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mommys_girls
mommys_girls Member Posts: 7
edited August 2016 in IDC (Invasive Ductal Carcinoma)

Hi. I was just diagnosed with IDC on 4/5/16 and within 6 days had a bilateral mastectomy. I am low ER positive (20%), PR neg and HER2 neg. My onco test came back a 61 so although I am stage 1, I am a grade 3. My oncologist told me because of my age (I'm 43) and my score, I would be foolish not to do chemo. I started Taxotere and Cytoxan on May 9th and had my 4th and final treatment on July 11th. My oncologist was originally going to have me take Tamoxifan for 5 yrs but changed his mind because I'm such a low ER positive. He now wants me to start Arimidex but since I'm not post menopausal, I would have to have the Lupron shots along with the medication, or have a hysterectomy before I start the medication. I am completely willing to do all of this...I will do anything to be here for my two little girls. But my doctor isn't very optimistic when I'm in his office. I end up leaving in tears most of the time. He reminds me not to focus on my stage only being a 1 because I'm a grade 3 with an extremely aggressive cancer and an onco score of 61. I'm so scared that the cancer will come back somewhere else. He's also told me that if it does, I would most likely be a stage 4. He said that unfortunately it could show up in my bones, lungs, brain, etc. and usually when the symptoms appear, it's too late. He has me absolutely scared to death. I can't even function on a normal day to day without starting to cry in fear of leaving my girls behind. Isn't there anything that can test to see if the cancer came back? Blood tests, MRI, anything? Or is it unfortunately a waiting game? I just would love to talk to someone who has had a similar experience with their onco score and hear how they are progressing after treatment. I am just so scared and I feel completely helpless.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2016

    My oncodx score wasn't that high but I was 95% Er and pr-. I was already post menopausal so went right to arimidex. I would get a second opinion. There is very good chance the cancer never escaped the breast. Did you have any positive nodes? Did surgeon test sentinel node?

    I know plenty of friends grade 3 that never had the cancer come back. I would get a second opinion on the hormone therapy.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited August 2016

    Wow, mommys girls, can you see another oncologist for a second opinion .......maybe one that is not Dr. death? He does not seem very encouraging or have a decent manner talking with you.

    I didn't even leave crying when I was told by my onco I had 50 lung mets because he said, I have a plan"!

    I'm sure many others will join in that have faced your type of cancer with encouragement and how they are doing.

    Yes, grade 3 is nothing to laugh at, but we don't want to give up hope at the Drs office. And we are all hoping that a cure will be found in you young women's' life time.


    Brenda E

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  • dtad
    dtad Member Posts: 2,323
    edited August 2016

    mommysgirls...I'm so sorry you are going through this. Please please please find another MO! No it probably won't change your diagnosis but it might change your prognosis. You need a doc that is realistic but hopeful. No one can predict this crazy disease and there is such a thing as hope. I would want a doc that encourages you to fight hard. You have a lot to fight for. Don't let anyone take away your hope! IMO you should be treated at a university based teaching hospital. Good luck. We are all here for you. PS please take a minute to fill out your stats so we can better understand you.

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  • mommys_girls
    mommys_girls Member Posts: 7
    edited August 2016

    Thank you for the responses. I do have an appointment for a second opinion next week and hope that gives me some clarity. I did fill out my diagnoses and I see it in my profile. I'm not sure why it's not showing up under my post?

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited August 2016

    Hi mommys_girls:

    I didn't have an Oncotype test, but there is a thread called "Long term "high oncotype test" survivors" here:

    https://community.breastcancer.org/forum/85/topics/719253?page=1#post_1024034

    Best,

    BarredOwl

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  • dtad
    dtad Member Posts: 2,323
    edited August 2016

    mommysgirls...did you make your state public?

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  • mommys_girls
    mommys_girls Member Posts: 7
    edited August 2016

    I did change it to public and it looks like it worked. Thank you!

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  • mommys_girls
    mommys_girls Member Posts: 7
    edited August 2016

    Well....I just go a call from my oncologist. He presented my case to the tumor board this morning to see if Arimidex would be the appropriate aftercare for me. The decided that having two more cycles of cytoxan and taxotere would be best for me. I'm so completely confused. My last chemotherapy was on July 11th. I'm now 4 weeks out and they want me to start again. This is all based on the original pathology report as I haven't had any tests since then. Has anyone heard of this? I don't even have time to get a second opinion as they want me to come in this week for treatment. I just don't want to make the wrong decision.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited August 2016

    Mommysgirl,

    First of all whatever you choose to do about restarting chemo, it's your decision and you're making it for you and your family. I truly believe there is no wrong decision when it comes to matters of this nature. I voluntarily submitted to a fifth round of the same chemo rather then quit at four...will I ever know that f this was the right thing...nope.

    Secondly, I'm pretty distressed to hear your experience with that onc. No wonder you're in tears. While he has a difficult job he should be positive and encourage hope, not paint a bleak picture. I hope you switch Oncologists so you feel you have someone excited to help you win this fight.

    Amy

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  • mommys_girls
    mommys_girls Member Posts: 7
    edited August 2016

    Thank you, Amy. He is so smart and I hope that he is guiding me down the right path but it's like talking to Debbie Downer. I understand that he can't tell me if it will come back or not. I just want an oncologist that is a little more compassionate. I've talked to a few others last week who have told me that their onco does an exam before chemo to check their lymph nodes, etc. along with their blood work. Mine has never checked my lymph nodes. He goes over my blood work and sends me down the hall to begin treatment. I'm not sure if that's protocol or not. I'm seriously thinking about finding a new onco but not sure how well that would go over.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited August 2016

    I want to tell you that my Onco does an exam prior to every treatment and reviews my lab. You need a new guy

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2016

    Yup--even though I had only a lumpectomy, radiation and antihormonal therapy (Letrozole), my MO does a full breast-and-pits exam, plus a metabolic panel blood test and listens to my heart & lungs, at every visit. The rule of thumb is that unless there has been a diagnosis of mets, no scans or tumor marker tests are done to pre-screen...unless you report symptoms or the MO (or your Gyn or PCP) notices something amiss. You’re considered cancer-free (more properly, NED or “no evidence of disease”) until you’re not. I agree--the uncertainty, the wait for the dropping of the other shoe that may (one hopes) never drop is frustrating and nerve-wracking. There is no dishonor, BTW, in asking about ways to relieve the anxiety--whether behavioral or pharmaceutical.

    Your MO is correct about the diagnosis, but has no business issuing such a bleak prognosis and is completely irresponsible in that regard. (Perhaps he is better suited to research medicine than to interpersonal medicine. Scientific brilliance often does not coexist with “people skills”). Yes, your tumor is “aggressive” due to the high grade and relatively low ER and negative PR, but that is no guarantee it will progress with proper treatment (and extra chemo cycles are a reasonable part of that for the PR- and HER2- features). One thing to consider might be a blood test to see how well you metabolize Tamoxifen. If you are a poor metabolizer of it, then perhaps ovarian suppression and an AI like Arimidex, Femara or Aromasin might be wise, to take care of those 20% of your tumor cells that stained positive for estrogen receptors. The one-two punch of add’l chemo, plus estrogen deprivation, may do the trick to hold off mets for many years.....and if you do get to stage IV it’s not “terminal:” it’s now called “living with cancer as a chronic illness.” And with the right treatment, that could be a very, very long time.

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  • mommys_girls
    mommys_girls Member Posts: 7
    edited August 2016

    Thank you, ladies. I am sitting here now receiving my 5th treatment. My onco was on his way out the doors when I passed him in the waiting room. I asked several questions and asked why I wasn't meeting with him today and his answer was that he just saw me. That was weeks ago. I didn't even know that he should be examining me before every treatment. They do the blood work but that's it. You would think that the Cleveland Clinic would be better than this. It's so frustrating!!!

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited August 2016

    I'm sorry but I feel this guy just isn't in to you...sounds like a date right? I would expect a much more sincere response even if he doesn't mean it...fake it dude...she's your charge and she's scared to death. Give her some hope and compassion.

    I wish I was more optomistic about his guy but yuk, I'm not...sorry.

    Hang in there, we have you.

    Amy

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited August 2016

    I'm truly SHOCKED that you have had this kind of treatment at Cleveland Clinic! I live in Toledo, Ohio. Myself, my mom and my sister were all diagnosed with BC within 3 years. We go to Univ of Michigan and they give us nothing but HOPE all the time. Certainly, they have to speak the severity of the situation, but hey, you only need to hear it once. From then on you need hope.

    My breast surgeon after leveling all my bad news at me, looked me in the eye and said "We can cure you." I didn't believe her but

    I had those words put on my dining room wall 12 inches high. I look at them every day and I am no almost 5 years out!

    I do not care how good an MO is or how smart they are. If they do not bring HOPE, I would move on.

    I am just so utterly sad for you that you have not been given more hope. Their tumor board at Cleveland Clinic is good, so I would listen to them, but I could not have an MO that always gave me the bad news.

    Sending my best!


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  • mommys_girls
    mommys_girls Member Posts: 7
    edited August 2016

    I know...It's so upsetting to me that I've already had 5 treatments and I never even knew that he should be checking me. This is all so new to me...I don't have any family history, I have only known three people with breast cancer. (Two when I was very young and one is an acquaintance whom I haven't really seen in years). I went in to this thinking that it was nothing and then told I needed a biopsy and then had a doctor call me over the phone and tell me that I had cancer. I have literally been in shock ever since and had no idea who to talk to. I have been googling ever since but I am still so confused by it all.

    My onco said that Tamoxifen isn't the right treatment for me because I'm such a low ER + that they want to treat me like a triple neg. He told me that he feels that Arimidex is the best treatment for me but since I am not post menopausal, I will have to have the Lupron shots. I have an appointment with an ob/gyn tomorrow to see about getting a hysterectomy and just being done with it. I have chronic ovarian cysts anyway and have had them for over 20 yrs. I'm thinking that even though it's a big surgery, it might be better in the long run. I wish that I had a crystal ball. :'(

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