The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Very new – what actually HAPPENS?

Forums General Melanoma Community Very new – what actually HAPPENS?

  • Post
    Jlynn2303
    Participant
    Hi,
    I wrote in an earlier post about my 63-yo step mother who was dx with melanoma in the lung last October. It had been found three years previously, but untreated. I’ve been able to find that if it has metastasized to other organs it is stage 4, general prognosis (5 years, difficult to treat) and various other info on typical sites for mets, etc. What I can’t find is what actually might happen to her life.

    She’s never been the healthiest, was/is overweight, doesn’t exercise or do much, etc. Pretty much a couch potato with no desire to do anything different now that she has cancer, so nothing has changed (she had a lung lobe removed last fall and they found no other signs). And even with all this talk of stage 4, etc she just doesn’t seem any different now than she did 3 years ago when it was first discovered (though they didn’t tell her until last October so it was undiscovered, untreated and allowed to grow for 3 years) or even three years before that. We are doing the watch and wait thing – but no one seems to know what we are waiting FOR. For it to recur, but what does that look like, what does it mean?

    I just don’t understand how, if it is stage 4, how she could not seem sick? Or feel worse? I hate to be morbid, but I’d like to know what to look for, how to be prepared. If the prognosis is typically 5 years, what does that mean? At this point, there is no treatment happening. Every couple of months they go see a doc. She will go to have ovarian cysts removed on March 21st, but they say they are benign, the PET scan showed nothing although the CA125 was over 1000. And life has just sort of settled back to the way it was before. Everything I’ve read says this is serious, but only talks in very general terms about prognosis and treatment.

    Not that it is certain that this will kill her but statistically, the probability seems high(she seems rather resigned, as her gma, father and brother all died from cancer), but I don’t even know what to watch or plan for.

    What actually causes death? No one wants to talk about this, and I know, because of history and family dynamics that dealing with this will fall largely to me, so I’d like to have some idea of what actually, day to day, happens. I don’t have any say in the treatment itself, don’t go to doctor visits, etc. but can pass along useful questions to ask to my dad.

    Thanks,
    Jennifer

    Loading spinner
Viewing 3 reply threads
  • Replies
      TAC
      Participant

      Where are they located, what city, country, etc.? There are numerous melanoma centers around the US that they could go to for treatment, if she wants to be treated. There are many melanoma doctors who could offer her treatment….maybe a clinical trial, etc. The first step is to get more information about her…where is she being seen today? Is this an oncologist or regular GP? Is she willing to be treated? ETC.

      Left untreated, it is difficult to speculate about the path her disease may take. Left untreated and unchecked, the progression of the disease will continue until she has symptoms….perhaps with her breathing, etc. At Stage IV and in her condition, the prognosis is not good since she has not been seen by mealnoma doctors and has not received any treatment.

      Perhaps others here will chime in……Best wishes to you.

      Loading spinner
      TAC
      Participant

      Where are they located, what city, country, etc.? There are numerous melanoma centers around the US that they could go to for treatment, if she wants to be treated. There are many melanoma doctors who could offer her treatment….maybe a clinical trial, etc. The first step is to get more information about her…where is she being seen today? Is this an oncologist or regular GP? Is she willing to be treated? ETC.

      Left untreated, it is difficult to speculate about the path her disease may take. Left untreated and unchecked, the progression of the disease will continue until she has symptoms….perhaps with her breathing, etc. At Stage IV and in her condition, the prognosis is not good since she has not been seen by mealnoma doctors and has not received any treatment.

      Perhaps others here will chime in……Best wishes to you.

      Loading spinner
      Charlie S
      Participant

      I'm assuming (which is risky business) that your  SM had either a ct scan, pet scan or chest x-ray three years ago that showed a lung lesion, or lesions, that was suspected to be melanoma and that the medical advice was to monitor via periodic scans to use as a comparison with the initial scan.  There could possibly be two distinct reasons for this approach :

      1) Without an actual invasive biopsy, such as a ct guided needle biopsy or an open lung surgery, there would be no actual way,with scientific certainty, to positively diagnose melanoma.  Due to size and/or location a needle biopsy or full blown surgery was considered too aggressive at the time due to the risk versus benefit..

      2) She may or may not have any prior history of having a melanoma primary appear on her skin; in which case it would be considered occult, that is to say "unknown primary", which had metastasized to the lungs.  This unknown primary although unusual, does occur due to the fact that melanoma is one of a few cancers that do spontaneously regress…in other words they disappear for no known reason.

      It is confusing to me ,from what you describe,  that this melanoma was discovered three years ago, but it was not until October, that it was discovered.  Assuming again, could it be that it was a unconfirmed lesion three years ago and a recent scan showed a level of growth in size, location or density that changed the risk to benefit and surgical resection then became warranted and following surgery it was confirmed as metastatic melanoma?

      Not all patients are good surgical candidates at any given time due to weight, high blood pressure, pulmonary or respiratory function, diabetes or a host of other reasons, nor for many of these same reasons, may not be candidates for numerous drug approaches to treating melanoma.

      It made me chuckle when you mentioned she doesn't "look" sick.   I have been dancing with advanced  melanoma for almost 24 years now, fast approaching 15 of those years as a Stage IV patient with enough knife scars to make Zorro envious and with well over 200 chemical injections/infusions that should give me equity in some drug company, I don't LOOK sick.  If you saw me on the street you would never guess I am a Stage IV cancer patient.  Other than from the treatments, many melanoma patients look like a normal person…………..well normal might be a stretch, I once partied my ass off in a Blues Bar six hours after being discharged post IL-2 and blew out a vein on the dance floor (not recommended patient behavior I might add)……….but normal in the sense that other "non-sick" people look.

      As far as death, cancer, in general is uncontrolled cellular division that sets up shop in the body and feeds on the blood and oxygen required for the body to function, so the more cancer feeds and grows, it crowds organs for space, suck the nutrients out of the blood for its own purposes and becomes such a hog for space and nutrients that the body is deprived to the extent that survival is impossible.

       A tumor can grow large in the lungs, take all the blood supply and the lungs die, it can replace a liver or any other organ.  It can one by one replace a healthy lymph node so there is no more node and all tumor and just keeps spitting out seeds to grow elsewhere.  It can take over or shut down the brain, kidneys, bladder, bones, eyes, neurological functions like breathing, walking, memory, higher brain functions and on and on and on.  Sometimes death is sudden, sometimes it can be a lingering and agonizing process.  

      No easy answers that apply to everyone about diagnosis, treatment or disease progression for any two people with melanoma and that is why there is no cure.  Melanoma is well known to morph and do different things to different people.

      Charlie S

      Loading spinner
        Charlie S
        Participant

        Oh, and a VERY big Post Script………………………some people never advance at all, or do and keep right on living.

         Read the undead roll call in this post for evidence.

         

        Cheers,

        Charlie S

        http://www.melanoma.org/community/mpip/stage-ivroll-call-undead-please

        Loading spinner
        MRFUser2011
        Participant

        Charlie, thanks for being so straightforward in your response.  I am stage IV, recently had a lung nodule removed via VATS and if you looked at me, you would never guess I had cancer.  In fact, I look and act so healthy that 3 weeks post-op I saw three doctors, all listened to my lungs and none detected anything abnormal.  Yet a chest x-ray (ordered because I was in so much pain) detected fluid on the lung and over a liter was drained.  The pulmonary specialist that ordered the x-ray told my husband it was hard to believe I was walking around and my blood ox was nearly 100% when I had that going on.    I am feeling a lot better now, nearly 2 weeks since the fluid was removed.

        Anyway, your response is the first clear explanation I have ever read about what happens with end stage melanoma.  Nobody wants to "go there" and I hope never to have to, I want to die a very old lady in bed after a long day with my grandkids. But it is a relief to just have it spelled out.  

        Blessings, Shari

        Loading spinner
        Jlynn2303
        Participant

        Thank you all for responding. Sorry for the confusion. She had a GI incident 3 years ago that landed her in the er. They did a CT scan of her abdomen and picked up spots on the bottom of her lungs in the process and then forgot to tell her about it.  Three years later (last October), she goes back to the same ER for the same GI stuff and theydo another CT scan of the abdomen and pick up the spots on her lungs again, but this time the radiologist compares and notes that they are bigger, and this time, her doctor remembers to tell her. They opened her up and removed a lung lobe with the melanoma in it in November. A December PET scan was clear, although she has cysts on her ovaries and her CA-125 was quite high. She will have the cysts removed in a couple of weeks. They are just doing a wait and see, although the insurance company does not want to pay for the PET scans they want every three months. The oncologist recomended tx of leuk….something, but the insurance will not pay for it. They found no primary site. Cancer runs in her family (father, brother and gma all died from it). We are in SW Ohio.

         

        I just like understanding things!

         

        Thanks for the responses!

        Loading spinner
        JerryfromFauq
        Participant
        PET scans every 3 months seems to be a bit much. CT scans would be quite definitive and better show if there is any growing tumors. This approach will also lower the risk that the additional radiation would exacerbate her condition.
        Charlie is a good and knowledgeable man that tells it as it is and has helped many of us in this terrible journey.
        As Charlie says know one knows what will happen in the future. While we don’t know and pray that the ugly head is never again reared, I like to know as much as possible to be ready in the worst eventuality. To this end I would want to know what type of DNA mutation and oncoprotein might be involved in the previous tumors, especially with an unknown primary. I would want at least the c-kit and BRAF tests conducted. The basic over expression C-kit test can be conducted at any lab, while the advanced DNA c-kit tumor mutation test requires a specialized test and would follow a positive c-kit protein test. The initial c-kit test should be readily pad for by the insurance (it should only run around $128).
        Knowing the c-kit, NRAS, and c-kit status of tumors would reduce the time to implement future treatment if they were to be required.

        Loading spinner
        JerryfromFauq
        Participant
        PET scans every 3 months seems to be a bit much. CT scans would be quite definitive and better show if there is any growing tumors. This approach will also lower the risk that the additional radiation would exacerbate her condition.
        Charlie is a good and knowledgeable man that tells it as it is and has helped many of us in this terrible journey.
        As Charlie says know one knows what will happen in the future. While we don’t know and pray that the ugly head is never again reared, I like to know as much as possible to be ready in the worst eventuality. To this end I would want to know what type of DNA mutation and oncoprotein might be involved in the previous tumors, especially with an unknown primary. I would want at least the c-kit and BRAF tests conducted. The basic over expression C-kit test can be conducted at any lab, while the advanced DNA c-kit tumor mutation test requires a specialized test and would follow a positive c-kit protein test. The initial c-kit test should be readily pad for by the insurance (it should only run around $128).
        Knowing the c-kit, NRAS, and c-kit status of tumors would reduce the time to implement future treatment if they were to be required.

        Loading spinner
        Jlynn2303
        Participant

        Thank you all for responding. Sorry for the confusion. She had a GI incident 3 years ago that landed her in the er. They did a CT scan of her abdomen and picked up spots on the bottom of her lungs in the process and then forgot to tell her about it.  Three years later (last October), she goes back to the same ER for the same GI stuff and theydo another CT scan of the abdomen and pick up the spots on her lungs again, but this time the radiologist compares and notes that they are bigger, and this time, her doctor remembers to tell her. They opened her up and removed a lung lobe with the melanoma in it in November. A December PET scan was clear, although she has cysts on her ovaries and her CA-125 was quite high. She will have the cysts removed in a couple of weeks. They are just doing a wait and see, although the insurance company does not want to pay for the PET scans they want every three months. The oncologist recomended tx of leuk….something, but the insurance will not pay for it. They found no primary site. Cancer runs in her family (father, brother and gma all died from it). We are in SW Ohio.

         

        I just like understanding things!

         

        Thanks for the responses!

        Loading spinner
        MRFUser2011
        Participant

        Charlie, thanks for being so straightforward in your response.  I am stage IV, recently had a lung nodule removed via VATS and if you looked at me, you would never guess I had cancer.  In fact, I look and act so healthy that 3 weeks post-op I saw three doctors, all listened to my lungs and none detected anything abnormal.  Yet a chest x-ray (ordered because I was in so much pain) detected fluid on the lung and over a liter was drained.  The pulmonary specialist that ordered the x-ray told my husband it was hard to believe I was walking around and my blood ox was nearly 100% when I had that going on.    I am feeling a lot better now, nearly 2 weeks since the fluid was removed.

        Anyway, your response is the first clear explanation I have ever read about what happens with end stage melanoma.  Nobody wants to "go there" and I hope never to have to, I want to die a very old lady in bed after a long day with my grandkids. But it is a relief to just have it spelled out.  

        Blessings, Shari

        Loading spinner
        Charlie S
        Participant

        Oh, and a VERY big Post Script………………………some people never advance at all, or do and keep right on living.

         Read the undead roll call in this post for evidence.

         

        Cheers,

        Charlie S

        http://www.melanoma.org/community/mpip/stage-ivroll-call-undead-please

        Loading spinner
      Charlie S
      Participant

      I'm assuming (which is risky business) that your  SM had either a ct scan, pet scan or chest x-ray three years ago that showed a lung lesion, or lesions, that was suspected to be melanoma and that the medical advice was to monitor via periodic scans to use as a comparison with the initial scan.  There could possibly be two distinct reasons for this approach :

      1) Without an actual invasive biopsy, such as a ct guided needle biopsy or an open lung surgery, there would be no actual way,with scientific certainty, to positively diagnose melanoma.  Due to size and/or location a needle biopsy or full blown surgery was considered too aggressive at the time due to the risk versus benefit..

      2) She may or may not have any prior history of having a melanoma primary appear on her skin; in which case it would be considered occult, that is to say "unknown primary", which had metastasized to the lungs.  This unknown primary although unusual, does occur due to the fact that melanoma is one of a few cancers that do spontaneously regress…in other words they disappear for no known reason.

      It is confusing to me ,from what you describe,  that this melanoma was discovered three years ago, but it was not until October, that it was discovered.  Assuming again, could it be that it was a unconfirmed lesion three years ago and a recent scan showed a level of growth in size, location or density that changed the risk to benefit and surgical resection then became warranted and following surgery it was confirmed as metastatic melanoma?

      Not all patients are good surgical candidates at any given time due to weight, high blood pressure, pulmonary or respiratory function, diabetes or a host of other reasons, nor for many of these same reasons, may not be candidates for numerous drug approaches to treating melanoma.

      It made me chuckle when you mentioned she doesn't "look" sick.   I have been dancing with advanced  melanoma for almost 24 years now, fast approaching 15 of those years as a Stage IV patient with enough knife scars to make Zorro envious and with well over 200 chemical injections/infusions that should give me equity in some drug company, I don't LOOK sick.  If you saw me on the street you would never guess I am a Stage IV cancer patient.  Other than from the treatments, many melanoma patients look like a normal person…………..well normal might be a stretch, I once partied my ass off in a Blues Bar six hours after being discharged post IL-2 and blew out a vein on the dance floor (not recommended patient behavior I might add)……….but normal in the sense that other "non-sick" people look.

      As far as death, cancer, in general is uncontrolled cellular division that sets up shop in the body and feeds on the blood and oxygen required for the body to function, so the more cancer feeds and grows, it crowds organs for space, suck the nutrients out of the blood for its own purposes and becomes such a hog for space and nutrients that the body is deprived to the extent that survival is impossible.

       A tumor can grow large in the lungs, take all the blood supply and the lungs die, it can replace a liver or any other organ.  It can one by one replace a healthy lymph node so there is no more node and all tumor and just keeps spitting out seeds to grow elsewhere.  It can take over or shut down the brain, kidneys, bladder, bones, eyes, neurological functions like breathing, walking, memory, higher brain functions and on and on and on.  Sometimes death is sudden, sometimes it can be a lingering and agonizing process.  

      No easy answers that apply to everyone about diagnosis, treatment or disease progression for any two people with melanoma and that is why there is no cure.  Melanoma is well known to morph and do different things to different people.

      Charlie S

      Loading spinner
Viewing 3 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.