• Second Opinion? Necessary or Hassle?

    Asked by JStrong on Wednesday, January 23, 2013

    Second Opinion? Necessary or Hassle?

    My little brother was diagnosed with NK/T-Cell Lymphoma on 12-12-12. He is 23 years old. He has already gone through 2 radiation treatments and one cycle of chemotherapy. I have been advised by other friends that he should be taken in for a second opinion. I think it would be a good idea and even had an appointment scheduled, however on the day it was scheduled he ended up in the ER due to a nose bleed and blood clots. He ended up having platelet and blood transfusions because of this. I know he is concerned about going due to anxiety about scans and any more bad news. He is very much staying away from any information about his diagnosis and doesn't want to talk about it. I am afraid to ask again about taking him because I don't think he wants to deal with the hassle of going (2 hours away) for another opinion. So basically....is it necessary? This diagnosis is very rare and the doctor skirted around answering whether or not he has EVER even treated it or not. HELP!

    Concerned Big Sis

    12 Answers from the Community

    12 answers
    • Harry's Avatar

      A second opinion is not necessary. However, it can be advisable. It depends. I haven't because I am happy (mostly) with the treatment I have been getting. But others around here have gotten second opinions and have found them very positive.

      The second opinion can offer additional insight into what is happening and may present different treatment options. There may be better ways to treat what he has but he may not realize this without going for a second opinion. As for bad news, well, that would be information that the cancer is worse than initially thought. But, that should be considered "good" news because that means a more appropriate treatment. It's all a matter of perspective. You want the doctors to be treating the right things in the right way.

      If he does get a second opinion, he should go to one of the top research hospitals in the country. They'll have the top experts and access to the very latest in treatment options. Here is a list of the top 100 cancer hospitals in the US. http://health.usnews.com/best-hospitals/rankings/cancer

      At 23 he is an adult. He probably doesn't want "Big Sis" to protect him. This is normal. Also normal is his desire not to hear more bad news. He's had quite a lot of it. Maybe you can suggest he come to WhatNext. He can ask about second opinions and probably hear from quite a lot of people about how helpful they were.

      almost 4 years ago
    • po18guy's Avatar

      Even though I had excisional node and bone marrow biopsies, the pathology lab completely missed the malignancy in both samples. The problem with some T-Cell Lymphomas is that abnormal, but non-malignant cells are often present in the infiltrate. This complicates diagnosis, and, in my case, completely prevented it. On my own, I went to Fred Hutchinson in Seattle for a second opinion. There, considerably more sophisticated testing was done and the malignancy was found. Even then, at a world-class facility, there was some debate about which sub-type it was. It had several characteristics of AngioImmunoblastic T-Cell Lymphoma, but lacking two characteristics in particular, it was finally classified as Peripheral T-Cell Lymphoma - Not Otherwise Specified. In other words, an unknown sub-type of a rare and aggressive lymphoma. Since it runs its course in about six months, and it had taken three to get a diagnosis, I had about 12 weeks left to live at diagnosis. Most T-Cell Lymphomas are so rare that they have no standard treatment. Doctor must rely on the absolute latest in research for guidance in deciding upon a treatment regimen. In each case that I am aware of, it appears that one may fail first treatment and survive as long as the second course is effective. Sadly, I know of four cases in which patients have failed two consecutive courses of treatment. Fevers set in, treatment had to be stopped, and time simply ran out.

      NK/T-Cell lymphoma ( http://www.lymphoma.org/atf/cf/{aaf3b4e5-2c43-404c-afe5-fd903c87b254}/PTCL_11.11.PDF )is very rare in the US, and very aggressive. There is no standard treatment and a clinical trial (if one just happens to be available) is recommended. Any treatment that is decided on must be tailored to its unique characteristics based upon the latest research into NK/T-Cell Lymphoma. T-Cell Lymphomas are unforgiving if doctor guesses wrong at treatment. On another forum, a member recently died after being diagnosed and treated for a B-Cell Lymphoma when she actually had a T-Cell Lymphoma.

      As second opinion on both diagnosis and treatment saved my life and would have saved hers had it been done soon enough. I very highly recommend a second opinion on both diagnosis and treatment, as mistakes are still made. I suggest visiting a world-class academic research facility, since one's chances are best there.

      almost 4 years ago
    • Nancebeth's Avatar

      I saw 3 breast surgeons, 2 plastic surgeons and 2 oncologists before I decided on my life saving medical team. While it is not necessary to have a second opinion, if you don;t feel entirely comfortable with the doctors he has now, by all means get another opinion. Moffitt is very close to you and is one of the premier cancer hospitals in the nation.

      almost 4 years ago
    • nancyjac's Avatar

      Of course it is not necessary. You don't need a second opinion unless there is a need for one. He is already in active treatment and has a lot to deal with. Unless there is a specific reason, getting a second opinion just for the XXX of it is stress he doesn't need and shouldn't be subjected to. You need to support your little brother in these, not take directions from your friends.

      almost 4 years ago
    • po18guy's Avatar

      Sadly, the bottom line is that you cannot save someone else's life if they do not want it saved. Yet, I suspect that if doctor had treated this extremely rare cancer before, s/he likely would have said so plainly. There are many pathology labs that have never seen a case. My T-Cell Lymphoma is more common, and my nurse at Fred Hutchinson had not seen such a case in 15 years of oncology work. Still it is your brother's life to fight for, or to give up.

      If I were in your brother's shoes, and the treatment regimen was not working, I would stop it and seek another ASAP. That is where a second opinion can save a life. A second opinion is the only reason that I am still here.

      almost 4 years ago
    • SueRae1's Avatar

      I got a 2nd opinion through out my cancer journey. It's not that I don't like or trust my oncology teams, it's just that I feel that having a 2nd pair of eyes on my case can only help me find the best course of treatment. The 2nd opinion agreed with my treatment plan, Every doctor has their own take and experience and getting that additional insight can be very helpful

      almost 4 years ago
    • TinaJacques' Avatar

      I did not have a second opinion. If your brother is confident in his diagnosis and his treatment, a second opinion is not necessary. I would follow your brother's lead on this. This is a very stressful time for him already, and I don't think he needs any added pressure by family members, even if it is coming from a good place.

      almost 4 years ago
    • Peroll's Avatar

      Everything said so far is correct, you don't need a second opinion but you may want one. I think what is mission ios some guidance on what criteria you want to use to decide when a second opinion is really in your brother's best interest. To that I would say that the first thing you need to know is how things should go if everything works out to plan per the current Dr. To learn that you need to go to an appointment with your brother and get tghe Dr to layout how he sees treatment going all the way to remission or cure and then get him to tell you what the signs of things going wrong are. When he really needs a second opinion is when things are not going to plan. At that point you want to look for the most experienced Dr with connections to research foor the second opinion.

      I also highly recommrend a second opinion when ever a cancer case becomes way out of the ordinary. In my case I have a great relationship with my oncologist but my case is well past the point where there is any written guidance on how to treat me. I sought a secopnd opinion at the clinic asociated with the Fred Hutichison cancer research center which is near by. What I got was another set of eyes on my case and someone that my Dr can, and has discussed my case with several times (they kenw each other before the second opinion). Sort of like haveing another Oncologist on the team, who also beings more knowledge of the latest research drugs and access to trials if I ever need it. Don't be afraid to aski the current Dr who he would see if he was diagnosed with your brother's cancer, a Dr should never be afraid of patients seeking second opinions. Good Luck!!!

      almost 4 years ago
    • po18guy's Avatar

      I would only re-state that T-Cell Lymphomas are far different from other lymphomas, are considerably more rare, more difficult to diagnose and their prognosis is often far worse than B-Cell Lymphomas. Most have a poor prognosis and drop to very poor if they relapse. And, relapse is common. Many of them are unknown sub-types and most of them have no standard treatment, with "clinical trial" being the first choice. Who here had only the choice of "clinical trial" as primary treatment? And that is "IF" a trial happened to be available, and "IF" their facility offered trials. Many do not. I personally know of four cases in which T-Cell patients failed a first regimen and went on to fail a second regimen. Infection then set in, treatment had to be stopped and all four died within one to three months. As I see it, this is nothing to fool with. There are relatively few hematologists, and far fewer oncologists who have treated a case of NK/T-Cell Lymphoma, let alone seen one. Like the variety that I had, they can kill you in six months - possibly less. I personally know of a woman who died this past year after being wrongly diagnosed with a B-Cell Lymphoma when she actually had a T-Cell variety. It did not respond to B-Cell treatment, fevers set in, treatment was stopped and she died, knowing that a mistake had been made. T-Cell Lymphoma treatment is in its infancy, as compared with the much more common and well-known B-Cell Lymphomas. My first opinion, after both excisional lymph node and bone marrow biopsies, was "no cancer" The second opinion at Fred Hutchinson saved my life.

      over 3 years ago
    • JStrong's Avatar

      I really appreciate all of your responses. Just to respond to a couple of things. The "friends" that informed me to get a second opinion were cancer survivors, so being that I had never dealt with this I am going in blind, as is the rest of the family. My brother is very much the type that he is just doing what anyone tells him to do, he doesn't seem to be ready to make decisions for himself at this point. I am pretty sure he is still in shock about the whole thing and just wants to survive. He is currently getting treatment at MD Anderson Cancer Center in Orlando, FL which according to the link that Harry posted the hospital is one of the best in the country (or at least a connection with). We had a second opinion scheduled with Moffitt in Tampa but had to cancel. My brother's response when asked about continuing with the second opinion is "well...if you guys think it's important I'll do it, but its a pain in the butt!" So as his sister I worry and only want to make sure that the doctors made the right choice and do whatever it takes to save my brothers life. So while I respect my brother's opinion about it being a pain in the butt, I don't want to lose my brother either! I feel more confident about sharing this information with my brother and hope that he chooses to continue JUST IN CASE someone made a mistake. THANKS AGAIN!! :)

      over 3 years ago
    • Harry's Avatar
      Harry (Best Answer!)

      The best cancer hospital in the country, according to US News and World Report, is MD Anderson in Houston. I suppose the MD Anderson in Orlando is connected to the one in Houston, but then again, Hillside Hospital on the east side of Cleveland is connected to the Cleveland Clinic, but it is not the same thing at all (you can ask my mother about that). You want the real deal.

      Given what you describe, I think I would tell him that, yes, it is important and get him to Moffitt. It may be a pain, but it is a worthwhile pain. Given what @po18guy has been saying about T-cell lymphomas, I would want to be certain that he was being seen by an oncologist with T-cell lymphoma experience.

      over 3 years ago
    • grandmafran's Avatar

      I strongly recommend a second opinion to anyone who asks. I have too many stories of missed diagnoses and treatments over the years. It never hurts to get a fresh set of eyes when your life is in the balance. I had a second and third opinion and went with my original oncologist. My dad was diagnosed with lung cancer and after a massive surgery it turned out not to be cancer at all. A good friend was diagnosed with lung cancer and then discovered she had ovarian cancer that had spread to her lung.
      I don't mean to scare you and chances are good that he is in good hands but it is obvious how much you love him so pursue it with him and know that the decision is in his hands. There are great cancer centers that deal with rare cancers on a daily basis. He doesn't need to be treated by someone who doesn't have experience with his cancer. Bless you all and good luck to your family and brother.

      over 3 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy

    Read and answer more extranodal natural killer/t-cell lymphoma, nasal type questions.  Also, don't forget to check out our Extranodal Natural Killer/T-Cell Lymphoma, Nasal Type page.