Home Forums Melanoma: Stage III What went wrong?

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  • #21233
    aquamak
    Participant

    I am a new poster to this forum and wish it was under better circumstances. I have been an active reader since September 2012 when I was first diagnosed with melanoma. I had what appeared to be a skin tag in the middle of my left neck (midway between by ear and chin and midway between by jaw and collarbone). I had a skin tag removed there in the past. The problem with this one is it appeared fast and I had been watching it for a couple of months. It was firmer and more fixed and tan in color. I actually nicked it with the razor one day and it bled. After that it seemed to grow faster and started to get a darker ring at its base. I went on reputable websites and looked at all of the pictures and charts and the closest thing it resembled was a benign mole or a squamous cell skin cancer. With this in mind went to my local dermatologist (supposed “skin cancer” experts) and saw a Physician’s Assistant. He seemed very professional and knowledgeable and told me that it appeared to be a benign angioma. Never did he mention any type of skin cancer and shaved it off and told me it would be sent for pathology but he didn’t expect any issues. He also conducted a full-body skin exam and told me I had no other issue.

    One week later, the phone call came. It was now one of the dermatologists in the practice and he told me in a very non-compassionate tone that it was a “melanoma-type” skin cancer and I would require additional treatment. The pathology report showed a 1.5 mm Breslow with no ulceration, no regression, mitotic rate of 5, no lymphocytes and no lymphovascular invasion. The report also stated that since the lesion was shaved, the true depth could not be determined. I asked him what is next and he said I needed to see a surgeon and oncologist and he wasn’t touching it. I said thank you and knew I needed to go to to a specialty center. After researching, I made an appointment with Memorial Sloan Kettering Cancer Center (MSKCC) here in NJ to see a melanoma specialist. My pathology slides were reviewed by a pathologist there who agreed with the diagnosis but added “superficial spreading” and raised the mitotic rate to 8. After examining me, he said the melanoma was worrisome and hopefully it had not spread to my lymph nodes and needed to come out. I was scheduled to see the head & neck surgical oncologist there the following week and I was scheduled for WLE and Sentinel Node Biopsy for October 18. He also ordered a full-body PET scan and head CT. The head CT was clear and the PET showed 2 lymph nodes that lit up on my right neck. After FNA biopsy, they proved to be benign, reactive nodes.

    I had my surgery and SNB which showed 1 sentinel node which came back clean but showed a nodal meloncytic nevi which was of no concern to the doctors. The pathology of the melanoma excision was good and the ultimate depth of the melanoma was shown to be 1.6 mm with >1 mitosis however perineural invasion was observed. I was told I had a 85% 10-year survival and to live my life and both the dermatologist & surgeon would see me again in 3 months for follow-up.

    At the end of December I felt a lump directly above my scar under my ear. It was soft but had a very small hard spot in it. Interestingly, shortly before that, I had an infected ingrown hair in my scar with a nasty abscess that popped and resolved on its own. I saw the surgeon in January 2013 for follow-up and told him about the lump. He examined it and told me he wasn’t worried about it as it was most likely related to the scar infection. However, he sent me right in for a an ultrasound which was read immediately and showed a slightly enlarged lymph node with no visible fatty hilum (a sign of not being benign) but it had hilar blood flow. The radiologist suggested clinical correlation so the surgeon did an FNA biopsy which reported no malignant cells so it was considered benign reactive. The surgeon called me on a Friday night at 9:30 PM on my cell phone to tell me the report and said he would see me again in 3 months. I also had full body follow-up check by the MSKCC dermatologist in February with no problems found. He even pushed me to 6 month check-ups.

    I basically forgot about the lump and it seemed to be disappearing. While on a cruise over Easter vacation, my son asked “what is that lump on your neck?” I then became obsessed with it and kept touching but I knew I was seeing the surgeon for follow-up in April. This is where the horror story starts. Upon examining me last Wednesday, the surgeon asked if this was the area we biopsied in January and I said yes. He said we definitely have something going on and he was now not satisfied with the results from the past ultrasound and biopsy. He wanted to biopsy it again but also ordered a full-body PET scan first which I had this past Monday. I saw the surgical oncologist yesterday with my wife when I found out that the PET scan showed 1 and possibly 2 lymph nodes adjacent to my left parotid gland suspicious for malignancy. He told me that I have to have a neck dissection with all of my lymph nodes and the parotid gland removed immediately. I am scheduled for the 4 hour surgery in NY next Friday and subsequent 3-4 hospital stay with up to 2 week recovery at home. Depending on the amount of spread they find, I may need radiation and my case will be referred to the medical oncology department for possible chemo treatment. After all of this news, I was overwhelmed and had a massive panic attack to the point where I had to be revived by the nurses.

    So where did it all go wrong? I did everything that the doctors told me and had every test possible and got a recurrence in 3 months. Sorry for the pity party but I went from a Stage 1B with 85% 10-year survival to at least a stage 3B with 48% 10-year survival in less than 6 months. Anyone else with the same experience? Any pointers, suggestions would greatly be appreciated. I’m a 47 year old man with a loving wife and a 16 year old boy and 12 year old girl. Live was good up to this point and now I feel helpless.

    #60344
    krissy424
    Participant

    Good morning from California Aquamac. I just finished reading your melanoma history. I’m at a loss for words. Indeed you did everything right. We know many people with Stage 4 who are NED ( no evidence of disease), There are some amazing new treatments thru clinical trials. You are at the right place. I’m sure our experts can help guide you.

    Never stop believing!

    Kris

    #60345
    Catherine Poole
    Keymaster

    I guess I can try to make you feel better by saying medicine isn’t perfect and melanoma does misbehave! Perhaps the doctors should have been more attentive to the first lump and have done more than the FNA. But hindsight doesn’t help at this juncture. As Kris mentioned we have many patients here doing quite well with much more advanced disease. I question the use of chemo, we don’t have chemo for melanoma. You should be asking about BRAF and immunotherapy. Are you still going to Sloan?

    #60346
    Linny
    Participant

    Wow, you certainly have been on a roller coaster ride. As was pointed out, there are many of us at Stage III who are doing well. Ditto for those at Stage IV now that there are better treatment options available.

    You need to stop reading statistics. Seriously. Stop it. :D Those statistics you’re reading were gathered years ago when interferon was the only treatment option. There are more options available now for melanoma than there have been in the past. And, the medical community has made huge strides over the past few years in developing more treatment options, even for those of us at Stage III. The survivor list is growing.

    Melanoma isn’t treated with chemo, so I’m puzzled as to why someone knowledgeable about it would even suggest it. If the melanoma in your lymph nodes shows something called extra-capsular spread, then radiation is an option. Other than that and interferon, there aren’t any other FDA-approved treatments available for those at Stage III. But there are clinical trials. And, I’m surprised that no one from Sloane has mentioned them to you.

    You can always get a second opinion, if you feel you haven’t been treated appropriately. If you’re from NJ, you can check out the Melanoma and Pigmented Lesion Group at the University of Pennsylvania in Phillie.

    #60347
    aquamak
    Participant

    Thank you all for your replies. Catherine: yes I am still being seen at Sloan. I see Dr. Boyle (Head & Neck Surgical Oncologist) and Dr. Stephan Wang (Dermatological Surgeon) at Sloan’s Basking Ridge NJ facility. I am having a neck dissection & parotidectomy on Friday at Sloan in NYC on Friday. Dr. Boyle is doing the surgery. I am very nervous and it is really taking a toll on my wife and children.

    I used the wrong term in my original posting. Dr. Boyle said I might need radiation and that my case would be referred to the medical oncology group for melanoma at Sloan In NYC for possible treatment. I know chemo is not the proper term and immunotherapy is used. I’m not sure if I will qualify for anything.

    I guess my question is what’s next? Is now more of “when” I will get another recurrence as opposed to “if” I will get another recurrence?

    #60348
    Linny
    Participant

    Sorry to hear how much of a toll this is taking on you and your family. It certainly is nerve-wracking. For myself, I was such a basket case that I actually refused to get behind the wheel of a car for fear that I might cause an accident on account of my head being so distracted about my diagnosis. I could not work and I could barely sleep. A prescription of Celexa (antidepressant) helped a great deal. If you’re not already on something to help your nerves, don’t be afraid or ashamed to ask your doctor for something to help you cope with this.

    Doctors won’t be able to give you a “when” or even an “if” until after the surgery. I didn’t learn my results until 2 weeks after my axial lymphadenectomy.

    After your surgery you will need to make an appointment with a melanoma oncologist, who will go over treatment options with you. I’ve read many good things about both Dr. Chapman and Dr. Wolchok at Sloan. But you don’t need to limit yourself to just Sloane (though one-stop shopping is nice). Your oncologist is the one whom you’ll be seeing on a routine basis for a long time, so it’s important that he or she is someone you get along with well.

    I got opinions from the University of PA and from Johns Hopkins and both places gave me the same options back in 2011 for Stage III:

  • Frequent observation (aka do nothing, observation only)

  • Interferon
  • Clinical trial
  • Interferon didn’t offer a huge benefit over frequent observation (I was pretty surprised to hear that. Search this forum for posts on interferon. You’ll find some interesting stuff.). I wasn’t totally comfortable with frequent observation, so I chose the clinical trial. U of Penn wasn’t offering the trial I was interested in but Hopkins did, so that’s where I ended up going.

    At this time, please try to not read too much on the web about melanoma. There’s lots of scary stuff out there, lots of outdated stuff, lots of misinformation, etc. I’ve found this board to be a great safe haven. The Stage III forum goes to sleep every once in a while and then wakes up again. The reason why it goes to sleep is that people are living their lives. You will too. I know it doesn’t feel that way because you’re still in shock and very scared. But you will get through this.

#60349
aquamak
Participant

Thanks Linny for your encouraging words. I had my left neck dissection and parotidectomy last Friday (5/10) and was subsequently discharged on Monday after the drain was removed from my neck as it was no longer draining. Felt good to go home! I must say being in a major cancer hospital like MSK is a humbling experience. Remember, there is always someone else with something worse than you. Even with this being said, all of the patients I met were very upbeat and in good spirits. I have had no real complications except some swelling and partial paralysis which is getting better each day. I spoke to my surgeon’s nurse today and she read me the pathology report-68 nodes removed, MM found in 1 node no extra-capsular spread, all other nodes, parotid gland and tissue clear. I was told this is good news. I see the doctor for follow-up on Wednesday and we will discuss radiation and possible clinical trial. I should be allowed to return to work this Thursday. I’m ready to fight this!

#60350
Linny
Participant

Hi aquamak! I’ve been thinking about you and wondering how your surgery went. You definitely got some good news! Only 1 positive node out of 68 was positive, no extracapsular extensions., and no complications!! YAY!

I totally agree with you on how humbling an experience it is to go to a place like Sloan and see how positive and upbeat people are in spite of their illness. I’ve experienced the same at Johns Hopkins.

Keep us posted on what trial the doctor thinks you may qualify for.

#60351
Catherine Poole
Keymaster

This is excellent news. You should rest up and relax now. There are few trials for stage three and you’ve done the best treatment you can do for your melanoma as of now. We can help you look at trials if you’d like in the near future. But for now enjoy your family and “normal” life.

#60352
aquamak
Participant

UPDATE-went from better to worse. I was just starting to calm down with the initial pathology and then I got the full picture when I went to the surgeon for follow-up this past Wednesday. Still 1 node positive with no extra-capsular extension however there were also 2 small nodules containing melanoma next to the lymph node that were suspicious for perineural (nerve) invasion. Further testing failed to show perineural invasion so that was ruled out but the nodules are still an issue. Interestingly, the lymph node and 2 nodules showed “spindle cell” melanoma. Spindle cells were not seen in the original melanoma excised in October 2012. The 2 nodules are being considered in-transit metastasis so technically I am now a Stage 3C. My surgeon said they typically do not re-stage for a recurrence. Since none of the nodes or nodules were over 2cm, radiation is not being recommended.

Now for the new curve ball. According to the pathologist’s report, there were abnormal lymphocytes seen in the skin, soft tissue and adipose (fat) tissue overlying the cancerous lymph nodes and nodules. The pathologist sent them for review to a hemo-pathologist who tested them further and stated that chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) cannot be ruled out and recommended correlation with my blood work and close observation. The same type of cells were also seen in another non-melanoma infected lymph node. The surgeon wasn’t overly concerned as the report also mentioned initially that this could represent “procedural artifact” (i.e. scar tissue or reactive tissue).

In the meantime, an appointment was set-up with Dr. De Angelo at the MSKCC melanoma/sarcoma medical oncology group to see if there was any treatment she recommended. I met with her on Friday and was very knowledgeable. She felt that the CLL/SLL may be a “red herring” but never the less, she has me seeing a hematologist/oncologist and I am awaiting an appointment. CLL/SLL can be an indolent disease but obviously it is not good to have along with melanoma. With regards to the melanoma, she told me that Interferon is typically prescribed but MSK does not use it and we all know the reasons. She offered me 2 options: watch & wait or clinical trials. I am eligible for 2 clinical trials. One is a Phase 2 trial of Adjuvant Dabrafenib in Patients with Surgically Resected Stage 3C Melanoma and the other is a Phase 1 trial vaccine of Immune Response to autologous Langerhans-type dendritic cells electroporated with mRNA encoding. Now the dilemma. Not sure how to decide. My melanoma is being tested for the BRAF mutation for the Dabrafenib trial (hopefully it is +) however, if I do have CLL/SLL, I cannot participate in either trial. So I’m not sure how much more I can take as it is just one bad thing after another. I’ve been knocked down many time but I am really struggling to get back up from this. Thank the Lord for anti-depressants and Xanax. Any help or input on the clinical trails would be appreciated.

#60353
Linny
Participant

OK, take a deep breath. Your mind has to be running around in circles. Here’s what I see:

  • You’re being seen at one of the TOP oncology hospitals in the country, if not the world. Their folks know what they’re looking at. You can’t ask to be in better hands.

  • The spindle cells were not seen back in October so it sounds like they are a recent occurrence and were found early. With any cancer early is good.
  • The CLL/SLL is not a definite. No one said you definitely have it. But doctors do need to rule that out.
  • If you’re being offered “watch & wait” as an option, that’s great! It’s a viable option and many do just fine with it.
  • I’ve read good things about Dabrafenib. Google it. ;)
  • I don’t know anything about the vaccine trial you mentioned. But Catherine may.
  • With Phase I trials you’re literally breaking new ground. Phase II trials come around after successful Phase I trials: http://www.cancer.gov/cancertopics/factsheet/Information/clinical-trials” class=”bbcode_url”>http://www.cancer.gov/cancertopics/factsheet/Information/clinical-trials
  • ShirleyZ, who’s on this board, is Stage IIIc. She was a hot mess when she was initially diagnosed and had a very poor prognosis. She’s been disease free for 7 years now and just recently had scans done that were clean and clear. Here she is describing her situation to someone:

    Quote:


    I am 7 yrs out from a stage IIIC melanoma diagnosis on my big toe. I had a very deep primary. Breslow depth of almost 12mm. I had a plapable matted cluster in my groin. Ulcerated and vascular invasion.

    I had surgery to amputate my big toe and a deep groin LND. I was also offered interferon. I chose to watch and wait. I did have a recur in my shin at my 3 yr mark, also surgically removed. I have done well since then with the exception of lymphedema.

    My choice was to keep my immune system as strong as possible and since I was able to have everything surgically removed that is what I opted for. It is a viable option. Not everyone feels comfortable taking that route but for me it was the right choice.

    You have to be comfortable with whatever you decide.

    When I was first diagnosed, interferon was really pushed. Since then there has been a lot of controversy and some of the top centers no longer recommend it. Its not an easy decision. You really need to do your research.

    Good Luck to you! Stay in touch.

    Shirley Z

    #60354
    momo4mlk
    Participant

    Hello Aquamak –

    My husband was recently diagnosed with Melanoma as well and in my searching for information I came across your story. Unfortunately we are new to Melanoma and I have no medical advice for you. What I wanted to tell you is that I have been praying for you and your family and will continue to. For some reason your story has really stuck with me and I feel led to pray for you. I hope that you have a relationship with Jesus. For us, without him and the peace and hope he brings, this would a much more difficult time. I will continue to pray for you and your family. If you have any questions about having a relationship with Jesus or any other spiritual questions I will do my very best to answer them and encourage you. Good luck with your treatment.

    God Bless.

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