› Forums › General Melanoma Community › New Melanoma diagnosis – preparing for first consultation, please help with advice
- This topic has 22 replies, 7 voices, and was last updated 12 years, 11 months ago by
nicoli.
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- May 17, 2011 at 8:04 pm
My dermatologist removed a mole from the center of my back last week because it had grown and started to bleed. She called me two days later with the news that the pathology report has shown melanoma. She has referred me to the Melanoma Center here in Houston and I have my first consultation scheduled for Friday (5/20/11). What questions should I be sure to ask the doctor at this appointment? Thanks for any advice and help from those more experienced!
My dermatologist removed a mole from the center of my back last week because it had grown and started to bleed. She called me two days later with the news that the pathology report has shown melanoma. She has referred me to the Melanoma Center here in Houston and I have my first consultation scheduled for Friday (5/20/11). What questions should I be sure to ask the doctor at this appointment? Thanks for any advice and help from those more experienced!
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- May 17, 2011 at 8:25 pm
Get a copy of your pathology report. Don't freak if it says you are level 3 or 4, that is a level, not a stage!!! You cannot be staged until they do the final wide excision and if deep enough a sentinal node biopsy. Be prepared for them to tell you that you will have a wide excision. They need to make sure that they have clean margins plus a little more. If the original mole had a depth of 1mm or was ulcerated they will suggest a sentinal node biopsy. If they don't suggest it ask if you should have one and if not ask why.
Take someone with you for that extra pair of ears!
Overall, listen to what they have to say. You will be going back and can always ask more questions as they come up. Since you are in Houston are you going to a Dr that is affilitated with MDAnderson? You have one of the best facilities in your own neighborhood. Use it.
Linda
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- May 17, 2011 at 9:03 pm
Linda,
Thank you so much for all the good advice. My husband will be with me for the consultation, so he’s my extra pair of ears. And I am going to MDAnderson, so I believe I will be in very good hands.
I wish you courage and good developments for your own situation!
Elisa -
- May 17, 2011 at 9:03 pm
Linda,
Thank you so much for all the good advice. My husband will be with me for the consultation, so he’s my extra pair of ears. And I am going to MDAnderson, so I believe I will be in very good hands.
I wish you courage and good developments for your own situation!
Elisa
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- May 17, 2011 at 8:25 pm
Get a copy of your pathology report. Don't freak if it says you are level 3 or 4, that is a level, not a stage!!! You cannot be staged until they do the final wide excision and if deep enough a sentinal node biopsy. Be prepared for them to tell you that you will have a wide excision. They need to make sure that they have clean margins plus a little more. If the original mole had a depth of 1mm or was ulcerated they will suggest a sentinal node biopsy. If they don't suggest it ask if you should have one and if not ask why.
Take someone with you for that extra pair of ears!
Overall, listen to what they have to say. You will be going back and can always ask more questions as they come up. Since you are in Houston are you going to a Dr that is affilitated with MDAnderson? You have one of the best facilities in your own neighborhood. Use it.
Linda
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- May 18, 2011 at 1:18 am
My only advice to a newly diagnosed melanoma patient is to be aggressive. Advocate for your treatment, fire any doctor who just doesn't feel right.
Research this disease but it may be best to only look at hospital websites or cancer organization websites. For now you might want to stay away from advertisement websites. Everyone and their dog has a "cure" for cancer on some website. It is not fun to research and educate yourself on melanoma but it is very important.
Ask questions on this site, this is the best site I have seen, the warriors here are extremely knowlegable and (unfortunately ) experienced.
Nicki, Stage 3b, scalp
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- May 18, 2011 at 1:18 am
My only advice to a newly diagnosed melanoma patient is to be aggressive. Advocate for your treatment, fire any doctor who just doesn't feel right.
Research this disease but it may be best to only look at hospital websites or cancer organization websites. For now you might want to stay away from advertisement websites. Everyone and their dog has a "cure" for cancer on some website. It is not fun to research and educate yourself on melanoma but it is very important.
Ask questions on this site, this is the best site I have seen, the warriors here are extremely knowlegable and (unfortunately ) experienced.
Nicki, Stage 3b, scalp
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- May 18, 2011 at 10:19 am
Amen to this advice! Don't just assume everything will be okay because you are going to a "good" hospital.
Until you make that connection with an oncologist that you see eye-to-eye with AND they prove to you that they are handling your case with proper diligence and concern, have your husband or yourself follow up on everything (and even then you still should check)! Be vigilant. Tell them you want to know your results as soon as they get them, even if that means giving you news over the phone (some doctors don't like to do this; it is important to get your feelings on the clear right away). Tell them what you want the doctor/facility to do when they get your news (ie, if more testing or treatment is needed after results, you want them to call you and set them up before your next regular appointment).
Honestly, the more you can lay on the table with regard to how you want the doctors to communicate with you and handle your case, the better chance you'll make a solid and working connection right from the start.
Write down a list of questions: everything you want an answer to, even if it sounds silly, and don't leave the office until you get an answer to every single one.
Make a treatment notebook/binder. Keep all copies of your reports, make note of your medications, changes in symptoms, appointments, what was discussed during appointments, etc. It should go with you every time you go to the doctor or go for a test.
Find out if your facility can email you test results or has an online service. Some tests you could even wait to get the results before you leave. In most cases, there is no reason to wait to hear results at your next appointment.
Finally, go with your gut. If something doens't feel right about the first doctor, look for a second, and don't feel guilty about it. You have a right to quality care you can trust; don't stop until you find it.
Please let us know how everything goes!
Michelle, wife of Don, Stage IV
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- May 18, 2011 at 6:32 pm
Michelle,
Thank you for this good advice – I've got a notebook and am adding all of your good questions to my list. I will keep you posted on how everything goes.
Best wishes for Don's treatment and comfort in the coming weeks – I hope his appointment tomorrow is encouraging.
Regards,
Elisa
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- May 18, 2011 at 6:32 pm
Michelle,
Thank you for this good advice – I've got a notebook and am adding all of your good questions to my list. I will keep you posted on how everything goes.
Best wishes for Don's treatment and comfort in the coming weeks – I hope his appointment tomorrow is encouraging.
Regards,
Elisa
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- May 18, 2011 at 10:19 am
Amen to this advice! Don't just assume everything will be okay because you are going to a "good" hospital.
Until you make that connection with an oncologist that you see eye-to-eye with AND they prove to you that they are handling your case with proper diligence and concern, have your husband or yourself follow up on everything (and even then you still should check)! Be vigilant. Tell them you want to know your results as soon as they get them, even if that means giving you news over the phone (some doctors don't like to do this; it is important to get your feelings on the clear right away). Tell them what you want the doctor/facility to do when they get your news (ie, if more testing or treatment is needed after results, you want them to call you and set them up before your next regular appointment).
Honestly, the more you can lay on the table with regard to how you want the doctors to communicate with you and handle your case, the better chance you'll make a solid and working connection right from the start.
Write down a list of questions: everything you want an answer to, even if it sounds silly, and don't leave the office until you get an answer to every single one.
Make a treatment notebook/binder. Keep all copies of your reports, make note of your medications, changes in symptoms, appointments, what was discussed during appointments, etc. It should go with you every time you go to the doctor or go for a test.
Find out if your facility can email you test results or has an online service. Some tests you could even wait to get the results before you leave. In most cases, there is no reason to wait to hear results at your next appointment.
Finally, go with your gut. If something doens't feel right about the first doctor, look for a second, and don't feel guilty about it. You have a right to quality care you can trust; don't stop until you find it.
Please let us know how everything goes!
Michelle, wife of Don, Stage IV
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- May 18, 2011 at 2:13 am
Hi there, so sorry you're a new member to this club, but I've found this is the best place on the internet to get support. Honestly I don't know how I would have gotten through my surgeries and procedures without the support provided here. I've only been a member of the Melanoma club about two months, if that.
What they will want to do first is find out if the cancer has spread to your lymph nodes. In order to do that, they'll want to find out which lymph node that area of your body goes to. With you it will either go to one of your armpits, or your neck. They way they do that is by doing injecting you with some dye that will show up on a special computer. Once they find out where the lymph node is, they'll probably want to do surgery and take out one lymph node from that location and test it for cancer. At the same time they're probably going to do more surgery on your back and take a wider area around where the mole was to make sure they get it all.
I had a mole on my upper chest. They took it off and it was melanoma. They did the injections to find out where the lymph node for that was. Then they did surgery and took a wide section of skin around where the mole was, and at the same time they took out one lymph node from under my arm. The node was cancerous. That automatically bumped me up to a stage 3, but if that happens to you, don't get upset. You're gonna be ok.
One week after that surgery I had surgery again to have all my lymph nodes out from that arm. That was up to me, but I wanted to be aggressive and make sure there was no cancer anywhere. All my lymph nodes came up fine, but I don't care, I'm still glad I did it. Now I'm clear, as far as we know, and hopefully it won't come back. I had a chance to do a medical trial on a drug called Yervoy, but it was too for away for me to travel. Meanwhile I am a stage 3b and will remain a stage3b until I pass my 5 yrs clean. My doctor will check me every few months to make sure I'm ok.
If you're scared, and I'm sure you are, let me tell you… I am the world's biggest baby when it comes to pain and medical stuff. Yet I had 3 surgeries within 6 weeks and it wasn't nearly as bad as I thought it would be. So if you have to have more surgery, just know that you can do it. You can. And we will all be praying for you.
Think like a ninja. You're gonna kick this in the ass.
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- May 18, 2011 at 2:13 am
Hi there, so sorry you're a new member to this club, but I've found this is the best place on the internet to get support. Honestly I don't know how I would have gotten through my surgeries and procedures without the support provided here. I've only been a member of the Melanoma club about two months, if that.
What they will want to do first is find out if the cancer has spread to your lymph nodes. In order to do that, they'll want to find out which lymph node that area of your body goes to. With you it will either go to one of your armpits, or your neck. They way they do that is by doing injecting you with some dye that will show up on a special computer. Once they find out where the lymph node is, they'll probably want to do surgery and take out one lymph node from that location and test it for cancer. At the same time they're probably going to do more surgery on your back and take a wider area around where the mole was to make sure they get it all.
I had a mole on my upper chest. They took it off and it was melanoma. They did the injections to find out where the lymph node for that was. Then they did surgery and took a wide section of skin around where the mole was, and at the same time they took out one lymph node from under my arm. The node was cancerous. That automatically bumped me up to a stage 3, but if that happens to you, don't get upset. You're gonna be ok.
One week after that surgery I had surgery again to have all my lymph nodes out from that arm. That was up to me, but I wanted to be aggressive and make sure there was no cancer anywhere. All my lymph nodes came up fine, but I don't care, I'm still glad I did it. Now I'm clear, as far as we know, and hopefully it won't come back. I had a chance to do a medical trial on a drug called Yervoy, but it was too for away for me to travel. Meanwhile I am a stage 3b and will remain a stage3b until I pass my 5 yrs clean. My doctor will check me every few months to make sure I'm ok.
If you're scared, and I'm sure you are, let me tell you… I am the world's biggest baby when it comes to pain and medical stuff. Yet I had 3 surgeries within 6 weeks and it wasn't nearly as bad as I thought it would be. So if you have to have more surgery, just know that you can do it. You can. And we will all be praying for you.
Think like a ninja. You're gonna kick this in the ass.
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- May 18, 2011 at 8:36 pm
Hey Rendergirl,
I am impressed how much you have learned in your 2 short months with this beast! Of course, experience is the best teacher!
You sound like a scrapper and have learned well, little one. Put on your Xena Warrior outfit and FIGHT LIKE A GIRL!!!
Nicki, Stage 3b, scalp
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- May 18, 2011 at 8:36 pm
Hey Rendergirl,
I am impressed how much you have learned in your 2 short months with this beast! Of course, experience is the best teacher!
You sound like a scrapper and have learned well, little one. Put on your Xena Warrior outfit and FIGHT LIKE A GIRL!!!
Nicki, Stage 3b, scalp
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- May 18, 2011 at 2:37 am
You should ask your doctor for the Breslow's depth of your your lesion. You should ask about what your next steps will be. Most likely you'll be told that your next step will be more surgery, a wide excision, as someone else mentioned. you should ask if they recommend that you have a "sentinal node biopsy", and/or any other tests such as MRI's or CT's or PET/CT scans baseline or staging. Ask them for a copy of your pathology report.
It's good you live near MDA, and you'll most likely be seen by very capable doctors there.
Hopefully, this will turn out to be a shallow melanoma, and they'll just give you the name of a great dermatologist for routine follow up. But right now, you need to get through your initial staging, and the rest of your surgery and recovery.
Sorry you are having to face this new diagnosis. My first melanoma diagnosis was clear back in 1983, but I still remember how shocking it was.
Good Luck,
Dian in spokane
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- May 18, 2011 at 2:37 am
You should ask your doctor for the Breslow's depth of your your lesion. You should ask about what your next steps will be. Most likely you'll be told that your next step will be more surgery, a wide excision, as someone else mentioned. you should ask if they recommend that you have a "sentinal node biopsy", and/or any other tests such as MRI's or CT's or PET/CT scans baseline or staging. Ask them for a copy of your pathology report.
It's good you live near MDA, and you'll most likely be seen by very capable doctors there.
Hopefully, this will turn out to be a shallow melanoma, and they'll just give you the name of a great dermatologist for routine follow up. But right now, you need to get through your initial staging, and the rest of your surgery and recovery.
Sorry you are having to face this new diagnosis. My first melanoma diagnosis was clear back in 1983, but I still remember how shocking it was.
Good Luck,
Dian in spokane
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- May 18, 2011 at 3:07 am
Welcome to our community. You have come to the best place for information and support. There are
many knowledgeable and experienced people here who are always eager to help answer any questions
that you may have.Sorry to read of your diagnosis. Please feel free to post details of any pathology report here in
this forum. Thanks for filling in your profile with the info that you have so far. I encourage
you to update it when you find out more. I feel that the most important detail on this page at
the moment is the "depth of primary" measurement.As to what questions to ask the doctor? I think that it is simply a matter of making a list of
anything that concerns you. Do this before your appointment and take it and a pen with you. It is
also advisable to have someone to accompany you to hear what the doctor has to say. This is
because many doctors are very busy and a lot of information can sometimes be given in a very
short time.I hope this helps.
Frank from Australia
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- May 18, 2011 at 3:07 am
Welcome to our community. You have come to the best place for information and support. There are
many knowledgeable and experienced people here who are always eager to help answer any questions
that you may have.Sorry to read of your diagnosis. Please feel free to post details of any pathology report here in
this forum. Thanks for filling in your profile with the info that you have so far. I encourage
you to update it when you find out more. I feel that the most important detail on this page at
the moment is the "depth of primary" measurement.As to what questions to ask the doctor? I think that it is simply a matter of making a list of
anything that concerns you. Do this before your appointment and take it and a pen with you. It is
also advisable to have someone to accompany you to hear what the doctor has to say. This is
because many doctors are very busy and a lot of information can sometimes be given in a very
short time.I hope this helps.
Frank from Australia
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Tagged: cutaneous melanoma
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