Home Forums Melanoma Diagnosis: Stage IV 29 and frustrated

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  • #21713
    dragonchild
    Participant

    Back in September I went to the ER because of a large lump on my side under my arm, I was referred to an oncologist and underwent surgery to remove a lymph node the size of a baseball at the end of October. When the results came back two weeks later I was told that I had melanoma, less than a week later I underwent a second surgery to remove 19 more lymph nodes in that region for the purpose of staging. When I recieved the results from that I was told that they had found two more lymph nodes infected and that I was already Stage IV. This was all in Alabama, I am now in California due to the possibility of a better treatment and possibly increase my survivability chances.

    The reason I am on here is to hopefully find someone that knows of some financial resources in Southern California that could cover the costs of my treatments. I cannot even start treatment until I can find a way to pay for them when I have no insurance or income, my family is struggling to get by with their own lives financially and cannot help pay for the treatments either.

    I feel like every time i take a step forward to dealing with this, I am kicked in the head and forced to take ten steps backwards and I am losing faith quickly. I am trying to get government aid but that takes so long that it may as well not exist and the requirements are staggering.

    I am at my wits end with all of this, so any help to move forward would be apreciated.

    #63228
    Celeste Morris
    Participant

    California is one of the states that has their own insurance exchange and I have heard it is working very well. You need to sign up on that as soon as possible. If you have no income I’m sure you will qualify for financial assistance with a basic insurance plan or you will be told you qualify for Medicaid/Medicare and it will direct you to that. Either way you can have a plan in place by January and at that point you can not be denied due to a pre-existing condition. Additionally, if you don’t understand the forms or questions on the computer screen, you have the ability to participate in a live chat or call someone who will help you through it on the phone.

    Perhaps others on this board can offer other resources. Yours, Celeste

    #63229
    Catherine Poole
    Keymaster

    Yes, do go to the health.gov website and get help. I would call the 800 number as the live chat I found to be useless. They have navigators both on the phone and nearby you who will help. Also, clinical trials are a good bet for much of the treatment is covered by the pharma or institution. I would also look to UCLA for a trial or treatment. I hope this helps you.

    #63230
    Linny
    Participant

    Are you sure that you’re Stage IV? From what you described it sounds like you’re Stage III. For those who are Stage IV, the melanoma has usually traveled to other parts of your body, such as the lungs or brain. You made no mention of other organ involvement, so I’m a little confused.The reason I’m asking is that the treatment protocols between the two are quite different.

    #63231
    kylez
    Participant

    I hope you will be able to have a pathway to care set up soon.

    The web site for California’s health exchange (Covered California) is:

    https://www.coveredca.com” class=”bbcode_url”>https://www.coveredca.com

    They say they have help for enrolling over the phone, as well as help finding in-person counselors possibly close to you.

    #63232
    dragonchild
    Participant

    Thank you all for the info, I have tried the websites but they are asking for me to fax or scan my info into their systems and i don’t have either one so I am having to fight to do everything in person and getting the run around.

    And Linny, I am going by what my doctor said. I have done the PET, CT and MRI (REALLY hated that one) scans, and so far as I was told the only place they found the cancer was in the lymph nodes under my left arm, beyond that I am just going by what I have been told by the oncology surgeon. Also they have listed it as a “primary of unknown origin” which may be a factor in the staging.

    According to what I was told, the original node was examined by almost every pathologist in the university’s department and for some reason they had a lot of trouble getting the chemical stains to stick to and absorb into the biopsy sample, it took over two weeks for them to say that it was melanoma. So that along with the size of the three nodes may have been the reason for them to say stage IV, I honestly don’t know.

    #63233
    Catherine Poole
    Keymaster

    You can go to a navigator to do all of the scanning, etc and get help with the application. Just call the 800 number and they will tell you where to find one. I’m confused by your diagnosis as well. Where are you going now for treatment?

    #63234
    Linny
    Participant

    Your diagnosis is very similar to mine: I had an unknown primary and one lymph node under my left arm that tested positive for melanoma. I am Stage III. You can have more than one node test positive and still be Stage III.

    If all your scans were clear and the melanoma was confined to your lymph nodes, I really don’t understand your staging.

    Melanoma with an unknown primary is a unique entity and not all that common. Are you being seen at a melanoma clinic at a major hospital? If not, then you may want to consider seeking a second opinion at a clinic that specializes in it.

    I’m pushing this because the treatment options between the two stages are different. Since you’re concerned about costs and insurance you need to get some clarification on the staging because the treatment costs also vary greatly between the two.

    #63235
    dragonchild
    Participant

    As I had mentioned there were a total of three infected lymph nodes as well as some necrotic tissue both inside the original node and in the surrounding area. This was a University of Alabama Cancer Research Center that I was diagnosed through, but I still plan to get a second opinion as soon as I am financialy able. I had an interview with Social Security and was told that due to my conditions my case would most likely be fast-tracked and approved, so I just have to wait for that call and then I should be able to do that.

    I am still fairly new at dealing with all of this due to the fact that, so far as I know, nobody in my family has ever had melanoma, even though we have had just about every other type of cancer show up from my grandparents back through the previous two generations. Nobody in my or my parents generations have had any form of cancer thus far.

    #63236
    Linny
    Participant

    No one in my family had melanoma, either, though my father had lymphoma. Filling out those questionnaires at the surgeon’s office at Johns Hopkins was an experience because just about all of them pertained to melanoma moles so I had a number of N/A’s as answers.

    I don’t know about you, but when I was diagnosed, I felt completely blind-sighted. If I’d had a suspicious mole I would have had it taken care of. To my recollection I never had one.

    My bad lymph node was about the size of a chicken egg. But I still had to have all the nodes in the axilla removed. And that’s standard procedure for those of us with unknown primaries. The reason why we had grossly swollen lymph nodes was because our body recognized the melanoma and was fighting it tooth and nail. At least that’s my understanding of it. When you think about it, that’s not too shabby.

    You really need to get that second opinion. If you’re in California there appears to be no shortage of hospitals that have melanoma clinics: http://melanomainternational.org/web-resources/cancer-centers/#5” class=”bbcode_url”>http://melanomainternational.org/web-resources/cancer-centers/#5.

    Don’t know if you’ve researched melanoma of unknown primary, but here’s an interesting study on it, which helped me tremendously: http://jco.ascopubs.org/content/26/4/535.full” class=”bbcode_url”>http://jco.ascopubs.org/content/26/4/535.full

    #63237
    dragonchild
    Participant

    Linny, I can’t tell you how much that MUP link helped my state of mind. Just the idea of having a 55% chance at living brings tears to my eyes, and those numbers are almost ten years old at that.

    I hadn’t realized that there was much difference between a known and an unknown primary, so I hadn’t researched it, though I will be looking now. The oncology surgeon I had gave me the impression that lacking a primary site was more concerning than normal.

    Over the last two and a half weeks since i was told it was stage 4 I have felt myself sliding into a hole that even taking anti-depressants hasn’t been able to help, but with one link you have allowed me to start seeing a possible light at the end of this very dark tunnel, for that alone I can’t thank you enough.

    This has given me one more reason to get a second opinion as soon as it is financially feasible.

    #63238
    Linny
    Participant

    I’m so glad you found that study helpful. It helped me as well. :D

    I’m three years into this and exactly 3 years ago this time of year I was on antidepressants and in the same hole that you just described. The antidepressants definitely helped, along with support from friends.

    There are other studies and reports on MUP on line. Some statistics say we fare worse, while others say we fare the same as those who are MKP. But the most recent studies seem to reflect that we fare relatively well.

    Did your surgeon discuss lymphedema with you? Because you no longer have lymph nodes in your left armpit, that arm will be at risk for swelling. You no longer can have injections or blood drawn from that arm, nor can you have blood pressure taken on that arm. Any punctures or wounds can cause an infection. Not everyone gets it, but you should familiarize yourself with the symptoms so you can get started with therapy early should they manifest. I’m letting you know this now so you can file it away in the back of your mind. Getting that second opinion for your melanoma would be your top priority.

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