uh-oh Second Opinion on my reoccurance

meena1
meena1 Member Posts: 1,003
edited March 2014 in Breast Cancer #1
Well, i just got back from my second opinion, and he totally disagreed with my oncologist treatment plan, except for the Herceptin. He wants me to stop the chemo treatment i am on immediately. He wants me to have a few tests done that my onc did not order which include an MRI of the brain since this cancer has a high instance of spreading there, an MRI of my spine since i have bone mets there and I have been in pain...he believes that i will need radiation of my spine. He scheduled me a visit for pain management as he does not want me taking percocets and I have been having severe back pain. He also scheduled a Pet scan. He thinks i need to be on a more agressive treatment plan, although he wants to see the results of my tests. He also told me that i had an unnecessary Masectomy!! HELLO, I thought all docs stuck together and just agreed with other docs treatment. Geesh!! I told him my story from when i was diagnosed 2 years ago, and he kept shaking his head. He cannot believe that my onc did not do mri's or more cat scans especially since i had been complaining for months and my back pain is severe and my onc is not doing anything.
So here is the dilemma, do i stick with my onc who is very laid back and "well we'll stay on the treatment until December, you are doing really well" and does not do tests or treat my pain, but i actually feel pretty well with since he seems positive? or do i go to this doctor who is going to zap my body with everything? oh my...i can't even decide on a change of paint in my dining room, let alone this.


P S For those not familiar with my story, i was diagnosed with Inflammatory Breast Cancer 2 years ago, this is a very rare and most aggressive form of breast cancer, i recently was diagnosed with a reoccurance to my liver and spine.
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Comments

  • fauxma
    fauxma Member Posts: 3,577 Member
    Meena,
    Oh gosh, I am not

    Meena,
    Oh gosh, I am not sure what to say. Such a contrast in your two doctors assessment and ultimately you will have to decide which way to go. But I will give you my opinion and it is only my opinion. If this was my original cancer diagnosis I would probably follow your current doctors treatment plan. But it is a recurrance and spread of that cancer and it is an agressive one so I would be more inclined to switch to the doctor that wants to throw everything at it but the kitchen sink (he didn't mention the sink did he?) Also I think having a battery of tests to look at other areas is warranted. And you do want your pain issues addressed and how is doctor #1 determining that you are doing really well without test? I think at this point you don't want to feel that you haven't done everything to keep this at bay. I understand the choosing paint color analogy, I have a terrible time deciding simple things so deciding the big stuff is overwhelming. Whichever you decide, I will be keeping you in my prayers.
    Stef
  • Jean 0609
    Jean 0609 Member Posts: 2,462
    Dear Meena,
    Thanks for the update. However, I am saddened by the outcome. This is truly a very difficult decision that only you will be able to make. I know you feel comfortable with your current doctor and things seem to be okay now. I'm kind of new to all this breast cancer b.s., so I really don't have any answers. It does seem that other tests may be in order due to your pain, but I'm not sure. I'm sure the other wonderful ladies and gents on her will be able to offer more help than me. I just wanted to know that I am thinking about you and sending prayers your way, to help you with your decision. Hugs, Jean
  • m_azingrace
    m_azingrace Member Posts: 399
    Dilema..
    Meena1, for myself I would first want the most tests I could get. I do not see how it's possible to treat the beast unless you know where it is, and what kind of damage it may have already done. If Dr.#2 practiced with MD Anderson, you should know that he is probably one of the best. They don't hire anyone with shoddy credentials.

    It is a difficult decision, and you are right to take your time and weigh all the factors. First things first. Get all the tests you can get. If you want to stay with Dr. #1, then demand he at least do the MRI and PET scan, to find out where you stand, and see if his approach is indeed the best one. If he says you don't need these tests...well, then I would never mind how much I like him. The fact that you sought a second opinion means you are not totally sure his approach is the best one for you.

    My cancer is not inflammatory, however I do have mets to bone. I go to the MD Anderson Cancer Center extension in Albuquerque. Rads sound scarey. I'll have my first one on Thursday. I'm praying that you make the decision that ultimately will be the right one.

    Hugs, Gracie
  • natly15
    natly15 Member Posts: 1,941
    Meena it can get confusing
    Meena it can get confusing but I know you will make the decision that feels right for you.I'm praying for you.
  • meena1
    meena1 Member Posts: 1,003
    fauxma said:

    Meena,
    Oh gosh, I am not

    Meena,
    Oh gosh, I am not sure what to say. Such a contrast in your two doctors assessment and ultimately you will have to decide which way to go. But I will give you my opinion and it is only my opinion. If this was my original cancer diagnosis I would probably follow your current doctors treatment plan. But it is a recurrance and spread of that cancer and it is an agressive one so I would be more inclined to switch to the doctor that wants to throw everything at it but the kitchen sink (he didn't mention the sink did he?) Also I think having a battery of tests to look at other areas is warranted. And you do want your pain issues addressed and how is doctor #1 determining that you are doing really well without test? I think at this point you don't want to feel that you haven't done everything to keep this at bay. I understand the choosing paint color analogy, I have a terrible time deciding simple things so deciding the big stuff is overwhelming. Whichever you decide, I will be keeping you in my prayers.
    Stef

    Yes, it is overwhelming...i
    Yes, it is overwhelming...i am definitely leaning toward the most aggressive treatment since this is a reoccurance. Thank you all for your love an support
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    Meena
    In reading your previous post, you decided to get this second opinion because you weren't totally comfortable with your current doc's "wait and see" perspective.

    I know that you're not looking for anyone to make this decision for you, because it is only yours to make, and I'm sure it must be scary to hear about plans for more aggressive treatment, but I think once you process all of the information you have at hand, you will know what is the best decision for you.

    I will be praying that this is indeed a good night for you, because it is the night you decide how you will do battle going forward.

    Love and Big Hugs,
    Cindy
  • VickiSam
    VickiSam Member Posts: 9,079 Member

    Meena
    In reading your previous post, you decided to get this second opinion because you weren't totally comfortable with your current doc's "wait and see" perspective.

    I know that you're not looking for anyone to make this decision for you, because it is only yours to make, and I'm sure it must be scary to hear about plans for more aggressive treatment, but I think once you process all of the information you have at hand, you will know what is the best decision for you.

    I will be praying that this is indeed a good night for you, because it is the night you decide how you will do battle going forward.

    Love and Big Hugs,
    Cindy

    Meena .. Oh how I wish I could make this all go away
    for you, my dear WARRIOR sister. I am delighted that you sought a 2nd opinion - boggles the mind with all the medical information given to you by both doctors.

    I will continue to keep you and your family in my prayers. I will be there in spirit walking besides you along with the rest of our sassy sisters.

    Cyber Hugs .....you dear soul.

    Vicki Sam
  • Alexis F
    Alexis F Member Posts: 3,598
    natly15 said:

    Meena it can get confusing
    Meena it can get confusing but I know you will make the decision that feels right for you.I'm praying for you.

    This is confusing, and, only
    This is confusing, and, only you can make the decision. If it were me, I wouldn't mess around, I would have every test available and do everything that was out there to kill the beast again. I don't like doctor's that say, well let's wait a couple of months and check you then. NO! I want everything done now. The waiting game can be very dangerous. And, who is it going to affect, you!

    I have a friend with mets to the bone and she is currently having rads and chemo at the same time. It isn't easy, but, it is smarter than burying your head in the sand and regretting it later.

    I pray that you do what is best for you and you only!

    Lex♥
  • lynn1950
    lynn1950 Member Posts: 2,570
    Meena, This is a hard one.
    Meena, This is a hard one. It would have been so reassuring if the 2nd opinion was nearly the same as the first. That they are so different is very difficult. I suspect that the only one right answer is the decision you make. My thoughts and prayers are with you. xoxoxoxox
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    lynn1950 said:

    Meena, This is a hard one.
    Meena, This is a hard one. It would have been so reassuring if the 2nd opinion was nearly the same as the first. That they are so different is very difficult. I suspect that the only one right answer is the decision you make. My thoughts and prayers are with you. xoxoxoxox

    Meena, I am shocked at how
    Meena, I am shocked at how different the opinions are. Ultimately, you know that whatever decision you make will be the right one for you. I wish I could say one way or the other, but this is just too important for you.
    All my prayers and hugs,
    Wanda
  • Alexis F
    Alexis F Member Posts: 3,598
    fauxma said:

    Meena,
    Oh gosh, I am not

    Meena,
    Oh gosh, I am not sure what to say. Such a contrast in your two doctors assessment and ultimately you will have to decide which way to go. But I will give you my opinion and it is only my opinion. If this was my original cancer diagnosis I would probably follow your current doctors treatment plan. But it is a recurrance and spread of that cancer and it is an agressive one so I would be more inclined to switch to the doctor that wants to throw everything at it but the kitchen sink (he didn't mention the sink did he?) Also I think having a battery of tests to look at other areas is warranted. And you do want your pain issues addressed and how is doctor #1 determining that you are doing really well without test? I think at this point you don't want to feel that you haven't done everything to keep this at bay. I understand the choosing paint color analogy, I have a terrible time deciding simple things so deciding the big stuff is overwhelming. Whichever you decide, I will be keeping you in my prayers.
    Stef

    If I may ask, why did he say
    If I may ask, why did he say that you had an unneeded mastectomy? What was his reasoning on that?

    Lex♥
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member

    Meena, I am shocked at how
    Meena, I am shocked at how different the opinions are. Ultimately, you know that whatever decision you make will be the right one for you. I wish I could say one way or the other, but this is just too important for you.
    All my prayers and hugs,
    Wanda

    Oh my!
    I don't envy your position, Meena. I recall that you sought this second opinion because you wanted the opinion of an expert in inflammatory breast cancer and something about the treatment you were getting was not making you comfortable. I know you'll do your research and make an informed decision.
    Best wishes and prayers to help guide you,
    Suzanne
  • meena1
    meena1 Member Posts: 1,003

    Meena, I am shocked at how
    Meena, I am shocked at how different the opinions are. Ultimately, you know that whatever decision you make will be the right one for you. I wish I could say one way or the other, but this is just too important for you.
    All my prayers and hugs,
    Wanda

    Oh, yes...i cannot believe
    Oh, yes...i cannot believe the difference in the treatment! Really, i am not look for anyone elses opinion on what i should do, i was just posting and thinking of what i should do. I have made a decision to go with this new doc, so everyone is in the clear!!!!! just kidding. Again, thank you for being there for me. I love you all.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    meena1 said:

    Oh, yes...i cannot believe
    Oh, yes...i cannot believe the difference in the treatment! Really, i am not look for anyone elses opinion on what i should do, i was just posting and thinking of what i should do. I have made a decision to go with this new doc, so everyone is in the clear!!!!! just kidding. Again, thank you for being there for me. I love you all.

    I think it is hard to stick
    I think it is hard to stick with your same doc after a recurrence. My sister switched after hers. I have not switched, but I was blessed with a rare 22 year remission when my prognosis was not good, so I still have trust. Do what your gut is telling you to do and I am sending lots of paryers and cyber-hugs!
  • cahjah75
    cahjah75 Member Posts: 2,631
    Meena
    my prayers are with you. You are a brave pink warrior! I personally think you made the right decision in going with Dr #2. I had a PET scan yesterday. I think his proactive attitude in having the tests necessary to see exactly what's going on in your body is right on. You deserve to know since it is a recurrence. I pray that you get relief for your back pain. I have lumbar spinal stenosis and know that back pain can be so hard on the mind as well as the body. Sending you {{hugs}} and wishing for the best outcome :-)
    Char
  • Aortus
    Aortus Member Posts: 967
    Throw the kitchen sink at the ()*&#^(^er
    I would agree with Stef - it's one thing to play it more "conservatively" with an original diagnosis. But this being a recurrence I personally would go with the oncologist who was ready to throw the kitchen sink.

    When Moopsy was diagnosed in November 2008, our onc down here wanted to go with 4 AC followed by 4 Taxol+Avastin trial. He was very emphatic that this was the best way. The onc up in St. Louis said that wasn't aggressive enough for TNBC and she prescribed 6 TAC. We went with her "throw the kitchen sink" approach and after three rounds Moops was handling it so well even our onc down here said she "did everything right."

    Regardless of which way you decide, know that you will continue to be in our thoughts and prayers!

    Joe and Moopy too
  • meena1
    meena1 Member Posts: 1,003
    Aortus said:

    Throw the kitchen sink at the ()*&#^(^er
    I would agree with Stef - it's one thing to play it more "conservatively" with an original diagnosis. But this being a recurrence I personally would go with the oncologist who was ready to throw the kitchen sink.

    When Moopsy was diagnosed in November 2008, our onc down here wanted to go with 4 AC followed by 4 Taxol+Avastin trial. He was very emphatic that this was the best way. The onc up in St. Louis said that wasn't aggressive enough for TNBC and she prescribed 6 TAC. We went with her "throw the kitchen sink" approach and after three rounds Moops was handling it so well even our onc down here said she "did everything right."

    Regardless of which way you decide, know that you will continue to be in our thoughts and prayers!

    Joe and Moopy too

    Hahaha...i love the throw in
    Hahaha...i love the throw in the kitchen sink quip cause that is exactly what it feels like!! But doesn't it seem odd that this doctor totally disagreed with the first doctors treatment and wants me to end it immediately. some crazy stuff. And Char, please post as soon as you get your pet scan results
  • sea60
    sea60 Member Posts: 2,613
    Ok Meena, this is just me
    but if I was torn with 2 very different approaches, I would...yes, seek a 3rd opinion.

    Keeping you in thoughts and prayers,

    Sylvia
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    Big Differences and Choices
    Hi, Meena, you must have been taken aback by the dramatically different approaches of the two oncologists. I would be, anyway--it's a lot to take in. Choice is good, but sometimes stressful even for minor things, like toothpaste. You walk into the store and are confronted with dozens of choices, and choices within choices. Used to be, choosing a simple, mundane thing like toothpaste was easy, Crest or Colgate. Now you got miles of aisle space. For toothpaste, for heaven's sake.

    Me, I'd go with the kitchen sink approach, as Joe wrote. Whatever choice you make, the important thing is that you have options and are educating yourself so as to make the best one for yourself. And, whatever your choice, you will have lots of prayers going up for you and positive thoughts sent your way.
  • Hubby
    Hubby Member Posts: 325
    sea60 said:

    Ok Meena, this is just me
    but if I was torn with 2 very different approaches, I would...yes, seek a 3rd opinion.

    Keeping you in thoughts and prayers,

    Sylvia

    3rd Opinion
    I vote for the third opinion also; and then a fourth if necessary. With two such radically different opinions, you must be beside yourself.

    Bob