Told by phone, Invasive Ductile Carcinoma-- little other info

hi April, first thing to do is try to breath. I know exactly how you feel...it is an overwhelming, paralyzing fear and rush of emotions in the beginning. That being said, you were right to get it checked out soon.

Get copies of your pathology and imaging reports, you will need them to educate yourself and really come to understand. They are very important to have because you will not remember things! It will tell you your HER status, hormone status, and may contain some staging info. I got chemo before surgery, it all depends on your type of IDC and hormone status. I just finished chemo and am doing a BMX soon. They may give you chemo after surgery, or some do none at all, while others like me did it presurgery.

Having the reports in hand will aid you in participating fully in your plan. Remember, it is your body! I trust my team but have had points to ask about thanks to my reports.

Yes, I had a surgical consult first, to discuss the first item of business, placing a port for chemo. Your appt. may be for the removal/node discussion and scheduling. Call the surgeons office and ask...never ever be afraid to question.

Others will be along soon with good info so just remember, you are not alone and waiting is the worst part. I recommend staying off google and sticking here for info, use these links. You will have your tx plan soon. Hang in there!

april, one thing about the mammos and ultrasounds...my regular mammos showed nothing either and I too have very dense breasts. My BC was already there for years, before it was found by me as lumps. This may play into your ultimate surgical decisions, so keep it in mind, if you decide to keep the healthy breast, more screening will be required for the rest of your life on that breast.....a good question for your surgeon and onco.

Ultrasounds can tell if something is solid or fluid filled. My mammo showed zip, but my ultrasound was off the charts, it showed everything, cysts and tumors. The techs will never tell you if it is BC, but I could tell from their demeanor they had a good idea!

April...I'm sorry to hear about your diagnosis. Once you have a team of doctors in place, you will begin to feel better. Only when you have an active treatment plan established does the anxiety begin to wane...In the meantime, unless chemo it is recommended before surgery, you will not know your stage until surgery is completed. At that time, the pathology report will reveal what type of cancer you are dealing with. You will know if your tumor is estrogen driven as well as the HER 2 status. Those characteristics will drive the treatment plan. Until then, I would strongly recommend registering at the NCCN website and read the professional version (red logo) of the 2014 breast cancer treatment guidelines.

Regarding mammography, sonograms, MRI and dense breasts....that is an entirely different issue. Sadly there is a misconception that population based screening mammograms should be the gold standard. Once a woman is diagnosed, and becomes enlighten about the mammography controversy, and that is, that population based mammography saves lives, but not as many as once perceived, then one realizes that they must advocate for themselves to get the best type of surveillance for their own body. FYI, my population based mammogram missed my tumor as well as my cousin's due to dense breasts.

So going forward, take a deep breath, rest up and then dig into reading the NCCN guidelines so you will be prepared for your journey. I wish you well.

I just got the same diagnosis, I think--it's in Spanish, and it's Sat. in Mexico. I don't have a doctor to translate for me. I am so upset and feel really alone and lost.

carcinoma mamario tubular infiltrante sin patron especifio ni compenente mucisoco con carcinoma intraductal.

april25,

The beginning is really tough. Your mind does tend to race very far ahead. I know you feel as if you don't have enough info to make plans and decisions, but in a sense, you actually don't. For the most part, all treatment decisions are driven by the pathology report after the tumor is removed. When you meet with your surgeon, the type of surgery, mx or lx, will be discussed. Please make sure you clearly understand why one type of surgery is being recommended over another or, if you have a choice, the pros and cons of each. I am quite adamant about one thing...if the surgeon or anyone you see in connection with bc does not treat you like an intelligent woman and behaves in a patronizing way, run! Find doctors who include you as part of the tx team and understand that you, and you alone make tx decisions . Rant over

As for second opinions, I believe they are always a good idea. I had complete faith in my doctors but some recent family history, pushed me outside the Kaiser system for a second opinion. Less than 6 months prior to my dx, my younger sister had passed away from an aggressive uterine sarcoma. She died almost exactly 4 months from the date of her diagnosis. She was treated at Kaiser SF. As a matter of fact, she was a nurse and an MFT employed by Kaiser. My family is from the east coast and the Kaiser model is totally foreign to them. They felt that my sister might not be getting the best possible care because of Kaiser's "closed shop" system. Anyway, after my diagnosis, my brother offered to pay for me to go to Stanford. I declined at first, but he said it would make my parents feel much better if Stanford agreed with Kaiser's proposed tx plan. So, off to Stanford I went and they completely agreed with Kaiser. Same thing happened a few weeks later when my bone met was found. Anyway, it made everyone feel better and here I am, still leading a very good life in my fourth year of living with bc. Sorry to be so long winded, but even if you get a second opinion from within the Kaiser system, it's worth having a second set of eyes corroborate the situation. Going outside Kaiser is pricey and was only possible for me due to the kindness of my brother.

Try to take it slow and realize that although you may have a lot to learn and some big decisions to make, you don't have to make them all today.

Caryn

april, I am also a Kaiser patient in So. Cal. I had a wonderful surgeon and was very pleased with my MO. My surgeon even came down and held my hand through my biopsies. I had two tumors removed from the same breast, and she did an awesome job cosmetically. I got a second opinion outside of KP due to my unusual pathology. The original KP MO I consulted with didn't agree with my second opinion, and he was extremely dismissive. He didn't even want to hear the opinion of the doctor outside of Kaiser. My second opinion referred me to the KP MO I chose - they had worked together before. If you have any questions I can answer, please feel free to send me a pm.

"if the surgeon or anyone you see in connection with bc does not treat you like an intelligent woman and behaves in a patronizing way, run!"

exbrnxgrl, I couldn't have said that better myself.

Best wishes to you april.

april25 - sorry you are here, but welcome to the forum!

I, too, have Kaiser. From the age of 40, I had mammograms every single year. (Mom had BC.) Every year I would get a cheery little postcard saying "Congratulations! You don't have breast cancer!" or some such idiotic notice.

Because my breasts were huge, heavy, painful, fibrocystic, and drooped to my waist, I BEGGED my then-PCP for an ultrasound or an MRI. Each time he would scold me: "Those tests are not screening tools!"

Fast forward to September 2011, (at the age of 60) when I had spontaneous bleeding from my left nipple. THAT got his attention. Within two weeks I had seven different biopsies and procedures. Fortunately, my Radiologist was the one who took over my care in the beginning. I had seen the Breast Surgeon, and she thought she knew what I had, but wanted further tests.

The Radiologist was suspicious, and was like a pit bull, trying to diagnose or rule out anything she didn't like. All my issues were in the left breast, but because she didn't like the way the right breast looked in mammography, she begged me to get a breast MRI in case I was thinking of getting a UMX (unilateral mastectomy).

I assured her that I had done my research, and my plan was to get a BMX (bilateral mastectomy, with immediate reconstruction in the way of tissue expanders.) It was actually the Radiologist who called me at home with my BC diagnosis, and she took forever with me, making sure I understood everything, and offering to repeat any information I didn't understand.

The Nurse Navigator was absolutely sweet and kind and answered my questions, but truthfully, I gained more from BCO than I did from her. The day of my surgery, in Pre-Op, she, the BS, and the PS were there to comfort and reassure me. As they were wheeling me into the OR, the nurses told me I had the Dream Team working on me. That was nice.

In the grand scheme of things, events are happening fairly quickly for you. The natural reaction to something like this is GET IT OUT OF ME NOW!!! But BC isn't like that... you have time, and the Kaiser system will accommodate you.

All the ladies before me have given you great suggestions. The more information you get, the more in control you will feel. Just stay off Dr. Google. He is a liar and a fearmonger. BreastCancer.org is the only website my MO (Medical Oncologist) would let me visit! She told me that BCO had the most up-to-date and relevant information out there on the Internet. I'm so glad I did.... the support and encouragement have been incredible here.

Wishing you the best!

p.s. I fired that PCP, and found a wonderful new one.

My BS gave me preliminary results over the phone.

She also explained everything very thoroughly at the appointment a few days later.

april25, just wanted to send you a cyber hug since we have very similar screen names. (((april25))) You already got lots of great advice so I will spare you more but please know that you are NEVER alone in this journey when you come here to BCO. Hugs and best to you on this journey no one ever wanted to take!

I was told on the phone that my test came back that I had BC

I was in shock too and didn't understand. I wish I had this caring

line to talk on then, Please take care and know You will a lot of

support and love here. You are in my prayers, Footprintsangel

hi April,

There is a huge learning curve that goes in to this bc business. So, ask lots of questions and absorb what you can, then ask again if needed. Is someone going with you? That's helpful ifpossible, as well as recording the visit. I forgot, are you planning on recon? If so, there's a plastic surgeon's visit in your future.

Yes, we all wonder about whether pain or changes to our body mean "something". This where you get to say things like,"Thankfully, it's just arthritis". At KP Santa Clara, I think all cancer patients are given access to a psych who specializes in cancer patients. I did see him and went on Effexor pretty early on. The social worker was also helpful with questions about leave from work, disability etc. and even medical mj! Take easy and slowly, if you can. Not everything will come together in one visit, but you'll have your feet on the right path.

Caryn

Sorry April25 that you are going thru this. I think talking to an oncologist might be a good idea. Sounds like you have a lot of unanswered questions. I didn't have surgery until a month after initial diagnosis. Don't rush into anything until you understand all your options.

I'm fairly new to all this. I'm sure others with more advice will be along soon.

((Hugs)))