MRF-Logo2019-Horizontal-RGB
Wth does “It’s fine” mean with Stage III…?
REGISTER
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.

Wth does “It’s fine” mean with Stage III…?

› Forums › General Melanoma Community › Wth does “It’s fine” mean with Stage III…?

  • Post
    • June 25, 2018 at 9:30 pm
    Riven
    Participant

      As some of you know, last week I posted about having been diagnosed with Stage III Melanoma and I was going in for my first ever PET and MRI. Interestingly enough the PET went better than expected and the MRI was much worse. (I have a feeling that when I was being told about these tests I got the acronyms backwards. That is very common for me because I am dyslexic.)

      Today was the day I was told I’d get the results of both tests. The tech said that if I hadn’t heard anything by lunch to call the office, so I did. An admin answered and took a note for Dr. Hsueh to call me back as soon as he could. Now mind you, I am well aware that his nurse Sandy’s last day of vacation is today, so I didn’t really expect him to call me back at all.

      He did end up calling, and he definitely seemed rushed. When I answered he said “Hello Rebecca. I want to tell you that it’s fine. Your tests came back fine. Okay?” I said that I didn’t expect that and he said, “Well, they are fine, okay? Have a good day.” And as soon as I finished my response he hung up.

      I’m doing my best to keep calm about this. As an office admin myself, I know how hectic a job can be when someone is missing from the office. Still, I really don’t know what he meant. Everyone has varying degrees of what ‘fine’ means. I don’t even know what sub stage of III I am yet, so I don’t really even know what ‘level of fine’ I can use to compare to my experience.

      I’m just so frustrated. I feel like I might just call the office tomorrow afternoon and ask for Sandy; maybe she will be able to help shed some light on the situation. I’ve been trying to do research, but things are very complicated at Stage III and I get lost very easily, hurray for being dyslexic…
      If any of y'all have any advice, I welcome it with open arms!

      Best Regards,

      Becca

    Viewing 2 reply threads
    • Replies
        • June 25, 2018 at 10:20 pm
        Bubbles
        Participant

          Hang in there.  Perhaps this post will help you get some footing and allow you to be a bit more prepared for what to discuss next:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=primer  

          There is a link to common acronyms at the bottom of the post.  No, melanoma is not "fine".  Getting the run around is not fine.  Hopefully more clarity will be provided soon.  Being your own best advocate comes with the diagnosis.  You can do this.  Ask more questions as you need.  I wish you my best.  Celeste

            • June 26, 2018 at 2:59 pm
            Riven
            Participant

              Thank you very much for responding to my post. I have been reading a lot of what you have to say, and it means a great deal that you gave me your time! I honestly was hoping that you were able to see and respond to my post! (Not to say that I'm not grateful for everyone else's imput, because I am!)

              Thank you for the link to the primer. I actually read it over last week at the suggestion of MichelleRHG, but I must have missed the link to the acronyms! And I'm not going to lie, last week reading the primer was like reading a forgin language. Hopefully with this new info on the acronyms I will understand it better this time!

              I was explaing to my roomate, Link, what the doctor said, and that I might call today or tomorrow to speak with Sandy. I said today or tomorrow because I know she is getting back from a long vacation, and as an admin I know how hectic it can be getting back. Link was not very happy with this and began to tell me about how it doesn't matter how hectic her job is, the fact is that it is her job and that I must  call this afternoon. 

              I know that I need to be my own advocate, but I'm not sure where the line is. Meaning, how do I know if I am pushing to aggressivly or if I'm not being paitnent enough? I really don't want to make my doctors and nurses unhappy to hear that I am calling or coming to see them. I'm afraid if that becomes the case, then they might not give me the care I need.  It's all so overwhelming and pretty frightening.

              Thanks so much for all of the help.

              Becca

            • June 25, 2018 at 11:06 pm
            doragsda
            Participant

              Whenever my wife has any procedure performed – a blood test, x-ray, MRI, CT, PET, etc.   she always fills out a medical records form authorizing release of the results to me and I stop by the facility where it was performed two or three days later and obtain a copy of the results.   For scans I get a CD with the image files as well as a hard copy of the report from the radiologist who read it.  

              Several years ago I was on a jury in a case where a woman had a suspicious spot show up on a mammogram.   No one called her (probably because the mammogram was performed during the Christmas holiday period).   It went untreated until her next annual mammogram, where it was much larger and they could not successfully treat her at that point.  From that I learned to never believe that "no news is good news."

              I do not leave my care entirely in someone elses hands if I can avoid it.  You did the right thing by calling, but the truncated response from the doctor has obviously left you worried.  I think you're on the right track with calling back to talk to someone else who can give you more information.   I also suggest you get copies of everything produced thus far in your care.   

                • June 26, 2018 at 3:06 pm
                Riven
                Participant

                  Thank you very much for giving me your time and replying to my post.

                  Having someone as a back up is a really good idea. My mom is already listed as my advocate for me on my advanced directive, so I'm sure it wouldn't be an issue giving her permission to have my files. My biggest issue with this is, I have no clue how to go about getting these forms. I've been told over and over again to get the results from the doctors. Do I just ask? Do I need to fill out forms? Who do I ask? Sometimes when I call the hospitals I get transfered between departments multiple times before I lad in the right mailbox.

                  I've never believe that 'no news is good news' due to almost losing a friend because no one knew she was sufferening from alcohol poisioning.

                  Do you have an suggestiong on the best way to getting physical copies of my results?

                  Thanks!

                  Becca

                • June 25, 2018 at 11:45 pm
                Janner
                Participant

                  Most likely "fine" means nothing of interest showed up on the scans.  But call and get a better explanation as well as at least a copy of the reports for your own records.  Even more than just for litigation, if you ever see another doc – related to your melanoma or not – you have copies of all your pertinent info with you.  Keep a notebook!

                    • June 26, 2018 at 3:21 pm
                    Riven
                    Participant

                      Thank you for taking a moment of your time to give me a response! It means a lot! I understand how precious time is to us.

                      I kind of figured that 'fine' meant that I have not been misdiagnosed with III and am actually IV.  But I haven't actually been told which stage of III I am, so like I said, 'fine' seems very vague to me. Though, I happen to have extreme anxiety issues, so I know that part of it is my anxiety driving me up the wall.

                      I actually started keeping a note book a few days after the surgery to remove the primary. (As an admin I have learned to take good notes on EVERYTHING) It's split into two parts. The front half has random facts I have found, comments from other fighters that I have found important, inspirational quotes, and some of  my goals. The second half is basically a call log, so any correspondence I have had with my doctors and nurses. I've been told that having a planner with appointment dates is a good idea, and that also having a daily calender notebook for symptoms is a good idea. That way I can have a specific log of what's going on with me during treatment. What do you think about that? Is having three or four different things kinda going over board? Am I getting ahead of myself?

                      Thank you so much for your help!

                      Becca

                      • June 26, 2018 at 4:51 pm
                      Janner
                      Participant

                        Nothing is overkill if it helps you have a sense of control.  That's the hard thing with any cancer diagnosis – that feeling that we have no control.  So if the log helps you feel on top of things, then go for it.  It might be a bit much in the long run but you'll find what works best for you over time. I'd just add some type of results section where you have pathology and scan reports easily accessible.

                        • June 27, 2018 at 12:20 pm
                        marta010
                        Participant

                          HI Becca – my husband keeps an informal "journal" to keep track of his daily status and any unusual symptoms.  It's very easy to dismiss a new symptom as a nuisance or fluke for a few days but if you keep track, you have a better sense of an issue becoming a trend rather than a fluke.  He tracks his appointments on a google calendar shared with me so I don't have to independently keep track.You'll find a system that works for you – since all this is new to you, it may seem overwhelming but you'll get more comfortable and familiar with the routine and you care team.  Best wishes for good health.

                          Ann

                    Viewing 2 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.

                    Popular Topics