33 yr old daughter recently diagnosed with melanoma

ginny · New User Joined: 26 Oct 2008 Posts: 1

Hello and thanks to all of you helping each other and helping new people like me.

My 33 year old daughter was diagnosed with melanoma on her shin October 7th. I have been doing a lot of reading (and worrying and praying) on this new health issue. I am so grateful to have found this forum.

Her pathology report reads:
Type: superficial spreading
Growth Phase: radial and vertical
Clark’s Level IV
Breslow’s Depth 1.0 mm on MART-1 immunostained sections
Ulceration: Not observed
Dermal Mitotic Count: less than 1mm2.
Tumor Infiltrating Lymphocytes: sparse
Regression: not observed
Precurser lesion: atypical compound melanocytic nevus
Vascular invasion: not observed
Margins: narrowly excised, atypical melanocytes in epidermis are less than 2mm from the peripheral margin
Fat on the deep margin: present

So far she has seen the surgeon who discussed doing a Sentinal Lymph Node Biopsy and going back to remove another 2cm margin. He talked a lot about the SLNB and said some people choose to do it and others not. I believe he said it won’t make a difference in the outcome or the treatment plan. (I have yet to understand that.) She also saw the plastic surgeon who feels she will need a skin graft to close the wound. Today she had a PET scan and she has had labs which showed normal LDH (cancer marker I think.) She is to see the Oncologist 2 weeks after the surgery.

I had her pathology reviewed at UCSF (University of California San Francisco) because I was told their Melanoma Center is one of the best in the country. I was told their report of her slides was very similiar to the first one. I haven’t seen the report or talked to her doc about it. The “Tumor Review Board” at UCSF took a look at whatever records she had as well as the pathology and gave us a date of Nov 13th to come for a consult. While I’d love to have her go to UCSF for that consult at least, waiting until then to discuss her case and then another couple of weeks for the SNLB and re-excision doesn’t seem realistic.

My daughter thinks she wants to do the SLNB but I am a bit apprehensive after reading about it. I’d love to know if any of you have done it, any of you had serious side effects, should we do it etc…..

Thank you so much for your time. I’m sorry to have been so wordy.

Hugs to all of you from a worried mom.

Ginny

Red13

Hi Ginny,

I had a 1.0 mm clarks level 4 melanoma just above my knee. On July 10, I had the WLE and SLNB surgery. 1 node was removed from my groin area, which came back negative. That was a huge mental relief for me. I am however still dealing with a complication from the SLNB - it's a pocket of accumulated fluid where the lymph node was removed called a seroma. I've had it drained 4 times, but it keeps coming back. At its largest, it was almost like a golf ball under the skin. It seems to finally be slowly reabsorbing on its own now, now it's like a walnut. It's not serious or painful, just an annoyance really. During the healing process, I also experienced some swelling of my foot and leg, random bruising, and weird sometimes painful sensations down my entire leg from nerves that were severed during the operation. That's all gone now, and it was never terribly painful or anything, but it's stuff I wish I had been warned about.

I'm not a doctor so I can't say whether your daughter should do the SLNB or not. I can only say that in my own circumstances, I feel it was the right choice for me. My derm, surgeon, and oncologist all recommended the SLNB for my case. I got a second opinion from a top melanoma specialist, who also agreed. So I felt good about the decision going into the surgery. Would I do it again? Yes, but probably not if it was thinner, if that makes sense.

I hope that helps a little. I know it's a confusing and scary time. The best thing for me was to ask a lot of questions. Eventually I learned to write them all down, because I would keep forgetting them when I finally got in the room with the doctor.

Please keep us posted!

HaoleBoy · Senior User Joined: 19 Aug 2008 Posts: 132

Ginny, I'm sorry to hear about your daughter's diagnosis... I was diagnosed 1 August 2008 and had surgery -- wide local excision and a sentinel lymph node biopsy -- on 21 August for a 2.4MM Breslow superficial spreading melanoma on the bottom of my 2nd toe (left foot) which was amputated......

At 1MM thick and Clark's level IV, I would strongly recommend that your daughter undergo the SNB , and I suspect UCSF will tell you the same thing (they do have a very good reputation)....... Melanoma tumor thickness and the status of the lymph nodes are the two most important prognosticators for overall survival rates and, of course, accurate staging which is key to defining an effective treatment and follow-up plan..... Additionally, node status is also important in term of clinical trials should your daughter ever have to go down that route (which I pray she does not)....

Sentinel node biopsy has very low rates of morbidity (not to be confused with mortality), and complications are rare and for the most part tolerable...I had some mild lymphdema -- swelling at the biopsy site and some minor, temporary numbness in the thigh (my sentinel node was in my groin) which doesn't impede me at all....

From my readings and in chatting with other mel warriors, SNB is the standard of care for lesions over 1MM.... and many cancer centers also point the patient in this direction for lesions thicker than .75MM, and especially for those that are Clarks Level IV -- and as you undoubtedly know by now, Clarks Levels are not that important EXCEPT for thin lesions 1MM or thinner, with Level IV being an indicator for SNB....

Wishing your daughter the best....

Prayers and blessings, Haole Boy (Bob from Hawaii)

RacerX · Regular Joined: 01 May 2008 Posts: 21

Mine was 1.22mm thick.. on my cheek. (I'm 36)

I did not have a SLNB for two reasons.

1. The melanoma was removed first... which I was told by two docs that with one on the face, there are a couple node areas the fluids could travel to, and once the melanoma is removed and the skin is stitched, those paths can change. So just because the fluids drain to location A, it doesn't mean that's where it drained prior to having the area cut and patched.

(I knew nothing about melanoma.... except that I wanted it removed from my body asap. No one explained that the SLNB is typically done prior to removal of the melanoma so the pathways are not altered... Of course, after the fact I did all my research on what to do from that point on)

2. I have other health issues which cause a fair amount of pain all the time... and I was not about to have something done that has even a remote chance of causing any other issues to deal with. (lymphdema) It's just not worth it IMO.

Obviously #2 is specific to me...

[quote]status of the lymph nodes are the two most important prognosticators for overall survival rates and, of course, accurate staging which is key to defining an effective treatment and follow-up plan[/quote]

That is also what I have been told, and what I have read. It helps determine your odds, but not necessarily increasing your odds.

If they were to find cancer in the nodes, and remove them, that's not a guarantee that the melanoma wouldn't return, or that there isn't other cancer cells someplace else in the body. That being the case, I didn't feel it was worth the possible side effects. (While I agree the odds are low, the odds of any of the other things I deal with are also low, and yet I got 'em.)

Which leads to treatments... again.. very specific to my situation, but even if the nodes were positive for melanoma, I had no plans to jump into any of the treatments they would suggest I have.

So for me, I chose not to have the SLNB done, and I'm 110% fine with my choice.

My suggestion would be to read... read.. and read some more. Talk to the docs.. several if you need to. Understand the risks and the benefits for everything.

-R

HaoleBoy · Senior User Joined: 19 Aug 2008 Posts: 132

RacerX, I agree with virtually everything in your post.... I also think it is critical NOT to look back over one's shoulder and engage in alot of "what if" thinking once a person has made a treatment decision -- perhaps easier said than done, but ultimately, it is an exercise in futility which only increases the stress level, and there is enough of that in just dealing with melanoma...

Everyone's melanoma case is different and this cancer doesn't seem to follow any orderly rules..... some people with thick lesions have it excised and never deal with it again while others with thin lesions under 1MM have a recurrence and end up dying from their disease (though this is rare statistically); others yet, like Sam Donaldson the former ABC News anchor, have metastatic melanoma and are long term survivors -- in Donaldson's case, 13 years and counting now after he had a groin lymph node dissection.... while others with a negative sentinel node biopsy will have a metastastis to their lymph nodes and lose the fight.....

I posted a separate post about sentinel lymph node biopsy from this year's 2008 conference which seems to contradict what Doctor Morton originally found about SNB and overall survival rates....... but I agree with you that nothing is yet definitive in terms of causal vice correlative factors .....i.e., do people with a negative sentinel node survive longer because they had the procedure per se, or is because they are more accurately diagnosed as "true" node negative vice having occult (microscopic) micro-metatasis to the lymph nodes ? The docs themselves are still arguing over this one ...

But for Ginny's daughter, all other things being equal in term of pre-existing health conditions (i.e. no other concerns which one would normally expect from a 33 year old), I think most melanoma specialists would recommend that she undergo the sentinel lymph node procedure....... particularly since her anatomic location (thigh) will almost certainly not involve the multiple lymph node draining challenges which head, neck and facial melanomas can pose in terms of accurately finding the sentinel node [i]or sentinel nodes (plural) as the case may be...[/i]

Regards, HaoleBoy (Bob)

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