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I made a BIG mistake and its too late.

bigmistake Member Posts: 6
edited April 2021 in Just Diagnosed

There's a long backstory to my diagnosis but I fear this post will be long enough. I hope I'm posting in the right place but I just need to get it out there so bear with me community.

The important bits:

diagnosed w/ ILC on Jan 13 - Surgery March 6 - Pathology rundown: 3cm tumor with 3 out of 7 nodes affected (2 macro 1 micro) hormone + her2 - oh and some DCIS sprinkled in there too GREAT.. not! - Radiation starting next week - Hormone pill after that.

Anyways now my rant and meltdown... after my diagnosis I decided right there and then I was NOT giving cancer ANY space in my life. Nope. I allowed myself to cry once after I was diagnosed and again telling my kids and husband (OH! by the way I'm 48 and have 2 wonderful kids ages 14 and 18 and a husband). I went home, told family and loved ones and made it clear, "I'm not letting cancer have any part of my life!" I never researched other than my basic diagnosis. I didn't want to hear stories, I didn't research support groups, I didn't join Facebook groups or any other forums. I never did any of this because I felt cancer had taken over part of my body and I would not allow it to take over my thoughts. I convinced myself this wasn't going to be a chapter of my life, it was merely a paragraph in my story IF that. I trusted the professionals.

I live in a fairly small town and was treated at a small hospital but I by NO means felt that I wasn't in good hands (until now). Oncologist told me 3cm average tumor I said OK. Oncologist told me lets run this oncotype test to see if you need chemo I said COOL. Test came back 10 "no chemo" said the Oncologist said, I said GREAT!!!. Onto radiation and I considered myself LUCKY. I put said oncotype report in the bag of allll the documents relating to BC I've gotten. Today I got to organizing them and for one reason or another I decided I oughta read more about said oncotype gene test that allowed me to safely skip chemo when from my limited research before I've seen most lymphnode positive patients require chemo.

It was to my SHOCK that I find out this is barely being tested out and implemented for people with positive nodes. This is where the panic and spiraling into an endless searches begins. Can I trust this? Can I even trust my oncologist? I am premenopausal and just ONE google search lands you to studies that say ALL premenopausal women with node positive BC benefit from chemo REGARDLESS of the score. Second, 3cm tumor is more than the average. Third, my oncotype says I have a chance less than 15% of distant metastatic cancer in the next 10 years. One google search away is many studies that say with my tumor size and node status that percent is MUCH higher. Is this test trustworthy for women in my situation? Do top of the line oncologists even use it? Should I barge into my oncologist's office tomorrow and demand an explanation? I really believed all my tests and procedures were top of the line tried and tested industry standard.

At this point plans are set into motion for radiation and I don't have the motivation or even know if its possible to delay things by trying to uproot my whole care into another treatment center. My oncologist never ever made it feel like I had anything to worry about, I would've felt silly asking for chemo from just how much he reassured me my cancer was very treatable with rads and hormone suppressor alone. I haven't even had any scanning yet. All I feel is anger at myself. I'm very very angry that I stupidly didn't research and went along with my team's every recommendation thinking they were up to date and on top of it. I am sorry for my kids because maybe in not doing more and asking for chemo I am taking them away for their mom. I felt safe and on top of it and now I feel anything BUT safe. All I feel like I can do now is lift everything up to god and hope he sees my mistake and gives me a hand at keeping this monster at bay. I hope my kids can forgive me IF I ever happen to become metastatic because I don't think I'll be able to forgive myself.