Terrified over new diagnosis of breast cancer

Everyone stands before their dx differently. I'm a more information is better type of person. So I read a lot about BC and the different types before I know what type I had, then as dx was narrowed from BC to TNBC BRCA2+, I was able to weed out all the other information I had previously read that I no longer needed to worry about. Then I was able to focus my attention on my specific dx.

I was able to work throughout my entire treatment process. For chemo, I didn't really loose my hair but it got real thin and tangled (curly hair) so I had my head shaved. Thankfully it was winter so caps were a great coverup (also I knit, so I made some cute hats to wear). Bilateral mastectomy was the only time I missed any work. I was fortunate to schedule all my appointments either real early in the morning or late in the day. I had been employed at the same place for over 15 yrs so I had a lot of good will built with my employer so I was able to flex my hours if I needed - it was also during Covid so I was working from home.

I too kept a journal of everyone I talked to and all my questions and the answers I was given. If they gave an answer I wasn't sure of I said "so you mean this" and restated in my own words. I still take my notebook with me to see my oncologist for my semi annual visits. I'm just 1yr+ into NED (no evidence of disease). For some appointments, not all, I had someone else attend with me - so there was a second set of ears to hear information; because once you hear "cancer" sometimes the brain stops listening to anything after that.

Attitude is another thing that helped me a lot during my journey. With all the medical advances and information out there (I stayed with reputable websites for my information), I always looked at my dx as a medical condition where a treatment existed. I needed to decide for myself how I was going to face each treatment and arm myself before treatment by knowing all the possible side effects and what I might be able to do to minimize those side effects before hand.

There will be good days and bad days this is a safe place for you to express your frustration, anxiety, blessings and ask advice or suggestions from people that have walked a similar path and know some of the potholes you might need to navigate. You know yourself, you must now advocate for yourself and you will find a way to navigate this - ask for help when you need it.

bpknitter53,
I am definitely gaining reassurance from all the great people (not assuming all are female!) who have responded to me. I am especially singling you out as I am also a knitter, so that caught my attention. Ironically, I have sewn hats years ago to donate to a charitable organization that provided wigs and hats to women undergoing chemotherapy. I have also knit or crocheted several prayer shawls for others. I live in snow country, so have a pretty good collection of hats, but this will provide me justification to make a few more - as if I ever needed an excuse to knit. I have been knitting a lot lately as it provides solace. My sweater is growing quickly. Anytime you want to talk knitting, I am up for it, but obviously needs to be separate from this support group.

I am starting a healthcare file and notebook. That is great advice. My biopsy f/u appointment was scheduled for 7/11 and the doc had a family emergency so switched it to 7/19. I impressed upon the scheduler that it is imperative I get in asap, so get me in if there is a cancellation that opens up an earlier appointment. The breast care nurse will call me to go over the results, assuming it is positive, once the report is completed.

It is good to know you worked through your treatment. I am single and have to work. I have been with my employer for almost 10 years. I am also just transitioning back to a position I held in the past, so it is like going home. I am leaving an extremely high stress job, so that is good. I had decided the money just wasn't worth the stress. I was already in the process of switching when this BC showed up. I worked from home and now will not be, but I won't have to travel for work either which is great.

Stress is a theme in my life! I am the primary caregiver for my 86 year old father. He seems to think he is going to take care of me - ha! He is pretty independent, no dementia, but I still do all the cooking, cleaning, etc. and he is not currently able to drive. We are looking into getting a personal care attendant in twice a week to help with his needs and some light housework. I need the help. I have made it clear that I need to be a bit selfish now and focus on what I need.

This is longer than I intended. I greatly appreciate you and all the wonderful people who have taken the time to respond with individual experiences and guidance. Hugs to one and all!

In addition to knitting, I also sew. When I had chemo, I knit myself a hat. When I had my bilateral I first sewed a mastectomy pillow in very pretty colors, very helpful for sleeping in a chair or in bed and also while a passenger in a vehicle. After my bilateral I knitted my own "knockers" using the knitted knocker pattern - also in soft pretty colors - great for shaping without the added weight of my prosthetics; also cooler for the summer months.

I now knit and/or sew hats for the chemo center where I had my treatment. Uses up some of those now one-off skeins of yarn that could be put to use and give me a quick project in between my other knit projects.

I am the primary care advocate for my 97 YO mother and when I was diagnosed I made sure I knew what was going to happen with my treatment before I told her. I wanted to reassure her that I had this handled. Fortunately she is clear headed, uses a walker and takes her safety seriously; but we did increase her caregiver hours so I didn't have to worry as much. Oh she also lives alone, but she is about a 5-10 minute drive away - I could walk if I had to. I have other siblings but they all live out-of-state.

My best to you and yes, I'd love to talk knitting.

Yes, it always feels different when it’s you, but you’ll find that you will rise to any challenge. We’re strong and we just do. Whatever your treatment plan is just becomes your new normal. Life goes on and we just make room for medical stuff as part of it.

I had a 7 mm tumor found on a routine mammogram. I agree about the genetic testing. My testing was ordered but my surgeon was so certain I didn’t have a genetic component she designed my treatment plan without waiting for results. Luckily, the results came back the day before surgery. I was positive for BRCA2, the first in my family. My current surgery was cancelled as that changed my treatment plan. My surgeon now uses my case as a cautionary tale in her breast cancer talks. Be sure to wait for all test results. Insist on genetic testing so you have all the facts.

I had been with my company 15 years at the time, was also in a high stress job and single. I understand. Your employer should be willing to work with you. I took 6 weeks off after surgery. I had 3 weeks vacation time and my colleagues all donated some of their vacation time to me so I never lost pay. How great was that? You’ll be amazed at how the people you least expect will step up to help you voluntarily. Without asking, my cousin and best friend took vacation time to stay with me 2 weeks after surgery. For 2 weeks after that colleagues put together a schedule to walk my 3 dogs (condo) before and after their work day. As a DIY independent person, the best advice I received: Let people help you so they don’t feel helpless.

You’ll do great and get through this. Waiting is the worst part. Please keep us posted. Zebra

Wow, Zebra - that genetic testing coming back positive for BRCA2 just in the nick of time is a great example of the importance of testing. It is excellent that your surgeon now uses that experience to spread the word about the importance of testing. Thanks for sharing that.

I have not kept my early diagnosis a secret from my closest friends and one has already offered to donate leave if needed or to do anything else possible. Another offered to fly up to be with me if/when needed and her daughter is fighting pancreatic cancer too. I knitted a prayer shawl for her daughter last year. Who knew I would be here a year later with my own CA? I knew I had amazing friends, but this is beyond words. My son has called me several times from his home out of state and will be here if I need him. My boyfriend will take me for my biopsy next week and whatever else I need. Yes, people are amazing and it humbles me.

I had trophoblastic disease in Dec., 1992. My unborn child died, which is when the malignancy was discovered. Thankfully, I didn't have to have chemo, but because it spreads through the vascular system, chemo was offered the day the malignancy was discovered. I was in shock and said no as I had a 2 year old at home to care for and "didn't have time" for cancer treatment. Thankfully, it hadn't metastasized. Who knew that would be a warm up exercise for this? I learned then that people just don't know how to talk with someone who has cancer, so we have to help them with the awkwardness sometimes. People want to help, want to know and show compassion but just don't always know how or what to say. Yes, we are strong and this is just a rough patch in the road of life. Thanks for the reminder and support. All of you are all so amazing and I am so glad I found this group!

Zebra,

My treatment went the same way. I was set for 4 chemo's of AC every 3 weeks. The day before i was to start that chemo, BRCA2 was diagnosed and i then had 12, once a week, of Carbo platin and Taxol. Then i was to have the 4 AC's every 3 week. Genetic findings changed what they knew to do. I was the first of my 5 siblings or any other family to have that result. My younger sister and my older brother both were tested. My younger sister's daughter as well. All carry the Brca2 mutation. None so far have cancer. My older sister did not want to be tested. My test was in August of 2021. In july of 2023, she finally found out what all her stomach problems were about. Ovarian Cancer. I believe stage 2, although they removed a couple items in there. He privacy is most important to her. She told our younger sister she took the genetic test. I am not sure as her treatment was the carbo/taxol i had every 3 weeks.
Lastly, my blood had real trouble with the 12 infusions and only one of the AC infusions. I ended up with pancytopenia. That got me hospitalized for 4 days. The chemo ended and i went on an Olaparib pill. That did not help my blood. After getting covid in January of 2022, I had my first surgery in early Feb 2022.
A i said, i worked from home and used little sick time or vacation time. Not for this cancer but for my recent BMT. AND I AGREE, TAKE WHAT HELP IS OFFERED FOR THE THINGS YOU NEED DONE THE MOST. Some people want to help too much, but "zebra" had a valuable reply to what she did. The help we get here is priceless! P.S. I knit too but have never made any hat that I would wear in public!

Sorry to hear about your cancer history and heartbreaking loss. It sounds like you have amazingly supportive friends and already know the drill. We’re all here to listen. Blessings.

@katgob
I think we’ve chatted in other threads. Hard to keep everyone’s history straight. You’ve been through a lot. Sorry to hear about your sister. I never had chemo, but lots of surgery, radiation therapy, targeted therapy, AI, PT. My brothers died young from cancer, but I suspect at least one had the BRCA2 mutation. I feel like the lucky one. My son has been tested and has BRCA2 along with CHEK2 that I also have. Probably no one has perfect DNA. It’s all about discovering the mutations early enough to be helpful so good that we can all share what we’ve learned.

Zebra,
I agree about discovery. It feels like many do not feel like what they have to share is valuable to all. Some told me that on bc.org. It is likely we have passed each other on these boards. I found it looking for my sister's possible path but found an MDS path for myself that came about in October of 2023.
You were the lucky one to find out and have a good treatment plan to head to a cure. So far, my brothers and sister are good. The older sister did go to the Dr. I had at COH and had her hysterectomy done with him. She followed the chemo plan although she did not want to at first. Possibly had she found out sooner, the chemo would not have been needed.

Several things I would suggest. Take someone with you to your appointments and have them be your scribe.
Also have the oncologist write out a brief summary of your treatment plan so you know what to expect.
Take good care of yourself and don’t be shy about asking for help when you need it.
You don’t have to suffer through side effects. The supportive medications work
well controlling nausea.
Keep us posted on your journey. You can do this.