New Oncologist Scared Me

RysNana
RysNana Member Posts: 4
edited June 2015 in IDC (Invasive Ductal Carcinoma)

Greetings! I have been following this site for a while and have found it so helpful. What a great resource and community of strong survivors!

I recently changed oncologists, mostly due to having to travel too far to see my doctor, but also because she was a little too "aloof" for me, whenever I had a concern her response was always "Don't worry, your cancer is not coming back." I suppose that should have relieved my fears, but I'm a total worrier full of anxiety. I would prefer my doctor display a teensy bit of concern so I don't feel like I'm the one having to do all the worrying. I was diagnosed 4 years ago with IDC and had a mastectomy, no chemo/radiation. I was placed on Arimidex. She did the OnctoType test and my score was 18. My path report read that the tumor was 2.9 cm, it was invasive ductal carcinoma with lobular features and also DCIS. I followed with her for 4 years, the only test she ever ordered was a vitamin D3 level.

I changed to an oncology group closer to my home. First visit, he read my pathology report and stated that I likely should have had chemo and that my chance of recurrence is significant. He said new research shows that the OncoType test is not a good diagnostic tool to predict recurrence. He ordered blood work and a bone scan. Bone scan was clear, blood work showed elevated WBCs and elevated absolute neutrophils, CA 15-3 was normal range but increased from one I had done in December (I requested my primary care order that test because I had lost 18 pounds without dieting and was having pain behind the left implant, the same side the cancer was found). The new oncologist has ordered a PET scan.

Here's my question, has anyone else ever heard that the OncoType test is not a good predictor of recurrence? It's really rattled my nerves that the new oncologist claims this to be true. Did I switch to a doctor who is too aggressive in testing? My CA 15-3 was within normal range, do I really need a PET scan (my co-pay is high). I know I must sound like someone who can't be satisfied; old doctor not aggressive enough, new doctor too aggressive, LOL. ANY input would be greatly appreciated.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2015

    Hi!

    I didn't get Oncotype testing because I'm HER2+. But, my MO is aggressive and is a heavy scanner. I guess I don't mind because my tumor was big and Grade 3, and the cancer could have spread. I've also been lucky so far; BS took out all 20 of my levels 1 and 2 lymph nodes but I've managed to avoid lymphedema. (After chemo, the PET scan and MRI showed my nodes to be clear.) Sometimes, I wish that MO used softer language to describe my situation ("your cancer grew like kudzu in the lab!") but she probably thinks she's just being realistic. Good luck -- are there other MOs in this local group that you could see?

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  • sandilee
    sandilee Member Posts: 1,843
    edited June 2015

    RysNana,

    Your new onc sounds great to me. I wish someone had thought to scan me before symptoms of mets appeared.

    He is being proactive-not aggressive. If you get a Pet and it's clear, you can breath easier and you also have a baseline. I agree that Oncotype isn't everything and they are still doing studies to determine effectiveness, especially in the middle range. Mine also was 18. The thing is, 18 is the mid-range. So it could go either way. If you were a 5, I'd say that says something. So would a 30 tell you something. But 18 is one of those frustrating middle ground scores that you can't put any real confidence in. My onc did not recommend chemo, either, and it may not have helped. This is not an exact science, by any means.

    I know that the Pet is expensive. Would he consider a CT? You had the bone scan, so a CT should show any soft tissue cancers. I think they are less expensive. My onc does the combo of CT and bone scan rather than PET, and since you've already had the bone, it's an idea that might save you some money.

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  • Professor50
    Professor50 Member Posts: 220
    edited June 2015

    I have not heard that the test is not a good predictor of distal recurrence but my MO stated that if my score came back 18 or higher she would recommend chemo. (It didn't). It sounds like you've gone from one extreme to another. I wish you the best with this new MO and I hope all is well....

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  • RysNana
    RysNana Member Posts: 4
    edited June 2015

    Hi Elaine -Yes, there are 7 oncologists in this group but they each have specialties; there are 2 who specialize in breast cancer. My 1st appointment with this group was with the doctor who told me about the Oncotype test & said that I should have had chemo; he then went out on extended medical leave so on my 2nd appointment I saw the oncologist who will follow me until the other doctor returns; he also concurred that my chance of recurrence is significant. To make this even more confusing, I actually did see an oncologist in this group when first diagnosed in late 2010 (he's no longer with the practice), he was adamant that I receive chemo but I was reluctant so a friend referred me to the oncologist I followed with for 4 years. So that makes a total of 3 oncologists from this group who said I should have had chemo; which makes me wonder if this group is just overly aggressive with treatment OR did I make a huge mistake, I guess time will tell.

    Thank you for your response. Your doctor sounds like the aggressive type who stays on top of things which ultimately is a good thing. Best of luck to you, I admire & respect anyone who was brave enough to endure chemo, it terrifies me.

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  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited June 2015

    RysNana,

    What are the characteristics of your tumor, such as ER, PR, HER2 status, and the Ki67?  Did you have lymph node involvement?  The oncs are not just looking at the Oncotype but at all the factors.  An Oncotype score has been tested only in node-negative ER+, PR+ and HER2- patients.  The trials for node-positive patients as well as the patients who are mid-range are continuing.

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  • RysNana
    RysNana Member Posts: 4
    edited June 2015

    Hi YoungTurkNYC -

    My path report states ER was positive, strong, 100%, Allred score (8/8); PR Positive, moderate, 50%, HER-2/neu by IHC was negative, by FISH result was Unamplified -1.4. The Ki-67 was Intermediate, up to 15%. Grade was 2. The Nottingham Histologic score was 6/9. Negative nodes 0/7. I took Arimidex for a few months and couldn't tolerate it, was switched to Tamoxifen and within a couple of months had a heart attack (not related to the Tamoxifen), was then switched to Aromasin and took it for maybe 1 year and stopped because I couldn't tolerate the joint pain, fatigue, and muscle aches. The new oncologist is insisting I restart the Aromasin.

    I don't know what all of the path results mean, if you have insight I would appreciate hearing. Thank you.

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  • RysNana
    RysNana Member Posts: 4
    edited June 2015

    Sandilee- I like that, proactive not aggressive, I hadn't thought of it that way. Thank you! I will definitely ask about a CT rather than a PET, even with insurance everything is so expensive. Best wishes to you on your journey, I will keep positive thoughts for you.

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