Decisions to be made.

charleigh
charleigh Member Posts: 6
edited March 2014 in Breast Cancer #1
Hi, I'm a new member. I have been reading a few days and decided to jump in. I'm just at the begining of my cancer battle. I have stage 1 cancer ER/PR+ her-, no lymph nodes were positive. I had a lumpectomy. Today I was told that maybe I should consider Chemo and Radiation as a treatment. I thought I was on the road to just radiation so I'm not sure where to turn. I thought some advise might add some light!

Comments

  • lanie940
    lanie940 Member Posts: 490 Member
    #2
    Did you have an Oncotype dx
    Did you have an Oncotype dx test done to see if you really need chemo?
  • charleigh
    charleigh Member Posts: 6
    #3
    lanie940 said:

    Did you have an Oncotype dx
    Did you have an Oncotype dx test done to see if you really need chemo?

    No but the Dr. did mention
    No but the Dr. did mention that as an option. His thought was that it would come back as level 1 or 2. He did say that it Could help with the decision.
  • lanie940
    lanie940 Member Posts: 490 Member
    #4
    charleigh said:

    No but the Dr. did mention
    No but the Dr. did mention that as an option. His thought was that it would come back as level 1 or 2. He did say that it Could help with the decision.

    I'm waiting on my results.I
    I'm waiting on my results.I should find out soon. I see my Oncology surgeon and medical oncologist next tuesday. I also have to have a hernia repair operation and at that time the surgeon will remove a couple of tumors in my left axilla area that my oncology surgeon found in his initial examination of me back before he did the lumpectomy. He doesn't think they are cancer, but wants them out to see what they are. My hernia surgery is scheduled for Oct 8th. At that time he will remove the other lumps.
  • ColoradoGal
    ColoradoGal Member Posts: 14
    #5
    charleigh said:

    No but the Dr. did mention
    No but the Dr. did mention that as an option. His thought was that it would come back as level 1 or 2. He did say that it Could help with the decision.

    dont; let your doctor GUESS at an oncotype score
    Get it...and let's all pray for a low, low score. It's not a level, it;s a score
    LOW is 1-18
    INT is 19-30
    High is 30+

    If you're low, you're most likely golden...in the 90% survivability (10year recurrence) considered low risk, in the middle and well, that requires alot of soul searching and a test to make sure that if you are going skip chemo, that you make sure that your body will at LEAST metabolize Tamaxifin well.
    Any score higher than 30 would have me running to chemo treatment immediately. there is a very high rate of benefit from Chemo in this range. And you could still be early stage, Er/PR+, HER- and still have a high oncotype score...so don't guess at this, get the test.
  • charleigh
    charleigh Member Posts: 6
    #6
    ColoradoGal said:

    dont; let your doctor GUESS at an oncotype score
    Get it...and let's all pray for a low, low score. It's not a level, it;s a score
    LOW is 1-18
    INT is 19-30
    High is 30+

    If you're low, you're most likely golden...in the 90% survivability (10year recurrence) considered low risk, in the middle and well, that requires alot of soul searching and a test to make sure that if you are going skip chemo, that you make sure that your body will at LEAST metabolize Tamaxifin well.
    Any score higher than 30 would have me running to chemo treatment immediately. there is a very high rate of benefit from Chemo in this range. And you could still be early stage, Er/PR+, HER- and still have a high oncotype score...so don't guess at this, get the test.

    Thanks so much for the feed
    Thanks so much for the feed back. This is the first time I heard of this test so I think I will follow up with that before I make any major decisions. Thanks again. I'm glad I decided to join..
  • lanie940
    lanie940 Member Posts: 490 Member
    #7
    charleigh said:

    Thanks so much for the feed
    Thanks so much for the feed back. This is the first time I heard of this test so I think I will follow up with that before I make any major decisions. Thanks again. I'm glad I decided to join..

    It usually take 2 weeks for
    It usually take 2 weeks for the test to come back. Most ins companies cover it, or at least 80% of the cost. It's not cheap, but I wanted to know. They have tissue saved from the tumor they took out. My tumor was only 1.1 cms so the mammoprint was not able to be done. My sentinal node was negative.
  • charleigh
    charleigh Member Posts: 6
    #8
    lanie940 said:

    It usually take 2 weeks for
    It usually take 2 weeks for the test to come back. Most ins companies cover it, or at least 80% of the cost. It's not cheap, but I wanted to know. They have tissue saved from the tumor they took out. My tumor was only 1.1 cms so the mammoprint was not able to be done. My sentinal node was negative.

    Thanks Lanie,
    I appreciate
    Thanks Lanie,
    I appreciate your insight. I'm going to follow up with the Dr. tomorrow and get it moving.
  • Katz77
    Katz77 Member Posts: 598
    #9
    ColoradoGal said:

    dont; let your doctor GUESS at an oncotype score
    Get it...and let's all pray for a low, low score. It's not a level, it;s a score
    LOW is 1-18
    INT is 19-30
    High is 30+

    If you're low, you're most likely golden...in the 90% survivability (10year recurrence) considered low risk, in the middle and well, that requires alot of soul searching and a test to make sure that if you are going skip chemo, that you make sure that your body will at LEAST metabolize Tamaxifin well.
    Any score higher than 30 would have me running to chemo treatment immediately. there is a very high rate of benefit from Chemo in this range. And you could still be early stage, Er/PR+, HER- and still have a high oncotype score...so don't guess at this, get the test.

    oncotype
    I don't mean to sound stupid, but what's " oncotype"? I haven't heard this word yet. I actually work in surgery for the last 18 yr. Know all about ports, mastectomies etc., but now I find myself on the other side of the wall and all is very strange new land. I was told, er pos., common ductal, total node involvement,and level 3. It's aggressive. Does this mean anything to the oncotype?
  • lovelylola
    lovelylola Member Posts: 279
    #10
    lanie940 said:

    Did you have an Oncotype dx
    Did you have an Oncotype dx test done to see if you really need chemo?

    Thanks so much
    for mentioning this test. I'm just now trying to put together questions for my oncology appt next Monday. I check in several times a day and I'm learning alot that will help me with the upcoming decision making. Thanks to all the BC sisters. Lola
  • aurora2009
    aurora2009 Member Posts: 544 Member
    #11
    Katz77 said:

    oncotype
    I don't mean to sound stupid, but what's " oncotype"? I haven't heard this word yet. I actually work in surgery for the last 18 yr. Know all about ports, mastectomies etc., but now I find myself on the other side of the wall and all is very strange new land. I was told, er pos., common ductal, total node involvement,and level 3. It's aggressive. Does this mean anything to the oncotype?

    No KaTz
    This test is performed on the tumor it's self, it's done by only 1 lab in the U.S. and is fairly new (2003 or 2004) Oncologist's really like this test at least that's what my onco said, because it's proving to be be very effective. What it does is anylize 21 different genes inside your tumor ( they test each sample 3 times) and rates or scores your individual reoccurance rate. In the past many women have been over treated with chemo when there was really no benefit from it for them at all.

    If you have a low score like me (10) then most likely you'll go straight to rads unless there is some other reason your onco can give you why not, remember all cases of cancer do vary. But if you have a high score then all onco's will recommend chemo, as that is the best way to lower your reoccurance rate.

    There are still many trials out there for this test as they are trying to define the line or the grey area, which is a score betwen 18 and (I thought)25, but it may be 30 as was stated above. If you score in this range your doctor will do more tests, like those mentioned above and let you make the dicision (while giving you the pro's and con's) on which route to take (as well as their opinion) or what is most beneficial for you.

    For me personally if I had scored in the grey area I would have opted for chemo, no matter what my doctor said, but that's just me. That's why I opted out of the trial, I'm all for helping our future sister's in pink, but not if I feel an unnecessay risk to myself. In the trial the people in the grey range would be split up randomly where half received chemo and the other half didn't, and they would monitor both groups to see which ones had a reoccurance and who didn't.

    My doctor said she had no problem doing the test as long as I would go with whatever treatment she thought was best if I was in the grey, when she confirmed that chemo would be her choice, I said no problem. Many insurances cover the test and some only cover part, I think it's all in how the doctor words the need of it to them. I think what she was afraid of was that many people do not want to do chemo and are looking for a way out, so even after they hear they're in the grey they won't go through with it, so she wanted to make sure I wasn't wasting the test.

    I highly recommend getting the test, it will help you make a more informed decision, for me it was just another tool, in feeling I was getting the right treatment I needed to fight this beast.

    I hope I explained this clearly enough, and that it will help you in some small way.

    Good luck and God bless,
    Aurora
  • lovelylola
    lovelylola Member Posts: 279
    #12
    aurora2009 said:

    No KaTz
    This test is performed on the tumor it's self, it's done by only 1 lab in the U.S. and is fairly new (2003 or 2004) Oncologist's really like this test at least that's what my onco said, because it's proving to be be very effective. What it does is anylize 21 different genes inside your tumor ( they test each sample 3 times) and rates or scores your individual reoccurance rate. In the past many women have been over treated with chemo when there was really no benefit from it for them at all.

    If you have a low score like me (10) then most likely you'll go straight to rads unless there is some other reason your onco can give you why not, remember all cases of cancer do vary. But if you have a high score then all onco's will recommend chemo, as that is the best way to lower your reoccurance rate.

    There are still many trials out there for this test as they are trying to define the line or the grey area, which is a score betwen 18 and (I thought)25, but it may be 30 as was stated above. If you score in this range your doctor will do more tests, like those mentioned above and let you make the dicision (while giving you the pro's and con's) on which route to take (as well as their opinion) or what is most beneficial for you.

    For me personally if I had scored in the grey area I would have opted for chemo, no matter what my doctor said, but that's just me. That's why I opted out of the trial, I'm all for helping our future sister's in pink, but not if I feel an unnecessay risk to myself. In the trial the people in the grey range would be split up randomly where half received chemo and the other half didn't, and they would monitor both groups to see which ones had a reoccurance and who didn't.

    My doctor said she had no problem doing the test as long as I would go with whatever treatment she thought was best if I was in the grey, when she confirmed that chemo would be her choice, I said no problem. Many insurances cover the test and some only cover part, I think it's all in how the doctor words the need of it to them. I think what she was afraid of was that many people do not want to do chemo and are looking for a way out, so even after they hear they're in the grey they won't go through with it, so she wanted to make sure I wasn't wasting the test.

    I highly recommend getting the test, it will help you make a more informed decision, for me it was just another tool, in feeling I was getting the right treatment I needed to fight this beast.

    I hope I explained this clearly enough, and that it will help you in some small way.

    Good luck and God bless,
    Aurora

    Thanks Aurora for the
    Thanks Aurora for the information. I only hope this is possible from Hawaii. I know my oncologist is up on the newer tx, and procedures. Lola
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #13
    lovelylola said:

    Thanks so much
    for mentioning this test. I'm just now trying to put together questions for my oncology appt next Monday. I check in several times a day and I'm learning alot that will help me with the upcoming decision making. Thanks to all the BC sisters. Lola

    Learned something new today
    Thanks .. Sisters in PINK.


    Regards,

    VickiSam

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