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I need advice !

› Forums › General Melanoma Community › I need advice !

  • Post
    • October 22, 2016 at 12:13 am
    Jango
    Participant

      Hi all, I really need your help and advice. Sorry for the long story.

      I posted recently as my dad was hospitalized due to extreme fatigue and lack of appetite. They did a ct scan of his abdomen and found a mass as well as spots both in the abdomen  and a few on the outside of the lungs. They tried one biopsy and were not successful. He was admitted to a hospital that does not have any cancer care, but his doctors who specialize in internal medicine assumed that it was a reoccurrence of melanoma, because my dad had stage 1 melanoma three years ago. We were able to get an appointment with an oncologist and he saw my dad at his absolute weakest. He was weak, but he was also a bit out of it because of a residual effect of sleeping medication. He said he could not treat anybody that was so weak and that he needed a biopsy to even confirm cancer. He was a melanoma specialist but said that it was only a fifty percent chance it was melanoma and that other cancers could present in the same way. So this report was given to the other doctors , not oncologists who basically wanted to send my dad to palliative care before even giving a diagnosis !!!! I insisted that the do a biopsy and they also want to do a brain mri to see if it has spread there. They are stalling on it now, feeling it is not a priority. It is so frustrating !!! He is actually getting a bit stronger due to steroids and I think rest and proper nutrition. But he still cannot walk on his own. He is sitting up and seems to be getting stronger a bit every day. It gets so discouraging though to have the doctors  say that it is advanced cancer without a biopsy !!! If it is stage four melanoma I m hoping it can be treated like many of you have had treatment. There are a few of you that are also from Ottawa. Please any advice would be apreciated !!!

    Viewing 5 reply threads
    • Replies
        • October 22, 2016 at 4:07 am
        snow white
        Participant

          Wow.  So sorry to hear about your Dad, its so scary.  It would be hard for me to comment because I live in the US and I know the health care system is diffrent in Canada.  But, is it at all possible to go to another doctor if you feel you are not getting the response that you need?  I would fake a massive headache and go to the ER if I had to.  Brain mets are nothing to be messed with, it is urgent to find out what is going on.  Do what you have to do to make it happen, advocate for your Dad, call every hour if your have to.  I do have a lot of experience with dealing with doctors my daughter has RA, I am a cancer survivor, and now my Dad has Mel.  If I have to get nasty I will, I prefer not to but, I will if necessary. Do what you have to do.

           

          Hang in there!

            • October 22, 2016 at 11:56 am
            ed williams
            Participant

              Hi Jango, to add to what advice Jennifer has given about "Do what you have to do" I would contact Andrew Duffy of the Ottawa Citizen newspaper!!! He does many articles about the health care system including a series of stories about the butterfly boy. Here is a link to some of the work he has done including articles about Immunotherapy and Melanoma clinical trials being done at the Ottawa General. Best Wishes!!!!Ed    http://ottawacitizen.com/author/aduffy2014

              • October 22, 2016 at 11:56 am
              ed williams
              Participant

                Hi Jango, to add to what advice Jennifer has given about "Do what you have to do" I would contact Andrew Duffy of the Ottawa Citizen newspaper!!! He does many articles about the health care system including a series of stories about the butterfly boy. Here is a link to some of the work he has done including articles about Immunotherapy and Melanoma clinical trials being done at the Ottawa General. Best Wishes!!!!Ed    http://ottawacitizen.com/author/aduffy2014

                • October 22, 2016 at 11:56 am
                ed williams
                Participant

                  Hi Jango, to add to what advice Jennifer has given about "Do what you have to do" I would contact Andrew Duffy of the Ottawa Citizen newspaper!!! He does many articles about the health care system including a series of stories about the butterfly boy. Here is a link to some of the work he has done including articles about Immunotherapy and Melanoma clinical trials being done at the Ottawa General. Best Wishes!!!!Ed    http://ottawacitizen.com/author/aduffy2014

                • October 22, 2016 at 4:07 am
                snow white
                Participant

                  Wow.  So sorry to hear about your Dad, its so scary.  It would be hard for me to comment because I live in the US and I know the health care system is diffrent in Canada.  But, is it at all possible to go to another doctor if you feel you are not getting the response that you need?  I would fake a massive headache and go to the ER if I had to.  Brain mets are nothing to be messed with, it is urgent to find out what is going on.  Do what you have to do to make it happen, advocate for your Dad, call every hour if your have to.  I do have a lot of experience with dealing with doctors my daughter has RA, I am a cancer survivor, and now my Dad has Mel.  If I have to get nasty I will, I prefer not to but, I will if necessary. Do what you have to do.

                   

                  Hang in there!

                  • October 22, 2016 at 4:07 am
                  snow white
                  Participant

                    Wow.  So sorry to hear about your Dad, its so scary.  It would be hard for me to comment because I live in the US and I know the health care system is diffrent in Canada.  But, is it at all possible to go to another doctor if you feel you are not getting the response that you need?  I would fake a massive headache and go to the ER if I had to.  Brain mets are nothing to be messed with, it is urgent to find out what is going on.  Do what you have to do to make it happen, advocate for your Dad, call every hour if your have to.  I do have a lot of experience with dealing with doctors my daughter has RA, I am a cancer survivor, and now my Dad has Mel.  If I have to get nasty I will, I prefer not to but, I will if necessary. Do what you have to do.

                     

                    Hang in there!

                    • October 22, 2016 at 4:52 pm
                    Tim–MRF
                    Guest
                      I don’t understand how the team can make decisions without information. A biopsy is critical to knowing how to move forward. I suggest you contact the melanoma patient advocacy groups in Canada to get advice on how to work the system. Kathy at Save Our Skin or Annette at Melanoma Network of Canada could provide advice. You can tell them I suggested you contact them (though I am sure they would be responsive regardless).

                      Tim–MRF

                      • October 22, 2016 at 4:52 pm
                      Tim–MRF
                      Guest
                        I don’t understand how the team can make decisions without information. A biopsy is critical to knowing how to move forward. I suggest you contact the melanoma patient advocacy groups in Canada to get advice on how to work the system. Kathy at Save Our Skin or Annette at Melanoma Network of Canada could provide advice. You can tell them I suggested you contact them (though I am sure they would be responsive regardless).

                        Tim–MRF

                        • October 22, 2016 at 4:52 pm
                        Tim–MRF
                        Guest
                          I don’t understand how the team can make decisions without information. A biopsy is critical to knowing how to move forward. I suggest you contact the melanoma patient advocacy groups in Canada to get advice on how to work the system. Kathy at Save Our Skin or Annette at Melanoma Network of Canada could provide advice. You can tell them I suggested you contact them (though I am sure they would be responsive regardless).

                          Tim–MRF

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