hands !!! -
- December 27, 2014 at 5:25 pm
Yes, any way you slice this, it's scary. But you will definitely be in better hands than you are now. You just need to get over that one hurdle. And, you will.
Hopefully, after reviewing your records, OSU will come up with an action plan for you and be able to present it at your consultation. Don't be surprised if this includes repeat scans and studies done with "their" equipment and by "their" people. Just knowing that they're on top of things and have a plan laid out for you, helps a LOT.
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- December 27, 2014 at 5:25 pm
Yes, any way you slice this, it's scary. But you will definitely be in better hands than you are now. You just need to get over that one hurdle. And, you will.
Hopefully, after reviewing your records, OSU will come up with an action plan for you and be able to present it at your consultation. Don't be surprised if this includes repeat scans and studies done with "their" equipment and by "their" people. Just knowing that they're on top of things and have a plan laid out for you, helps a LOT.
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- December 27, 2014 at 5:25 pm
Yes, any way you slice this, it's scary. But you will definitely be in better hands than you are now. You just need to get over that one hurdle. And, you will.
Hopefully, after reviewing your records, OSU will come up with an action plan for you and be able to present it at your consultation. Don't be surprised if this includes repeat scans and studies done with "their" equipment and by "their" people. Just knowing that they're on top of things and have a plan laid out for you, helps a LOT.
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- December 26, 2014 at 8:12 pm
Thanks so much !!! Although its scary I know I will be in better hands !!!
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- December 26, 2014 at 7:52 pm
Good girl!!!! I'm glad to hear that you made an appointment elsewhere. Don't forget to make a list of questions for the folks you'll be seeing at OSU.
My gut instinct was correct — that place you were going to was very poorly run. When the a$$ doesn't know which hand is doing the wiping, you have a big problem. And when that involves your life, it's time to run like the wind.
My lymph node was removed at a local hospital and when their pathology report stated it was melanoma, they referred me to Johns Hopkins for care. I had an unknown primary (no mole/skin lesion — it just showed up in a lymph node) and the local surgeon felt I needed to be seen by specialists. When I went to Hopkins for my consultation, they were all ready with a game plan: a second surgery to remove the remaining lymph nodes from my armpit followed by a consultation with their oncologist to discuss treatment options after I was healed up.
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- December 26, 2014 at 7:52 pm
Good girl!!!! I'm glad to hear that you made an appointment elsewhere. Don't forget to make a list of questions for the folks you'll be seeing at OSU.
My gut instinct was correct — that place you were going to was very poorly run. When the a$$ doesn't know which hand is doing the wiping, you have a big problem. And when that involves your life, it's time to run like the wind.
My lymph node was removed at a local hospital and when their pathology report stated it was melanoma, they referred me to Johns Hopkins for care. I had an unknown primary (no mole/skin lesion — it just showed up in a lymph node) and the local surgeon felt I needed to be seen by specialists. When I went to Hopkins for my consultation, they were all ready with a game plan: a second surgery to remove the remaining lymph nodes from my armpit followed by a consultation with their oncologist to discuss treatment options after I was healed up.
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- December 27, 2014 at 1:46 am
Hi Rose,
I also had melanoma on my leg, calf actually. I toohad it taken down to my muscle. Did your sentinel node come back positive? My did and I did have to have my groin ones removed. It wasn’t until after I had healed and had my drain tubes out that I finally got to see my oncologist. They don’t want to deal with you until you are healed so you can take treatment. FYI, I did get lymphodema in that leg and that has proved to be quite challenging but I haven’t progressed either so I say it was worth it. The surgery was also pretty rough. I ended up with an infection so it was a long recovery but I was in the hospital for 5 days the first time and 4 for the infection. Though I’m confident it was the right choice, any step to not become stage 4 I had to take
Rachel -
- December 27, 2014 at 1:46 am
Hi Rose,
I also had melanoma on my leg, calf actually. I toohad it taken down to my muscle. Did your sentinel node come back positive? My did and I did have to have my groin ones removed. It wasn’t until after I had healed and had my drain tubes out that I finally got to see my oncologist. They don’t want to deal with you until you are healed so you can take treatment. FYI, I did get lymphodema in that leg and that has proved to be quite challenging but I haven’t progressed either so I say it was worth it. The surgery was also pretty rough. I ended up with an infection so it was a long recovery but I was in the hospital for 5 days the first time and 4 for the infection. Though I’m confident it was the right choice, any step to not become stage 4 I had to take
Rachel-
- December 27, 2014 at 2:38 am
I’m so glad to hear you’re doing better! My problem is that I was diagnosed with stage 4 before pet scan . I was told that because I had a microscopic cluster that was consistent with melanoma in my sentinel node that it made me a stage 4 ! My Pet scan came back clear and she still staged me at stage 4 ! I just feel like they aren’t being honest with me and have even avoided my calls . There are so many red flags being thrown up that I just don’t trust the nurses ! They were so supportive until it was found in my one lymph node and then they became very cold towards me which scared me even more ! I have high anxiety which I had under control until my diagnosis! My doctor assumed I had already been seen by oncology and when he found out I hadn’t he told her to make the appointment ! I have every intention of having my nodes removed because it would make me feel better ! Its been almost 2 months since my surgery and still no oncology visit ! My node removal is set for January 20th . I just want a second opinion by melanoma experts .I feel bad for that but there is no trust between me and the nurses and I feel they are only hindering my journey! I understand dealing with my anxiety can’t be easy its even taking a toll on my marriage but my gut is telling me I need a second opinion ! I surely hope you are doing better and I send my prayers to you !! -
- December 27, 2014 at 2:38 am
I’m so glad to hear you’re doing better! My problem is that I was diagnosed with stage 4 before pet scan . I was told that because I had a microscopic cluster that was consistent with melanoma in my sentinel node that it made me a stage 4 ! My Pet scan came back clear and she still staged me at stage 4 ! I just feel like they aren’t being honest with me and have even avoided my calls . There are so many red flags being thrown up that I just don’t trust the nurses ! They were so supportive until it was found in my one lymph node and then they became very cold towards me which scared me even more ! I have high anxiety which I had under control until my diagnosis! My doctor assumed I had already been seen by oncology and when he found out I hadn’t he told her to make the appointment ! I have every intention of having my nodes removed because it would make me feel better ! Its been almost 2 months since my surgery and still no oncology visit ! My node removal is set for January 20th . I just want a second opinion by melanoma experts .I feel bad for that but there is no trust between me and the nurses and I feel they are only hindering my journey! I understand dealing with my anxiety can’t be easy its even taking a toll on my marriage but my gut is telling me I need a second opinion ! I surely hope you are doing better and I send my prayers to you !! -
- December 27, 2014 at 2:38 am
I’m so glad to hear you’re doing better! My problem is that I was diagnosed with stage 4 before pet scan . I was told that because I had a microscopic cluster that was consistent with melanoma in my sentinel node that it made me a stage 4 ! My Pet scan came back clear and she still staged me at stage 4 ! I just feel like they aren’t being honest with me and have even avoided my calls . There are so many red flags being thrown up that I just don’t trust the nurses ! They were so supportive until it was found in my one lymph node and then they became very cold towards me which scared me even more ! I have high anxiety which I had under control until my diagnosis! My doctor assumed I had already been seen by oncology and when he found out I hadn’t he told her to make the appointment ! I have every intention of having my nodes removed because it would make me feel better ! Its been almost 2 months since my surgery and still no oncology visit ! My node removal is set for January 20th . I just want a second opinion by melanoma experts .I feel bad for that but there is no trust between me and the nurses and I feel they are only hindering my journey! I understand dealing with my anxiety can’t be easy its even taking a toll on my marriage but my gut is telling me I need a second opinion ! I surely hope you are doing better and I send my prayers to you !!
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- December 27, 2014 at 1:46 am
Hi Rose,
I also had melanoma on my leg, calf actually. I toohad it taken down to my muscle. Did your sentinel node come back positive? My did and I did have to have my groin ones removed. It wasn’t until after I had healed and had my drain tubes out that I finally got to see my oncologist. They don’t want to deal with you until you are healed so you can take treatment. FYI, I did get lymphodema in that leg and that has proved to be quite challenging but I haven’t progressed either so I say it was worth it. The surgery was also pretty rough. I ended up with an infection so it was a long recovery but I was in the hospital for 5 days the first time and 4 for the infection. Though I’m confident it was the right choice, any step to not become stage 4 I had to take
Rachel -
- December 27, 2014 at 2:00 pm
Great decision Rose!
I see Dr. Thomas Olencki (Medial Oncologist). He is great and very respected in the Melanoma field. I also see Dr. Doreen Agnese who is a Surgical Oncologist. OSU runs their own trials and also partner with Mofitt. I promise, you will feel so much better going here. I would also suggest you start seeing Dr. Mary Kay Luca. She is a Dermatologist who Dr. Olencki recommended to me and his wife also sees her. She specializes in Melanoma.
Good Luck Rose.
Colleen
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- December 27, 2014 at 2:00 pm
Great decision Rose!
I see Dr. Thomas Olencki (Medial Oncologist). He is great and very respected in the Melanoma field. I also see Dr. Doreen Agnese who is a Surgical Oncologist. OSU runs their own trials and also partner with Mofitt. I promise, you will feel so much better going here. I would also suggest you start seeing Dr. Mary Kay Luca. She is a Dermatologist who Dr. Olencki recommended to me and his wife also sees her. She specializes in Melanoma.
Good Luck Rose.
Colleen
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- December 27, 2014 at 2:00 pm
Great decision Rose!
I see Dr. Thomas Olencki (Medial Oncologist). He is great and very respected in the Melanoma field. I also see Dr. Doreen Agnese who is a Surgical Oncologist. OSU runs their own trials and also partner with Mofitt. I promise, you will feel so much better going here. I would also suggest you start seeing Dr. Mary Kay Luca. She is a Dermatologist who Dr. Olencki recommended to me and his wife also sees her. She specializes in Melanoma.
Good Luck Rose.
Colleen
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- December 27, 2014 at 3:54 pm
Hi Rose,
I would like to suggest that you also keep a file of all your surgeries, scans and pathology reports for your personal file from every doc and then you wouldn't have to worry if nurse A is sending all the appropriate files or not because you could take your own.
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- December 27, 2014 at 3:54 pm
Hi Rose,
I would like to suggest that you also keep a file of all your surgeries, scans and pathology reports for your personal file from every doc and then you wouldn't have to worry if nurse A is sending all the appropriate files or not because you could take your own.
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- December 27, 2014 at 3:54 pm
Hi Rose,
I would like to suggest that you also keep a file of all your surgeries, scans and pathology reports for your personal file from every doc and then you wouldn't have to worry if nurse A is sending all the appropriate files or not because you could take your own.
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