Just Diagnosed and So Confused; Feeling Lost

i had 3 nodes taken and one was positive so thats why im concerned about spreading on my report it says invasive ductal so that part scares me

I completely agree. The worst part for me has been the drugs after both lumpectomy and radiation. I tried arimidex, could not do it, the side effects made me miserable. I’m on tamoxifen now which is better, but still having major hot flashes and fatigue. I get worn down so quickly, have you experienced this?? I thought after recovering from surgery and radiation I’d get my energy level back, but it’s not happening. I exercise, am active, but still get tired very easily. Wondering if I’ll ever get back to ‘normal’.

@batm Good morning...yes, I agree completely. I'm still on Arimidex. Here's hoping that some day, these medications will be improved so we don't have to spend 5 years feeling 50 years older than we actually are!

Please follow your instincts and get a second opinion. Because you had a positive node that ups the ante a little. You can still always decide to go with your doctor, but I would definitely get an out of network second. You don’t want to look back and wished you had. It isn’t like you are bound to a certain opinion, and it your future health.

Oh geez just got all set for radiation treatment got it all set up went and got ct scan only to be called today to be told everything is on hold because the dr saw fluid inside my under arm and a problem with another lymp node one step forward two steps back oh well lets see whats what now has anyone else ever had this happen

Thank you for sharing your story as we can all learn from one another. I know you’ll be okay but we’ll keep you in our prayers.

I’m triple positive with invasive lobular carcinoma. I just had 8 rounds of chemo before my lumpectomy and will also have radiation. I’ll take the estrogen blockers for 5-10 years. I’ve learned to take it a step at a time and not look too far ahead. Baby steps.

Oh geez is right! Sometimes you just need to let that out! It is hard knowing you are sick and not know how to fix it. It is frustrating with the hurry and wait syndrome that occurs in every aspect of our lives, but when we feel like our lives are threatened, that waiting can be excruciating. I do not know your circumstances, but if you are in a position to go to May Clinic, I have had polar opposite experiences with cancer treatments.
My personal experience was similar to yours, waiting 4 to 6 weeks for appointments then changing plans, not enough information to prevent frustration from building, and my personal worst....... having my questions and concerns dismissed out of hand.
My husband had a consultation the Mayo Clinic. Our itinerary was waiting for us when we checked in and all tests and specialty appointments were in two neighboring buildings over 3 days, with breaks created for lunch and resting. The morning of our appointment with his doctor, she had already reviewed all of his tests and spent an hour or more answering all of our questions and with us, formulated a plan for treatment. We went home and he received a couple months of oral chemo before we returned to the Clinic for his stem cell transplant. Our local oncologist works with Mayo Clinic for his treatments, and the best thing yet for this otherworldly care......... our insurance loves them, they charge less than most because of the model of care.
This is why I am a Mayo Champion even though I live 2,000 miles from Rochester.
I am just adding you to my prayers now. Your life will be forever changed but in many ways my life is better for having cancer. I have grown a sense of humor, and I truly care about each day and who it brings into my life.

Can someone please tell me if I'm over reacting or not as I sit here still waiting on the second biopsy on another lymph node that the Dr. found when they did the ct scan for radiation and now everything is on hold I understand that there are a lot of people going through so much worse than I am but everyday that go's by without a call for the appt to have this test done makes me feel like I'm not important the Dr. today me I could wait up to three months for treatment but my cancer is invasive so in my head that's not something that can wait I haven't cried once since I found out in April but I'm starting to get really mad and I really don't know how to handle being put on the back burner because that's what I feel sorry to whine I know that all of you are having problems and I pray for ya'll everyday thank you for reading.

@kathysway
Every network is different... but, I've learned that, when I'm proactive, it helps relieve my stress. If I was in your shoes, I would call the local hospital's appointment scheduler and ask if there was a biopsy order on file from my doctor. If s/he says no, then I would ask the scheduler if s/he kindly would call my doctor's office and request the order. (Give the scheduler the idea that the paperwork may be unintentionally delayed somehow.) Hearing from the hospital often gets the paperwork jam rolling at the doctor's office. It's worth a shot (there are no downsides to nudging the hospital's appmt. scheduler on your behalf). Also, if your hospital has a breast cancer navigator nurse, she would be another resource I might use.

You're not whining, @kathysway. The only person that matters right now in your world is YOU. You are important. Now, I don't know all the details of your situation and so I can't give you the answers you need. But I can tell you a bit about how the urgency we feel doesn't often line up with the lack of urgency we may feel the medical professionals have.

i'm sure it must be frustrating that your radiation and everything else is on hold with the discovery of something from the CT scan. (Bring on the anxiety, right?) But your team has to wait for the biospy to be extra super sure that the original diagnosis and treatment plan are still the right ones for YOU. The wait is tortuous, but I know you want to get the most effective treatment. So this may be a case of slowing down to get it right.

Invasive cancer means that the cells have grown beyond the ducts or lobes into normal, healthy tissues. Most breast cancers are invasive. That sounds scary too. But invasive doesn't mean Zombie apocalypse, run now and fast. It is a description that tells your cancer team what type of cells they're dealing with and gives them information to get the treatment plan right. While you want treatment right away, you also want the right treatment. I know you just want to get a move on and zap those cancer critters or poison them or whatever it takes, and you will.

Having said that, the squeaky wheel gets the grease. Be patient but you can also follow up to get the appointment scheduled. I hope that helps.

PS: Whining is permitted. But that was not whining.