Skip to main content

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.

    ReplyDelete

Post a Comment

Popular posts from this blog

More biopsies... where? down there?

Cancer survivors are always wondering and waiting to see if something is going to happen, so it is only natural to worry when something is "off". Then when something turns out to be abnormal more testing and follow-ups are needed. It seems like a continual wave of worries. Sometimes our worries turn out to be issues. Sometimes our worries turn out to be nothing. Either way, we are going to worry... it's just an issue of determining how much and when we should really worry. Finding out my endometrium lining was so thick meant I needed to get a biopsy. What's an Endometrial Biopsy? An endometrial biopsy is a medical procedure in which a small piece of tissue from the lining of the uterus (the endometrium) is removed for examination under a microscope. The removed tissue is examined for cancer or any other cell abnormalities.  Lucky me. Right?  Now I get to go back the GYN only a few days after my initial exa
1 comment
Read more

PINKTOBER

I love fall, it is my favorite time of the year. Instead of fall colors, I am surrounded by pink. Everywhere I look I see breast cancer paraphernalia being marketed and displayed. Companies look charitable. Social media is ablaze. The world is turning pink. I live pink. It is not just a Pinktober thing. Breast cancer has infiltrated my life, it is here year round. Pinktober is a double-sided sword for me. On one side I am grateful to whatever it takes to get people motivated, involved, concerned, donating, caring, or active in the cancer community. Then there is the other side, the part that makes almost all breast cancer survivors cringe… the blatant misrepresentation and misuse of all things Pinktober. Ironically, the whole breast cancer awareness month was created by a drug company. October was labeled National Breast Cancer Awareness Month where pink ribbons and merchandise began being sold without any regard to education or awareness. Breast cancer activists, like the fight
Post a Comment
Read more

A Wanting World

The world seems off. The world seems off, and I am realizing how cancer has taught me something the world is missing. Throughout my cancer, I believe my focus has been on finding humor and joy in living. I have spent my time writing on ways to love life despite the cancerous black cloud looming around my body. I have wanted to share my twisted sense of humor in the hopes of inspiring others to possibly do the same. Cancer is a horrible terrible bad thing. It is something that often makes finding a positive hard. Yet, there are so many people who have found good things despite (and possibly because of) cancer. People who have learned lessons, including the meaning of appreciating life. The world seems off, yet, we (the cancerous) seem to have knowledge they are missing. The value of life. The appreciation of living. The fact that all the small things do not matter. The fact that we are all trying to love, live peacefully, and be healthy... and that we want that for others too!
Post a Comment
Read more