First Meeting done, more questions, how did you decide?

Good Morning, 

We had our first meeting with the oncologist for my Stage IV, mets to omentum. I am healing well from surgery, removing colon mass and omentum mass. I’m not sure what I expected, but honestly if I hadn’t found this forum beforehand, she would’ve been talking a foreign language the entire time. She used a lot of sketched flow charts to tell me what chemo would be used depending on PET scans, and because my CAE was only 1, she seemed like watching for new tumors to appear on PET scan would tell her what move to make next. Plan is for FOLFOX every 3 weeks and Xeloda for 2 weeks, with one week off between cycles. I don’t understand why she’s not adding in Avastin with my Stage IV. We got the feeling it was because there were no tumors to monitor size, but it’s still metastasized! Have any of you had a similar experience? I feel like I want to be aggressive as safely possible. She didn’t really tell me an outlook, just at the end when I asked if there was hope said “there’s hope.” Will I be in treatment forever? It was a rather scary meeting, and I understand medical terminology well and advocating for myself no problem. I asked about supplements, and she said a multi-vitamin could help with recovery from surgery, and that she could schedule me with a nutritionist.  Does the relationship with your oncologist improve after the initial meeting? I am being seen at one of the best centers in the country, she just seemed to follow guidelines and not see ME, a real unique human-but maybe that’s how first meetings go? I had my mind pretty much made up to receive treatment here, because they are so well respected-but I just had hard time feeling cared for by her. Does this come more from the nurses? We still have a second opinion, which she encouraged, on Monday. Maybe putting the two meetings together will help enlighten us even more and not make me feel so lost. 

I know I asked a lot of questions, this has just become a safe place for me to seek answers from a truly wonderful group who has walked a similar journey. Thank you all!

-B.

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Comments

  • JanJan63
    JanJan63 Member Posts: 2,478
    Are you wondering if you

    Are you wondering if you should keep your oncologist or find a new one? If so, I think that if someone who is helping you live should be someone you're totally comfortable with. I didn't like my first oncologist and didnt feel confident in her. She ended up downplaying my blood clots and I had a pulmonary embolism and should not have survived. Everyone in the medical community that I encountered during my almost four months in the hospital after said it was from the chemo I was on. Except her. That really bothered me. And she was very nice but too meek for my liking. I want to feel confident in my oncologist.

    On line she got lots of great reviews, people love her. But I changed to a new one because of my mistrust of her. My new oncologist doesn't get the greatest reviews, just okay. But I really, really like her and feel much safer with her. She tells me things so I can understand without talking over my head or being condescending. Talking to her is like talking to a friend. But I appreciate her abilities as an oncologist. She had my tumour tested to see what chemo would be effective against it which the previous oncologist hadn't done.

    So basically, if you feel you're not suited to each other, ask for someone new. You must feel confident in the person who's going to save your life.

    I would also take a recording device with you when you go so you can go over the appointment again later.

    Good luck,

    Jan

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,272 Member
    Switching oncologists

    I too, made the oncologist switch.  The first one was slightly antagonistic and certainly was not a partner in treatment.  Based upon a nurse's recommendation I switched to another who is entirely human (it turns out he has cancer as well--talk about promoting empathy).  I am very happy I made the switch.  It is your life that is at stake.  I would not worry about hurting anyone's feelings, it is essential that you get the best care available.

    The referral to a nutritionist sounds like a great idea.  It seems that there are many non-chemo strategies to optimize your odds for survival.

     

  • Tunadog
    Tunadog Member Posts: 235
    My Oncologist is great..

    I didn’t choose him, the pain in my butt made the choice.

    He has explained everything is very honest and accessible. He always answers my emails or messages the same day.

    My Oncologist makes me feel like a friend.

    I hope you find one you feel comfortable with.

    P.S. All of my doctors and nurses have been understanding and caring.

  • PamC
    PamC Member Posts: 9
    You will spend a lot of time

    You will spend a lot of time with your oncologist and need to feel comfortable. I'm at MGH and after a few visits of not feeling any connection, I requested a different doctor. Best decision I made. 

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Up the protein to help with healing

    I was advised to up protein to help with healing.  I drank Boost with extra protein.  You can also use creamy peanut butter.

    If you don't feel that your onc is treating you as an individual, then you should shop around for one that sees the uniqueness of you.  Without a very good relationship with your doc you will not be getting all that you can even if the treatment plan is the same, the comfort and belief that you are getting only the best will not be there. 

    Best wishes, Marie who loves kitties


     

  • LearningAsIGo
    LearningAsIGo Member Posts: 27
    JanJan63 said:

    Are you wondering if you

    Are you wondering if you should keep your oncologist or find a new one? If so, I think that if someone who is helping you live should be someone you're totally comfortable with. I didn't like my first oncologist and didnt feel confident in her. She ended up downplaying my blood clots and I had a pulmonary embolism and should not have survived. Everyone in the medical community that I encountered during my almost four months in the hospital after said it was from the chemo I was on. Except her. That really bothered me. And she was very nice but too meek for my liking. I want to feel confident in my oncologist.

    On line she got lots of great reviews, people love her. But I changed to a new one because of my mistrust of her. My new oncologist doesn't get the greatest reviews, just okay. But I really, really like her and feel much safer with her. She tells me things so I can understand without talking over my head or being condescending. Talking to her is like talking to a friend. But I appreciate her abilities as an oncologist. She had my tumour tested to see what chemo would be effective against it which the previous oncologist hadn't done.

    So basically, if you feel you're not suited to each other, ask for someone new. You must feel confident in the person who's going to save your life.

    I would also take a recording device with you when you go so you can go over the appointment again later.

    Good luck,

    Jan

    Jan, this one just felt so

    Jan, this one just felt so “cookie-cutter” and didn’t seem to talk about me during the whole meeting-but rather what chemo she was using. I just expected more in terms of support, asking me if I had questions, etc. I left there feeling more frightened for my life than when I went in. It’s good to hear you made a positive switch and are comfortable with your new oncologist. Thank you for your thoughtful replies, I’ve come to look for your thoughts on here-you have such a solid foundation on which you’re facing this, and I am inspired by you! -B.

  • LearningAsIGo
    LearningAsIGo Member Posts: 27

    Switching oncologists

    I too, made the oncologist switch.  The first one was slightly antagonistic and certainly was not a partner in treatment.  Based upon a nurse's recommendation I switched to another who is entirely human (it turns out he has cancer as well--talk about promoting empathy).  I am very happy I made the switch.  It is your life that is at stake.  I would not worry about hurting anyone's feelings, it is essential that you get the best care available.

    The referral to a nutritionist sounds like a great idea.  It seems that there are many non-chemo strategies to optimize your odds for survival.

     

    Thank you for reminding me it

    Thank you for reminding me it’s my LIFE. It feels rather out of control right now. I think I need an oncologist to be human with me, make me part of the team and help me take back some semblance of guiding my life. I’m also looking into reputable integrative oncologists in the Pacific Northwest, hoping they can work with my chemotherapy but give me a better understanding and guidance about vitamins, supplements, and whole body care. It just doesn’t feel like I’m going to get that from this oncologist, and building a team around me makes sense. As always, thank you for your input-it is truly appreciated. -B.

  • LearningAsIGo
    LearningAsIGo Member Posts: 27
    Avastin or not?

    Thank you all for the encouragement. It feels like I’m on a runaway train right now. I sent a lengthy email to the first oncologist today, with clear questions and am hoping to get a better feel for her, see a different more human side, and have some things clarified for us. I’m empowered knowing some of you switched oncologists. So have any of you received Avastin in conjunction with Xeloda/Oxaliplatin or NOT? What were the reasons?That’s another one of my concerns-why is she treating me like Stage 3, when I am Stage 4?

  • JanJan63
    JanJan63 Member Posts: 2,478
    When I was on oxyliplatin

    When I was on oxyliplatin that was all I was on. I've been on Xeloda but it was over a year later. I've never been offered Anastin. I don't know what it's supposed to do. Sorry.

    Jan

  • abita
    abita Member Posts: 1,135 Member

    Avastin or not?

    Thank you all for the encouragement. It feels like I’m on a runaway train right now. I sent a lengthy email to the first oncologist today, with clear questions and am hoping to get a better feel for her, see a different more human side, and have some things clarified for us. I’m empowered knowing some of you switched oncologists. So have any of you received Avastin in conjunction with Xeloda/Oxaliplatin or NOT? What were the reasons?That’s another one of my concerns-why is she treating me like Stage 3, when I am Stage 4?

    I was diagnosed as stage 4.

    I was diagnosed as stage 4. Colon tumor removed as emergency a couple days after I was diagnosed. I got 4 rounds of folfox before liver surgery, had 2 more after surgery, had reaction to oxaliplatin, finishing the rest of my 12 rounds on folfuri. I never got avastin. I have Leucovirin. I wonder if that does the job of avastin. 

  • abita
    abita Member Posts: 1,135 Member
    btw, Folfox is a trio.

    btw, Folfox is a trio. Oxaliplatin, 5fu, and Leucoverin. My guess, and only a guess, is that Leucovrin and avastin do the same thing. Xeloda is the 5fu in pill form. I get the Oxal and Leucoverin in the infusion suite, then I get a take home chemo device that infuses the 5fu for 46 hours. My cycle is 2 weeks. Folfiri is the same, except I get Irinetican instead of the oxal. Anyway, the 3 work together to attack the cancer. Each in a different way. You should have an oncologist that you feel comfortable with. My oncologist will answer any question I ask. And one time, I had to wait for a chair for over an hour. This was right before my surgery. It gave me too much time to think. I got upset and thought it was about the wait. The nurse called him, and he came and sat with me for 30 minutes, even though he was busy, and helped me understand the wait just gave me time to dwell, and I talked to him about how scared I was about my upcoming liver surgery, and he sat with me talking until I felt better. It was actually something someone said on this forum that terrified me. And he helped me see that that person was wrong. So, yeah, having a doctor you are comfortable with makes all the difference.

     

     

  • abrub
    abrub Member Posts: 2,174 Member

    Avastin or not?

    Thank you all for the encouragement. It feels like I’m on a runaway train right now. I sent a lengthy email to the first oncologist today, with clear questions and am hoping to get a better feel for her, see a different more human side, and have some things clarified for us. I’m empowered knowing some of you switched oncologists. So have any of you received Avastin in conjunction with Xeloda/Oxaliplatin or NOT? What were the reasons?That’s another one of my concerns-why is she treating me like Stage 3, when I am Stage 4?

    I received Avastin

    tho my surgeon told me that if I had been treated now, and not 10 years ago, I wouldn't have received the Avastin.  I don't know why.  My chemo was Folfox plus Avastin.

    I agree with the others - you have to be comfortable with your oncologist.  You need to be able to bring up any and all concerns and know that you are being heard.  See how she responds to your questions and find out.  Mine was good, but I did have to hold him in the room to get him to answer questions.  My surgical oncologist it super (and he's following me now, as my oncologist moved to South Carolina.)

  • Mikenh
    Mikenh Member Posts: 777
    I went with the oncologist

    I went with the oncologist that my GI doctor recommended locally but will be switching to Dana Farber for surveillance - mainly because I won't have to go in very often and he works with my surgeon. I think that the oncologist at my local hospital is overworked (indication is that it's hard to get appointments with him and he was the only oncologist there last year which meant that I had to schedule around his vacations and other time off). He was trained at Dana Farber too.

    I think that fit matters as well.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 707 Member
    abita said:

    btw, Folfox is a trio.

    btw, Folfox is a trio. Oxaliplatin, 5fu, and Leucoverin. My guess, and only a guess, is that Leucovrin and avastin do the same thing. Xeloda is the 5fu in pill form. I get the Oxal and Leucoverin in the infusion suite, then I get a take home chemo device that infuses the 5fu for 46 hours. My cycle is 2 weeks. Folfiri is the same, except I get Irinetican instead of the oxal. Anyway, the 3 work together to attack the cancer. Each in a different way. You should have an oncologist that you feel comfortable with. My oncologist will answer any question I ask. And one time, I had to wait for a chair for over an hour. This was right before my surgery. It gave me too much time to think. I got upset and thought it was about the wait. The nurse called him, and he came and sat with me for 30 minutes, even though he was busy, and helped me understand the wait just gave me time to dwell, and I talked to him about how scared I was about my upcoming liver surgery, and he sat with me talking until I felt better. It was actually something someone said on this forum that terrified me. And he helped me see that that person was wrong. So, yeah, having a doctor you are comfortable with makes all the difference.

     

     

    Avastin is nothing like Leucovorin

    Leucovorin is florinic acid it just helps the drugs work better. Leucovorin is a reduced folic acid.  Leucovorin  is used in combination with other chemotherapy drugs to either enhance effectiveness, or as a "chemoprotectant. Avastin is a drug that cuts the blood supply to tumors. It interferes with the growth and spread of tumors. 

  • Ruthmomto4
    Ruthmomto4 Member Posts: 707 Member
    So far all the oncologists have been different

    the first was a horrible, rude, mean hearted man who called my husband a moron and me a cry baby. It took me 7 years and my husband almost dying to finally get rid of him. He was local and quick, but he missed things and was just awful. The next one was very kind, sweet,  but slow. We only left because the third one set a plan in motion and was willing to give it him but we didn’t feel like having a middle man so to speak. she is very nice a bit mechanical and impossible to get on the phone ever, she also made promises she couldn’t keep. So with that we found a surgeon at Sloan and another oncologist who does his HAI pump chemo. I have not met her but my husband loves her and said she is super chatty and very nice. 

    My point is they are all so incredibly different keep looking until you find one that makes you comfortable because this dr is important and you need to be comfortable and you need to feel they are doing exactly what you need. Good luck it sounds like your instincts  are telling you what you need to do you just need to listen.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    A Second Opinion

    Getting a second opinion is always a good option.  It sounds like you are not very happy with her approach.  Find another doctor.  Didn't like mine and just wish I'd gone that route.  Wishing you the best and let us know how it goes.  Going to the best hospital in the world doesn't make the doctor the best in the world.

    Kim

  • Kazenmax
    Kazenmax Member Posts: 458 Member
    Avastin

    I have had a recurrance of rectal cancer in my lungs. I had lung surgery and the nodules were removed. My surgeon said I was NED. My oncologist recommends folfiri-5 and avastin (bevacizumab). I don't understand this either. I do not have any tumors. If avastin is used to cut off blood supply to the tumor, why would I use it when my tumors are gone? 

    I will be asking my oncologist when I see him next.

    k

  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    Kazenmax said:

    Avastin

    I have had a recurrance of rectal cancer in my lungs. I had lung surgery and the nodules were removed. My surgeon said I was NED. My oncologist recommends folfiri-5 and avastin (bevacizumab). I don't understand this either. I do not have any tumors. If avastin is used to cut off blood supply to the tumor, why would I use it when my tumors are gone? 

    I will be asking my oncologist when I see him next.

    k

    Why Avastin when no visible tumors?

    Avastin blocks the protein that allows tumors to grow their own blood supplies.  So, if your scans show no tumors, that doesn't mean there isn't cancer developing that is still not detectable on scans.  So, the idea is that Avastin could keep those tumors from developing, by nipping the growth of that blood supply before it is a big issue.  On Avastin for 2 years.  After my lung resection in 2009, here I am.

     

    Staqe 4 diagnosis  5/05

    Sigmoid colectomy

    Liver met

    Xeloda/oxy/Avastin for 6 cycles

    NED

    Aggressive monitoring

    Lung recurrence and VATS 4/2009 (Avastin only for 2 years)

     

    Still NED

  • LearningAsIGo
    LearningAsIGo Member Posts: 27

    A Second Opinion

    Getting a second opinion is always a good option.  It sounds like you are not very happy with her approach.  Find another doctor.  Didn't like mine and just wish I'd gone that route.  Wishing you the best and let us know how it goes.  Going to the best hospital in the world doesn't make the doctor the best in the world.

    Kim

    I read this to my husband Kim

    I read this to my husband Kim, and you’re very right-he even said “true!” Best hospital in the world may still have an oncologist that isn’t right for me. I’m trying so hard to stay positive, this feels like a black hole right now! One day at a time and I’m going to try to keep empowering myself through education, the great folks on this forum, and loving my little family. 

    -B.

  • LearningAsIGo
    LearningAsIGo Member Posts: 27

    So far all the oncologists have been different

    the first was a horrible, rude, mean hearted man who called my husband a moron and me a cry baby. It took me 7 years and my husband almost dying to finally get rid of him. He was local and quick, but he missed things and was just awful. The next one was very kind, sweet,  but slow. We only left because the third one set a plan in motion and was willing to give it him but we didn’t feel like having a middle man so to speak. she is very nice a bit mechanical and impossible to get on the phone ever, she also made promises she couldn’t keep. So with that we found a surgeon at Sloan and another oncologist who does his HAI pump chemo. I have not met her but my husband loves her and said she is super chatty and very nice. 

    My point is they are all so incredibly different keep looking until you find one that makes you comfortable because this dr is important and you need to be comfortable and you need to feel they are doing exactly what you need. Good luck it sounds like your instincts  are telling you what you need to do you just need to listen.

    Wow Ruth! I am even more

    Wow Ruth! I am even more motivated to find an oncologist whom I’m comfortable with after reading your story. She did respond via email within 2 hours of a lengthy list of questions I had for her. I appreciated that promptness, it’s just a little scary to not feel “seen” and our very first ever experience in an oncology clinic was with a doctor rattling off all the possible chemo scenarios with a flow chart. Thank you for your reassurance to listen to my intuition-I do think this Dr. is very capable, I just need to feel trust with her.

    -B.