› Forums › General Melanoma Community › new here – impatient to know more
- This topic has 15 replies, 4 voices, and was last updated 11 years, 11 months ago by
Erinmay22.
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- May 17, 2012 at 12:56 pm
My husband was diagnosed with metastatic melanoma – a week ago. He had a full-body exam with the blue light on Monday and they didn't find a primary site. We are still waiting to get an appointment for the CT/PET scans. Why does it have to take so long just to find out what's going on? Don't they know what this is like – not knowing? Why can't they do something to get this started already?
How do I just get through this next phase?
My husband was diagnosed with metastatic melanoma – a week ago. He had a full-body exam with the blue light on Monday and they didn't find a primary site. We are still waiting to get an appointment for the CT/PET scans. Why does it have to take so long just to find out what's going on? Don't they know what this is like – not knowing? Why can't they do something to get this started already?
How do I just get through this next phase?
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- May 17, 2012 at 2:26 pm
I know exactly how you are feeling. When my mom got her diagnosis of cancer (we didn't even know it was melanoma at the time, but had our suspicions since she had a stage 1 removed 8 yrs earlier) they kept putting us off for weeks for scans, appointments, biopsies, etc. It was killing us. We just wanted answers and soon. After mom asked me if they were waiting so long because they thought there was no hope for her so why hurry, I picked up the phone to the doctor's office and was quite insistent but polite on getting things moving. I told the office manager honestly how we were all feeling and our stress levels were at an all time high. I ended by saying, "What if this were you or your family member." We got an appointment in 2 days for a consult. Hey, it was something. Be persistent but polite. If the secretaries aren't willing to work with you, ask to talk to a manager or nurse coordinator. They may get angry, but this is your loved one and you need to be their advocate. Your husband will need you to be his spokesman in the coming months/years and will thank you for it.
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- May 17, 2012 at 3:46 pm
Sorry to hear this news. Yes, you will get great at the hurry up and wait game. Make sure he's seeing a Melanoma specialist (like Linda said).
I was lucky when mine was first found – I had a doctor that pushed things thru very quickly. I think it was in part due to a move from North Carolina to New Jersey at the time also. I was told on a Thursday by my derm it was melanoma. She had me set up with a surgical onc the next day. Saw him and he got me in the following Tuesday for my original wide excision and sentinal lymph node biopsy. Then we had to wait for results. He then set up a CT/PET and brain MRI pretty quickly. If those were all clear I had surgery the following week.
It wasn't until my lung nodules were found in Jan 2011 that things seemed to slow down – and that was mainly on the attempting to get in drug trials (which I never ended up qualifying for).
So best of luck! There are great folks here with lots of information for you!
Erin
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- May 17, 2012 at 3:46 pm
Sorry to hear this news. Yes, you will get great at the hurry up and wait game. Make sure he's seeing a Melanoma specialist (like Linda said).
I was lucky when mine was first found – I had a doctor that pushed things thru very quickly. I think it was in part due to a move from North Carolina to New Jersey at the time also. I was told on a Thursday by my derm it was melanoma. She had me set up with a surgical onc the next day. Saw him and he got me in the following Tuesday for my original wide excision and sentinal lymph node biopsy. Then we had to wait for results. He then set up a CT/PET and brain MRI pretty quickly. If those were all clear I had surgery the following week.
It wasn't until my lung nodules were found in Jan 2011 that things seemed to slow down – and that was mainly on the attempting to get in drug trials (which I never ended up qualifying for).
So best of luck! There are great folks here with lots of information for you!
Erin
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- May 17, 2012 at 3:46 pm
Sorry to hear this news. Yes, you will get great at the hurry up and wait game. Make sure he's seeing a Melanoma specialist (like Linda said).
I was lucky when mine was first found – I had a doctor that pushed things thru very quickly. I think it was in part due to a move from North Carolina to New Jersey at the time also. I was told on a Thursday by my derm it was melanoma. She had me set up with a surgical onc the next day. Saw him and he got me in the following Tuesday for my original wide excision and sentinal lymph node biopsy. Then we had to wait for results. He then set up a CT/PET and brain MRI pretty quickly. If those were all clear I had surgery the following week.
It wasn't until my lung nodules were found in Jan 2011 that things seemed to slow down – and that was mainly on the attempting to get in drug trials (which I never ended up qualifying for).
So best of luck! There are great folks here with lots of information for you!
Erin
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- May 17, 2012 at 2:26 pm
I know exactly how you are feeling. When my mom got her diagnosis of cancer (we didn't even know it was melanoma at the time, but had our suspicions since she had a stage 1 removed 8 yrs earlier) they kept putting us off for weeks for scans, appointments, biopsies, etc. It was killing us. We just wanted answers and soon. After mom asked me if they were waiting so long because they thought there was no hope for her so why hurry, I picked up the phone to the doctor's office and was quite insistent but polite on getting things moving. I told the office manager honestly how we were all feeling and our stress levels were at an all time high. I ended by saying, "What if this were you or your family member." We got an appointment in 2 days for a consult. Hey, it was something. Be persistent but polite. If the secretaries aren't willing to work with you, ask to talk to a manager or nurse coordinator. They may get angry, but this is your loved one and you need to be their advocate. Your husband will need you to be his spokesman in the coming months/years and will thank you for it.
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- May 17, 2012 at 2:26 pm
I know exactly how you are feeling. When my mom got her diagnosis of cancer (we didn't even know it was melanoma at the time, but had our suspicions since she had a stage 1 removed 8 yrs earlier) they kept putting us off for weeks for scans, appointments, biopsies, etc. It was killing us. We just wanted answers and soon. After mom asked me if they were waiting so long because they thought there was no hope for her so why hurry, I picked up the phone to the doctor's office and was quite insistent but polite on getting things moving. I told the office manager honestly how we were all feeling and our stress levels were at an all time high. I ended by saying, "What if this were you or your family member." We got an appointment in 2 days for a consult. Hey, it was something. Be persistent but polite. If the secretaries aren't willing to work with you, ask to talk to a manager or nurse coordinator. They may get angry, but this is your loved one and you need to be their advocate. Your husband will need you to be his spokesman in the coming months/years and will thank you for it.
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