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mamadog53
mamadog53 Member Posts: 61
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I have just returned from my first visit with the oncologist.  Had a mammogram in January and called back for an ultrasound, then a core biopsy.  I have a 2.8 cm tumor but other labs have not been done as of today.  I am scheduled for a bone scan, CT and chest xray this week.  I spent all weekend on the internet trying to research treatment options.  This oncologist was referred by my family doctor.  I have a problem with this oncology group and likely won't stay with them.  One of their doctors treated my best friend and she died a year ago this month.  I realize her cancer was different and not caught until it was too late but this doctor didn't even visit her in the hospital her last three weeks of her life.  The doctor I saw today didn't really want to talk about anything until my other tests come back but based on what he knows he is recommending 18 weeks of chemo then surgery.  Needless to say I'm scared to death.  I know other people have gone through this but I feel like my life has been ripped from me.  My husband is due to retire this summer.  We were going on a trip to the coast of Maine which now will have to be cancalled.  I know I want a second opinion and have called for recommendations.  If anyone knows a great breast specialist in Houston I would love to know about him/her.   I can't decide whether to go to MD Anderson (takes a while to get an appt. there) or see someone else.  Sorry for the rambling but I'm still in shock.

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited March 2011

    I completely understand your shock! We have all been there. I am not from Houston so can't help you with doc referrals, but I will say that you have time to decide your treatment plan, including your surgery. You do not have to rush to any decision before you are ready. Two of my surgeons told me to take my time in deciding what to do (I have IDC and my mass was 3.2 cm). They both said waiting a month or two would make no difference in outcome or treatment.

    It is OK to be scared to death! But I wouldn't cancel your vacation just yet. You don't know what your treatment plan will be. I also am not sure why an oncologist would give you a chemo recommendation when all your tests are not back yet! I would def. get a second opinion from another oncologst who comes highly recommended.

    What I am hearing in your note above is that bedside manner is important to you. You should feel comfortable with all your surgeons and feel that they care about you. You will know this during your first meeting with them. Trust your gut! Both my breast surgeon and my plastic surgeon have phenomenal bedside manners and I feel VERY protected in their care for me. However, I chose an oncologist with absolutely NO bedside manner because he came highly recommended as a brilliant onco. He is all business but that is OK because my other docs are warm and fuzzy! PS: My oncologist is waiting for my very last test result (my oncotype score) to come back before he gives me a recommendation for treatment. And I am 5 weeks post-BMX. 

    So hang in there and hopefully someone in the Houston area will give you the name of a great onco that you will love!  ;-)

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  • Sagita
    Sagita Member Posts: 30
    edited March 2011

    I wish i could help. Had my biopsy last month and found that i have BC 2/22/11. I lived around southeast Houston and waiting my referral to MD Anderson. What i did is i asked my obgyne to refer me to MD Anderson. It's one of the top notch Medical Facilities in Houston, i would'nt mind to wait. Already recieved a call less than a week after my referral confirming that they recieved the referral notice. Still waiting their next call to see my new specialist. Hopefully soon.

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  • mdg
    mdg Member Posts: 3,571
    edited March 2011

    I am so sorry you are joining us but so glad you found us.  There are so many wonderful, supportive ladies here that can help you get through this.  I was diagnosed in December and have gotten through lumpectomy, bilateral mastectomy with reconstruction and I started chemo last week.  It has been hard, but this board has given me sanity and support!  I would try to get into MD Anderson...they are so well respected.  I think a second opinion is a great idea.  I did get second opinions on everything and have been to three cancer centers.  I did this because I wanted to find the place I felt most comfortable being treated.  I had my surgeries at one hospital and am doing my reconstruction through that same hospital too.  My chemo is through another hospital because I liked the med onc better and it was closer to my home.  It also offered cold caps onsite so I could keep my hair through chemo.  I wish you the best of luck....HUGS.  If I can support you in any way, private message me. 

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  • patriciaho
    patriciaho Member Posts: 9
    edited March 2011

    Hello Maria

    My dx is similar to yours, but I am grade 3 and I am not sure about my lymph nodes. I dont know what to do now. I have done a lumpectomy a week ago and found out that I had also IDC plus DCIS. I dont know what to do now because I am not sure about the lymph nodes so I am not sure if it is worth to do a immediate reconstruction together with a mastectomy or should I just do another lumpectomy to see the nodes and then see my options. My choice of reconstruction is Latissimus and I know that I cannot do it before radio or even only implants. Does the treatment depends on the lymph nodes? If it is positive lymph, I know I will I have to do radio AND chemo? Is that right? But if there is no lymph nodes affected, will I have to do radio OR chemo OR none?

    Thank you all

    Patricia

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  • mamadog53
    mamadog53 Member Posts: 61
    edited March 2011

    Update since last week.  I had to ditch the first oncologist.  He just wasn't the right one for me.  I couldn't get over the fact that one of the doctors in his practice treated my friend.  Badly, I might add.  The thought of potentially having that doctor treat me was just a stress I didn't need.  I think I also needed a few days to process the whole diagnosis thing.  Further research led me to a new oncologist who is in private practice but is affiliated with MD Anderson as well as other hospitals in the Texas Medical Center.  My first appointment with her is on March 24th.  She comes highly recommended by my gyn and others I have talked to.  I just hope waiting 2 additional weeks is not the difference between life and death.  I have been manic trying to get my house clean and errands done this week.  Tomorrow I leave for a week in Dallas with my husband.  He's going to work and I will visit friends.  We lived there for 28 years prior to moving to Houston and I need to go back and be around people I know and love.  I don't know if I will tell them about my diagnosis or not.  I want this to be a fun week and not put a damper on the visit.  I just need to get my head cleared and get ready to start treatment. 

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited March 2011

    Mamadog53, waiting 2 weeks will *not* make a difference. My surgeon and plastic surgeon both told me this. They both felt it best for me to take the time I needed to decide what was best for *me*. Don't feel you must rush to make a decision that will affect the rest of your life. As for telling/not telling friends, see how you feel once you get to Dallas. You may want to just be the "old" you (aka before BC diagnosis). Or, you might want the loving support of old friends so you can decompress, let go and absorb what is about to be your new "normal." It really depends on where your head is at. I stayed in the "Land of De Nial" for a long time because I was not ready psycologically to face my new reality. Whatever works for you is what works for you! Sending hugs.

    Patriciaho: These are all questions to also ask your surgeon and oncologist. Everyone's cancer is different and treatment is dependent on many individual factors. I have seen women on these boards with my exact diagnosis scores who are having chemo, some having radiation, some just tamoxifen. It is confusing! Gather your questions and take them to your next dr. appt and bring someone with you to help you absorb the info. The choice of lumpectomy vs. mastectomy is very personal & dependent on many factors: your family history, the size of your breasts, the size of your mass or tumor, where it is located in your breast, your tolerance for worry about a recurrence. Everyone is different. Look within and determine what you feel comfortable doing and what treatments you are willing to do/not do. Hope that helps a little!

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  • bebe51
    bebe51 Member Posts: 29
    edited April 2011

    Mommadog,

    Did you find what you were looking for?? I have a few names at MD Anderson that you could call.  I am seeing Dr. Therese Bevers and the breast surgeon I talked with was Dr. Henry Kuerer.  I only had one meeting with him due to the fact that I am still in research mode.  I was dx last yr with ADH with strong family history of BC with BRCA2+.  Saw Dr Bevers on 3/23 for mammo but had to go back because the mammo showed new area of concern.  I maybe meeting with Kuerer (pronounced Cure) sooner than I want and meeting with PS as well.  I hope this helps and not too late.  Hugs, Debbie

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  • mamadog53
    mamadog53 Member Posts: 61
    edited April 2011

    I had an update all typed out and hit the wrong key and it just disappeared.  No time to do it over so this is the short version.

    Pathology was ER+/PR+/HER2-

    Breast surgeon appointment is April 7th

    CT & Bone scan is April 12th

    More later,  Lynn

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  • mamadog53
    mamadog53 Member Posts: 61
    edited April 2011

    Met with the breast surgeon last week.  Lumpectomy scheduled for 4/18.  Unfortunately she found another lump in the opposite breast during the physcial exam.  It is much smaller and is very tender and I don't even know when it cropped up.  At any rate she will biopsy it during the lumpectomy surgery.  Yesterday I had my CT and bone scans.  Only bad part about the CT was drinking that vile liquid.  Yuck!  The bone scan was way worse.  Today my entire body hurts.  The tech seemed more interested in re-scanning my knees and feet.  I wonder if BC ever shows up there?  I've fallen on my knees a couple of times over the years and broke my foot about 20 years ago so I'm sure something must have shown up where it healed over.  Are there any questions I should be asking at this point?   At this point I fear I'm suffering from brain overload and can't even think straight.

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  • mamadog53
    mamadog53 Member Posts: 61
    edited April 2011

    Update - Had my lumpectomy and sentinel node biopsy a little over a week ago.  Surgeon got good margins and the tumor ended up being less than 2 cm instead of the 2.8 originally thought.  Unfortunately the pathology on the node indicated than 1 out of 4 showed a micromet.  I have already met with the radiation oncologist and have an appointment with the medical oncologist next week to discuss treatment.  I am currently dealing with underarm pain and a bizarre rash just below my bra area.  Nothing new has been used, eaten or contact with the area except for the ace bandage I was wrapped in post surgery.  When I had my follow up with the surgeon on Tuesday she just said use a cortisone cream but not on the side of my surgery.  Then she proceeds to wrap me in another ace bandage because she drew fluid off the surgical site.  I was supposed to keep it one for 48 hours but only lasted about 24 due to the intense itching.  I think I may be allergic to the darn thing.  I'm going to give her office a call in a bit to see if there isn't something I can take or use to give some relief.  This itching is almost worst than the surgery itself.

    I would really be interested in hearing information about treatment decisions regarding micromets - chemo or not?  Haven't got my Oncotype score back yet but I'm hoping it will be in by my appointment on Tuesday.

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