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Tired of the waiting game

Forums General Melanoma Community Tired of the waiting game

  • Post
    robbier
    Participant

      I changed oncologist because I felt like I was in a waiting game with my old one.  Well now with the new one, same old waiting game.  I hate the waiting game.  My last appointment was July 24t.  This ws after a pet scan on July 23rd of 2014.  To make a long story short, I am diagnosied with Metastatic melanoma now.  The scan showed a abnormal finding in the right femur near the mid right of h eleg, suppected in the marrow.  then a supped area in the left public area.  My doctor wanted me to have a bone scan come back and see him then talk treatment.  I called fffffffmy new doctors office for two weeks.  To find out someone scheduled this test inOctober of 2014.  I told them no, I need this test asap. Not October.  so I go tomorrow for bone scan back to my new Doctor July 21th.  I will tell him if he dones't want to treat me, please send me to someone that at least I will fell like I  am the number one person at that point in time.  My insides are screaming, had a two day crying thing.  (Maybe it was a pity party).  I am just tired of being on the socalled back burner, and the wait and see appraoch when I have been told Ihave stage 4 melanoma cancer.  So far I have had no treatment. ''

       

      The waiting on doctors is the pits.  How in thew orld does anyone get through the wiaitng on doctors without falling apart.  I failed apart waiting.  Arg!!!!  Thanks for letting me sound off.

       

      Robbie

    Viewing 5 reply threads
    • Replies
        AnitaLoree
        Participant

          Dear God, it sounds like you're with Kaiser.  Our total empathy.  Must keep pushing; learn as much as you can about your cancer and healthy self care; do internet searches on current treatments/trials so you can ask informed questions, demand intelligent tho'tful answers; keep following Community board postings, lots of knowledgeable, experienced Posters, good info; seek transfer to a Melanoma center.  Melanoma is an ogre but has its vulnerbilities and much new developments on attack pathways.  Wishing you stamina, perseverance and a cool head.

          AnitaLoree
          Participant

            Dear God, it sounds like you're with Kaiser.  Our total empathy.  Must keep pushing; learn as much as you can about your cancer and healthy self care; do internet searches on current treatments/trials so you can ask informed questions, demand intelligent tho'tful answers; keep following Community board postings, lots of knowledgeable, experienced Posters, good info; seek transfer to a Melanoma center.  Melanoma is an ogre but has its vulnerbilities and much new developments on attack pathways.  Wishing you stamina, perseverance and a cool head.

            AnitaLoree
            Participant

              Dear God, it sounds like you're with Kaiser.  Our total empathy.  Must keep pushing; learn as much as you can about your cancer and healthy self care; do internet searches on current treatments/trials so you can ask informed questions, demand intelligent tho'tful answers; keep following Community board postings, lots of knowledgeable, experienced Posters, good info; seek transfer to a Melanoma center.  Melanoma is an ogre but has its vulnerbilities and much new developments on attack pathways.  Wishing you stamina, perseverance and a cool head.

              Jubes
              Participant

                Hi Robbier, I know just what you are saying. I had my first symtoms (cough) in February but by the time the doctors treated me for lots of things i didnt have, i insisted on a chest x ray and we found a big spot in my lung and chest nodes. They thought it was lung cancer and were all ready to take out the lung and nodes that week. After that it was pergatory getting appointments for respiratory doctors (some wanted me to wait 2 months for an appt!) then for PET scans, bronchoscopes and lung biopsys etc. It all takes so long and then there will be a holiday or something else that stalls things. 

                Find a doctor you trust. It's so important. Doctors are dealing with sick and dying ppl all the time and I guess they still have families and lives of their own. it's just so frustrating when you know that every minute could count and they are off doing Mondays and Wednesdays in another clinic somewhere or on the golf course.

                HOWEVER do not depair, because I was so pleased that my doctors didnt take out my lung or rush into major surgery. They have a great plan and spent a lot of time getting the diagnosis right and then the best and most appropriate treatment for you. You need to keep on it and advocate for yourself. Just think of it as a job that needs doing. I am lucky. I have a dr now who asks me to call him any time day or night, so obviously I would only do that in an emergency but it is very reassuring to know I can if I want.

                I cried in the beginning too. Diagnosis is the worst part. I hope your journey is successful and you should rant if it makes you feel better and stirs you to fight for your life!! Good luck and i hope the journey gets easier for you!

                 

                Jubes
                Participant

                  Hi Robbier, I know just what you are saying. I had my first symtoms (cough) in February but by the time the doctors treated me for lots of things i didnt have, i insisted on a chest x ray and we found a big spot in my lung and chest nodes. They thought it was lung cancer and were all ready to take out the lung and nodes that week. After that it was pergatory getting appointments for respiratory doctors (some wanted me to wait 2 months for an appt!) then for PET scans, bronchoscopes and lung biopsys etc. It all takes so long and then there will be a holiday or something else that stalls things. 

                  Find a doctor you trust. It's so important. Doctors are dealing with sick and dying ppl all the time and I guess they still have families and lives of their own. it's just so frustrating when you know that every minute could count and they are off doing Mondays and Wednesdays in another clinic somewhere or on the golf course.

                  HOWEVER do not depair, because I was so pleased that my doctors didnt take out my lung or rush into major surgery. They have a great plan and spent a lot of time getting the diagnosis right and then the best and most appropriate treatment for you. You need to keep on it and advocate for yourself. Just think of it as a job that needs doing. I am lucky. I have a dr now who asks me to call him any time day or night, so obviously I would only do that in an emergency but it is very reassuring to know I can if I want.

                  I cried in the beginning too. Diagnosis is the worst part. I hope your journey is successful and you should rant if it makes you feel better and stirs you to fight for your life!! Good luck and i hope the journey gets easier for you!

                   

                  Jubes
                  Participant

                    Hi Robbier, I know just what you are saying. I had my first symtoms (cough) in February but by the time the doctors treated me for lots of things i didnt have, i insisted on a chest x ray and we found a big spot in my lung and chest nodes. They thought it was lung cancer and were all ready to take out the lung and nodes that week. After that it was pergatory getting appointments for respiratory doctors (some wanted me to wait 2 months for an appt!) then for PET scans, bronchoscopes and lung biopsys etc. It all takes so long and then there will be a holiday or something else that stalls things. 

                    Find a doctor you trust. It's so important. Doctors are dealing with sick and dying ppl all the time and I guess they still have families and lives of their own. it's just so frustrating when you know that every minute could count and they are off doing Mondays and Wednesdays in another clinic somewhere or on the golf course.

                    HOWEVER do not depair, because I was so pleased that my doctors didnt take out my lung or rush into major surgery. They have a great plan and spent a lot of time getting the diagnosis right and then the best and most appropriate treatment for you. You need to keep on it and advocate for yourself. Just think of it as a job that needs doing. I am lucky. I have a dr now who asks me to call him any time day or night, so obviously I would only do that in an emergency but it is very reassuring to know I can if I want.

                    I cried in the beginning too. Diagnosis is the worst part. I hope your journey is successful and you should rant if it makes you feel better and stirs you to fight for your life!! Good luck and i hope the journey gets easier for you!

                     

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