Leigh

Hi there,

I am not sure if this is the best place to write this, but just an update on my recent specialist appt re: melanoma and pregnancy and wondering if anybody has any thoughts.  I haven't read back through the post as I felt quite certain I should not have another child after everybody's responses.  However, my appointment on Thursday last week with one of the top Professors in Australia (Surgeon) makes me wonder….

His thoughts were, that at Stage 1a, Queensland, Australia data over 20 years (published last year) indicates a 92% survival rate over 5 years.  Other data would suggest 95% survival rate over 5 years.  Other surgeons/dermatologists have been much more positive with their prognostic figures given my negative sentinel lymph node, although others debate that the lymph node gives any information (no studies including this information).  One surgeon (plastics and not a melanoma specialist) suggested that this should never have been removed in the first place and some recent massive US studies indicate that in fact removal gives a worse prognosis.  The whole thing does my head in and I cant undo that so I am ignoring this.

In any case, the Professor/Melanoma Specialist states that at 3 years out, 80% of recurrences will have occurred.  Therefore, taking the worst figures,  ie. 92% survival rate, goes up to 98.4% survival rate after the three year period elapses.  If you take 95% survival, after three years this will go up to 99% survival rate after three years???  I dont know that this truly pans out this way as there is a tail end and there is always, always a risk it will recur.  I know Linda Haley who was a wonderful board member had melanoma diagnosed, waited a long period before she fell pregnant, had no issues, and then recurred 30 years later. 

I am not sure what to make of these figures.  At the end of the day we are all individuals and the stats dont mean much to you when you are the one person who recurrs.  But I am just wondering if this means the risk of falling pregnant is slim and I should not discount it completely?  It did grow whilst pregnant and I am not sure what this means in terms of risk of recurrence.

If anybody has any advice, or suggestions for a Doctor I could call in the States for a phone consult etc that would be much appreciated.  I am very confused, still very keen to have a bigger family and have been looking at all kinds of options like surrogacy and adoption, neither of which seem open to me. Any thoughts at all would be appreciated!   

Hi there,

I am not sure if this is the best place to write this, but just an update on my recent specialist appt re: melanoma and pregnancy and wondering if anybody has any thoughts.  I haven't read back through the post as I felt quite certain I should not have another child after everybody's responses.  However, my appointment on Thursday last week with one of the top Professors in Australia (Surgeon) makes me wonder….

His thoughts were, that at Stage 1a, Queensland, Australia data over 20 years (published last year) indicates a 92% survival rate over 5 years.  Other data would suggest 95% survival rate over 5 years.  Other surgeons/dermatologists have been much more positive with their prognostic figures given my negative sentinel lymph node, although others debate that the lymph node gives any information (no studies including this information).  One surgeon (plastics and not a melanoma specialist) suggested that this should never have been removed in the first place and some recent massive US studies indicate that in fact removal gives a worse prognosis.  The whole thing does my head in and I cant undo that so I am ignoring this.

In any case, the Professor/Melanoma Specialist states that at 3 years out, 80% of recurrences will have occurred.  Therefore, taking the worst figures,  ie. 92% survival rate, goes up to 98.4% survival rate after the three year period elapses.  If you take 95% survival, after three years this will go up to 99% survival rate after three years???  I dont know that this truly pans out this way as there is a tail end and there is always, always a risk it will recur.  I know Linda Haley who was a wonderful board member had melanoma diagnosed, waited a long period before she fell pregnant, had no issues, and then recurred 30 years later. 

I am not sure what to make of these figures.  At the end of the day we are all individuals and the stats dont mean much to you when you are the one person who recurrs.  But I am just wondering if this means the risk of falling pregnant is slim and I should not discount it completely?  It did grow whilst pregnant and I am not sure what this means in terms of risk of recurrence.

If anybody has any advice, or suggestions for a Doctor I could call in the States for a phone consult etc that would be much appreciated.  I am very confused, still very keen to have a bigger family and have been looking at all kinds of options like surrogacy and adoption, neither of which seem open to me. Any thoughts at all would be appreciated!   

Hi there,

I am not sure if this is the best place to write this, but just an update on my recent specialist appt re: melanoma and pregnancy and wondering if anybody has any thoughts.  I haven't read back through the post as I felt quite certain I should not have another child after everybody's responses.  However, my appointment on Thursday last week with one of the top Professors in Australia (Surgeon) makes me wonder….

His thoughts were, that at Stage 1a, Queensland, Australia data over 20 years (published last year) indicates a 92% survival rate over 5 years.  Other data would suggest 95% survival rate over 5 years.  Other surgeons/dermatologists have been much more positive with their prognostic figures given my negative sentinel lymph node, although others debate that the lymph node gives any information (no studies including this information).  One surgeon (plastics and not a melanoma specialist) suggested that this should never have been removed in the first place and some recent massive US studies indicate that in fact removal gives a worse prognosis.  The whole thing does my head in and I cant undo that so I am ignoring this.

In any case, the Professor/Melanoma Specialist states that at 3 years out, 80% of recurrences will have occurred.  Therefore, taking the worst figures,  ie. 92% survival rate, goes up to 98.4% survival rate after the three year period elapses.  If you take 95% survival, after three years this will go up to 99% survival rate after three years???  I dont know that this truly pans out this way as there is a tail end and there is always, always a risk it will recur.  I know Linda Haley who was a wonderful board member had melanoma diagnosed, waited a long period before she fell pregnant, had no issues, and then recurred 30 years later. 

I am not sure what to make of these figures.  At the end of the day we are all individuals and the stats dont mean much to you when you are the one person who recurrs.  But I am just wondering if this means the risk of falling pregnant is slim and I should not discount it completely?  It did grow whilst pregnant and I am not sure what this means in terms of risk of recurrence.

If anybody has any advice, or suggestions for a Doctor I could call in the States for a phone consult etc that would be much appreciated.  I am very confused, still very keen to have a bigger family and have been looking at all kinds of options like surrogacy and adoption, neither of which seem open to me. Any thoughts at all would be appreciated!   

Hi jP85,

thanks so much for posting your story, I really appreciate it given all that you have been going through.  I have been struggling with this ever since I first posted and have been looking for reasons to just think of the literature supporting pregnancy, but when I read your story I understand that a bigger family for us is not meant to be.  I really thank you for writing this and I hope and pray that you have as much support as you need.  Looking after a small baby while going through this must be unimagineably hard.  I wish you and your family all the best and if I lived near you I would bring you around some meals and mind your baby.  Best wishes,

Leigh

Hi jP85,

thanks so much for posting your story, I really appreciate it given all that you have been going through.  I have been struggling with this ever since I first posted and have been looking for reasons to just think of the literature supporting pregnancy, but when I read your story I understand that a bigger family for us is not meant to be.  I really thank you for writing this and I hope and pray that you have as much support as you need.  Looking after a small baby while going through this must be unimagineably hard.  I wish you and your family all the best and if I lived near you I would bring you around some meals and mind your baby.  Best wishes,

Leigh

Hi jP85,

thanks so much for posting your story, I really appreciate it given all that you have been going through.  I have been struggling with this ever since I first posted and have been looking for reasons to just think of the literature supporting pregnancy, but when I read your story I understand that a bigger family for us is not meant to be.  I really thank you for writing this and I hope and pray that you have as much support as you need.  Looking after a small baby while going through this must be unimagineably hard.  I wish you and your family all the best and if I lived near you I would bring you around some meals and mind your baby.  Best wishes,

Leigh

Thank you Angela for your resopnse also.  Especially the last paragraph.  You are right saying I should be happy with my two girls.  I had got excited and started planning for another baby, so I have been very disappointed, but ultimately I am very blessed to have my lovely wee children.  My husband just read this thread and upon finishing said clearly he does not think we should go ahead because of the risks.  So that is that.  I really appreciate everybodys input and it has truly helped us come to this decision which has been hanging around for a couple of years now.  Many thanks again for taking time to reply.

Thank you Angela for your resopnse also.  Especially the last paragraph.  You are right saying I should be happy with my two girls.  I had got excited and started planning for another baby, so I have been very disappointed, but ultimately I am very blessed to have my lovely wee children.  My husband just read this thread and upon finishing said clearly he does not think we should go ahead because of the risks.  So that is that.  I really appreciate everybodys input and it has truly helped us come to this decision which has been hanging around for a couple of years now.  Many thanks again for taking time to reply.

Thank you Angela for your resopnse also.  Especially the last paragraph.  You are right saying I should be happy with my two girls.  I had got excited and started planning for another baby, so I have been very disappointed, but ultimately I am very blessed to have my lovely wee children.  My husband just read this thread and upon finishing said clearly he does not think we should go ahead because of the risks.  So that is that.  I really appreciate everybodys input and it has truly helped us come to this decision which has been hanging around for a couple of years now.  Many thanks again for taking time to reply.