Kim K

I was close at 2.06 mm, no ulceration and negative SNB.  Progressed to stage IV a few years later with no recurrance to lymph nodes.  A lower back x-ray for other reasons revealed a lung met, and PET showed a second met in my pectoralis muscle.  After lung surgery and IL-2, I have been NED for 9 years.

The ends have suture knots buried and is why they are probably popping up more than in the middle.  My body hates vicryl and spit all my WLE sutures out.  I also had an adhesive / steri-strip allergic reaction on top of everything.  Just keep an eye on it, it will take time to go down.

IMHO – No.  I would go for ultrasound monitoring of the nodal basin.  Lymphedema is very real and you have no idea on how your personal outcome will be.  Standard of care doesn't necessarily mean what is cutting edge and just not published yet or accepted as mainstream.  CLND is a major surgery moreso if it involves the groin.  Once done you can't take it back.

Again IMHO, if it were me now knowing what I know, I would wait and monitor since if anything that is a micromet.  My stage IIA SNB was negative including using PCR technology.  I still progressed to stage IV at least 6 years later.  The good news is that it never recurred in my nodes and I still have them all minus the SNB.  Instead it went straight to my lung and pectoralis muscle.  After surgery and IL-2 in 2010, I am and still remain NED.  

There is no right or wrong and in the end don't look back no matter what you decide.  This is a gray area weighing the very real risk of long term lifelong issues and complications, with the chance it may or may not affect your final outcome.  CLND would not have prevented me from going to stage IV.  With a minimal tumor burden in your nodes and as thin as your mel was (relatively speaking), for me, I would chose close monitoring instead.

7 years NED from stage IV.  VATS lung surgery & 23 bags of IL-2.

Yes, that limbo feeling is real and common.  For me, I busted my A$$ to become a veterinarian and love what I do.  I am also the single mom of 2 girls who were 2 and 4 at the time, and was living at home to take care of my mom as well.

I became stage IV in 2009.  I underwent IL-2 if anything to fail it so I could qualify for a clinical trial.  It shocked the heck out of me that I became NED and continue to be NED.

I was torn between creating memories for my two young girls or going back to work.  Back in 2010 even with the Braf drugs availible, I still had a 50-50 chance of living to X-mas of that same year.  I felt fine, underwent VATS for my lung tumor and the one remaining tumor melted away.  It was at least 5 years when I went from IIA to IV without going through stage III.  I loved my job and it was a large part of who I am and what makes me feel like I make a difference in this world, I also didn't want to throw away my education.  Heck what if I made it into the 3% club?  I felt guilty as hell either way.

I decided to go back to work after surgery and took off 3 weeks for my IL-2.  I am glad I did, but I am very glad I did go back to work.  I lived!  I went from saving to give my girls as much as I could before I passed, to now needed to go back to worrying about how was I going to pay for braces, college, AND my retirement on my salary living in the most expensive state.  In the end I went with what my passion was and wasn't going to let my cancer dictate my decision.

Go back to work, but instead of 70-80 hours, stop and smell the roses along the way.  Perhaps do a "normal" 40-60 hours instead and focus on having a good balance in your life whatever that may be.  The day you die, not many people would say "Damn, I still have more work to do", but rather, "I wish I had more time to enjoy travel, relationships with family & friends, and to live deliberately".

What about surgery to remove the spleen and lessen tumor burden or chance for mutated metastasis to grow?  Radio surgery, cryosurgery, or injections to the large liver met or possible resection of ameniable location?  There are so many trials coming out now you would have to keep something inside to measure any response.  Bubble posted several great articles from the most recent ASCO meetings.

He must have magical powers to see her expiration date, or a direct line to G-d, or better yet, be clairvoiant.  If it is only the spine met, then shrink the danged thing as agressively as possible and get on immunotherapy.  If she isn't ready to give up, then don't.  Most people know when it is time to let go and make peace with it, but if I were in her shoes I would be hopping mad and yell at him to not give up on me because I'm not, you're either with me or your not.  PERIOD.  There are more radiation docs and others who have seen the amazing results from new medicines just within the past 3 years.  Obviously this guy isn't one of them.

BTW – I am 7 years NED after IL-2 and surgery, ONLY.  It can be done.

Aw CRAP!  WTF?  Did cancer have a meeting in your body and figure out if mel can't get you it will try another tactic?

I love your take on messing back with the big "C" and it was also similar to how I dealt with it.  I guess now all that research training for mel comes in handy for the unfortunate double tap you got stuck with.

Wishing you the best on kicking A$$ against cancer.  It needs to move on and pick on someone else – like my waste of humanity neighbors……  Damn did I just type that?  Whatever.

You are NOT stage IV but rather your tumor was at least a Clark level 4 which is NOT the same thing!  Docs get this wrong all the time and we freak out when terms like stage and level are used interchangeably.  They are not the same thing.

You need a sentinal node biopsy BEFORE they do the wide excision.  Due to your pregnancy they might just use the dye and not the combination of the radioactive tracer and dye.  It will be a judgement call since after 3 months all of your baby's organs have formed and the amount of radiation may not make a difference versus increasing the accuracy of the SNB.  Then again, your docs might not feel it is worth the risk to add the radiactive tracer.

Once that comes back you will either stay your current stage or move up depending on spread.  Hopefully all is negative and you will only need frequent monitoring by your derm & oncologist, as well as enjoy being a mom.

Sorry, but the waiting always sucks and you need to finish your staging first.  Don't get the cart in front of the horse, and we are here to help you navigate everything once you get your final diagnosis.

Sorry you had to join, but this is one of the best sites over.  I can now officially say I am an "old timer" here.

1.  Get copies of all your path reports, labs, x-rays etc.  This makes it easier to ask questions here so we can better help you.  Post your initial path report here so we can help you with initial staging etc.  We are not doctors though some of us here are.  We have all educated ourselves fairly well and can help you to ask the right questions.

2.  The waiting always sucks.  Life does come back to normal, even with advanced stages.  It just may be a new normal.  Basically the anxiety gets better but still comes and goes.  This will be a roller coaster ride you never intended on riding, we can make it easier though.

3. Your first step is to complete staging.  Do you need a sentinel node biopsy or not?  Early stages ex. 2A at best get a chest x-ray and some blood work.  Earlier stages don't usually get PET/CT scans etc.

4.  Your nodule may be totally unrelated as they are common as well.  Don't panic until you know what you are dealing with.  If is too much, then stay offline.  If research gives you a sense of control over something you really don't, then learn as much as you can.

5.  Learn the lingo.  Much has happened in a short period of time for melanoma.  Also why you don't need to look at older survival curves.  You are not a statistic and they are depressing.  The newer drugs have changed that for many.  B-raf inhibitors, genetic markers, immune system modulators, clinical trials etc. will become part of your vocabulary.

6. Much of what I said applies to adavanced melanoma, not early.  Until you are staged, you just don't know.

7.  I am alive and should be dead, at least from melanoma, but I am still here kicking A$$ and taking names.  I have been NED for almost 7 years from stage IV melanoma, and 15 years from my initial diagnosis at the age of 34.

8. You are not alone, others may not understand you ex. assume you have breast cancer and "chemo" will cure you.  Afterall, its only skin cancer right?  Those are good times to come here to vent.

Kim

You can look up articles on the role of surgery after treatement with curative intent.  Yes, there is hope for a prolonged remission when using surgery to clean up the last bits.  Usually you are not in a trial because trials want something to follow.  There is a survival benefit.

You can look up articles on the role of surgery after treatement with curative intent.  Yes, there is hope for a prolonged remission when using surgery to clean up the last bits.  Usually you are not in a trial because trials want something to follow.  There is a survival benefit.

Word of caution, correlation does not equal causation.  Melanoma comes in different flavors.  Some may, some may not progress with pregnancy.  It is too confounding either way.  In the end, the individual will need to determine if their disase burden and time since becoming NED is worth the risk or not.  Not becoming a mom based on a what if in a vacuum when it is all you ever wanted?  I just don't know.  There isn't enough good research or data out their either way.  In the end, it either comes back or it doesn't.  That is a very individual decision based on that person's status.  I have dealt with both issues so am sensitive when people use correlate or cause melanoma when there still are no clear answers.

Remember it is the depth that matters, not the width.  If you are already having an SNB then the depth was at least 0.75 mm.  Post your path report here as there are other important clues as to how aggressive your tumor may be ex. ulceration wich will upstage you.  The depth also is highly correlated with spread / risk.  Regression is good.

You have the choice if the other nodes are removed at the same time, but that is only typically done if there is gross involvement of the nodes.  For microscopic spread in a node, often that is the only node that is involved.

Current thinking is revisiting the need for automatic nodal removal due to potentially permanent and severe side effects without showing much of a survival advantage.  The nodal basin can also be followed with regular ultrasound if needed.

Just some questions to ask.  Knowing now what I didn't know then, I would have to be hard pressed to remove all my nodes, especially in the groin area.  Just make your decision based on good information, then never ever look back and question yourself.  It doesn't do any good and nothing is a gaurantee or set in stone with melanoma.  You will often have more questions than answers which is normal.

Just get your staging completed first so you know fully what you are dealing with.

In my case, my SNB was negative and has always remained that way.  I was one of the rarer cases with direct spread via the blood stream (lung and pectoralis muscle).  I still have all my nodes and am grateful to have them and no nerve damage or lymphedema.

KK

Try Dr. McElroy in Kona.  She is a dermatologist that is agressive with her melanoma patients.  None of this shave Bx baloney.  She did one of the better derm exams right up there with when I saw a derm in Atlanta in thier melanoma clinic.

Dr. Shane Morita on Oahu is very knowlegeable about mel.  I met him at my tumor board meeting where he chastised me for not following up with my stage 2A after moving back home to Hilo.  I had been NED over 3 years by then.

Anyay, I found him to be on top of the cutting edge treatments and has a strong research and interest background in mel., especially in different ethinc groups.

If anything I think the DOE needs educating here as my school bans the use of hats and sunglasses.  WTF?  Oh and sunscreen can only be applied at home.  My daughter painfully learned today that reapplication is mandatory.  It makes me sick to see her burnt neck and arms.  At least her face didn't get it too bad.  I also reminded her to reapply often.  I asked her this AM if she learned anything from this experience as I don't want her to burn again – ever!

Yeah, the travel to Oahu is a PITA.  Dr. Morita is from Hilo and occasionally has clinics here.

Mahalo,

Kim