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Old 08-04-2003, 11:03 AM   #1
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Question Just Diagnosed with Melanoma, now what?

Hi Group-
My 38 yr old husband was just diagnosed with Melanoma by his dermatologist after a biopsy of a mole that I thought looked like it was changing. He is now scheduled for an appointment with a surgeon to remove a larger area as well as an appointment with his Internal Medicine Dr for some blood tests.
I am looking for advice about what type of tests he should have at this time, as well as what type of Doc is best to see and handle this type of cancer.
Thank you for any help.

 
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Old 08-04-2003, 01:53 PM   #2
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My DX came this past Feb. by my dermatologist and I was immediately sent to an oncologist for the wide excision surgery and sentinal node biopsy. This was all done in the hospital with an overnight stay. They did not do any other biopsies prior to the wide excision due to the fact that any further surgery to that area could affect the sentinal node drainage. I do recommend the sentinal node mapping and biopsy even if your husbands melanoma is shallow. Have they give you a depth (mine was 1.03mm and Clark's level 3).The sentinal node biopsy will help asess if it has spread to the lymph nodes that the site drains to. This will help them stage the cancer later.

I truly believe his next stop should be with an oncologist that specializes in melanoma. This is a tricky, fast moving, unpredictable cancer that needs a specialist.

Have they given you all any info beyond the fact that it is a melanoma?

 
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Old 08-04-2003, 04:04 PM   #3
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So far the only info we have it that it was .7 mm in depth - nothing about a Clark's number at all. He does have an appointment with a Surgeon tomorrow, but I'm under the impression it is a general surgeon not a oncologist.

 
Old 08-04-2003, 04:41 PM   #4
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I too think he should see an oncologist but he probably will be referred to one. These are really
scary lesions. Is he very fair skinned with blue eyes?
I will be thinking of you both. Keep in touch.
SusanGene
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Old 08-04-2003, 11:34 PM   #5
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Hi LHarker
My melanoma sounds just exactly like your husbands - about the same thickness. Anything less than 2mm thick has a VERY good chance of complete cure so please don't worry too much about this.

I had the initial melanoma removed then I was referred to a general surgeon for a further straightforward removal of an area around the first incision - end of treatment! I was followed up in the dermatology department every 3 months for 3 years & at one point had a couple of suspect lymph nodes removed but that was it.

There was no need for any Oncologist involvement whatsoever. That was over 5 years ago & I've had no further problems.

Best wishes to your husband. I hope he has the same successful outcome as I did - I'm sure he will.

Lidia

 
Old 08-05-2003, 01:30 PM   #6
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Thanks for the replies-
Saw the Surgeon today. Although his Breslow thickness is just .73 his Clark's level was 4. So we are scheduled for a sentinal (spelling?) node biopsy and a wide local excision a week from today. He also referred him to an Oncologist at the Hubert Humphrey Cancer Center in Minneapolis. They gave him about a 15% chance that it had spread to his lymph nodes. Guess we'll know a lot more a week from now.

 
Old 08-05-2003, 02:07 PM   #7
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I am so glad to hear that they are taking all the steps they need to and in a timely manner. Where exactly is your husbands melanoma? (I am sure that explains the high Breslow's but low thickness...mine was located on an area covered by relatively thin layer of skin so therefore it invaded into a more "important" or vascular area). Feel confident in knowing that this action is the popular protocol now. They don't act as conservatively as they once did and that has helped save more lives.
I am sure all will come out just fine and I hope that you keep us all up to date. I would be happy to answer any questions you may have (as I am sure any other board members would...why else are we here? : ) )

Good luck to you both. You will be in my thoughts and prayers.

Kathy

 
Old 08-05-2003, 02:09 PM   #8
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sorry...correction...LOW Breslow's and HIGHER Clarks...in reference to your husband's lesion and DX.

 
Old 08-05-2003, 02:11 PM   #9
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Thanks Kathy-
His melanoma is just above his right shoulder blade.
Appreciate the comments and prayers!

 
Old 08-05-2003, 03:17 PM   #10
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Hi Everybody
Does anyone know exactly what the Clark's Level means? Mine was 3. With a Breslow thickness of 0.7mm & Clark's 3, what sort of treatment would I expect in the USA with those levels?

I'm curious because over here in the UK I don't even remember getting a blood test in the beginning lol I just got told it was gone after they cut a big chunk out of my leg & that was it! I did get a thorough skin check every 3 months & several other moles chopped out - legs like a patchwork quilt! They used to probe around my lymph nodes when I went & I got a pair of large ones removed from my armpit but the diagnosis there was non-specific.

Lidia

 
Old 08-05-2003, 03:30 PM   #11
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Linda-
The definition of Clark's level is:
The level of invasion of primary malignant melanoma of the skin; limited to the epidermis, I; into the underlying papillary dermis, II; to the junction of the papillary and reticular dermis, III; into the reticular dermis, IV; into the subcutaneous fat, V. The prognosis is worse with each successive deeper level of invasion
See my above post for what they have suggested for my husbands treatment of a .73 with Clark's level 4
The Surgeon today said there were no blood tests nessisary.

 
Old 08-05-2003, 05:05 PM   #12
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Anyone who has been diagnosed with melanoma should have exams every three months by someone who is specialized in melanoma. They should be given x-rays and their body should be physically examined for any lumps or enlarged lymph nodes. Blood tests may also be helpful. Be sure to get these checkups, and make sure they are done properly. Treatments vary depending on what medical center, doctor, or HMO etc that you have. It is up to you to make sure you get the proper treatment because you can't leave it up to your health care providers to do the right thing.

My dad had a clark level V-IV and Breslow level 3.5 melanoma with a clean sentinal biopsy of the nearby lymph nodes. But being uneducated about melanoma, he trusted his doctors completely. He didn't get the proper follow-up although he went to all of the exams that they recommended. He didn't recieve blood tests or x-rays, but only recieved a quick inspection of his skin for new lesions. His dermatologist was so pathetically untrained that when lumps started appearing on his body, she dismissed them as cysts. Even though he went in specifically to point them out to her.

To make a long story short, because he was given improper follow-up by his health care "professionals" at Kaiser Permante, he died two years after his original lesion was removed.

I am not trying to scare you. Your husband's melanoma was definetly caught sooner than my dad's was. But please be diligent in getting the best follow-up possible. You cannot count on health care professionals to do the right thing. By posting here and hopefully doing other research as well, you are being proactive and learning all you can. Best of luck to you.

[This message has been edited by nebulous (edited 08-05-2003).]

 
Old 08-05-2003, 11:25 PM   #13
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Thanks for the info LHarker. I'll have to go & do some anatomy research now to see where everything stops & starts.

Hi Nebulous
How are you? Hope all is well with you. I'm sure everyone will know that you're not trying to scare them, just giving good advice. How is your research going into follow-up procedures? Are you making good progress?

My best wishes to all
Lidia

 
Old 08-06-2003, 05:56 AM   #14
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Nebulous is absolutely correct in the advice on follow-up. In fact my own oncologist made the comment that it's not what happens in 9 months that we need to worry about necessarily but in the 9 years. I know this can sound somewhat hopeless but I look at it as incentive to stay on top of it, even beyond the traditional 5 year mark for most other cancers.

Nebulous-I am truly sorry for the loss of your father.

 
Old 08-06-2003, 03:53 PM   #15
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Hi Lidia,
So far on the follow-up, I have found, unfortunately, that it is pretty much up to the HMO, medical center, doctor, etc. to recommend whatever follow-up care they decide is appropriate. There are really no guidelines that they must follow. It is almost as if they aren't held accountable. We have talked to 3 lawyers, and they have basically told us that we would have to literally prove that my dad would not have died had he been given the proper follow-up. But since he wasn't given the proper follow-up(x-rays, blood tests, etc.) we have no way of proving that his melanoma had not already metastasized by the time it was first diagnosed. In other words, we not only have to prove that Kaiser was negligent, but that their negligence directly caused my dad's death. But since they did not do the x-rays or blood tests etc., there is no proof.

So I must tell everyone that it is up to them to make sure they get the proper care. There is no one looking out for you. Here are some basic guidelines:

For stage I tumors, the usual schedule is to visit your doctor every 6 months for 2 years. If the exams are normal, then you can visit your doctor less often. For stage II tumors, you should visit your doctor every 3-6 months for 3 years, then every 6 months for 2 years. If the exams are all normal, then you can visit your doctor less often. Your doctor should request a chest x-ray or blood test and physically examine the body for lumps or enlarged lymph nodes to check for possible metastasis. For stage III tumors, you should visit your doctor every 3 months for 3 years and then every 4-6 months for 2 years. Chest x-rays and blood tests should be scheduled regularly for these patients.

I also want to add that even after 5 years, as kgray states, you should remain diligent in your follow-up. We have talked to different doctors and it is not unheard of for a melanoma to metastasize 10 years or more after the original lesion is removed. One doctor had a patient who had his metastasize 18 years after his origianl lesion was removed. All it takes is a few cells to break free into the blood stream. Those cells can be kept in check for years by a strong immune system, and may only begin to form colonies years later. If the metastasis is caught while it is still in a lymph node, it can often be removed, and the patient may have a fighting chance with follow up chemotherapy.

Best of luck to everyone.

 
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