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Is there time for a second opinion? Misdiagnosis? In Arizona.

Forums Cutaneous Melanoma Community Is there time for a second opinion? Misdiagnosis? In Arizona.

  • Post
    Evan.elaine
    Participant
      Hi all, I’m new around here. My mom was diagnosed with stage IV melanoma 5/30/19. It has been a whirlwind of a couple weeks.

      A brief backstory. Late February 2019, mom noticed a small red dot on the left upper side of her back. Over two weeks, the dot grew to a mostly round, painless, raised, purpleish-pink growth that began to bleed. She presented to ER on 3/1/19 for evaluation. She was diagnosed with a skin lesion, and referred to follow up with a general surgeon. Mom had her consultation 3/4/19, and he recommended excision and biopsy. Mom had biopsy done 3/7/19 with resulting pathology of “4.3cm x 2.0cm x 1.2cm tan pink oriented skin ellipse with underlying fatty tissue”, with diagnosis of nodular basal cell carcinoma with clear margins. Mom was then referred to oncologist Dr Maqbool Halepota at Palo Verde Cancer Specialists. Although margins were clear, he gave her the option to see radiation oncologist Dr Abhilash Nambiar at the same clinic for for consultation if she desired. She proceeded with a consultation with Dr Nambiar in mid March. He did not think radiation was necessary, but that he would consult with his colleagues before proceeding. A few weeks later, mom got the call that radiation therapy was indeed the recommended course of treatment in her case. She was advised radiation Monday-Friday for 4 weeks. Her first treatment with Dr Naigar was 5/22/19, and went without incident. The previous week on 5/16/19, she had woken up with chills, swollen axillary lymph nodes, fatigue, loss of appetite, and lower back pain. She continued her radiation appointments as directed. By 5/24/19, her symptoms, besides the back pain, fatigue, and lack of appetite, had subsided. The pain became almost debilitating and prompted her to leave work early 5/24/19 to be seen at Urgent Care. She was referred to ER for consult. She could not drive due to pain, or walk unassisted, so I drove her to ER. Bloodwork revealed elevated liver enzymes and abdominal CT reveled innumerable lesions of her liver, spleen, and spine. Liver and spleen were also enlarged. Mom was admitted to the hospital and consulted by oncologist Dr Nazish Ahmad from Palo Verde, as Dr Halepota was out of town. She ordered more labs, revealing LDH elevated to 815, MRI of brain and spine confirming lesions and ruling out spinal cord compression/CNS involvement. She then ordered liver biopsy and PET scan. Mom was dishcarged from hospital to have tests done outpatient, as it was memorial day weekend and interventional radiology was not available until tuesday. Due to an error in scheduling on the hospital’s end, mom’s biopsy that was scheduled for 5/28/19 had been cancelled, and couldn’t be rescheduled until 6/1, in addition to having to wait 1-2 weeks for pathology due to outpatient status. Mom’s pain was uncontrolled, she had not eaten in just about a week with no desire to, little desire for drinking, increasing fatigue and some confusion led me to decide we could not wait that long for results. She was declining quickly. I called Dr Ahmad for consult 5/28/19, and she direct admitted mom back to Honor Health. In addition to the current treatment plan, Dr Ahmad advised mom have a port placed for anticipated systemic treatment. On 5/29/19, liver biopsy was performed by Dr Gaurav Patel by needle and LDH levels had risen to 1102 that day as well. 5/30/19, port was successfully placed by Dr Mohan Ramalingam. Later that afternoon, Dr Amhad relayed that her pathology revealed stage IV metastatic melanoma. She is recommending Opdivo/Yervoy immunotherapy to start as soon as insurance approves. She was hoping as soon as 5/31, or Monday 6/3, but after calling her office, we learned that although Dr Ahmad has expedited all processes, insurance approval may take up to 21 days, although we don’t anticipate that long. Palo Verde has advised I can call daily and they will expedite as soon as approval allows. They do have an immunotherapy education appointment scheduled 6/6/19. Mom has not eaten and has no desire to eat. She will drink just sips of water at a time. She is in severe back and now also andominal pain at times, with current management. She felt full pain relied only when IV morphine was administed during hospitalization. She has some swelling in her abdomen, and is severely fatigued. She wakes to use the restroom, which she needs assistance to get to due to pain and weakness. She has become forgetful with some confusion.

      My first concern is do we need a second opinion? We both are confident in Dr Ahmad’s aggressive perspective with my mom’s case and diagnosis, and agree with her treatment plan. I saw on the locator that her clinic is not a melanoma specialist clinic. What I am worried about is if there is time for a second opinion. Mom is 66, a full time pharmacist and active with her social and family life. She has declined at a rapid rate, and I think time is of the utmost importance. Anyone with experience from Palo Verde, or any recommendations in the Phoenix or surrounding areas? Any insight on timing, am I overreacting by thinking our days are numbered?

      Second concern is possible misdiagnosis of her BCC, and that it was actually her primary melanoma site. Palo Verde has requested her original specimen to run pathology on their end. Has anyone ever experienced a misdiagnosis? I am thinking this is something I need to pursue, but don’t know exactly how to proceed.

      If you’ve stuck around this long, thanks for reading my long winded introduction and questions.

      Signed,
      An optomistic, but realistically very frightened daughter

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    • Replies
        Edwin
        Participant
          Your mother has stage 4 melanoma. It is not important whether the bleeding growth on her back was the primary melanoma. Do not worry about that. Opdivo/Yervoy immunotherapy may be the best treatment. I would not delay it to seek a second opinion. You may be able to get a second opinion, while waiting to begin immunotherapy. My cancer clinic Sanford Roger Maris Cancer Center does not specialize in treating melanoma. My oncologist treats other people with melanoma, but she does not specialize in treating melanoma. I have stage 4 melanoma and have been pleased with the care I have received. I am much healthier today than I was 3 years ago.
            Mark_DC
            Participant
              dear Elaine,

              the diagnosis and treatment plan make sense to me – I am not an expert but you should be able to see a pathology report which will tell you this
              I like the new docotrs treatment plan and think you should follow it

              However, I am surprised that they did not detect melanoma back in February, also they seemed slow to order scans
              So i would seek a second opinion / check that you can see a malnoma specialist
              I think you also spneed to have a dermatologist, who should have checked this initially and can check for recurrence
              I think the plan makes sense and i like dr ahmads attitude but also i think a melanoma specialist would be a good idea
              Good luck Mark

            doragsda
            Participant
              It’s quite possible, even likely, that your mother’s original lesion from March really was a basal cell carcinoma and that her melanoma primary lesion remains either unfound or had already regressed and will never be found. As Edwin says above, the important thing right now is to focus on a treatment plan to address the melanoma that is present and get it under control quickly.
                Evan.elaine
                Participant
                  Dorasga, the primary lesion can regress? I was unaware of that. I am aware they could be separate incidents, but the new oncologist took it upon herself to investigate the original biopsy and diagnosis. Thank you for your input!
                  doragsda
                  Participant
                    Sorry, I missed your question from the other day.

                    Yes, the primary can regress and disappear. The immune system can destroy it, but sometimes some cells are either left or have moved to other areas and can create metastases, sometimes years later. My father-in-law had an unknown primary; his first diagnosis of melanoma was metastatic lesions in several internal organs. It’s even possible that a lesion may have been removed without a biopsy or been treated by cryotherapy or electrodessication and not checked for melanoma before its destruction. There are a number of people on the forum who had unknown primaries.

                  jbronicki
                  Participant
                    So sorry to read about your mother and all that you have been through. You are in a very intensive period of information being thrown at you. Many hugs. I agree, at this point most important thing is to treat the melanoma that has been confirmed, that is the true aggressor in this scenario and has proven aggressive by the amount of spread. One thing that is concerning is no mention of genetic testing as this may also open up treatment options.Also, I didn’t see anything about genetic testing from the biopsy? Are they planning to test the sample so if there is a mutation (BRAF specifically), she could also benefit from targeted therapy which my understanding can possibly at least reduce tumor burden. If your mom does have the BRAF mutation there would be possibly targeted therapy options (BRAF/MEK Ed and Celeste can give you more scientific advice if there is any disadvantage to starting immunotherapy now instead of BRAF/MEK and vice versa depending if she has BRAF mutation there is some evidence about which order to do BRAF/MEK and Immunotherapies based on high/low tumor burden but I didn’t see that mentioned in your description above) Here is information from Dr. Weber who is very big brain and name in melanoma treatment. She obviously needs treatment as soon as possible and i understand the need for action.
                    https://www.targetedonc.com/news/braf-mek-versus-immunotherapy-which-to-use-first-in-melanoma

                    I think they genetic testing may be important information to have and offer her options depending on the results. And I would at least ask the doctors about this as well. Your doctor is offering combination immunotherapy Nivo and Ipi together which is a first line treatment for metastatic melanoma. However, I would also be working at the same time to reach out for second opinion. Nothing says you can’t be working on scheduling second opinion. I looked at the website for Palo Verde Cancer Center and it concerns me that they only talk about treating non-melanoma skin cancers. It doesn’t mean they are bad, but I would want to be assured they understand this disease in depth as you can see by just what the link above suggests that even the big names are discovering new ways of treating this every day. I would want her to see a melanoma oncologist that specializes specifically in melanoma treatment and also understands the newest treatments and possible clinical trials available based on her criteria. Your mom seems to have been declining quickly so I think this needs to be explored now even if you all decide to start Opdivo/Yervoy now which is absolutely a first line treatment. Make sure to keep all information, records, pathology and scans as you will need all this information. You need to advocate for your mom as much as you can (it’s not easy but you sound pretty darn competent and now that you know what you are dealing with melanoma, that can point you in the right direction. I know you are taking in a lot right now, but just take it step by step. Get treatment start and simultaneously begin by reaching out to melanoma specialist. You’ve already looked at the locator and would need to decide if you are in position to travel, etc. if your mom can still travel. She is young and hopefully can fight this, but I know she is feeling so bad right now, I hope they can at least alleviate some discomfort quickly. Many hugs

                      Evan.elaine
                      Participant
                        Hi Jackie, thanks for your reply. We are awaiting BRAF pathology, but were advised to start the Opdivo/Yervoy right away, rather than wait for the results. We should know by the end of this week. We just got insurance approval for the immunotherapy and are scheduled to start this Thursday. Mom is not doing well. Still not eating and has started to get some edema in her feet. Pain is somewhat managed, but still breaks through at a level of 10/10 periodically, usually worse in the morning. I’m sure we will learn about this at our education appointment on Wednesday, but do you know how long it typically takes to see any improvement in symptoms or disease burden with immunotherapy? I truly appreciate your response!
                        jbronicki
                        Participant
                          I’m no expert in this and I know response time can be delayed in immunotherapy so I feel most appropriate giving you a link to Celeste/Bubbles link to her Ipi/Nivo response time. Celeste has the most comprehensive amount of evidence-based literature and compilation of information surrounding this issue: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

                          If you type in the search box as well for our forum, I would go with “Bubbles Ipi Nivo response” to find various discussions around this issue with the understanding that our forum is biased towards worst case, so that is why the evidence-based clinical data is so important since it comes from large number of patients and is hopefully well designed research.

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