ARRGGH- How to wade through several Opinions on treatment? such diverse opinions

pluckey
pluckey Member Posts: 484 Member
edited March 2014 in Colorectal Cancer #1
I posted a few weeks back that my cancer team suggested a chemo break and that I am a candidate for Theraspheres. I met with radiologist and it was a frustrating session and I didn't feel he was able to "sell" me on the efficacy of the treatment, if it was a good next step etc. I was under the impression it is my only available targeted therapy to try at this point.(I have liver mets all over liver)

go to next hospital - they say chemo should be continued, theraspheres not recommended 1)not enough stats that it would "prolong life" and chemo has more evidence of that and 2) my tumors aren't vascular- that people tend to do better on targeted tharapies if there tumors are vascular/lots of blood supply. It is also mentioned that, contrary to my current cancer team (onco, surgon etc) that I AM looking like a candidate for lvier surgery.

As exciting as that sounds - and 2nd hospital emphasizes that surgery is "the cure" to my disease, my current team has yo-yo'd on surgery and it's currently off the table. Add to that, 2nd hospital says that there is an optimum window of time to have surgery, when I'm on chemo break (I JUST re-started chemo this week) due to toxicity etc...

So now what do I do? I need to consult with surgeons at 2nd hospital for detailed opinion etc...do I go back to my original surgeon and share info? Now, does it come down to each surgeon's skill and ability, not just if I am a candidate?

How do you decide?
A friend of my family is urging me to get to Yuman Fong- liver surgeon at Sloan Kettering, said to be the best....well, I was toltally screened out by my call there today.

How the heck are we to make decisions on our treatment when answers are so diverse????

Comments

  • impactzone
    impactzone Member Posts: 555 Member
    #2
    Stage 4 here for 3 years...
    Stage 4 here for 3 years... I go to Stanford and always like dthe most aggressive treamnet as I was healthier now than later.... Talk to a liver surgeon..Keep making an appointment and see what they say... It is tough but you have to go with what feels best for you.
    Chip
  • usakat
    usakat Member Posts: 610 Member
    #3
    Hi Pluckey...
    So sorry about your cancer and sorry about the conundrum you are in. I have never been in your position, so I’ve never had to make such a tough choice like you. I was lucky to be blessed with a cancer team that gave me excellent care and great results, but I can imagine what you must being going through.

    I suppose if I were faced with two completely different recommendations for treatment, I would pursue a third opinion, even if that third opinion is just a consultation to concur or refute one protocol versus the other.

    If seeking a third opinion is not an option, then I would make sure to have each team fully explain what they are recommending, and then list the pros and cons of each. And one step further, listen to my instincts - go with the team that had success with similar cases, the best surgical outcomes, the better hospital, and who were most confident for a cure, or least periods of NED (often patients are being treated more as a patient with a chronic illness, rather than with a terminal disease). I would want my doctors to strive for the best possible outcome, but be realistic of all possibilities. I would think that if my doctor cannot convince me that he/she is confident in the recommended protocol, that it is the best course of action for my particular case, then why should I? I will always hope that if/when I face cancer again, that there will always be HOPE to survive it.

    You might try writing your thoughts down on paper, or on your computer, to see if your own thoughts might move you in one direction or another. Try it for a few sessions - sort of like journaling.

    In any case, many blessings to you for clarity, for working with your best team, and for renew health.
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #4
    Pluckey
    Yuman Fong operated on a friend of ours and he is a phenomenal surgeon. What do you mean that you were "screened out" at MSK? Have you considered doing targeted chemo therapy (HAI treatment) to your liver in order to work towards resection? I know a number of people now that were originally considered inoperable but have since had either a complete liver resection or staged/partial liver resection. If you are interested in this type of treatment you want to consult with Dr. Nancy Kemeny at MSK. I would recommend that if you want to go that route you should google her and call her office number directly as opposed to going through the referral number. Please PM me if you would like further information.

    All the best,
    Amy
  • sfmarie
    sfmarie Member Posts: 602
    #5
    Theraspheres
    According to the interventional radiologist at Stanford, Theraspheres is not a cure. It can lead to liver resection which can then lead to more of a "cure", The reason we were told it is not a cure is that more likely than not, there is microscopic cancer which the Theraspheres will not get. At that point, the cancer will spread. Though the timing is unclear.
    Now, if you were to talk to Suzanne Lindley she would tell you she is still around today because of it. Check out www.beatlivertumors.org.
    I say, go for the liver surgery is there is someone out there that thinks they can do it. That is supposed to be the gold standard. You do need to be off chemo due to the increased chance of bleeding, at least that is my impression.
    There are so many different opinions. You can check out Dr. Lebow at Sloan. He is also a liver surgeon. If you look him up, I'm confident he will e-mail you back. Good luck!
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • pluckey
    pluckey Member Posts: 484 Member
    #7
    mom_2_3 said:

    Pluckey
    Yuman Fong operated on a friend of ours and he is a phenomenal surgeon. What do you mean that you were "screened out" at MSK? Have you considered doing targeted chemo therapy (HAI treatment) to your liver in order to work towards resection? I know a number of people now that were originally considered inoperable but have since had either a complete liver resection or staged/partial liver resection. If you are interested in this type of treatment you want to consult with Dr. Nancy Kemeny at MSK. I would recommend that if you want to go that route you should google her and call her office number directly as opposed to going through the referral number. Please PM me if you would like further information.

    All the best,
    Amy

    Appointment Police- Screening
    by "screening" I meant that when I called the main number to make an appt with Dr. fong for a consultation, they asked some questions, of course. One was "are you currently on chemo?", I told them I just had my 1st treatment after a 2-month break and they just shut me down saying no surgeon will see you until after treatment is finished...

    I tried explaining that there are several questions that need answering before I should be shut down, and they were just emphatic and not even going to allow me the opportunity to have a consultation with him.

    I figured, if I called back, knowing what I know now, I would lie and get in somehow.


    As far as targeted tharapy, my treating cancer team offered Theraspheres, no other treatment - as an option. My current "opinion hell" is that the interventional radiologist didn't seem all that supportive of that option and I am in talks with another cancer center (Northwestern) and they say absolutley not to Theraspheres, but, you MAY be resectable. Thus my call to sloan Kettering fir 3rd opinion, particularly as it relates to possible liver surgery.

    My family friend, whose son was operated on my Yuman Fong, was able to get Yuman to agree to see me. I will call the number Yuman gave and hope it is a "direct" line and not go thru the appt. police.

    Peggy
  • pluckey
    pluckey Member Posts: 484 Member
    #8
    unknown said:

    This comment has been removed by the Moderator

    Kathy - thanks for the information
    thank you so much for the detailed explanation- I want my husband to read this post so he can see what people in the ttrenches of our disease have learned first hand.

    No one has offered RFA as an option for me yet. I am aware of the other treatments, but not on the table for me per my treating cancer team.

    I will go to my 2nd opinion Cancer Center to gleen as much info from them as possible- I need to understand what their suggested treatment plan is, so I can compare that to others. And ****, I am coming to realize that everyone had a different opinion, so how the hell do we make a life or death decision?

    I'm not on avastin or oxcililplatin at this time, though my oncologist said I would be eventually.

    My other source of stress is what my 2nd opinion team said - If you are in fact operable. the window of time is sooner rather than later, so that you are less toxix, liver not compromised from chemo etc..."

    I am back on treatment after a chemo break and deciding, I guess, for now because of all the various Opiniions, not to do Theraspheres, the one targeted treatment orgininally offered, but then taken off the table by my onco. So, of course I don't want to do nothing and have cancer come back, so I am on chemo....but IF I can have surgery, it will be somewhat prolonged, I guess, until less toxic?!!!

    god, I hate this

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