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July 3, 2012 at 11:38 am #20431
I thought that a second opinion was supposed to provide assistance in achieving future clarity towards a quality prudential judgment. I should have remembered, I guess, that when I sought a second opinion nine years ago in respect to type of chemo treatment for my male breast cancer, that it led to the most difficult decision I faced in the lead in. The second opinion sought yesterday on my Stage IV melanoma topped the agony of the previous one by many a mile.
On Friday, the oncologist at the University of Michigan Multidisciplinary Melanoma Center recommended surgery of my one known lesion, a lung tumor of approximately 4 centimeters in dimension followed by biological therapy. My second opinion from an oncologist at the comparable Multidisciplinary Melanoma team at the Barbara Karmonos Center in Detroit was identical. Where the difference was came from a completely different take on when the surgery should be done.
At U. of M., the idea was to wait at least five weeks for the surgery because of the seriousness of this kind of surgery and not wanting to rush to it if further watching through that period of time indicated that surgery was not advisable as first intervention and so as not to slow down because of recuperation time the initiation of biological therapy if that showed to be more advisable. At Karmanos, the oncologist believed that was a very reckless approach to be taking towards a ticking time bomb in my lung and that it should be removed as quickly as possible lest it seed further. The Karmanos doc led me to believe that the U. of M. doc was failing in good professional responsibility in my case (not quoting him just my take). When I mentioned that, based on the first opinion the previous Friday, I had confirmed my reservation to be out of town for five days to swim in the national masters swim championships (last hurrah??), he turned his guns on me and wondered if I had any idea how serious cancer was and whether my life meant anything to me. I will be speaking to the U. of M. doctor today, I hope, and laying this out to him. I want to give him the benefit of the doubt, but I also want to make sure he has some cogent reasons for not rushing me to the operating table. I would rather work with him. I really could not feel comfortable working with Dr. Feelbad from Karmanos, even if he is right. But maybe I should just deep six them both. But that will only put surgery further out. Any thoughts?
FrankJuly 3, 2012 at 1:52 pm #55256
I guess you know my opinion from our conversation, but ideally, I would go to a top place such as Sloan to make your decision. We’ve seen this before on the board where some docs think you should leave the tumor in and go for systemic therapy as they worry about your immune system going through surgery. Others believe leaving the tumor there provides the opportunity for the tumor to seed elsewhere. I tend to follow that belief and also don’t have feel we really have a systemic therapy that will get rid of the tumor as well as surgery might. I hope you come to a decision that is right for you and let us know how you are doing.July 3, 2012 at 2:27 pm #55257AnonymousGuest Hi Frank:
I know what you mean. I bet if you saw a third doc you would get a third slant.
I fall into the same camp as Catherine. If it were me, I’d get it out ASAP while I’m in good health and get on IPI as soon as possible after that. But there may be other things worth considering.
Did either doc mention radiation? Cyberknife can track the tumor while you breath and adjust things accordingly. Being a larger lesion, it would take multiple, ablative doses but it would seem to be much less invasive and damaging to surrounding tissue. Also, I imagine you could start IPI immediatley. In fact, there is (was?) a trial combining both radiation and IPI to see if the antigens given off by dying tumor cells might make IPI more effective. The risks would seem to be it takes, again, time, for the tumor to respond to radiation, if it does indeed respond.
Then there is TIL at the NCI. You may be ideal as you seem very fit, which is an absolute requirement. However, like my wife Rachel, she was excluded only because of her prior breast cancer 11+ years ago. It IS a very rough treatment and can have mortality concerns but can also be very effective. Might be worth checking out.
JeffJuly 3, 2012 at 5:04 pm #55258lizlizParticipant
I would opt for the surgery as soon as possible. You will immediately become NED (no evidence of disease) and that feels mighty good. I had metastic melanoma tumor 2 Cm and had the upper lobe of my lung resected in 2009 and have never looked back. With no further treatment, I am NED today and actually running again. I know everyone is different so you need to make your own decision. You may miss swimming in this masters meet coming up, but you will be able to swim again for sure!July 3, 2012 at 7:04 pm #55259Shirley ZParticipant Hi Frank,
It is frustrating when there is a difference of opinion between doctors. I always felt that if you can safely remove it surgically that is the route I would go, and as quickly as possible.
A 3rd opinion may be the key to you feeling more confident about your decision. I think making the decisions are the hardest part of the entire process with cancer.
Good Luck to you.
Shirley ZJuly 3, 2012 at 7:11 pm #55260
I just wanted to mention that the TIL therapy is restricted to a younger age group as far as I know and it is grueling.July 3, 2012 at 8:29 pm #55261 I have shortened my masters competition by one day and will be back in town Sunday night, thus missing only two business days, when nothing was going to happen anyway. I have a brain MRI scheduled for Monday and hope to have a thoracic surgery consult on Tuesday at the University of Michigan. I will be getting whatever preliminary tests are necessary for surgery and try to keep up pressure to get it done ASAP. No one can push better than oneself I think. Then we will see afterwards, though, not surprisingly, I’m sticking for now with the oncologist at U. of M. with a possible opinion at Sloane-Kettering after recovering enough from the surgery to fly out to Manhattan. Thanks for the advice and support.
FrankJuly 4, 2012 at 10:29 am #55262LynnLucParticipant
I had second and third and forth opinions…I ended up convincing my surgeon at Mayo Clinic to do the thoracotomy…while painful recovery ( slept in a recliner for over 2 weeks) I have been stage 4 NED since. Post op I entered into a vaccine/Anti PD-1 trial and have been NED for over 2 years.July 8, 2012 at 12:05 am #55263bettinParticipant Hi-
I think it’s important to remember that if you go for a second opinion you’ll get just that- an opinion. In a disease where there is no standard treatment plan (YET) it’s especially important to see a Melanoma specialist- they will know about the latest developments and most likely also have the most important trials running.
But even then, with Melanoma, you’ll have much more say in how you want to be treated than if it was a ‘standard’ cancer with an established treatment regime. Some of it is also personal taste- some people try to stay out of hospital at any cost while others get any additional treatment they can find. And as you can’t do controlled experiments within the same patient you’ll most likely never find out what the correct choice would have been….
We found that this forum was a great source of information and there is just no better way than educating yourself and then to discuss your ideas about treatment plans with various doctors- and to then have the opinion that matters most- your own.
All the best-
BettinaJuly 8, 2012 at 2:03 am #55264
Sound like wise words. But how does one define a melanoma specialist. U. of M. and Karmanos both have multidisciplinary melanoma teams. I presume both of the doctors that I had as first consults were just that, melanoma specialists. Or do you think the term should be saved for a sub-set of the breed? And how do you know (I suppose by learning more about things than they know) who is better than whom? In the case of my two melanoma supposed specialists, they certainly had very different ideas about surgery timing and its critical nature? I guess that’s not just a problem with melanoma but with a whole lot of decisions we make in our lives, so why should I be surprised. But I certainly get your point about the nature of melanoma research at this point calling for a lot more individual decision making.
FrankJuly 8, 2012 at 6:12 am #55265
I know it is isn’t easy to find a melanoma specialist, there are very few of them to begin with. But what I do is look at their current clinical trial program. If they are using very old therapies, long proven ineffective, then I know they are not on top of the current research. We find out a lot at ASCO, the annual meeting of the American Society of Clinical Oncology, it is a huge meeting from a global perspective and there it is plain to see who is doing what and where. As I have advised you, I think a third opinion at Sloan Kettering (top research team) will give you the best perspective and make your decision from there. You may be able to do a telephone consultation, even better. Let us know how it goes for you.
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