New development?

Dawn50
Dawn50 Member Posts: 122
in Lung Cancer #1
So husband and I have been asking about testing of the cancer to determine if it's EGFR, etc in the hopes of finding the best treatment, doctor resists each time we ask. Today I was downloading the explanation of benefits from our insurance company and discovered one to a place called NeoGenomics, which we had never heard of and certainly hadn't gone to. In doing some research, I have learned it's a labratory that does genetic testing and DNA marking of cancer! the lab needs a piece of the biopsied materials to do the testing, so, apparently the Oncologist had sent a piece of the biopsied tumor in to this lab for testing on January 31 without telling him he was going to or mentioning any results to him during his February 15 appointment! I am glad the Oncologist may finally be taking additional steps to find the best treatment for him BUT I am upset that he is being so secretive about it!

Recommendations?

Comments

  • z
    z Member Posts: 1,414 Member
    #2
    Dawn
    I would ask the dr directly if they have the results of the biopsy yet. Hopefully, he was waiting for the results, I don't know how long this takes. I wish you and your husband well. Lori
  • Dawn50
    Dawn50 Member Posts: 122
    #3
    z said:

    Dawn
    I would ask the dr directly if they have the results of the biopsy yet. Hopefully, he was waiting for the results, I don't know how long this takes. I wish you and your husband well. Lori

    Hi Lori,

    The Oncologist gave us the results of the biopsy eight months ago (Non operable, 3B non small cell adenocarcinoma of the lung) and we immediately asked about additinal testing to see what mutation the tumor was -- like EGFR, KRAS, RRm1, ERCC1, TS, etc -- the test is suppose to give the doctors additional information to help make treatment decisions. If they know what mutation the tumor has or is they will have a better idea which chemo treatments will have the best effects rather than just throwing everything at you and hoping something works. Each time we have brought this "Response DX" testing up the doctor has been resistant. My husband did 39 raditation treatments and six rounds of chemo six months after the treatments completed they did a PET and found the cancer had spread so he started another chemo drug and will have a total of six more treaments over a 4 1/2 month period. He has had a really rough time with the chemo and is now stage 4.

    I do not understand why the Oncologist wouldn't want to do the additional testing if it would help him choose the best possible treatment for my husband. It makes more sense to me that they do the test and start with the best option rather than fool around making my husband suffer while the cancer continues to spread. It's possible the first choice would have given him the best chance of survival and now that he has had other treatments they may be causing additional mutations that may be making the cancer virulent against any treatment. What made the doctor decide to do the tests after eight months of telling us they weren't necessary?

    And, yes, I realize that it's possible that nothing would have helped my husband but why not give him the best chance??? It's frustrating!
  • z
    z Member Posts: 1,414 Member
    #4
    Dawn50 said:

    Hi Lori,

    The Oncologist gave us the results of the biopsy eight months ago (Non operable, 3B non small cell adenocarcinoma of the lung) and we immediately asked about additinal testing to see what mutation the tumor was -- like EGFR, KRAS, RRm1, ERCC1, TS, etc -- the test is suppose to give the doctors additional information to help make treatment decisions. If they know what mutation the tumor has or is they will have a better idea which chemo treatments will have the best effects rather than just throwing everything at you and hoping something works. Each time we have brought this "Response DX" testing up the doctor has been resistant. My husband did 39 raditation treatments and six rounds of chemo six months after the treatments completed they did a PET and found the cancer had spread so he started another chemo drug and will have a total of six more treaments over a 4 1/2 month period. He has had a really rough time with the chemo and is now stage 4.

    I do not understand why the Oncologist wouldn't want to do the additional testing if it would help him choose the best possible treatment for my husband. It makes more sense to me that they do the test and start with the best option rather than fool around making my husband suffer while the cancer continues to spread. It's possible the first choice would have given him the best chance of survival and now that he has had other treatments they may be causing additional mutations that may be making the cancer virulent against any treatment. What made the doctor decide to do the tests after eight months of telling us they weren't necessary?

    And, yes, I realize that it's possible that nothing would have helped my husband but why not give him the best chance??? It's frustrating!

    Dawn
    Yes, Everything you are saying makes absolute sense, and your right why didn't they do the genetice testing initially. Your dr certainly needs to answer your questions about this. I am so sorry your husband is having such a hard time. I would ask the dr immediatley what the genetic testing results were. I hope you get some answers soon. Lori
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #5
    OncoMan
    First, the doctor is responsible only for providing your husband the results of any tests performed, if hubbie is lucid, unless you have made other arrangements.

    Second, as you and/or someone else pointed out, you are not aware of how long it takes for such results to return.

    Perhaps most important, while you admire OncoMan's seeming efforts on your hub's behalf re the genetic tests, you also find him 'secretive'. If you and/or hub in particular, are unhappy with OncoMan's abilities or manner, it may be time to consider a new one, perhaps one that will confide in you even if not as competent as the current one?

    In a word, if you trust him, stick with him; if you do not, get a new one. Please do not rely on the encouragement of those of us here who are NOT oncologists (including me) to question the judgement of the professional you have previously chosen to save your hub's life or to at least extend it for as long as possible.

    Sounds to me like this OncoMan is doing due diligence and that you are actually happy with his performance. Maybe impatience is an issue?

    Regardless, the simplest thing to do is to ask OncoMan.

    Best wishes to hub and his family and friends.

    Take care,

    Joe
  • ColoradoDani
    ColoradoDani Member Posts: 65
    #6
    soccerfreaks said:

    OncoMan
    First, the doctor is responsible only for providing your husband the results of any tests performed, if hubbie is lucid, unless you have made other arrangements.

    Second, as you and/or someone else pointed out, you are not aware of how long it takes for such results to return.

    Perhaps most important, while you admire OncoMan's seeming efforts on your hub's behalf re the genetic tests, you also find him 'secretive'. If you and/or hub in particular, are unhappy with OncoMan's abilities or manner, it may be time to consider a new one, perhaps one that will confide in you even if not as competent as the current one?

    In a word, if you trust him, stick with him; if you do not, get a new one. Please do not rely on the encouragement of those of us here who are NOT oncologists (including me) to question the judgement of the professional you have previously chosen to save your hub's life or to at least extend it for as long as possible.

    Sounds to me like this OncoMan is doing due diligence and that you are actually happy with his performance. Maybe impatience is an issue?

    Regardless, the simplest thing to do is to ask OncoMan.

    Best wishes to hub and his family and friends.

    Take care,

    Joe

    What little I know...
    I know that it takes a good 4 weeks to get the results. Craig is getting care for at a major research hospital, and it still took that long to get results.

    It depends on the institution where you're getting care about whether or not they do the genetic testing. A few places do it as standard procedure; most seem to look for certain charcteristics that are more likely to yield the mutations, and some are unable to do it-don't have the ability yet. Eventually, it will be standard procedure and the medical literature suggests this trend.
  • Dawn50
    Dawn50 Member Posts: 122
    #7
    soccerfreaks said:

    OncoMan
    First, the doctor is responsible only for providing your husband the results of any tests performed, if hubbie is lucid, unless you have made other arrangements.

    Second, as you and/or someone else pointed out, you are not aware of how long it takes for such results to return.

    Perhaps most important, while you admire OncoMan's seeming efforts on your hub's behalf re the genetic tests, you also find him 'secretive'. If you and/or hub in particular, are unhappy with OncoMan's abilities or manner, it may be time to consider a new one, perhaps one that will confide in you even if not as competent as the current one?

    In a word, if you trust him, stick with him; if you do not, get a new one. Please do not rely on the encouragement of those of us here who are NOT oncologists (including me) to question the judgement of the professional you have previously chosen to save your hub's life or to at least extend it for as long as possible.

    Sounds to me like this OncoMan is doing due diligence and that you are actually happy with his performance. Maybe impatience is an issue?

    Regardless, the simplest thing to do is to ask OncoMan.

    Best wishes to hub and his family and friends.

    Take care,

    Joe

    Thank you
    Thank you for your comment. I do understand that the dr must only answer to my husband since he is the patient and hubby did sign documents to allow the drs to talk to me about his condition, test results, etc. I called the office today and asked if they would mail him a copy of the results since he won't be in for another appointment until his next chemo in about two weeks. The nurse agreed to mail the results to him. This will give adequate time to investigate the results prior to talking to the dr about them.

    I'm not sure about the Oncologist. He suggests things that I have to question ex: hubby had a heart attack at 40 and is on asprin therapy, the dr wanted him to take a chemo which I had read about and it specifically said do not use this on patients who have had heart issues or are on asprin therapy. He tells us that he "thinks" the chemo has made great reductions in the size of the tumors but then the radiologist says minimal shrinkage of tumor and new areas of involvement and now this ie: telling us dna testing doesn't do any good then doing it.

    Hubby likes this guy - I don't. But hubby is a head in the sand sort of guy and I'm more hit it head on type. I read people very well and I don't like people playing games with me or my loved ones and all kinds of alarms are going off that this is what's happening with this guy. It's like my husband is one giant test tube and he's going to experiment on him and just not tell him since husband has already said he doesn't want to be in a test study group.

    I do appreciate everyone's input.
  • positivewife
    positivewife Member Posts: 21
    #8
    Dawn50 said:

    Thank you
    Thank you for your comment. I do understand that the dr must only answer to my husband since he is the patient and hubby did sign documents to allow the drs to talk to me about his condition, test results, etc. I called the office today and asked if they would mail him a copy of the results since he won't be in for another appointment until his next chemo in about two weeks. The nurse agreed to mail the results to him. This will give adequate time to investigate the results prior to talking to the dr about them.

    I'm not sure about the Oncologist. He suggests things that I have to question ex: hubby had a heart attack at 40 and is on asprin therapy, the dr wanted him to take a chemo which I had read about and it specifically said do not use this on patients who have had heart issues or are on asprin therapy. He tells us that he "thinks" the chemo has made great reductions in the size of the tumors but then the radiologist says minimal shrinkage of tumor and new areas of involvement and now this ie: telling us dna testing doesn't do any good then doing it.

    Hubby likes this guy - I don't. But hubby is a head in the sand sort of guy and I'm more hit it head on type. I read people very well and I don't like people playing games with me or my loved ones and all kinds of alarms are going off that this is what's happening with this guy. It's like my husband is one giant test tube and he's going to experiment on him and just not tell him since husband has already said he doesn't want to be in a test study group.

    I do appreciate everyone's input.

    lung cancer
    Hi
    My name is Jan and my husband has stage 3B lung cancer.After reading your questions etc it sounded like you are going through the same things my husband and I went through.My husband saw three doctors at three different hospital before we made a decision on his chemo and radiation doctor.He ended up going to Beautmont hospital in Troy Michigan. Of course it was the one that was the longest drive but was well worth it because they did all the testing we wanted before any treatments were started.If you don't like your doctor and he is not answering your questions etc maybe you should get a second opinon.You can always take all his records and go to another doctor.
    My husband has had 35 radiation treatments and 12 chemo treatments. We just saw on tv that radiation does not help stage3 lung cancer. Needless to say my husband is very up set after what he has gone through.His first CT scan showed his lyump nodes had gone down half. He just got another Ct scan and we get the results on Tuesday.At this time we plan to ask the doctor if he had all that radiation for nothing.
    I saw where you wrote your husbands cancer had spread. May I ask where it spread to? My husbands cancer is in the lyump nodes between the two lungs and of course we are hoping it has not spread.
    I will keep you and your husband in my prayers and would appreciate any input from you.
  • Dawn50
    Dawn50 Member Posts: 122
    #9
    positivewife said:

    lung cancer
    Hi
    My name is Jan and my husband has stage 3B lung cancer.After reading your questions etc it sounded like you are going through the same things my husband and I went through.My husband saw three doctors at three different hospital before we made a decision on his chemo and radiation doctor.He ended up going to Beautmont hospital in Troy Michigan. Of course it was the one that was the longest drive but was well worth it because they did all the testing we wanted before any treatments were started.If you don't like your doctor and he is not answering your questions etc maybe you should get a second opinon.You can always take all his records and go to another doctor.
    My husband has had 35 radiation treatments and 12 chemo treatments. We just saw on tv that radiation does not help stage3 lung cancer. Needless to say my husband is very up set after what he has gone through.His first CT scan showed his lyump nodes had gone down half. He just got another Ct scan and we get the results on Tuesday.At this time we plan to ask the doctor if he had all that radiation for nothing.
    I saw where you wrote your husbands cancer had spread. May I ask where it spread to? My husbands cancer is in the lyump nodes between the two lungs and of course we are hoping it has not spread.
    I will keep you and your husband in my prayers and would appreciate any input from you.

    Positive wife
    Hi Positive wife... my husband's cancer is in the mediastinal lymph nodes between the two lungs. It spread to the carinal lymph and hilar lymph nodes and one spot in the left lung and one spot in the right lung. He did 39 radiation treatments and six rounds of carbo/taxol chemo he is now on Alimta chemo for six rounds. The radiation burned my husband's back and chest so bad it blistered horribly, his esophagus to the point he could barely eat, talk, or drink. There is still active cancer in the area they targeted.

    We did receive the results of the tests and learned that he has a "wild type" EGFR and is negative for ALK too. which the tests state means he has the kind of cancer that has no targeted therapies and a shorter life expectancy. The tests recommend standard chemo for pallative care; which he is getting.

    We have been discussing funeral arrangements so that I can make "smart" choices instead of "emotional" ones. I totally believe he could live for several more years but want every thing ready to go so I don't really have to make decisions during a time that I shouldn't be. I know it kind of sounds like giving up but we aren't! We try to keep a positive attitude and sense of humor about the whole situation because if you don't you'll go crazy.

    I am curious about the item you saw on Fox and will be researching to find it. I have heard that from other sources too especially for some kinds of lung cancers.

    Take care, I will pray for you and yours too.

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