› Forums › General Melanoma Community › Hello! Diagnosed last month…
- This topic has 30 replies, 6 voices, and was last updated 9 years, 9 months ago by
blessd4x.
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- December 1, 2015 at 4:00 pm
HI. My name is Brandon. I was diagnosed last month and am looking for others to share experiences with.
I'm 33 years old, married with two children.
Maybe 6 months ago or a bit more, I noticed a large mole on my scalp after getting my hair cut very short. I don't know if my hair had ever been that short so I figured it could have been there forever and I never noticed it. A few months later I noticed it was getting bumpy and was itching. I showed it to my doc and he thought maybe the mole had been cut by clippers as it looked scabbed. He had me come back in a few weeks and we'd see if it looked better. That next visit, we decided to cut a piece off and have it biopsied. Few days later, on November 5th, I was told I had melanoma at least 1.6mm. We won't know it's true size until after my surgery on December 11th.
A few days after the diagnosis, the headache began. It hasn't gone away since. It varies in intensity and travels around the head, but never goes away. There are also pains and itching in my scalp at the site of the melanoma and also in another area a few inches away.
Over a month is so long to wait for the complete diagnosis. I am taking Xanax to help with the anxiety.
I had a CT/PET scan done and it showed no signs of metastasis.
Thank you for reading and I hope to hang around here for a long time!
- Replies
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- December 1, 2015 at 7:46 pm
I'm sorry you have to be here, Brandon, but you've come to a great place for education and support. The most important piece of advice I can give you is to find a melanoma specialist *right now*. With a lesion of that size, you are (I'm sure) going to be having a Sentinel Node Biopsy at the same time of your Wide Local Excision. As long as the node biopsy comes back clear, a specialist is not absolutely necessary — but I personally would feel better.
The other piece of advice I can give you is to *always* get physical copies of pathology reports, lab work, and imaging studies (ask for the actual CDs). In the event you need to find another doctor or hospital, having these in your possession makes the transition much easier.
Keep us posted on your surgery.
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- December 1, 2015 at 7:46 pm
I'm sorry you have to be here, Brandon, but you've come to a great place for education and support. The most important piece of advice I can give you is to find a melanoma specialist *right now*. With a lesion of that size, you are (I'm sure) going to be having a Sentinel Node Biopsy at the same time of your Wide Local Excision. As long as the node biopsy comes back clear, a specialist is not absolutely necessary — but I personally would feel better.
The other piece of advice I can give you is to *always* get physical copies of pathology reports, lab work, and imaging studies (ask for the actual CDs). In the event you need to find another doctor or hospital, having these in your possession makes the transition much easier.
Keep us posted on your surgery.
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- December 1, 2015 at 7:46 pm
I'm sorry you have to be here, Brandon, but you've come to a great place for education and support. The most important piece of advice I can give you is to find a melanoma specialist *right now*. With a lesion of that size, you are (I'm sure) going to be having a Sentinel Node Biopsy at the same time of your Wide Local Excision. As long as the node biopsy comes back clear, a specialist is not absolutely necessary — but I personally would feel better.
The other piece of advice I can give you is to *always* get physical copies of pathology reports, lab work, and imaging studies (ask for the actual CDs). In the event you need to find another doctor or hospital, having these in your possession makes the transition much easier.
Keep us posted on your surgery.
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- December 1, 2015 at 8:53 pm
In addition to Susan's advice you might want to get a head MRI. The pet always lights up the brain so it is useless for the brain. It does show the surrounding skull and surface though.
A ct can show some things in the brain but the standard is a MRI. You might want to get that scan to have piece of mind to rule it out of being an issue.
Artie
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- December 1, 2015 at 8:53 pm
In addition to Susan's advice you might want to get a head MRI. The pet always lights up the brain so it is useless for the brain. It does show the surrounding skull and surface though.
A ct can show some things in the brain but the standard is a MRI. You might want to get that scan to have piece of mind to rule it out of being an issue.
Artie
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- December 1, 2015 at 8:53 pm
In addition to Susan's advice you might want to get a head MRI. The pet always lights up the brain so it is useless for the brain. It does show the surrounding skull and surface though.
A ct can show some things in the brain but the standard is a MRI. You might want to get that scan to have piece of mind to rule it out of being an issue.
Artie
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- December 2, 2015 at 5:45 am
Brandon,
i haven't been here in a few weeks. That's how this goes. You have periods where this place is your life line, your support. Then as you gain confidence and get calm and start figuring out this new, scary world you will feel more normal again and just check in on your friends here and share your journey with us!
For now, just breathe. Be grateful. Find the best specialist. Get immune therapy as soon as possible if you are at all progresses. For us(my 18 yr old son diagnosed 8/12/14) the other treatments were hard and less effective. You will be staged soon. This is important as it will dictate a lot of what path your insurance and doctor will do for you. Do things quickly, but not rushed. Ask people who have experience here. Make your choices carefully. They can be tough.
Mostly I am sorry. The disappointment was one of my biggest heartaches. This will change your life. It will be a trial. It will be hard. You will endure hard things lots of people don't know about. But what I now can see, just in the last few months, is you can endure. There are finally things that work. They don't make you super sick. You will heal from hard surgeries. You will be humbled by the love and care you receive. And life will resume again eventually! A new, beautiful life with a whole new perspective! Just breathe. You can do this! My 18 yr old had 6 big surgeries, 20 nights in icu. Radiation in his head and neck. So much. He is healing in keytruda!! His life is more normal everyday! If he can do this–you can do this!!
Prayers and love! Keep us posted. We scan Dec 9. It will be good.
Kerri-momofjake
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- December 2, 2015 at 5:45 am
Brandon,
i haven't been here in a few weeks. That's how this goes. You have periods where this place is your life line, your support. Then as you gain confidence and get calm and start figuring out this new, scary world you will feel more normal again and just check in on your friends here and share your journey with us!
For now, just breathe. Be grateful. Find the best specialist. Get immune therapy as soon as possible if you are at all progresses. For us(my 18 yr old son diagnosed 8/12/14) the other treatments were hard and less effective. You will be staged soon. This is important as it will dictate a lot of what path your insurance and doctor will do for you. Do things quickly, but not rushed. Ask people who have experience here. Make your choices carefully. They can be tough.
Mostly I am sorry. The disappointment was one of my biggest heartaches. This will change your life. It will be a trial. It will be hard. You will endure hard things lots of people don't know about. But what I now can see, just in the last few months, is you can endure. There are finally things that work. They don't make you super sick. You will heal from hard surgeries. You will be humbled by the love and care you receive. And life will resume again eventually! A new, beautiful life with a whole new perspective! Just breathe. You can do this! My 18 yr old had 6 big surgeries, 20 nights in icu. Radiation in his head and neck. So much. He is healing in keytruda!! His life is more normal everyday! If he can do this–you can do this!!
Prayers and love! Keep us posted. We scan Dec 9. It will be good.
Kerri-momofjake
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- December 2, 2015 at 5:45 am
Brandon,
i haven't been here in a few weeks. That's how this goes. You have periods where this place is your life line, your support. Then as you gain confidence and get calm and start figuring out this new, scary world you will feel more normal again and just check in on your friends here and share your journey with us!
For now, just breathe. Be grateful. Find the best specialist. Get immune therapy as soon as possible if you are at all progresses. For us(my 18 yr old son diagnosed 8/12/14) the other treatments were hard and less effective. You will be staged soon. This is important as it will dictate a lot of what path your insurance and doctor will do for you. Do things quickly, but not rushed. Ask people who have experience here. Make your choices carefully. They can be tough.
Mostly I am sorry. The disappointment was one of my biggest heartaches. This will change your life. It will be a trial. It will be hard. You will endure hard things lots of people don't know about. But what I now can see, just in the last few months, is you can endure. There are finally things that work. They don't make you super sick. You will heal from hard surgeries. You will be humbled by the love and care you receive. And life will resume again eventually! A new, beautiful life with a whole new perspective! Just breathe. You can do this! My 18 yr old had 6 big surgeries, 20 nights in icu. Radiation in his head and neck. So much. He is healing in keytruda!! His life is more normal everyday! If he can do this–you can do this!!
Prayers and love! Keep us posted. We scan Dec 9. It will be good.
Kerri-momofjake
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- December 2, 2015 at 4:32 pm
Thank you all for the replies.
Do you think I should press for an MRI right now, or wait until after the surgery? I don't think that my insurance has approved the CT/PET I had done.
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- December 3, 2015 at 2:24 pm
I would try to get the head MRI before the surgery. But that's just my opinion. That way you will know they only have to deal with the one.
I had so much back pain last winter after radiation that I told my doc there was just no way I could do a head MRI again yet. So he changed it to a head ct. He said it would give him the numbers he needed on the one I have but he would most likely not be able to see if I had any more because it was a ct not an MRI. Fortunately I've had 2 head MRI since and still have just the one pressing on the outside of my brain.
Artie
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- December 3, 2015 at 2:24 pm
I would try to get the head MRI before the surgery. But that's just my opinion. That way you will know they only have to deal with the one.
I had so much back pain last winter after radiation that I told my doc there was just no way I could do a head MRI again yet. So he changed it to a head ct. He said it would give him the numbers he needed on the one I have but he would most likely not be able to see if I had any more because it was a ct not an MRI. Fortunately I've had 2 head MRI since and still have just the one pressing on the outside of my brain.
Artie
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- December 3, 2015 at 2:24 pm
I would try to get the head MRI before the surgery. But that's just my opinion. That way you will know they only have to deal with the one.
I had so much back pain last winter after radiation that I told my doc there was just no way I could do a head MRI again yet. So he changed it to a head ct. He said it would give him the numbers he needed on the one I have but he would most likely not be able to see if I had any more because it was a ct not an MRI. Fortunately I've had 2 head MRI since and still have just the one pressing on the outside of my brain.
Artie
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- December 3, 2015 at 3:44 pm
I told my docs office this morning that my headache was worsening and I think we should do an MRI. Last night was tough at work and I woke up this morning at 3 and couldn't get back to sleep. They scheduled me tomorrow with the doc. I don't know why I need an appointment, I've been telling him for weeks about my headache.
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- December 3, 2015 at 3:44 pm
I told my docs office this morning that my headache was worsening and I think we should do an MRI. Last night was tough at work and I woke up this morning at 3 and couldn't get back to sleep. They scheduled me tomorrow with the doc. I don't know why I need an appointment, I've been telling him for weeks about my headache.
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- December 3, 2015 at 3:44 pm
I told my docs office this morning that my headache was worsening and I think we should do an MRI. Last night was tough at work and I woke up this morning at 3 and couldn't get back to sleep. They scheduled me tomorrow with the doc. I don't know why I need an appointment, I've been telling him for weeks about my headache.
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Tagged: cutaneous melanoma
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