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Update-oncologist appt
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Update-oncologist appt

› Forums › General Melanoma Community › Update-oncologist appt

  • Post
    • August 30, 2018 at 10:40 pm
    Savymoo23
    Participant

      So just met with my oncologist, he doesn’t really have much concern with my diagnosis (stage 2B) and doesn’t feel like I need scans. He is doing blood work and said he’ll base weather or not I need a PET off of that. But other then that he said he’ll just have me do every three months with a dermatologist. What are y’all thoughts? Should I push for scans?

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        • August 31, 2018 at 12:34 am
        RichInLife2
        Participant

          I would. Not to scare you, but I was 2b in October 2014. I’m now stage IV, but my blood work is still fine. If I had it to do over again, I would have gotten scans. 

            • August 31, 2018 at 1:03 am
            Savymoo23
            Participant

              How did you find out you were stage 4? 

              • August 31, 2018 at 1:12 am
              RichInLife2
              Participant

                Hi Savannah, in my case I had swollen lymph nodes near the original site. They were biopsied and came back positive for melanoma. Scans then revealed that it had spread to my lungs, liver and brain. Again, not trying to scare you, but the sooner you get out in front of melanoma, the better your chances. 

                Make sure you get an oncologist and dermatologist who are well versed in melanoma. 

                Good luck,

                Rich

                • August 31, 2018 at 2:30 am
                doragsda
                Participant

                  I concur.   My wife was stage 2 in December 2016 after a WLE of her left calf and SLNB that was clear, all scans were clear at that time.   6 months later she was dizzy and vomiting and I took her to the ER where a MRI showed two brain mets.    Melanoma is aggressive and you can't let your guard down, in my opinion.   She has had a craniotomy, gamma knife, and is currently on immunotherapy and is NED.

                • August 31, 2018 at 2:58 am
                Joycem
                Participant

                  I’m 2c, (2yrs since dx) and am also followed without scans.

                  My onc said the radiation exposure from scans increases risk of other types af cancer, (esp breast) and a few months ago they told me that blood work really wasn’t correlating with spread (elevated for lots of non-cancer reasons and not always elevated by mets) and was no longer standard of care. I Don’t miss all the extra pokes. 

                  So yes, as explained to me, I basically wait and watch for recurrence or symptoms of mets. I’m not pushing for scans for above reasons, and because I have high insurance deductibles and would rather take a vacation than pay for scan. 

                  I can sure understand the reasoning of people who feel otherwise though. It’s a tough call I think. 

                  • August 31, 2018 at 5:28 am
                  GeoTony
                  Participant

                    Push for scans, even if it's just a CT, I started with stage 2b in 2014, monitored by derm every 3 months until 2016 when my swollen lymph tested positive, straight to stage IV as my first scan revealed lung, liver and bone tumours, bloodwork looked normal, my oncologist's words were 'if it wasn't for the swollen lymph node we wouldn't be seeing you', wish I'd been scanned earlier.

                      • August 31, 2018 at 1:05 pm
                      Savymoo23
                      Participant

                        That is exactly how I feel!!

                        My surgeon told me to really push for scans because im only 22 and he considers me high risk. My oncologist even said im high risk stage 2. So I'm confused haha

                        • August 31, 2018 at 3:31 pm
                        Threefitty
                        Participant

                          "See a melanoma specialist" (#1 advice on this board probably) is really another way of saying "you cannot trust a mere oncologist". At 22, hopefully you can exclude all financial considerations and just view the trade off of long term exposure risk vs. value of potential early warning.

                          I just got the impression from my general oncologist consult that he was not melanoma sensitive enough to guide me through those types of questions. The more I learned about Breast Cancer and other cancers by sitting in some Gilda's Club meets reinforced that this field is so broad and ever deepening, it's not the fault of the general oncologist that they may not be as up to date on melanoma issues so as to be best able to weigh such questions sensitively.

                          • August 31, 2018 at 4:09 pm
                          Savymoo23
                          Participant

                            Do I have to get a referral or do you think I can do it myself? Cause I hate to offend people haha. I don't think he's uneducated at all but I definetly felt like he didn't think my cancer was all that serious and he had some better things to do. He did blood work but I highly doubt it will show anything even if it has spread.

                            • August 31, 2018 at 7:53 pm
                            SABKLYN
                            Participant

                              I have Aetna and did not have to.  I think second opinions are comon enough *my original oncologist encouraged it), where your doc shouldn't be offended – and if he, may be time to evaluate id you want to be in this person;s care.  At any rate, the doc from whom you will be asking for a second opinion, will need a release for your medical records.  The doc will know regardless.  On the long list of things to worry about, offending a provider should be pretty low!

                            • August 31, 2018 at 1:43 pm
                            SABKLYN
                            Participant

                              According to the attched, scans are recommended annually.  I had scans every three months for two years, every six for the following 3 years and now, annually.  For my own piece of mind, I think staying on top of it is a better option than waiting for something to happen.  I would push for the scans and discuss the pluses and minuses with your doc. Is your oncologist a melanoma specialst?  

                              https://www.aimatmelanoma.org/stages-of-melanoma/stage-ii-melanoma/stage-ii-follow-up

                              • August 31, 2018 at 1:43 pm
                              SABKLYN
                              Participant

                                According to the attched, scans are recommended annually.  I had scans every three months for two years, every six for the following 3 years and now, annually.  For my own piece of mind, I think staying on top of it is a better option than waiting for something to happen.  I would push for the scans and discuss the pluses and minuses with your doc. Is your oncologist a melanoma specialst?  

                                https://www.aimatmelanoma.org/stages-of-melanoma/stage-ii-melanoma/stage-ii-follow-up

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