on the journey but no sense of direction

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jojo elizapest
jojo elizapest Member Posts: 122
edited March 2014 in Breast Cancer #1
So I was diagnosed on 2/17 stage 4, two lumps in my right breast, lymph node involvement and several plaques on the lining of my right lung that caused a plueral effusion to fill the space between the linings of the lung with fluid. I had two 'taps' each about 2 liters, about a week apart and then started on the four cycles of chemo that my onc prescribed. I have had 3 of those cycles thus far and have had a growing need to know where we are headed next. I am not looking for a timeline (knowing tests after the cycles are complete may mean more chemo) but more of a flow chart...if the lung is clear am I headed right for surgery, masectomy, or radiation first...then move onto the breast issues. When I ask the onc he sighs, reads his monitor and says he will refer to surgeon...on my last visit he asked me what drugs I was getting at chemo, this week he congratulated me on my upcoming 4th cycyle and I reminded him it was just my third. He often refers to another doc located at the cancer center that he consults with. My feeling is he hasn't seem much breast cancer and the other guy is the guru...my guy seems more like a medical student than the one in the drivers seat. One appt. was over and I wondered if we should check the fluid levels in my lungs...he said good idea...I asked if that would be an xray or cat scan..he said xray...I asked if I should get one that day....this is kind of how the appts. go...I am concerned that if I don't know the questions to ask or the nudges to nudge things will get missed. Thinking of switching over to the guru who is at the cancer center even though they are in the same practice...

It just seems to me that there should be some kind of master flow chart or plan that when we accomplish this we will go to that....or maybe they don't think they will get the lungs cleared up? Don't hear as many survivor stories from stage 4 BC...so is that it....

looking for some way to get my hands around this

thanks

Comments

  • dbs1673
    dbs1673 Member Posts: 203
    #2
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    Pilot needed
    The one thing I was most thankful for was that I had/have total faith in my Dr. I had a series of abnormal biopsies but not cancer before I was actually diagnosed. When the real diagnosis came I was relieved I wasn't going to have to go searching for a surgical oncologist. My peace of mind came directly from those whom I put my faith and life into. This is a journey with many twists, over mountains, under water, through swamps, you name it but do ask for a team meeting with the docs as someone needs to be the pilot.
  • Aortus
    Aortus Member Posts: 967
    #3
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    My dear fellow Cheesehead
    Jojo, I respect from the bottom of my heart your relentless joy in life and bravery in dealing with your diagnosis. I am so very sorry that the docs can't get their act together. I've not seen a lot of Stage IV dialogue on this board. But clicking on this link will take you to the Stage IV Forum at breastcancer.org, where the discussion is all Stage IV, all the time. I know the wonderful women there will welcome you as one of their own, and share with you their experiences and their support.

    Best,
    Joe
  • jojo elizapest
    jojo elizapest Member Posts: 122
    #4
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    Aortus said:

    My dear fellow Cheesehead
    Jojo, I respect from the bottom of my heart your relentless joy in life and bravery in dealing with your diagnosis. I am so very sorry that the docs can't get their act together. I've not seen a lot of Stage IV dialogue on this board. But clicking on this link will take you to the Stage IV Forum at breastcancer.org, where the discussion is all Stage IV, all the time. I know the wonderful women there will welcome you as one of their own, and share with you their experiences and their support.

    Best,
    Joe

    followed this link and spent
    followed this link and spent some time reading...now its time to hide some candy, but thanks for listening and responding...
  • jojo elizapest
    jojo elizapest Member Posts: 122
    #5
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    dbs1673 said:

    Pilot needed
    The one thing I was most thankful for was that I had/have total faith in my Dr. I had a series of abnormal biopsies but not cancer before I was actually diagnosed. When the real diagnosis came I was relieved I wasn't going to have to go searching for a surgical oncologist. My peace of mind came directly from those whom I put my faith and life into. This is a journey with many twists, over mountains, under water, through swamps, you name it but do ask for a team meeting with the docs as someone needs to be the pilot.

    amen...thanks for hearing me

    amen...thanks for hearing me
  • Marcia527
    Marcia527 Member Posts: 2,729
    #6
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    If you aren't comfortable
    If you aren't comfortable with your doctor maybe switching is the answer. I had to switch surgeons when I found the first one wasn't experienced. It's up to you and how you feel about it.
  • tasha_111
    tasha_111 Member Posts: 2,072
    #7
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    Marcia527 said:

    If you aren't comfortable
    If you aren't comfortable with your doctor maybe switching is the answer. I had to switch surgeons when I found the first one wasn't experienced. It's up to you and how you feel about it.

    They are not all professionals
    My oncologist (Dr Charisma-bypass) is not good...........MY SURGEON IS GREAT...My doctor is great!.........If you are not happy or comfortable with any one of them...........drop them and move on..........you need to be happy with their qualifications............
  • djteach
    djteach Member Posts: 273
    #8
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    Stage IV
    Hi JoJo,
    I'm Donna and I'm new to the board. I was diagnosed with stage IV b/c with Mets to my vertebra in 2005. In 2006, I had mets to the right lung. I feel that I have to have complete confidence in my doctors. If not, how do I know they are doing the right thing? Changing doctors is a pain but it may be worth it if it puts your mind at ease. I'm excited to find another Stage IV person, I wouldn't wish it on anyone, you know what I mean.

    Gentle Hugs,
    Donna
  • rjjj
    rjjj Member Posts: 1,822 Member
    #9
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    Jo mama
    Hi i know the frustration. My surgeon did a routine colonoscopy and didn't finish it because there was a blockage. He waited until shortly after my fourth chemo treatment and tried it again still no conclusion..so immediately i was taken for a barium enema. horrible beyond words! guess while i was still out of it he told my husband that he felt bad.. should have done an xray first. DUH!!! i had the worst experience, it was worse that core-needle biopsu(sucked) and masectomy!! sometimes i think the DR,'s are so used to following the protocol that we are just a number, maybe they can't become attached in any sort of way...we become looked as a object..a stastistic.. but they can't emotionally look at us as a person..it might be to hard on them.
  • jojo elizapest
    jojo elizapest Member Posts: 122
    #10
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    djteach said:

    Stage IV
    Hi JoJo,
    I'm Donna and I'm new to the board. I was diagnosed with stage IV b/c with Mets to my vertebra in 2005. In 2006, I had mets to the right lung. I feel that I have to have complete confidence in my doctors. If not, how do I know they are doing the right thing? Changing doctors is a pain but it may be worth it if it puts your mind at ease. I'm excited to find another Stage IV person, I wouldn't wish it on anyone, you know what I mean.

    Gentle Hugs,
    Donna

    thanks...
    I'm glad to find you too!
  • jojo elizapest
    jojo elizapest Member Posts: 122
    #11
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    rjjj said:

    Jo mama
    Hi i know the frustration. My surgeon did a routine colonoscopy and didn't finish it because there was a blockage. He waited until shortly after my fourth chemo treatment and tried it again still no conclusion..so immediately i was taken for a barium enema. horrible beyond words! guess while i was still out of it he told my husband that he felt bad.. should have done an xray first. DUH!!! i had the worst experience, it was worse that core-needle biopsu(sucked) and masectomy!! sometimes i think the DR,'s are so used to following the protocol that we are just a number, maybe they can't become attached in any sort of way...we become looked as a object..a stastistic.. but they can't emotionally look at us as a person..it might be to hard on them.

    I've been a program manager
    I've been a program manager for many many years...putting plans together...making things work out...I am feeling very ill equipped to provide leadership here...and want a strong leader to be guiding my journey...at least know me. I did get a laugh from him the other day when he asked if I was having loose bowel movements...I told him it looked much more like shredded sh**. he said he would be looking differently at his office shredder that day...I felt heard.

    Anyway...I am going to look around a bit...need to feel confident that all the bases are covered.

    thanks, jojo
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #12
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    Hello, JoJo
    Breast cancer - all cancer, really - is a very complicated disease, to both diagnose & treat accordingly. Each patient & their individual circumstances are unique. We each must make our own decisions and accept the outcomes. However, that being said...

    If you are not both utterly & completely confident & comfortable with your current oncologist (your post implies to me that you aren't?), I strongly suggest you find another one; or, at least, get a 2nd opinion. Again, based on the info within your post, it seems that the simplest & quickest option would be to ask (demand, if you choose) to see the other onc - the "guru" you describe. YOU, my dear, are the PATIENT. You should NOT feel like you have to "nudge" your doctor! I almost hate to put it this way; but, remember that your doctor is being paid to preserve your life. THAT is their oath of practice.

    Best wishes to you. With hopes & prayers your way...

    Kind regards, Susan

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