› Forums › General Melanoma Community › Need advice on what next step to take
- This topic has 33 replies, 7 voices, and was last updated 9 years, 3 months ago by
stars.
- Post
-
- August 19, 2016 at 11:25 pm
Hey everyone, please bare with me here as I'm new to this site and in desperate need for advice! I'm 26 years old and a new mommy and newly diagnosed.
On August 1st, 2016, I was diagnosed with melanoma on my abdomen. My dermatologist told me over the phone and said the surgeon would be seeing me in 2-3 days. Surgeon sees me and said I was a stage 2 melanoma. Then fast forward a week I had a wide local excision of my abdomen and a sentinel node biopsy. In the node biopsy he removed 3 lymph nodes. Yesterday I found out 2 of the lymph nodes were completely negative and one lymph node had EIGHT melanocytes that the pathologist believes to be benign. Now after this information my oncologist stated I was a stage 1b.
howver, he is recommending a right lymph node dissection. Everything that I read said that it is an extensive surgery with a lot of recovery time and potential for lymphedema. My dr said he is 99% sure I do not need the dissection but "doesn't know what else to do".
Also, he recommends no more kids but to wait at least 3 years if we are going to have anymore children. We wanted 4 babies and this news is hitting myself and my husband very hard.
Can an anyone offer any advice, words of encouragement, education, anything?!?!
Please!!
- Replies
-
-
- August 20, 2016 at 12:13 am
Hi Alestrada88,
Welcome, glad you're here (but not glad you have mel!) You've found a good group.
I don't have much advice, other than to say make sure you are being seen by a melanoma expert. The field changes too fast for a general oncologist to keep up. A mel specialist will know better about the impact of having more kids. They will also be able to stage you better and won't do something just to do something. If you need help finding a mel specialist, post again giving your general location. I'm sure someone there will chime in.
Other than that ,you need to do what you're comfortable doing, learn all about whatever drug or procedure, get second and possibly third opinions. Make an informed decision and don't look back.
Regarding LNDs, I've heard that recently the lymph node dissection is now not recommended by most prominent mel centers. I know it's still the standard of care, but this will be true until studies show that there are better options for both staging and dealing with residual or rogue mel cells. I think with the newer immuniotheraphies working better than previous options, I think this is now true. A mel doctor should be able to better advise you based on staging and options available for your stage. But again do what you're comfortable with.
I wish you every blessing (and 3 more children!)
Julie
P'S. love your picture! It's so happy!
-
- August 20, 2016 at 12:13 am
Hi Alestrada88,
Welcome, glad you're here (but not glad you have mel!) You've found a good group.
I don't have much advice, other than to say make sure you are being seen by a melanoma expert. The field changes too fast for a general oncologist to keep up. A mel specialist will know better about the impact of having more kids. They will also be able to stage you better and won't do something just to do something. If you need help finding a mel specialist, post again giving your general location. I'm sure someone there will chime in.
Other than that ,you need to do what you're comfortable doing, learn all about whatever drug or procedure, get second and possibly third opinions. Make an informed decision and don't look back.
Regarding LNDs, I've heard that recently the lymph node dissection is now not recommended by most prominent mel centers. I know it's still the standard of care, but this will be true until studies show that there are better options for both staging and dealing with residual or rogue mel cells. I think with the newer immuniotheraphies working better than previous options, I think this is now true. A mel doctor should be able to better advise you based on staging and options available for your stage. But again do what you're comfortable with.
I wish you every blessing (and 3 more children!)
Julie
P'S. love your picture! It's so happy!
-
- August 20, 2016 at 12:13 am
Hi Alestrada88,
Welcome, glad you're here (but not glad you have mel!) You've found a good group.
I don't have much advice, other than to say make sure you are being seen by a melanoma expert. The field changes too fast for a general oncologist to keep up. A mel specialist will know better about the impact of having more kids. They will also be able to stage you better and won't do something just to do something. If you need help finding a mel specialist, post again giving your general location. I'm sure someone there will chime in.
Other than that ,you need to do what you're comfortable doing, learn all about whatever drug or procedure, get second and possibly third opinions. Make an informed decision and don't look back.
Regarding LNDs, I've heard that recently the lymph node dissection is now not recommended by most prominent mel centers. I know it's still the standard of care, but this will be true until studies show that there are better options for both staging and dealing with residual or rogue mel cells. I think with the newer immuniotheraphies working better than previous options, I think this is now true. A mel doctor should be able to better advise you based on staging and options available for your stage. But again do what you're comfortable with.
I wish you every blessing (and 3 more children!)
Julie
P'S. love your picture! It's so happy!
-
- August 20, 2016 at 1:34 am
Thank you so much for your response! Unfortunately, I'm dealing with military doctors and I think the studies are all very outdated so I've been researching as much on my own as I can. We are paying out of pocket for a second opinion and not doing any further surgery until then.
Thanks again! My little family is the biggest blessing ever, if this is all that I can have and remain healthy then I'll be okay, but I need scientific proof of everything before I put more babies out of my mind. best wishes for you as well! ❤️
-
- August 20, 2016 at 1:34 am
Thank you so much for your response! Unfortunately, I'm dealing with military doctors and I think the studies are all very outdated so I've been researching as much on my own as I can. We are paying out of pocket for a second opinion and not doing any further surgery until then.
Thanks again! My little family is the biggest blessing ever, if this is all that I can have and remain healthy then I'll be okay, but I need scientific proof of everything before I put more babies out of my mind. best wishes for you as well! ❤️
-
- August 20, 2016 at 1:34 am
Thank you so much for your response! Unfortunately, I'm dealing with military doctors and I think the studies are all very outdated so I've been researching as much on my own as I can. We are paying out of pocket for a second opinion and not doing any further surgery until then.
Thanks again! My little family is the biggest blessing ever, if this is all that I can have and remain healthy then I'll be okay, but I need scientific proof of everything before I put more babies out of my mind. best wishes for you as well! ❤️
-
- August 20, 2016 at 2:15 am
So sorry you are dealing with this!! One thing I learned in helping my mom batlle melanoma is to ask for a PET scan!!! She had a negative SLB when they did the WLE (she was 1b). Think the Pet is good info to have when evaluating course of action and peace of mind. Maybe you can reuqest with your current Dr and have it on hand for the second opinion. Second opinions are another thing I wish we had done for my mom at her intitial diagnosis. She was seen in a Melanoma clinc.. but I cant help but wonder if we had gone somewhere else if they would have done a Pet and found what was going on there sooner.
I am guessing the lymph nodes you are referring to are in the groin?
Hopefully everything is clear!! Wishing you all the best!!!
-
- August 20, 2016 at 2:15 am
So sorry you are dealing with this!! One thing I learned in helping my mom batlle melanoma is to ask for a PET scan!!! She had a negative SLB when they did the WLE (she was 1b). Think the Pet is good info to have when evaluating course of action and peace of mind. Maybe you can reuqest with your current Dr and have it on hand for the second opinion. Second opinions are another thing I wish we had done for my mom at her intitial diagnosis. She was seen in a Melanoma clinc.. but I cant help but wonder if we had gone somewhere else if they would have done a Pet and found what was going on there sooner.
I am guessing the lymph nodes you are referring to are in the groin?
Hopefully everything is clear!! Wishing you all the best!!!
-
- August 20, 2016 at 2:15 am
So sorry you are dealing with this!! One thing I learned in helping my mom batlle melanoma is to ask for a PET scan!!! She had a negative SLB when they did the WLE (she was 1b). Think the Pet is good info to have when evaluating course of action and peace of mind. Maybe you can reuqest with your current Dr and have it on hand for the second opinion. Second opinions are another thing I wish we had done for my mom at her intitial diagnosis. She was seen in a Melanoma clinc.. but I cant help but wonder if we had gone somewhere else if they would have done a Pet and found what was going on there sooner.
I am guessing the lymph nodes you are referring to are in the groin?
Hopefully everything is clear!! Wishing you all the best!!!
-
- August 20, 2016 at 11:37 am
Yes he is wanting to do a right groin lymph node dissection, but can't even tell me if my nodes are positive so that's why I'm getting a second opinion. I am going to ask for a PET scan this week I have a full body check and I think that would be good to have on file!
thanks so much for the response!!!
-
- August 20, 2016 at 11:37 am
Yes he is wanting to do a right groin lymph node dissection, but can't even tell me if my nodes are positive so that's why I'm getting a second opinion. I am going to ask for a PET scan this week I have a full body check and I think that would be good to have on file!
thanks so much for the response!!!
-
- August 20, 2016 at 11:37 am
Yes he is wanting to do a right groin lymph node dissection, but can't even tell me if my nodes are positive so that's why I'm getting a second opinion. I am going to ask for a PET scan this week I have a full body check and I think that would be good to have on file!
thanks so much for the response!!!
-
- August 20, 2016 at 3:15 am
Hi Alestrada
Seeing how you're in as an Antonio, you might want to get a consult at MD Anderson in Houston. I know others on this board are being treated there (I'm not, by the way), and it's world renowned and a terrific center for melanoma. I'm sure others here can recommend specific docs there
good luck!
Stan
-
- August 20, 2016 at 3:15 am
Hi Alestrada
Seeing how you're in as an Antonio, you might want to get a consult at MD Anderson in Houston. I know others on this board are being treated there (I'm not, by the way), and it's world renowned and a terrific center for melanoma. I'm sure others here can recommend specific docs there
good luck!
Stan
-
- August 20, 2016 at 3:15 am
Hi Alestrada
Seeing how you're in as an Antonio, you might want to get a consult at MD Anderson in Houston. I know others on this board are being treated there (I'm not, by the way), and it's world renowned and a terrific center for melanoma. I'm sure others here can recommend specific docs there
good luck!
Stan
-
- August 20, 2016 at 11:38 am
Thank you!!! I'm dealing with military doctors as my husband is in the air force so I will call and see about getting a referral to md Anderson! I think given my "complicated" diagnosis I should be able to get a second opinion from a better educated dr! Thanks!!!!!
-
- August 20, 2016 at 11:38 am
Thank you!!! I'm dealing with military doctors as my husband is in the air force so I will call and see about getting a referral to md Anderson! I think given my "complicated" diagnosis I should be able to get a second opinion from a better educated dr! Thanks!!!!!
-
- August 20, 2016 at 11:38 am
Thank you!!! I'm dealing with military doctors as my husband is in the air force so I will call and see about getting a referral to md Anderson! I think given my "complicated" diagnosis I should be able to get a second opinion from a better educated dr! Thanks!!!!!
-
- August 21, 2016 at 10:19 am
Can I ask how deep your melanoma was (Breslow depth) and whether it was ulcerated or had mitosis/mitotic rate >1?
It's just that lots of people get mixed up between a stage 2 melanoma, which might justify further investigation, and a Clark level 2 melanoma. Going by what you say, stage 1B, it sounds like you had a Clark level 2 melanoma which is usually pretty thin.
I think in either case a 2nd opionin is needed. You are a young and able person, it would be a shame to under a lymphadenectomy unless absolutely necessary.
-
- August 21, 2016 at 10:19 am
Can I ask how deep your melanoma was (Breslow depth) and whether it was ulcerated or had mitosis/mitotic rate >1?
It's just that lots of people get mixed up between a stage 2 melanoma, which might justify further investigation, and a Clark level 2 melanoma. Going by what you say, stage 1B, it sounds like you had a Clark level 2 melanoma which is usually pretty thin.
I think in either case a 2nd opionin is needed. You are a young and able person, it would be a shame to under a lymphadenectomy unless absolutely necessary.
-
- August 21, 2016 at 10:19 am
Can I ask how deep your melanoma was (Breslow depth) and whether it was ulcerated or had mitosis/mitotic rate >1?
It's just that lots of people get mixed up between a stage 2 melanoma, which might justify further investigation, and a Clark level 2 melanoma. Going by what you say, stage 1B, it sounds like you had a Clark level 2 melanoma which is usually pretty thin.
I think in either case a 2nd opionin is needed. You are a young and able person, it would be a shame to under a lymphadenectomy unless absolutely necessary.
-
- August 21, 2016 at 4:32 pm
So at first the dr said I was a stage 2. Then right before surgery he said a stage 1B, the depth is 1.3mm non ulcerated, <1 mitosis. Every thing that I've researched says that is stage 1B. The SNB is where it gets confusing. The pathologist said the 8 cells (I mean 8 cells out of probably millions seems so minute) appeared to be benign. The onc dr also said he's 99% sure I don't need the CLND but that's all he can recommend to me. It just seems like he doesn't really know what to do or tell me.
I am so anxious for a second opinion. I have an appointment with my PCP who will have to order the referral. Shooting for MD Anderson but we will see what happens.
Thanks for your response!
-
- August 23, 2016 at 10:56 am
Ok. Now it kind of makes sense. It is definitely deep enough to warrant the SLNB (anything over 1mm), but alot hinges on some clarity around those 8 cells. Are they melanoma, or not? If not, forget the CLND. It's unnecessary in my view, and could really impact quality of life. If yes, it's still not an immediate yes from me… it seems the current trend is against CLND and you really need to be your own best advocate in finding out as much as you can before making a decision:
In your shoes, I would be getting those SLNB slides re-read by a specialist dermatopathologist (perhaps via the melanoma specialist you see at MD Anderson). The result would really affect which path you choose to taken when it comes to a complete lymph node dissection. It may be that even if they did turn out to be melanoma, a CLND is not required (perhaps immunotherapy instead).
-
- August 23, 2016 at 10:56 am
Ok. Now it kind of makes sense. It is definitely deep enough to warrant the SLNB (anything over 1mm), but alot hinges on some clarity around those 8 cells. Are they melanoma, or not? If not, forget the CLND. It's unnecessary in my view, and could really impact quality of life. If yes, it's still not an immediate yes from me… it seems the current trend is against CLND and you really need to be your own best advocate in finding out as much as you can before making a decision:
In your shoes, I would be getting those SLNB slides re-read by a specialist dermatopathologist (perhaps via the melanoma specialist you see at MD Anderson). The result would really affect which path you choose to taken when it comes to a complete lymph node dissection. It may be that even if they did turn out to be melanoma, a CLND is not required (perhaps immunotherapy instead).
-
- August 23, 2016 at 10:56 am
Ok. Now it kind of makes sense. It is definitely deep enough to warrant the SLNB (anything over 1mm), but alot hinges on some clarity around those 8 cells. Are they melanoma, or not? If not, forget the CLND. It's unnecessary in my view, and could really impact quality of life. If yes, it's still not an immediate yes from me… it seems the current trend is against CLND and you really need to be your own best advocate in finding out as much as you can before making a decision:
In your shoes, I would be getting those SLNB slides re-read by a specialist dermatopathologist (perhaps via the melanoma specialist you see at MD Anderson). The result would really affect which path you choose to taken when it comes to a complete lymph node dissection. It may be that even if they did turn out to be melanoma, a CLND is not required (perhaps immunotherapy instead).
-
- August 21, 2016 at 4:32 pm
So at first the dr said I was a stage 2. Then right before surgery he said a stage 1B, the depth is 1.3mm non ulcerated, <1 mitosis. Every thing that I've researched says that is stage 1B. The SNB is where it gets confusing. The pathologist said the 8 cells (I mean 8 cells out of probably millions seems so minute) appeared to be benign. The onc dr also said he's 99% sure I don't need the CLND but that's all he can recommend to me. It just seems like he doesn't really know what to do or tell me.
I am so anxious for a second opinion. I have an appointment with my PCP who will have to order the referral. Shooting for MD Anderson but we will see what happens.
Thanks for your response!
-
- August 21, 2016 at 4:32 pm
So at first the dr said I was a stage 2. Then right before surgery he said a stage 1B, the depth is 1.3mm non ulcerated, <1 mitosis. Every thing that I've researched says that is stage 1B. The SNB is where it gets confusing. The pathologist said the 8 cells (I mean 8 cells out of probably millions seems so minute) appeared to be benign. The onc dr also said he's 99% sure I don't need the CLND but that's all he can recommend to me. It just seems like he doesn't really know what to do or tell me.
I am so anxious for a second opinion. I have an appointment with my PCP who will have to order the referral. Shooting for MD Anderson but we will see what happens.
Thanks for your response!
-
- August 21, 2016 at 8:33 pm
Alestrada,
Sorry about your recent diagnosis. I was on active duty when I had my first stage I diagnosis. Once I progressed to stage III I never saw another military doctor for my melanoma. I applaud you for your efforts to get to MD Anderson. I don't think TRICARE will give you a hard time with that. It will be interesting to see what MD Anderson recommends. Up until very recently it was a given that if you had a positive SLNB that the next step was a CLND. There was a study recently published that really cast some doubt on whether that is the right thing to do.
It's really going to come down to your personal decision after hearing what your oncologist suggest. My recommendation is try to educate yourself as much as you can and advocate, advocate, advocate for yourself with your healthcare providers.
Best of luck to you.
Brian
-
- August 21, 2016 at 8:33 pm
Alestrada,
Sorry about your recent diagnosis. I was on active duty when I had my first stage I diagnosis. Once I progressed to stage III I never saw another military doctor for my melanoma. I applaud you for your efforts to get to MD Anderson. I don't think TRICARE will give you a hard time with that. It will be interesting to see what MD Anderson recommends. Up until very recently it was a given that if you had a positive SLNB that the next step was a CLND. There was a study recently published that really cast some doubt on whether that is the right thing to do.
It's really going to come down to your personal decision after hearing what your oncologist suggest. My recommendation is try to educate yourself as much as you can and advocate, advocate, advocate for yourself with your healthcare providers.
Best of luck to you.
Brian
-
- August 21, 2016 at 8:33 pm
Alestrada,
Sorry about your recent diagnosis. I was on active duty when I had my first stage I diagnosis. Once I progressed to stage III I never saw another military doctor for my melanoma. I applaud you for your efforts to get to MD Anderson. I don't think TRICARE will give you a hard time with that. It will be interesting to see what MD Anderson recommends. Up until very recently it was a given that if you had a positive SLNB that the next step was a CLND. There was a study recently published that really cast some doubt on whether that is the right thing to do.
It's really going to come down to your personal decision after hearing what your oncologist suggest. My recommendation is try to educate yourself as much as you can and advocate, advocate, advocate for yourself with your healthcare providers.
Best of luck to you.
Brian
-
- You must be logged in to reply to this topic.