Not feeling warm fuzzy after visit with oncologist

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kdhawk
kdhawk Member Posts: 32
edited June 2014 in Stage I Breast Cancer

Sorry for this but I need to vent a little bit.

I had my first visit with my oncologist last week and his recommendation right off the bat is 24 weeks of chemo. I feel in my heart that chemo is not needed but I am waiting on my Oncotype score to help me decide this. He, however, had very little interest in knowing that, as a matter of fact he was concerned that the score would be low and I would opt not to do chemo. His concern is that I had multicentric cancer. What he said that really bothered me was that he would have rather seen a small tumor with node involvement than multiple tumors without node involvement. That made no sense to me and did not set well.

I have felt very at ease with both my breast surgeon and plastic surgeon through this process BUT my oncologist, not so much. I just felt he was dismissing everything that I suggested or felt and his agenda was chemo no matter what.  I am definitely going to seek a 2nd opinion....I need to feel comfortable with who is recommending my treatments and I don't with him. He wants me to do a CT and PET scan for a baseline and I did agree to that but somewhat reluctantly.

Has anyone had a similar experience where you just felt that this Dr. is not the one I need on my team?

Kelly

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  • mdg
    mdg Member Posts: 3,571
    edited December 2010

    I am sorry you have had this experience.  Going through BC is scary enough and you want to be surrounded by people that put you at ease.  I would definatly get a second opinion.  I am going to two national cancer centers now for two opinions.  I don't expect them to tell me much of a different story about my situation, but I do want to find the place I feel most comfortable with and the team of physicians that I feel most confident in.  I have not met with the oncologist yet - so far just surgical onc and plastics.  I am waiting for test results - then I suppose I will meet with oncologist.  Good luck......I hope you find a better physician that puts you more at ease. 

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  • Paula1231
    Paula1231 Member Posts: 456
    edited December 2010

    Kelly,

    Our DX is almost the same.  My tumor was 2.5 cm.  My onc recommended 4 AC dose dense and 4 Taxol dose dense.  I did get all the baseline tests.  While my oncoDx was 28, I opted for chemo, however, my onc said altho my nodes were negative, we had to balance the size of the tumor.  That is why I opted for chemo, the size and the score.

    The dose dense is considered "third generation" treatment.  I sense your uneasieness with your onc, so before things get too far, you may want a second opinion or even to switch oncs.  I did after my first appointment and am very glad I did.  Now I feel I have a partner instead of an adversary.  Good luck and hugs to you.

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  • lago
    lago Member Posts: 17,186
    edited December 2010

    Your onc might be correct in his assessment but if you don't feel comfortable with him you should get a second opinion and seriously think about finding an onc you have better chemistry with. Although I haven't had any real major issues with chemo I still have had to contact my onc with some SE. You want to be sure you are partners with someone who listens to you.

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  • Laurie09
    Laurie09 Member Posts: 313
    edited December 2010

    Your Oncologist may be right, but you have to feel comfortable with the treatment plan moving forward.  Get as many opinions as you need in order to have that Peace of mind.   

    It doesn't do you or your oncologist any good for you to accept the plan on blind faith if you're not comfortable with it, because if there are problems along the way (as there can be even in the best of hands), you won't ever feel good about it.   

    You can get other opinions and still use this oncologist if you choose, or use a different oncologist that you connect with better.    

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  • pamj12
    pamj12 Member Posts: 3
    edited December 2010

    Kelly, I'm starting to wonder if we have the same Oncologist.  My Oncotype score is 18 and the study is not available if there is any benefit at all from chemo.  My Oncologist wanted to schedule me for chemo, although he told me he didn't know if it had any benefit at all.  He also is the same one that told me a score between 1-18 was low(although 18 is right on the the intermediate borderline).  I decided not to have the chemo and go straight to radiation treatment.  Also, I became upset with him when I asked what a medical terminology word meant he said "we're going to have to start all over with this".  I talked with my medical doctor of 25 years about my Oncologist and she said "If I had BC there is no other doctor I would prefer than the one your are seeing".  I also met another BC radiation patient that is seeing the same Oncologist, she also has had an unpleasant experience with the same doctor she talked with the breast surgeon about her concern the surgeon said the Oncologist is one of the best.  I also had the same surgeon and she is truly wonderful.  After I'm done with the radiation treatment I will give him one more try. If, I'm unhappy with him I will find another Oncologist. 

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited December 2010

    I agree, if you aren't comfortable, get a second opinion. 

    However, I'm curious as to why he thinks the multi-centric nature of your cancers is more dangerous than a smaller, node-positive cancer?  My onc has never mentioned that to me, and I actually had three invasive cancers - the largest 3.4 cms and the other two spots were mm's.  I also had a large area of DCIS with invasion into the lobes.  And, with all that, everybody seemed to think that because I was node negative, it was a good sign.  (My surgeon coulnd't believe I'd had all that cancer and was node negative!)

    ust curious if you got an explanation on why your onc thinks that way.  Thanks.

    (By the way, chemo is not as horrible as you are imagining -- if you do need it.)

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  • apple
    apple Member Posts: 7,799
    edited December 2010

    i guess it is important for you to be comfortable with you onc. 

    From what I have read he/she is right.  Tho, having a personal chemistry is very important, he is correct to be concerned with 'multicentric' cancer.  When tumors do not originate from a single source, that is worrisome and perhaps more difficult to arrest since the tumors are each an area of cancer growth.

    Peace to you and do get a second opinion.

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited December 2010

    Maybe I'm confused.  Multicentric, I thought, was different spots of invasive cancer within the breast. They are either sattelite tumors or completely different spots of cancer.

    Multi-focal is cancer that covers more than one quadrent of the breast.  It can be the same tumor but because of it's location, it is harder to do a lumpectomy and get a good result.  Or, it could also be various spots of cancer spread through the breast, as in my case.

    I didn't think the types of cancer (or bad cells in some cases) had anything to do with it.  I could be wrong though - would appreciate other's ideas?  

    Also, I did chemo because I'm HER2+.  There was never a choice for me.

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  • wendy57
    wendy57 Member Posts: 51
    edited December 2010

    Although oftentimes the terms are used interchangeably - there is a difference between multifocal and multicentric Breast Cancer  

      Multifocal breast cancer occurs when there are multiple tumors in your breast that all come from one original tumor. Parts of the original tumor break off and start to grow separately from the original. These tumors tend to be located in the same section of the breast. Multifocal breast cancer tends to be a less invasive cancer because the tumors have not moved into other parts of the body.

      Multicentric breast cancer involves multiple tumors in the breast that do not all come from one original tumor. These tumors have all grown separately from each other. Multicentric breast cancer tumors are found in different sections of the breast. This is a more invasive type of cancer because each tumor represents a new area of cancer growth. In this type of cancer there are multiple sites to be treated in each breast that is affected. Multicentric breast cancer occurs less frequently than multifocal breast cancer.

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  • memory
    memory Member Posts: 106
    edited December 2010

    The first onc I saw behaved in the same fashion. I'd done enough research here (yay, BCO) to know that I wasn't entirely comfortable with what he was saying. For one thing, he dismissed factors like Tumor grade and HER2 status (I'm negative), said they weren't necessary when developing a treatment plan. You may indeed need chemo, but you also need a doctor you feel comfortable with. I really liked the second Onc I met with. I decided she would take good care of me if I needed chemo.  But as it turned out, Oncotype found that I would get zero benefit from it.

    This current Onc has turned out to be a wonderful doctor, too. All her patients love her.

    You'll be seeing your oncologist for a good long while. So don't be afraid to take your time and get a second opinion, or a third.

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  • kdhawk
    kdhawk Member Posts: 32
    edited December 2010

    My surgeon had each cancer tested and they are all the same type and grade of cancer.

     My personal feeling as to why I may have had multiple areas of cancer ranging in size from 2 cm to 2 mm is because I had several bouts of mastitis when I was breast feeding years ago and only on my left side..my right breast never got mastitis and was completely free of cancer. My baseline mammogram 16 years ago showed calcifications which my radiologist said was most likely damage from the mastitis. Now I have cancer only on my left and in multiple areas of my breast...I feel there has to be some connection there. The cancer had not spread to my nodes so again I am thinking maybe the damaged breast tissue was what prompted the cancer in the first place and it was perfectly content right where it was at.

    I could be completely off base but sometimes I think that we know more about what is going on with our bodies than the people that don't know anything about us but what a lab has printed on paper for them to read.

    Kelly

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited December 2010

    Definitely, get a second opinion.  I did and love my oncologist.  He has a way of being able to say things to me that i can take in.  I have complete confidence in him.

    The first oncologist i interviewed was highly recommended and I think the chief of oncology.  She was nice but I couldn't warm up to her and her practice was too busy for me--I knew that if i had side effects it would feel very difficult to call with my concerns.

    Good luck and sorry you had to have this kind of experience.

    Good luck!

    Lizzie 

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  • ScienceGirl
    ScienceGirl Member Posts: 207
    edited January 2011

    kdhawk,

    I am in your same situation. I had a 2cm tumor, node negative, 5 other spots of cancer all very very small.  Initially my onc was leading towards no chem.  Then my oncotype came back as 25 and she recommended TC x 4, from what I understand a pretty 'lite' chemo regime (I don't imply lite on the side effects).  Yesterday I had a second opionon at Memorial Sloan Kettering.  I was shocked by the conversation.  That onc said that the oncotype score was invalid in multifocal disease.  She recommended DOSE DENSE ACx4 and T x 4 (dose dense is every 2 weeks instead of every 3 weeks, so you have to take neulasta).  My head is spinning, when I told my onc's nurse she couldn't believe they wanted to do dose dense for me.  I am only 45, and one thing the MSK doctor said made a lot of sense, "We have one chance right now to cure this disease, after it recurrs we can treat but never cure".  I feel like I have no choice, how as a young person, can you do anything but the most aggresive treatment suggested?  Maybe I'll go for a third opinion...

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited January 2011

    Kelly - this is YOUR medical team.  You are in charge and need to surround yourself with the best people possible and people who will work with you and respect your questions, opinions, and feelings.  I was very picky about who I put on my medical team, and didn't hesitate to remove someone from my team and replace them with another doctor as needed.  This is your life we're talking about - no need to feel uncomfortable with any member of your medical team.

    That said, do you live anywhere near a NCI-designated cancer center?  Many of the large teaching hospitals are so designated, and many of them have dedicated Breast Centers.  I think you would find it well worth the trip to get a second-opinion consult at one of those centers - even if you chose to take your treatment more locally, you will be able to get the advice and opinions from a top medical team.  Most of them will give expedited appointments to newly-diagnosed patients.

    Good luck!

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  • geewhiz
    geewhiz Member Posts: 1,439
    edited January 2011

    I had multi focal multi centric....but had lots of node involvement as well and got the full gamut of treatment.

    HOWEVER....I really suggest you listen to your intuition and find an onc you feel the warm fuzzies with...I changed team members twice..all said the same thing, but its HOW they presented me the information. The third doc walked into the room and within 1 minute, my husband and I were smiling at each other knowing we had found the right person.

    Its your journey, make sure you are walking with people you are comfortable with!!

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  • PinkSurvivor
    PinkSurvivor Member Posts: 63
    edited January 2011

    I went to 2 different oncologist and general surgeons until I felt comfortable, I would not stay with a dr that I didn't feel comfortable with.  Best of luck to you!!

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited January 2011

    Kelly,

    I sort of consider my oncologist my primary doctor since I will be seeing him for a very long time since I have bone mets.  I did all my research and I was thrilled that he was on the same wave length as articles and books I've read on my condition.  He is also very thorough and will run more than 1 test to compare results before treatment.

    You should have a 2nd opinion.  It is very important to find someone you are comfortable with and someone who won't belittle you.  I do agree that you should have a Pet scan.  These let me know where I stand during & before treatment.  I will say that originally, my ultrasound looked like I had 3 tumors about 5cm apart from each other; but MRI & Pet scans showed only 1 tumor plus inflammatory bc. 

    You need to get a 2nd opinion before starting chemo as many docs will not see you in the middle of treatment.  This is what I have heard.

    Terri

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  • CrazyKitties
    CrazyKitties Member Posts: 180
    edited January 2011

    SCIENCE GIRL----I hear BAD things about Sloan Kettering from the horse's mouth! In fact, one of their top doctors actually had the nerve to imply that women may not want to do self-exams on their breasts, because the stress and worry might be too much for us, since most of the time, the lumps are benign! We don't need to worry our pretty little heads off, now do we? I am almost had a stroke when I read that crap. I have been doing self-exams for years, had some bc scares, and that is why I actually caught it before it spread.

    I digress---sorry! Your oncotype score is a huge part of the equation. Do the recommendations that go with that score. Also, you can go to cancermath.net and see for yourself what onco's use.

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