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  • #22050
    Happy_girl
    Participant

    My tissue sample was sent off to a company that is working on identifying stage 1 and 2 patients that are at a high risk for recurrance. I just heard back that my sample came back at a higher risk. Are these companies accurate? Now I am terrified that my stage 1b will be progressing very soon. This is confusing to me also because no one else in my family even has melanoma. If you have any advice or input, I would love to hear it. My heart is just breaking with this news.

    Thanks so much.

    #64750
    cohanja
    Participant

    “My tissue sample was sent off to a company that is working on identifying stage 1 and 2 patients that are at a high risk for recurrence.”

    What is this, I’m not familiar with this? Has anyone else done this? How much does it cost, does insurance cover it? What are they testing for? Would our hospital/Dr do this? Do they change your treatment with these results? Thanks

    #64751
    farang100
    Participant

    Happy_girl wrote:

    My tissue sample was sent off to a company that is working on identifying stage 1 and 2 patients that are at a high risk for recurrance. I just heard back that my sample came back at a higher risk. Are these companies accurate? Now I am terrified that my stage 1b will be progressing very soon. This is confusing to me also because no one else in my family even has melanoma. If you have any advice or input, I would love to hear it. My heart is just breaking with this news.

    Thanks so much.

    I don’t know anything about this test but everyone who has melanoma is at risk of recurrence so I would take it in a positive light and start taking preventative measures to stack the odds in your favour.

    Food, diet , supplements , exercise. If you do your research there are many things you can do.

    Good luck and don’t worry be positive and take positive action.

    #64752
    cohanja
    Participant

    “but everyone who has melanoma is at risk of recurrence”

    The difficult question always seems to have been how do you identify the 5-10% of thin early lesions that will go on to develop metastasis? There never seems to have been a good answer, maybe this is a way to do that, whatever this test is?

    #64753
    Anonymous
    Guest

    A link(s) would be handy.

    #64754
    Happy_girl
    Participant
    #64755
    cohanja
    Participant

    I wonder what this “increased surveillance and treatment options” would be

    #64756
    Happy_girl
    Participant

    I know my dr is having me meet with an oncologist- and ordered a pet scan for a baseline. I’m scared and am afraid that means I’m the one that it is going to come back.

    #64757
    cohanja
    Participant

    I’m a little confused by the “Patients with Class 1 tumors were found to have a 5-year metastasis free survival rate of 97%, while those in Class 2 have a 5-year metastasis free survival of 31%.” because if there was a segment of patients with a 69% 5-year metastasis rate, how would the Stage I survival statistics be as high as they are?

    #64758
    cohanja
    Participant

    Does your Dr have to order this test?

    #64759
    pmw148
    Participant

    Here is the reference they used in citing the statistics:

    http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-survival-rates

    I am assuming if gene testing shows higher chance of spread, increased surveillance would include imaging such as pet scans or ct scans to catch any spread earlier.

    #64760
    Happy_girl
    Participant

    Mine did- but I’m not sure if it has to be that way…. Maybe for insurance to cover it though?

    #64761
    farang100
    Participant

    cohanja wrote:

    I wonder what this “increased surveillance and treatment options” would be

    Unfortunately probably not much.

    Nonetheless there are a lot of ‘unproven’ alternative options.

    I am going down that route. I don’t know if what I am doing will work but I certainly feel great and I am trying to stack the odds in my favour.

    Most people might think I am extreme but my situation is extremely serious with a very high likelihood of distant spread.

    I am doing and have done the following: complete detox , colonics, parasite sapping , liver flush, anti cancer budwig diet, hyperthermia (melanoma is very heat sensitive) , vitamin C infusions, mistletoe injections, taking green tea extract, turmeric, phyto greens, Coenzyme Q10.milk thistle. selenium.

    As mentioned before I am monitoring via a circulating tumour cell test. Test again in three months to see if what I am doing is working or not.

    Finally if it does happen to progress at least there are a few new drugs on the block that offer some promise also vaccines and things are changing very fast so a couple of years down the track the prognosis for latter stage melanoma patients may be much better.

    Cancer feeds on worry and fear try to stay positive. Do things that make you feel good. Relax laugh, smell the roses. Life is too short in any case whatever happens.

    #64762
    Happy_girl
    Participant

    Catherine-

    Do you know anything about this or have an opinion?

    #64763
    Catherine Poole
    Keymaster

    Less than 4% of folks have the genetic aberration that can cause melanoma. The rest is all caused by UV exposure. I haven’t seen the scientific evidence proving any of the alternative therapies that are mentioned above are useful, and in fact some may be harmful.

    Cancer doesn’t feed on any emotion, but constant stress can lower the immune system. Mindful meditation, massage, and other means of relaxation can turn off the over active mind. Vigilance to any change in the body is good, but hypervigilance can result in too much testing that can bring about more stress. I also haven’t seen scientific validation of any test that can show tumor cells circulating in the blood stream.

    I do agree you need to try to live in the moment and enjoy each day.

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