Don’t know what to do – biopsy third melanoma in 11 years

Nicky,

You pay the doctor. I suggest talking with him, leveling with him and telling him what you want and why you want it. You're very clear on both. And pursue what you need. Given your history, I'm puzzled as to why he isn't already setting all that up.

And, if for whatever reason, he opts not to work with you, then I'd contact the hospital myself and get this ball rolling.

All the best to you.

Lord, in Your mercy. Amen.

Grace and peace,

Carol

Nicky,

You pay the doctor. I suggest talking with him, leveling with him and telling him what you want and why you want it. You're very clear on both. And pursue what you need. Given your history, I'm puzzled as to why he isn't already setting all that up.

And, if for whatever reason, he opts not to work with you, then I'd contact the hospital myself and get this ball rolling.

All the best to you.

Lord, in Your mercy. Amen.

Grace and peace,

Carol

When you say "thin" melanoma, that's not enough information. How thin have they been?  SNB's are typically done around 1mm or larger unless they are ulcerated or have a high miotic rate.  This is definitley something I would discuss with your Dr before you go through with the wide excision. Once that's done the area has been compomised and the lymphatic pattern often changes.   Anotherwords, speak up for you beliefs.

Years ago there was a study that said that people with multiple primaries actually lived longer. I don't know any particulares but it has been discussed over the years on this board. I believe it was about our immune system building up due to being able to fight the primaries.  Also, once you have multiples you tend to get everything checked out early!

Good luck,

Linda

6 primaries, stage IV since 06

When you say "thin" melanoma, that's not enough information. How thin have they been?  SNB's are typically done around 1mm or larger unless they are ulcerated or have a high miotic rate.  This is definitley something I would discuss with your Dr before you go through with the wide excision. Once that's done the area has been compomised and the lymphatic pattern often changes.   Anotherwords, speak up for you beliefs.

Years ago there was a study that said that people with multiple primaries actually lived longer. I don't know any particulares but it has been discussed over the years on this board. I believe it was about our immune system building up due to being able to fight the primaries.  Also, once you have multiples you tend to get everything checked out early!

Good luck,

Linda

6 primaries, stage IV since 06

I really feel that your GP should have referred you to an oncologist a long time ago. Any
form of melanoma needs specialist care. As you have been Stage IIIB/C? since 2001, you
really do need to insist on getting the best possible medical attention.

Can you give us any more info about the desmoplastic melanoma that was on your left arm?
From what I have read, it was a Clark's level 4 melanoma with a depth 3.55 mm.

Ideally, you should consult an oncologist who specialises in melanoma. They may advise you
to have a sentinel node biopsy. They could also recommend CT and PET scans to ease your
concerns. At the moment, I think that it is really important to make sure that there are
no hidden areas of metastases.

Best wishes

Frank from Australia

I really feel that your GP should have referred you to an oncologist a long time ago. Any
form of melanoma needs specialist care. As you have been Stage IIIB/C? since 2001, you
really do need to insist on getting the best possible medical attention.

Can you give us any more info about the desmoplastic melanoma that was on your left arm?
From what I have read, it was a Clark's level 4 melanoma with a depth 3.55 mm.

Ideally, you should consult an oncologist who specialises in melanoma. They may advise you
to have a sentinel node biopsy. They could also recommend CT and PET scans to ease your
concerns. At the moment, I think that it is really important to make sure that there are
no hidden areas of metastases.

Best wishes

Frank from Australia

You know, since you have had multiple primaries, it is possible that you had a different primary (other than your in situ) spread to your groin nodes.  About 10% of the people here have unknown primaries meaning their primary that spread to their lymph nodes came from an unknown source (typically thought to be a regressed mole).  Since you know you can create multiple primaries, that still is a possibility.

As for having a SNB on your current in situ lesion, it seems like major overkill to me.  I, personally, wouldn't consider it.  (I also have had 3 primaries).  But I'm not into unnecessary surgery and the SNB itself could cause some lymphedema.  The SNB isn't 100% accurate and no guarantee against future spread.  Plenty of people here who had a negative SNB but later had a recurrence.  But it truthfully matters little what I would do, it matters what you want.  In situ basically has a 99% cure rate.  There are no blood vessels or lymph vessels in the epidermis (level 1).  So if the path report is accurate and everything is removed in the WLE, it really has no avenue to spread.

I know melanoma is much more common in Australia and GPs see it more than they do here in the US, but it does seem like with 3 primaries you could see a specialist.  I see a cutaneous oncologist just to monitor my skin.  And since you are stage III, it seems like someone other than a GP should be coordinating your care.  Certainly, your GP could order a chest X-Ray, but that would be more to monitor your stage III status than to indicate anything with this in situ lesion.  It seems like a melanoma oncologist would be a better choice for you.  Is there any way you can make the change yourself or explain to your GP that you'd prefer to see a specialist?

Best wishes,

Janner

You know, since you have had multiple primaries, it is possible that you had a different primary (other than your in situ) spread to your groin nodes.  About 10% of the people here have unknown primaries meaning their primary that spread to their lymph nodes came from an unknown source (typically thought to be a regressed mole).  Since you know you can create multiple primaries, that still is a possibility.

As for having a SNB on your current in situ lesion, it seems like major overkill to me.  I, personally, wouldn't consider it.  (I also have had 3 primaries).  But I'm not into unnecessary surgery and the SNB itself could cause some lymphedema.  The SNB isn't 100% accurate and no guarantee against future spread.  Plenty of people here who had a negative SNB but later had a recurrence.  But it truthfully matters little what I would do, it matters what you want.  In situ basically has a 99% cure rate.  There are no blood vessels or lymph vessels in the epidermis (level 1).  So if the path report is accurate and everything is removed in the WLE, it really has no avenue to spread.

I know melanoma is much more common in Australia and GPs see it more than they do here in the US, but it does seem like with 3 primaries you could see a specialist.  I see a cutaneous oncologist just to monitor my skin.  And since you are stage III, it seems like someone other than a GP should be coordinating your care.  Certainly, your GP could order a chest X-Ray, but that would be more to monitor your stage III status than to indicate anything with this in situ lesion.  It seems like a melanoma oncologist would be a better choice for you.  Is there any way you can make the change yourself or explain to your GP that you'd prefer to see a specialist?

Best wishes,

Janner