newly diagnosed - next steps?

Posted By
6/26/2014 2:05pm
View other posts by
Activity
Replies: 5

Hello everyone, 

 

My fiancee was diagnosed yesterday with melanoma. We are still in shock, and trying to make some sense out of it. We;ve been to a dermatologist and have an appointment set up with a melanoma specialist the week after next. I expect that further excision (to increase the margins) and a sentinel lymph node biopsy are in the offing, and then whatever the biopsy indicates will shape what happens after that. 

 

Here is what we know so far, based on the pathology report for what looked like "just a mole" and the other tests that have been done:

Breslow thickness: 1.15 mm

Mitotic rate: 1

Location: behind ear

Depth of penetration of skin: to the point where the epidermis meets the subdermis but not subcutaneous (as far as I can follow pathology-speak)

Primary melanoma completely excised with clear margins, although very narrow  (1 mm hoizontally and 3 mm vertically)

No swelling or symptoms in lymph nodes, chest x-ray, abdominal ultrasound and bloodwork all clear of any abnormalities. 

 

From what I can figure, this looks like Stage 1B to me. However, the dermatologist we spoke to was quite ominous, talking about "spending quality time with your kids", "be grateful for each day you have", and "don't plan anything for the next year". So we are panicking on one hand, and slightly reassured by the high success rate for early cancers on the other. 

For those of you who have been down this road, what would your advice be at this point, in terms of what we should expect or what we should be doing? I realize there are dangers in getting information off the internet, but I also would appreciate any wisdom from this group.

Patina - (6/26/2014 - 2:24pm)

Sorry to hear that he joined the club. Good news is that you caught it and it seems to be a risk, but lower than most.

Here are a few things we've learned along the way:

1) Get a second opinion from another melanoma specialist.  Know what his/her opinion is and explore options offered by the first specialist. Get a 3rd opinion if needed.

2) Find out if any family extended members have had melanoma and if he is BRAF positive.

3) If you ever have MRI's, CT's or PET scans always make sure that you get a second opinion and that that person views the scans not just the reports. - The 1st radiologist "overlooked" my Mom's brain cancer.  The 3rd melanoma specialist found 3 tumors...

4) Read up on melanoma and be his advocate or find someone who can do this. It can be hard, but understanding the options and what's going on in this field can be invaluable to him in the future.

5) Start a file and keep copies of everything: Reports, Surgical plans, Scans... This has come in handy for us. We carry everything with us and we've gotten answers on the spot instead of waiting until after a consult.

6) Be grateful that you caught it early and tell others what you've learned.  

 

Janner - (6/26/2014 - 2:51pm)

It sounds like you are on the right path.  Don't read into the doom and gloom of the derm.  You need the wide local excision (WLE) and the Sentinel Node Biopsy (SNB).  Until you have completed the staging, there is really nothing else to do at this point.  You're right, this is currently stage IB, but final staging will start with the results of the SNB.  Until you have that result, there is little to do.  Researching treatments is pointless because there won't be any if this stays stage IB.  I'd suggest NOT researching all this until there is a reason.  Waiting is hard enough and waiting and researching will just increase anxiety.  Just get the appointment with the specialist setup, have the surgeries and THEN evaluate.  That's the best time because you have the final staging and know exactly what you are dealing with.  Until then, do whatever you need to do to keep anxiety at bay.  We've all been there and done that and know it is a tough time -- you want to know what you're finally dealing with!

There is potentially some good news here. I  commend your fiancée for noticing this in a spot that would be easily missed my many and addressing it so quickly. Often the surgical solution early in the diagnosis is the best solution. Hopefully your further testing will confirm that this indeed is a very early stage melanoma which have extremely high survival rates. Once you get a better sense of just where you are at you will no doubt be scheduled for quarterly skin scans by your dermatologist.  I'd urge you both to be diligent and do your own scanning as well. I noticed 2 forehead hairline spots on my own while between scans and had the dermatologist confirm and then had them taken off. I predict a long life ahead but stay on top of this disease and get educated early on as to treatment options for later stages while thoroughly scanning.  Get out and buy the best sunscreen skin lotions you can and apply daily year round. Don't forget hands, arms, neck and feet.  Don't get to crazy on the internet. Most on this sight ( which I think is the best and most informative) are much later stages with different treatment options and longevity rates. Bear in mind much of this data is based on treatments that are now not current so statistics are rear looking. Additional exciting news is that there are huge advances in treatment underway so there are potential blockbuster life changing things ahead. Best of luck. Stay calm, stay the course. "It's opening day, it's all future, no past...all future, no past."

ocelot - (6/26/2014 - 4:26pm)

Many thanks for these kind replies. It's good to see that other people who have been down this road have a similar reading of the situation, because we're completely new to this. Also good advice about keeping a file with copies of all reports, for getting rapid information in consults with specialists. (He's an engineer, so being orderly and methodical is hardwired into the brain!). We will wait to see what the biopsy shows, hoping for the best. I welcome any more advice or experiences anyone wants to share, and I'm sure I will be back with more newbie questions. 

5dives - (6/26/2014 - 10:44pm)

Hello Ocelot,

I am also recently diagnosed, .96mm, mitotic rate 2, Clark level IV, and I understand what you mean about feeling in shock. This group has been very helpful in answering some questions I've had, very honest and level-headed and no unnecessary fear mongering. Read this site well, there are many answers here.

I had my biopsy on June 3, results on June 10, met my surgeon on June 24, and I'm having my WLE / SLNB on July 10. It's hard to imagine how many changes will have occurred in my life in just one month, but I feel this process can only teach me strength and resilience.

I'm hoping to stay at 1B, but I'm educating myself about stage 3 in case I have to make any decisions quickly. 

Try not to let the anxiety get to you. It will be hard, but it's no good worrying about negative scenarios that may never arrive.

Take care, and good luck with what's ahead.

Best,

Elaine