Terrified over new diagnosis.

I learned not to research much until I knew what I was dealing with. I liked the Mayo Clinic breast cancer book because it gave an overview.

You will find out if your cancer is fed by hormones (ER and PR), if it is HER2 positive or negative, the size and grade, and hopefully have an Oncotype Dx test to guide treatment. Many of us have avoided chemo thanks to that test.

I am almost 10 years out and had a grade 3, hormonal positive, 1.5cm tumor with lymphovascular invastion (in my lymph vessels but not nodes). I had mastectomies and did hormonal meds- no radiation or chemo.

Each of us is different but at this stage you cannot, as you know, have much of an idea of what will be needed as treatment, which is hard. Once you know, it actually gets easier and you just put one foot forward.

While waiting I took walks, watched movies- any distraction helped- and I also asked for a few Klonopin. I didn't use them but it helped that they were there.

Thanks! That is helpful. Mine is .8 cm, so I am hopeful a lumpectomy and
hormone therapy or something will be all it takes. I will look for the Mayo
book. I am trying to distract myself which works for a while but the
waiting IS very hard.

Thanks!

@victoryoverthis

Welcome to Mayo Connect, I hope you find it a place for support and advice. I have been in your spot and it is so overwhelming. Take a deep breath and do not get ahead of yourself.

First, remember everyone is an individual. Every treatment plan should be tailored to your situation.

I would start a notebook, keep track of what your being told by providers and write down questions for your providers as you think about them.

There are few discussion topics on what to expect when newly diagnosed.
https://connect.mayoclinic.org/discussion/newly-diagnosed-with-lots-of-questions/

Here is a site with list of questions to consider asking your providers.
https://www.cancer.org/cancer/types/breast-cancer/understanding-a-breast-cancer-diagnosis/questions-to-ask-your-doctor-about-breast-cancer.html

As far as work, find out what provider is recommending for treatment plan and how it might affect your work. My sister worked through her treatment. Not everyone can do that.

Have you had a biopsy yet? When is your next appointment?

My biopsy is scheduled for Tuesday, with follow up appointment to discuss results on Thursday. The radiologist said though, that nothing else (but cancer) looks like what showed up on the ultrasound. So the biopsy will confirm it and give more information, along with placing markers. I know I need to deal with facts - not wild, fearful speculation. The notebook is a great idea and thanks for the links. I have started writing down a few things, such as asking about gene expression testing. Talking with a mentor and others in this group was what I knew I needed. I am a mental health therapist. I have helped a few others with health fears. I know what the clinical articles say, but is hard to think when it is me. I appreciate the advice.

I worked through my treatment remotely. Thankfully Covid showed my job could be from home and it worked. I went to the COH in Duarte California. I think at my 2nd visit I was asked if I? wanted the genetic test. I had donated platelets at the Red Cross for 25 years, so have my blood studied was big deal. I am glad i did as i found out i had the Brca2 mutation. That changed the treatment i had. My tumor was 5cm and only shrunk 1/2 with chemo.
I kept a journey that had questions about meds, how i felt today, where pain was if any and a couple reflective questions. IT was a journal from mind flight and I have no idea who sent it to me. I used it all year mostly daily.
Fear? you know "victoryoverthis" our ability to walk through these events is focusing on the things we can do something about. Let the doctors and team do what they do, the those who give us tests like MRI's just do it, and me? Take deep breaths and do each thing one at a time. My side effects from my breast cancer were never as awful as i read. No skate in the park but do able with a great attitude most days.

Thank you for your wise words and sharing your journey. The genetic testing tip is great information to have.
Thanks again!

This diagnosis is a traumatic event. But it does actually ease as we move into some acceptance as a process becomes clear; removing the cancer and treatment to prevent recurrence.

The comments by others cover any advice I might have given but I’ll just add that SELF ADVOCACY is essential. Ask your questions, get a second opinion if things aren’t crystal clear and persevere in being heard and seen.

Best to you on this unwanted journey.🌸

Thank you for your guidance and encouragement. Good preparation with questions appears to be key. I live in a small city with limited services and pretty transient medical care providers. They tend to leave once their student loans are paid off, unless they are avid hunters and fishermen, so getting the care I need will require good preparation and self advocacy. Thanks again for your great advice.

Others have already said what I was thinking. For me the hardest part was the testing phase where you don’t know where you stand. Once every piece of information is collected and put together and the big picture is clear and a treatment plan is established, believe it or not, things get a little easier because now you have a goal, you need to take one step everyday to achieve it. You just need to move forward. Tell yourself that. Also, do not listen to negativity especially from someone who haven’t gone through this journey. Have a folder/binder to put all paperwork in one place. I did chemo. It wasn’t as bad as I thought it would be but once again everyone is different. In this day and age, we have come a long way towards treating this disease so don’t worry, you will be fine. Tell that and believe in it. Be grateful and thankful for the live that you have been given. Dig deep and find that peace and happiness in you. Positive mindset helps a lot. You can do this!

What was your diagnosis?