Saturday, February 2, 2013

Got Melanoma?? Get yourself a melanoma specialist!!!!

In August of 2003, I took myself to a local (dear and good) dermatologist after watching a nevus become darker on my back.  He called me himself, sooner than he had said he would, to tell me that the pathology report from his biopsy had returned as melanoma.  Neither of us were surprised, but I am grateful to this day that he chose to call me himself, rather than waste my time with another appointment or farm out that uncomfortable chore to a nurse in his office.  Now it was time to find a surgeon for resection with appropriate margins and node biopsy.  Despite a good rep and supposed expertise in oncology surgery (albeit for breast cancer) I managed to pick a complete ass, who was not nice, knowledgeable, or a good surgeon.  To our concern over the diagnosis he replied, "Oh, you're much more likely to die in a car wreck." To our desire for sentinel node biopsy, "Oh, you don't need that for this lesion."  We pushed and made it happen.  And...yes, I did need it, since one of the three sentinel nodes that lit up in my right axillae proved to be positive for melanoma.  Having had all of him I could take, I switched to a brilliant and kind, local, general surgeon who provided the complete lymphadenectomy indicated because of the positive node.  Additionally, he ended up having to do clean up as well, since once in surgery, he realized that the original Dr. Smartass-Know-Nothing, had pulled the positive node through the entire field, but managed to put things to rights.

Next stop, local oncologist....again with a great reputation in breast cancer care.  He was an incredibly sweet man who very sadly informed me that HE felt devastated whenever he had to take care of patients with renal cell carcinoma or melanoma. (Years later, Dr. Weber, also said:  "Melanoma is the kind of tumor that gives cancer a bad name.") The local onc literally begged me to do a year of interferon.  When we tried to discuss the sad facts related to interferon's lack of tangible success in prolonging life or preventing further disease, he replied with tears in his eyes, "But you're so young, I just can't stand it for you to do nothing."  Luckily, he retired soon after, leaving me free to see a younger, female oncologist in his practice and avoid his well meaning dismay and horror at my disease, which was, shall we say...uncomfortable...for me as the patient!!!

Fast forward: 2007. Despite visits every 3 months to my original dermatologist, between visits, a strange, dark, tiny, raised spot developed almost over night on the inner aspect of my left forearm.  I knew it was melanoma.  Nothing else grew that fast and looked like that.  My dedicated dermatologist removed it and again, called me himself with the bad news.  Path positive for melanoma.  Sentinal node testing was done. And when my good surgeon provided the resection of my left arm, he also removed 12 nodes from my left axillae, none of which were positive.  Follow-up with my "new" oncologist was not terribly helpful, though in truth, she didn't have much available to offer.  She shared our opinion of interferon but offered to provide it if I wanted. We discussed IL2 some, but it seemed pretty extreme for my condition.  (Ipi and anti-PD1 were not anywhere on the horizon.) We decided to go with "cherry picking".  Removing things as they cropped up.

Now:  2009.  A routine chest X-ray, as part of the occasional radiological survey along with some PET scans done over those years showed "something" in the right upper lobe of my lung.  Given my history as an asthmatic, it was determined to be a mucus plug.  We were told, "Melanoma NEVER looks like that."  Brent did share one article that demonstrated that sometimes, it kinda did. But, we bowed to authority, and watched, and waited.

In April of 2010, having been referred to a pulmonologist who had also been watching and waiting on the lesion that never got worse, but never got better, finally did a bronchoscopy.  Sure enough, the gunk within proved to be endobronchial melanoma.  So...melanoma CAN look like that! I do not harbor any resentment toward either of the doctors. I could have demanded a bronch sooner. It just proves that melanoma rears its ugly head in some very sneaky ways and if you don't study it every won't necessarily be prepared.  My local oncologist remains part of my care to this day and has been helpful in arranging needed scans. However, when Brent speaks with her, though she is providing some ipi infusions to the occasional patient, it is clear that she is not really aware of what is going on with anti-PD1, new BRAF dosing patterns, MEK, or any of the latest and greatest in melanoma world.

Before we can move on with fixing my entire body scan was in order...and MRI of the brain showed a 3-4 mm lesion in the right frontal cortex.  With that ringy-dingy, we were now out shopping for a neuro surgeon and neuro radiologist...not to mention a thoracic surgeon for what we hoped would be only partial lung removal.  Trust me, bathing suit shopping is much more fun!!

Docs found, blog started.  On April 27th I had stereotactic radiation to the brain, followed by right upper lobectomy on April 30.  It was a little tricky, since depending where along the bronchus the surgeon could find clear margins would determine whether I lost a lobe or the entire right lung.  Luckily, and due to his skill, the bronchus remained long enough to reattach and I lost only the upper lobe.  He did tell me afterwards, he was really thankful I was so skinny!!!  Hells to the yeah!

October 2010.  My throat kept feeling really tight and weird.  So....I take a look. A very strange black lump is visible peaking back and forth from behind the right tonsilar pillar.  Great!  Do I have to find all my melanoma myself???  Find ENT.  Done...tonsil and surrounding tissue removed. Yep again.  Positive for melanoma.  And it hadn't even shown up on my recent PET scan!!!

December 2010.  Despite an odd 4mm lesion of questionable origin, now on MRI to my high right parietal area, I am accepted into the anti-PD1 and vaccine trial in Tampa, at Moffitt, with Dr. Weber that I remain in today.  The lesion miraculously disappeared on subsequent MRI's.

However, in follow-up with my neuro-radiologist before starting the trial, he informed me that he would never repeat stereotactic radiation, that I should have whole brain radiation.  Of course, Brent and I knew better. You can repeat stereotactic radiation!!!  Nobody wants to be in a position to need that....but you can do it if you need it!!!  There was no way that I was going to have WBR given the side effects and the fact that it has been proven to be unsuccessful in eradicating melanoma.  We were amazed at his lack of understanding of this disease process....but privately decided we were done with him anyway and let it go.

Last week.  Brent is eating lunch at the hospital and Mr. Oncology Radiologist-of-already-proven-lack-of-knowledge-fame sits down beside him.  After general chit chat, B decides to let him know that, "By the way, my wife is doing well.  She's had no other lesions and continues in the anti-PD1 trial in Tampa.  Are you familiar with anti-PD1?" 
 "No, not really," is the reply.
  "Are you working with patients on ipi/Yervoy?"  
 "I've seen a few."  
 "Have you seen the studies coming out about the synergistic effect between Yervoy and radiation that's proving to work really well for some melanoma patients?"
 "No.  Haven't heard of that," in a rather bored fashion.
Don't forget!  This is something this guy does for a living!!!!!!!!!!!  Brent takes care of babies and children.  Yet, he has managed to read oncology reports in basic medical journals.  How is it possible that a man who does nothing but oncology radiology day in and day out knows nothing?????  Well....I could give you a lot of reasons for that, but....

Bottom line.  Educate yourself. No one will advocate for you like YOU!!!  But:  GET YOURSELF A MELANOMA SPECIALIST!!!!  I had connections.  I knew the jargon.  I knew the drill.  I did not have any fear of doctors or of seeking another one.  And yet....some of my initial care was definitely sub-par when it comes to the latest knowledge and research related to melanoma.  Getting to a melanoma specialist and an institution that treats lots of patients with melanoma is not always easy depending on where you live and/or your financial position.  However, you MUST try!  There are some agencies that will help with cost if you qualify and plenty of people will try to help you find a resource near you.

Got Melanoma.  Get yourself a melanoma specialist.  Your life depends on it. - c


  1. I'm glad you have the Webinator! But your first melanoma specialist was Brent!

  2. My first and bestest! And you're no slouch yourself! Love you so!

  3. I think all of the peptide patrol has a pretty good handle on things!

  4. That is for sure and for certain. You and Fredo could give lessons to many! I would never have made it this far without my Peptide Patrol! Looove you, Roo!

  5. I couldn't agree more actually. Bottom line: If I hadn't gone to see a melanoma specialist 3 years ago, I would be DEAD. You are so right about being your best advocated, it really can make a difference between LIFE and DEATH.

    BTW, I read your blog from time and time and find your story to be amazing and inspirational. I would love to share your story, if you are willing on my foundation's website, Sol Survivors Melanoma Foundation!

    If you want, email me and we can talk. I would love to share stories with you as well. It's always great to meet another Stage IV survivor! :)

  6. Oh my goodness! You are doing such an amazing job providing inspiration, encouragement and education through your blogs and foundation!! With beautiful busy boys all at the same time! I can only hope to keep up. Awesome!