Young and newly diagnosed
Hi new friends! My name is Whitney 28 years old and as of May 18th diagnosed with IDC in my left breast. I am ER/PR + and HER2 -. My genetic testing came back as negative. After my MRI and CT they confirmed that it is no where else other than my left breast and lymph nodes (no clue how many) My surgeon wants me to go through chemo before my mastectomy because the tumor is pretty beefy.
My first oncology appointment is June 20th and I and beyond a mess. I feel like there is so much more I should know and I’m being left out of the loop. I panic called my surgeons nurse today because I wanted to know how large the tumor was. She said that she have very limited info but read me what was given. She let me know that it looks to be 10cm! What!? I really hope she is reading it wrong. I am most nervous about the chemo. As selfish as it sounds, I do not want to lose my hair so I’m trying cold capping. I am also (again selfishly) a very active person so the thought of having to go through chemo for 6+ months has been a panic attack after another. I just want this mastectomy to be over with!
Just thought I would share my story. I appreciate you all being here.
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Whitney I am so very sorry you are finding yourself in this situation. Do you have access to an online portal for your test results? If so, you should be able to access any results from tests you have had so far. If not, you can request copies of the complete reports from either the imaging center or your prescribing physician that ordered the tests. Start there so you have all the information your team has. Knowledge is power to help you sort through how you feel, what questions you want to ask, and where you think you want to go next. Access to your information is your legal right and no one should withhold it from you.
Is your surgeon a breast specialist? These are doctors that only operate on the breast and that specialty is very important. If your tumor is 10 cm ( that is about 4 inches) doesn't mean that the entire mass is IDC, could be mostly DCIS which is a pre cancerous condition. If you are large breasted and the tumor is located in the middle of your breast tissue, surgically obtaining clean margins may not be a problem. If that is indeed the size then a discussion with a medical oncologist is a good idea. Another thing to be aware of is that imaging is not absolutely accurate. MRIs especially can "misread" the size of a mass (happened to me MRI indicated twice as big as final pathology). You simply will not know all the information until the final tumor is removed and if you do preoperative chemo you may never truly know.
These are the hardest days. You know you have a problem, you don't have a firm plan in place, and well things can change around on you until you get final pathology. Try not to google, a lot of information is old and inaccurate. Come here ask your questions, talk to your doctors, and know that we will all walk with you. Bless you
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Thank you so much for your kind words. I’ve definitely been googling too much! My surgeon does not specialize in breast cancer. I did ask and the majority of the surgeries she does are of breast cancer. I will definitely reach out to get all of my results! The mass is toward the bottom side of my breast, I believe quadrant 6 of my left breast and it is, from what I feel, pretty large but when she said 10cm I was taken aback.
I have a gut feeling that I need a second opinion. I don't know if I should I wait until my oncology appointment to see what the doctor recommends.Then reaching out for a second opinion?
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Hi whitneyjprater, We're very sorry you find yourself here. Please also consider joining our Tuesday or Thursday Zoom meetups for people going through chemo/treatment. You're not alone, even at your age.
Register: Tuesdays at 1:00 PM EST and Thursdays at 6:00 PM ESTA second opinion is a very good idea. It would probably be good to set it up now, but have it after you meet with the scheduled medical oncologist. Indeed, chemotherapy before surgery (called neo-adjuvant) is commonly used when the size of the tumor is larger.
We're all here for you!
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Whitney,
Are you sure the nurse didn't say 10 millimeters? Also, based on what you can feel, does your lump feel THAT big?
My lump was pretty big (5 cm +), and I did chemo first. It was actually pretty cool when we could see/feel the lump getting smaller and smaller until it was gone. An MRI and PET scan showed no active cancer, and my surgical pathology report showed that as well.
I never got a second opinion because the treatment plan for HER2+ cancer is pretty standard. However, if you want a second opinion, go for it!
((Hugs))
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Thanks so much for your response!!
I’m hoping she got cm and mm confused but she definitely said 10cm and after that it was just a blur. Since it’s on the bottom part of my breast, the lump I feel is around 2 inches. The original nurse who told me my biopsy results said some showed up as cancer and some wasn’t but couldn’t tell me what the “wasn’t” was. So now I’m questioning if the whole two inch lump I feel is IDC.
I recently moved to a new town right before being diagnosed, so I’m just winging it and taking recommendations from the healthcare provider I’m seeing at the time. It has all been done through the local hospital and they have been nice, but not super helpful. My oncologist is someone my surgeon isn’t as familiar with due to him being so familiar with cold capping. Maybe (hopefully) he will give me clearer information. I don’t know, I could just be in the bargaining stage of grief. 😂
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Hi Whitney:
Sorry you have had to join us. I was 38 when I was diagnosed and my cancer was HER2 positive, which, like elainetherese has pretty standardized treatment as far as chemotherapy and targeted therapy goes but I still had a few different consultations. Originally my doctor (ob/gyn) sent me to a general surgeon who did a lot of breast surgeries, but after some research I decided on treatment at a breast cancer treatment center where the surgeons (breast and plastic) and oncologists (medical and radio) were all "under one roof," specialized specifically in breast cancer, and treatment was integrative. I'm glad I did because my surgery turned out to be very challenging (one plastic surgeon I had previously consulted with wouldn't touch me and another seemed very hesitant) and really required surgeons with very specialized knowledge and skills in breast surgery and reconstruction to avoid complications and get results as good as I did. Also, the center took a lot of stress off of me. Basically they arranged just about everything. I had a nurse navigator but things ran so smoothly and everyone was so responsive that I only needed to communicate with her once or twice.
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