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bad news summary

I have Triple Negative Breast Cancer that Metastasized to the Lymph Nodes as a Cancer with an Unknown Primary.

1st bad news - I have Triple Negative Breast Cancer. 

(aka - "... cancer is not fueled by the hormones estrogen and progesterone, or HER2 protein. Only 10-20% of breast cancers fall in this range.") 


2nd bad news - I have NO Primary Tumor in the Breast 

I had never heard of this and had to go find out what that means. It is called CUP (Carcinoma of Unknown Primary) or Occult Primary Tumor. 

(aka - "Carcinoma of unknown primary (CUP) is a rare disease in which malignant (cancer) cells are found in the body but the place the cancer began is not known." "These cases make up about 2% to 5% of cancers diagnosed in the United States.")


3rd bad news - I went from 2 Axillary Lymph Nodes to "Numerous (10+) Lymph Nodes" in just a few weeks.

(aka - oh (insert a curse word of your choice) - it is spreading fast and aggressive.)


So, bad news review:

I have Triple Negative Breast Cancer that is in my Lymph Nodes only making it a CUP - minimum Stage 3. It is rare and spreading fast. 

I would never have known if I had not had the CT from the car accident and fought against doctor's opinions for me to wait a bit before getting the testing done. It is kind of scary to think how much worse this would be if I had waited 6 months to a year or didn't question things. It is also scary to think how many other women probably have had this, but didn't know until it was too late!

What is Next?

I already met with my breast surgeon and primary doctor. I am getting a port put in place on Tuesday. Even though there is a standard treatment protocol, the breast surgeon is taking my case to be reviewed by the board (35 doctors/oncologist/radiologists/etc.) on Thursday since it is a atypical type of cancer and they are all going to discuss the best treatment options. That is a great thing, but kind of scary thing to be needing! 

I made an appointment with a new Oncologist for Wednesday because mine has done a ton of things I am unhappy with, including making me fight to get the biopsy and the way she handled the results (and honestly, just being rude and dismissive to me as well). 

It is a horrible time to be interviewing Oncologists because time is not on my side right now. I need to start treatment. So, I am most likely going with the next one and if I need to figure it out after I start treatment then I will.

I have been in contact with MD Anderson - to get some type of appointment asap. I will need to start looking for clinical trials too. They said I need to go ahead and start treatment here ASAP and not to wait on them. They are waiting on my medical reports - which my current Oncologist hasn't sent them. So, I contacted my Primary doctor to have him send my medical reports. Another reason why this Oncologist is not right for me.

I am back from my trip and now into fight cancer mode. It is going to be a tough fight, but this cancer has no idea who it decided to mess with!


A Little Blog Inspiration

Superman by REM

Comments

  1. AnonymousOctober 2, 2023 at 8:20 AM

    So glad to hear you are trying to find a new onc. I cannot imagine the frustration and disappointment you’ve been through with the other. I hope to read next that your search was fruitful and you feel like you are in more caring hands. Just wanted you to know that a person in Ottawa, Canada hears you and is rooting for you.

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