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Switching Oncologists at MSK – MSK Second Opinions – Opinion Logistics
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Switching Oncologists at MSK – MSK Second Opinions – Opinion Logistics

› Forums › General Melanoma Community › Switching Oncologists at MSK – MSK Second Opinions – Opinion Logistics

  • Post
    • April 1, 2017 at 4:42 pm
    baesill
    Participant

      Hello everyone,

      I am 33 years old and was just diagnosed with stage 4 melanoma, 7 years after I had stage 2A.

      I gathered 3 opinions in NYC to kick off treatment. A veteran at NYU and another veteran at Penn both had same recommendation. I met with the young rising star at MSK and he had a different suggestion, but after he ran it by the higher ups, they changed the recommendation to match NYU and Penn.

      I can't help but feel he got it "wrong" in our initial appointment and it makes me really worried about choosing him as the lead on my case. I know doctors are going to disagree, but the other veterans assured me this first choice was a no brainer. And if my oncologist is going to be lead on managing side effects of potentially dangerous therapy, maybe it's not wise to rely on someone with less experience.

      All that said, I really want to start treatment now that the path forward seems clear (for now).

      Has anyone switched oncologists within MSK before to a more senior doctor? Is it easy to use MSK for second opinions down the line, if you choose to have your primary oncologist at another institution?

      I guess I am trying to figure out if it's easier to switch doctors within MSK…or if it's better to choose someone more senior at another institution and then try to switch back to MSK (with different doctor then my initial appointment) after I get my 6/12 week scans. Or does anyone have advice about getting second and third opinions after those scans?

      I have this feeling that now that I've met with one doctor at MSK, it's virtually impossible to change within the team.

      Just want to say thank god for everyone on this board! I feel so devastated that I can't get an oncologist I deeply trust at the institution I want to be at. Any advice would be so amazing!!

      Lots of love to all.

       

    Viewing 5 reply threads
    • Replies
        • April 1, 2017 at 6:29 pm
        jennunicorn
        Participant

          Can you share what the recommendation is from NYU and Penn vs what the younger onc recommended? There are multiple paths one can take at stage 4 and it really comes down to a personal decision as a patient too. My oncologist is young, this is only her second year out of fellowship and she's only a few years older than me, but she has been in melanoma research throughout her fellowship and is a melanoma only oncologist. She knows everything about all the drugs on the market and also knows a lot about trials, so she's been really great to have as a doc since she is newly invested in these types of treatments and very passionate about immunotherapy and patient care. It feels like she is even more thorough in her approach to treating/investigating side effects and other things any time I bring up a concern.

          You definitely want to have an oncologist you're comfortable with, that's important. We have to make sure we have docs that listen to us when we have a concern, especially when it comes to side effects, since some of them can get serious but have a better chance at doing less damage when treated early. 

          When my mel came back and I had the door open to all the immunotherapy drugs, my oncologist laid out the options, went over possible trials, and then let me choose. I told her what I felt I wanted to start with, and she said she agreed that was a good place to start. If I had chosen something else, maybe she would have given me her opinion on something different, but ulitmately it was up to me and what I wanted to do. It definitely helped having a lot of information from this board first.

          I'm on the west coast, so I can't give advice about docs at MSK, but wanted to give an idea of my experience with a young oncologist. 

          • April 1, 2017 at 7:38 pm
          ed williams
          Participant

            I have the same first question that Jenn had, what was the recommendation given by your oncologist and what was the explaination for his or her advice and what was the other options given by other oncologists? Best Wishes!!!Ed

              • April 3, 2017 at 4:06 am
              baesill
              Participant

                ipi+nivo from NYU and Penn…the doctor at MSK initially said start with PD1 and then I can always add ipi later. At the time it sounded interesting, but after seeking the tiebraker reco at Penn it sounded like ipi+nivo is clear gold standard right now and would only recommend starting with a PD1 only if I was very old or wouldn't tolerate side effects well. 

                The main thing that is stressing me out is the politics of MSK and if they will let me switch from my doctor to the more senior doctor who is involved with my case and how I can do that and how quickly. I hear they are strict and just say no to switching between doctors on the same team. I have to have this conversation with them tomorrow and it's causing me a serious amount of anxiety. Help!

                • April 3, 2017 at 4:57 am
                jennunicorn
                Participant

                  Sounds like the younger doc was just taking a cautious approach which is not uncommon. There are even senior docs that take that approach.

                  Not sure if I have any advice on how to switch docs other than to tell them you would really prefer to work with Dr. ______. You are the ultimate decider of what happens with your care, so no matter what doctor you have, as long as you have a melanoma oncologist and not a general one, you should be in good hands. MSK is a great place and they wouldn't have a doctor on staff that wasn't fully up to date and aware of everything involving melanoma and immunotherapy side effects.. most of what they do all day is deal with side effects of these treatments. Also, these docs work as a team, like when he ran his idea past the other docs and they said doing Ipi/Nivo right away would be fine. So, you'd still be getting input from all the doctors. But, f they say you have to say with this doc and you are just not comfortable with him, then go to the doc at one of the other places that you liked. You could definitely use MSK as a second opinion down the line if you ever needed to.

                  Hoping it all works out best for you, having an oncologist you trust and are totally comfortable with is priceless. I feel lucky that the first melanoma specialist I met I really clicked with. 

                  • April 3, 2017 at 2:05 pm
                  mary1233
                  Participant

                    Something to consider – the ipi part of the combination therapy is the one with the more severe side effects. 

                    Wishing you all the best.

                    • April 4, 2017 at 12:28 am
                    Prd10
                    Participant

                      Sorry that you are dealing with this.  I also have a very young Dr, he's very well known in the melanoma world, but since he's now my third Dr it took some getting used to.  His approach is just a bit different but I don't see it as getting it wrong.  I'm also very young, probably one of his few patients that is younger than him.  He's explained to me more than once that it used to be that you would attack melanoma from all angles.  Cut it out, treat it, cut it out again and then throw on more drugs and hope for the best.  Now there's better options and he's treating more to manage the disease.  My original Dr that had been treating melanoma longer than I'd been alive would've thrown everything at me (even old outdated therapies) while holding my hand.  I've been very lucky with them both, but you also learn to ask questions and advocate for yourself. 

                      With that said a year ago I became stage 4.  My Drs recommendation was to start on PD1 ASAP.  Like you I questioned why not IPI/NIVO.  Of course he said it was my choice and he would support me but suggested that bc my tumor burden was very low PD1 could be all I ever need and adding the IPI could have bad side effects.  He also said we can always add IPI down the road if we need to.  Knowing that my tumor burden was low and that we would be watching very closely I went ahead with just the PD1.  That was a year ago and I don't regret it.  I've had a year of stage IV cancer and I've felt pretty damn good.  That doesn't mean I wouldn't have tolerated IPI well, I think some people do okay with it.  Also in that year I've had trials become available to me that weren't available last year. 

                      I would ask the Dr why he made his recommendation and why he changed his mind?  I would ask at what point would he recommend switching treatments, etc.  When will you scan?  

                      All of that aside though you need to be comfortable with your Dr.  I wouldn't hesitate to ask to switch. 

                       

                    • April 3, 2017 at 7:32 pm
                    Mat
                    Participant

                      I've been with Dr. Schuchter (UPenn) since my stage IV diagnosis in 2013.  (I live in Philly.)  I consult with Dr. Wolchok (MSK) for major treatment decisions–but am still treated at UPenn.  (I see him once a year or so.)  Has been great–no communication, etc. issues.  I don't have any advice on switching.

                      • April 3, 2017 at 7:37 pm
                      SABKLYN
                      Participant

                        If it was me, I would ask the younger oncologist why he changed his recommended treatment, what caused him to go in that initial direction, as well as the benefits and liabilities of each.  If you are not reassured after he's explained it to you, I would ask to have my case reassigned.  It's not a comfortable thing to do, but, you're the boss when it comes to your care.  I have had a great experience with Dr. Wolchok who is compassionate and extremely knowledgable.  He took over my case mid-stream, when Dr. Carvajal went to Columbia Presbyterian.  

                        You can also ask if MSK has a patient Ombudsman or other person with whom you can address your concerns confidentially.   Hope that helps and good luck!!

                        • April 4, 2017 at 3:25 pm
                        cancersnewnormal
                        Participant

                          I too would strongly suggest finding out WHY this younger doctor had a change of mind. When seeking treatment, we all want what is best for us, which is typically a more experienced specialist. HOWEVER, we must also bear in mind a doctor's/facility's "disclosures". What drug companies (if any) are they closely involved with for research and trials. As much as we would hope and love for our docs to be totally on our side, with our best interests at heart, sometimes patients can be tossed into a treatment that has become standard with a facility, due to their partnerships and research funding. Take heed what a specialist will recommend, but also question them as to WHY that is their opinion, versus options you have read/heard/received from another source. It is YOUR body. YOUR health. Be inquisitive. If a doctor seems agitated by your questions, you're not with the one that is right for you.

                          • April 5, 2017 at 12:53 am
                          ed williams
                          Participant

                            Hi Baesill, I just thought that you might like to take a look at some findings from Checkmate 067 study released today from Bristol Myer Squibb in regards to overall survival with the combination vs Nivo monotherapy or Ipi monotherapy. There is a 5% improvement in overall survival with the combination vs Nivo monotherapy with the trade off with grade 3/4 adverse events being 58% for combination vs 21% for Nivo monotherapy. This might be why the first Oncologist was pushing you towards the Pd-1 (nivo) drug vs combination to try and keep your chances of developing bad side effects down. Here is the link to BMS press release, if it doesn't work just go to the companies home page and click on Press releases and look for checkmate 067 from todays date!!! Best Wishes!!!Ed https://news.bms.com/press-release/bmy/opdivo-nivolumab-combination-yervoy-ipilimumab-and-opdivo-monotherapy-significantl

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