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Dad partially diagnosed three months ago. No one’s doing anything.
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Dad partially diagnosed three months ago. No one’s doing anything.

› Forums › General Melanoma Community › Dad partially diagnosed three months ago. No one’s doing anything.

  • Post
    • June 21, 2022 at 5:15 pm
    Keisha
    Participant
      In April my dad experienced a lot of floaters and impaired vision. He eventually went to the eye doctor and they saw that not only did he have a detached retina, but he also had a mass show up during their check up. I’m not entirely sure what was done since I wasn’t there for the appointment. They were concerned that it was cancer and suggested that he go to a different facility that was more equipped. Two doctors there noted that it looked like cancer and suggested he go get emergency surgery states away (the following week in early May). Surgery was never performed and he has since seen the specialist an additional time.

      The specialist thought it could be lung cancer so back in our hometown a CT scan was done where a small spot appeared on his lung. However they said it “appeared” to be benign. The specialist did the same test (unsure since I wasn’t there) and suggested my dad go back in for a third time to do the same test, however my dad is working with minimal funds and couldn’t afford to make the trip back up there. The specialist also said his vision seemed to be improving and he didn’t want to operate yet. My dad went back to the doctor locally and he said “you need to get your eye removed otherwise you will die”.

      We’re going back to the specialist soon (next Wednesday). This time I’m going and I just don’t know what to ask or how to be an advocate. I’m so frustrated that it’s been three months and nothing has been solved or officially diagnosed with anything. Time seems to be of the essence and I’m at a loss. Any thoughts or advice? What were your experiences?

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    • Replies
        • June 21, 2022 at 6:24 pm
        ed williams
        Participant
          Keisha, does your father have a history of melanoma?
            • June 21, 2022 at 6:53 pm
            Keisha
            Participant
              Not that I am aware!
              • June 22, 2022 at 8:42 am
              ed williams
              Participant
                So why join a melanoma web site forum to find answers if doesn’t have melanoma history? Have they taken any biopsy tissue and sent that tissue out to a pathologist for analysis? I guess what I am trying to ask is how did you end up coming to a melanoma site when your dad has no history of melanoma?
                • June 22, 2022 at 9:37 am
                Keisha
                Participant
                  Because they’re alluding that he might and since I’m going to his next appointment, I’d like to know what things to ask since the local doctors are convinced he does whilst the specialist isn’t doing anything.

                  If I need to delete my post I will. Sorry I bothered all of you.

                  • June 22, 2022 at 9:54 am
                  ed williams
                  Participant
                    Keisha, you are not bothering anyone, you just haven’t share much information and it is hard to give any advice without information. Could you explain the connection with the eye that makes Dr.s think it is, I would imagine Uveal melanoma. With lung tumors the normal process is to do a needle biopsy to determine if it is cancer or not, especially if there is no prior history of cancer. Uveal, eye type of melanoma is very rare and I would imagine like skin melanoma a biopsy would be done in order to make an accurate diagnosis. Again, you are not bothering anyone, just try and get as much specific information as you can about why one dr is saying no worries and another is saying take out his eye, that is a big spread of opinion and I am wondering why such variation.
                    • June 22, 2022 at 10:24 am
                    Keisha
                    Participant
                      I haven’t gone to his previous appointments so I only have the information my dad is relaying me. He’s not the greatest at communicating clearly. From what I have gathered from his first appointment to get his eye looked at for the detached retina, his first doctor saw a black mass that he thought looked to be cancer. He told my dad to go to an ophthalmologist for a second opinion and surgery to fix his detached retina.

                      The ophthalmologist said he did look like cancer and had a second person look to back up his opinion. They said due to the potential mass they couldn’t fix his detached retina without making it worse and to go to a specialist in St. Louis for emergency surgery the following week (which would have been first week of June). About a week later the specialist in St. Louis looked at my dad’s eye (I’m not sure what all was done), but from there the doctor said it could be lung cancer (I’m not sure what led him to this conclusion) and to go back to our hometown and get bloodwork and a CT scan. My dad did that. He made no mention of the results of the bloodwork, but if something came back I’m sure he would’ve mentioned it. However on the CT scan they found a small mass or something in his lung. Just by looking at it, the doctor said it was likely benign but no actual biopsies have been done to his eye or the lung (currently).

                      My dad then goes back to St. Louis with this newfound information. The specialist said my dad’s vision seems to be getting better (because my dad kept relaying it’s not as bad as before. He still sees flashes of light and is light sensitive, as well as lots of floaters). The specialist said to come back in another two weeks to do the same testing as the last two times. I’m not sure what testing that is and then if his vision is still improving, he won’t do surgery.

                      This is all I know. I’m frustrated at how long this is taking just for them to assume it MAY be cancer. From my own research on symptoms and peoples’ experiences on how they discovered it themselves, it seems likely. I know this isn’t a lot of information, but this is all any of us have.

                      Admittedly, my dad isn’t an easy patient. He’s scared so he’s making things seem less dire, which I’m sure is complicating doctors’ ability to diagnose. Even so, I wish they would do more testing vs just the initial same. Now I have to be my dad’s advocate and work against him and talk with doctors that seem not too rushed to do more.

                      I’m just at a loss of what to do/ask, especially since I am supposed to be moving across the country with my fiancé in October and I’m the only one that can feasibly do any of this for my dad (only child here). I didn’t know if anyone else had similar experiences or etc. I guess I’m just trying to gain as much knowledge as I can before my dad’s third appointment with the specialist so I can be more of an asset and hopefully push things in a forward moving direction.

                      • June 22, 2022 at 10:40 am
                      ed williams
                      Participant
                        This is a good site for information on Uveal melanoma (eye), I hope it helps you have some clarity. http://www.ocularmelanoma.org/diagnosis.htm
                        • June 22, 2022 at 10:42 am
                        ed williams
                        Participant
                          Also the MRF has a resource page that might be helpful. Best Wishes!!! Ed https://melanoma.org/patients-caregivers/ocular-melanoma/
                          • June 22, 2022 at 12:57 pm
                          Keisha
                          Participant
                            Both of those links are so helpful! Thank you Ed, I really appreciate it. This points me in the right direction.
                            • June 22, 2022 at 10:02 pm
                            ThinkingPositive
                            Participant
                              Hi Keisha,
                              In addition to the others advice, make sure your name is listed as a contact at all his doctors. That way, now and when you move, you can have access to his patient portals and speak to clinical staff .
                              I had a lot of that monitoring my dad’s appointments. But that’s what we do for family and loved ones.
                              Best, Cindy
                              • June 22, 2022 at 10:08 pm
                              Keisha
                              Participant
                                I would’ve never thought of that. Really, really good tip! Thank you!
                              • June 22, 2022 at 5:01 pm
                              Bubbles
                              Participant
                                Hi Keisha,

                                Your dad is lucky to have you in his corner!! Unfortunately, there are a few cancers that can attack the eye. So, a biopsy is crucial. However, melanoma, even at Stage VI, is no longer the death sentence it was just a decade ago! With treatments that were FDA approved only in 2011 and since, there is hope. So, if your father does turn out to have melanoma please check back in as there are many here who can help chime in with information about treatment plans and such. I hope you gain clarity and info with the upcoming appointment.

                                Wishing you and your dad my very best. Celeste

                                  • June 22, 2022 at 6:09 pm
                                  Keisha
                                  Participant
                                    Thank you Celeste!

                                    Your positive words have helped my spirits today! I really appreciate it. I will hopefully have an update with some substantial information.

                                  • June 25, 2022 at 12:25 am
                                  JudiAU
                                  Participant
                                    http://www.ocularmelanoma.org/doctorfinder.htm Ocular melanoma is very rare and your doctors have probably not seen it before.
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