Reaching out and Thankful for this site

[cujo1020]

Hello I am newly diagnosed with TNBC this site was recommended I have surgery on the 21st for Lumpectomy and lymph node check

Also being tested for BRCA gene

Then 20 weeks of Chemo then Radiation

This all happened so fast I don't know how to process it I don't know what to expect and I know everybody on this site will have so much information and be able to walk me through what I have facing me..My oncologist talked so fast about Chemo and starting w Red Devil and I felt like it was so impersonal no explanation ...just another #.

I am hoping for neg. Node results and maybe it won't have to be so harsh. I am still in disbelief....and fearful now that I w be out of work ....thankful for this site as I am alone and have no one to really talk to about this Cancer stuff

[SeattleMom]

Hello, Cujo,

Please take a deep breath; makes me so sad that you are being treated by an insensitive oncologist. Just what you need when you’re filled with fear and anxiety. 🥴

I am an MBC patient entering my 6th year of treatment. You are blessed with the possibility of a total cure, despite the miserable side effects you will deal with for the next several months. I have a twin sister who was diagnosed with TNBC almost ten years ago. I think the “red devil” protocol remains the standard of care since this type of BC is a bit more aggressive. Her worst side effect was utter fatigue and yet, believe it or not, she never missed a day of work and was determined to keep her condition secret.

Two days before her first infusion, she had her head shaved and a wig maker in Bellevue, Washington had her “real hair” wig ready for her to wear after her first infusion. Everyone at work just assumed she’d had her hair cut because the shade and texture, of course, hadn’t changed. I do know that some cancer centers have “cold caps” that you can wear during an infusion that are designed to help lessen hair loss.

Most people, including myself, are open about our cancer diagnoses. I was first diagnosed in 2000; and my MBC recurred in 2017. There is no cure for MBC which is why I encourage you to fight your BC with all you’ve got. My twin sister is alive, well, and still working at the age of 73. You can do it, too!! God bless you! 🙏🏻🙏🏻💗💗

Linda in Seattle

[cujo1020 in reply to SeattleMom]

What a great inspirational story...TY

[smithtennyson]

I'm sorry you are 'joining the club', but look on the positives...its a lumpectomy that you are having not a masectomy, which won't take as long to heal and you have been diagnosed quickly. My lymph nodes (I live in the UK) were checked the day I had my biopsy but that was 6 months ago and I'm still waiting for the operation after multiple mistakes by the hospital. I'm just hoping it has not spread. Hopefully the chemo and radiotherapy will be quicker being a lumpectomy and you won't be too tired either. Good Luck and let us know how it goes x

[PJBinMI]

I'm so sorry that you got this diagnosis, and right during this holiday time that is supposed to be joyful! I'm a l o n g timer with metastatic bc (18 + years!) and have learned alot about bc and mbc, read, gone to conferences, belonged to a mbc support group and have met alot of women living with metastatic bc. One thing that has helped me alot has been preparing ahead of onc appts and bringing a list of my questions to those appts. it might be helpful for you to do, too, and maybe saying something to your onc like "whew, you just gave me alot of information...can you give me a couple of minutes to think about it and see what questions I have?" Oncs are used to giving new patients alot of info and some of them need reminderss like that. It's also been helpful for me to have somebody with me, to be a second pair of ears so if you have a close friend or family member who can go to appts with you, that might help. I had a lumpectomy and lymph nodes removed soon after diagnosis, and that ended up without clear margins and the cancer in my breast had gone into the chest wall, but I am still here and doing well enough to be here on-line! Healing from that surgery was not particularly difficult! The treatment your onc has outlined for you sounds quite standard to me! Something to ask about is how the chemo is likely to impact your ability to work, and to do routine household chores. You might also want to look into whether you have short-term disability and/or long term disability insurance through work. Alot of people are reluctant to tell co-workers, supervisors, friends about their cancer but many of us do get alot of support, plus info about local resources we may not know about. Onc nurses also know alot, and cancer centers often have social workers, too, who can help us navigate in this strange new world we've entered! I hope you will find out that you have an early stage bc and that you can go back to living a more regular life once your treatments are over! Let us know what you learn after your surgery! I'm seeing my onc that day and I will be thinking about you and sending love and healing thoughts your way...

[Warrio]

I'm so sorry you are having to deal with this. It's a lot, and a short period of time. Ask your doctor to slow down and explain things. Ask about if a social worker and/or navigator are available to you. One thing I've learned is the importance of speaking up for myself. The AC&T protocol is the harshest of the chemo, the AC (includes the Red Devil) is harsh. Reach out to support groups, talk to your friends, ask for rides, look into ride options. Get a notebook write down how treatment makes your feel physically and emotionally. This helps you keep track. Use it to take notes and ask questions. Ask questions about everything! Become educated, knowledge is power in this circumstance. I'm a year from end of IV chemo and surgery, I had radiation as well, to be honest I still don't think I've processed it all. Talk about it, no your friends maynot understand, but you can help educate them. Every cancer is different every person, treatment, reaction is different. It's OK to ask for a second opinion, find an oncologist, surgeon and radiation oncologist you like and are comfortable with. It's a scary monster but you have more power and control that in might seem at the moment. Big hugs

[Sejj]

I too had ACT about 5 years ago and many other treatments since. Embarking on a new one right now . It is a difficult treatment and I am of the school of thought that sometimes you need to take care of yourself with whatever your body allows snd emotions accept so try not to get ahead of yourself. One day at a time. Ask questions of your team, ask for processing time, medication to alleviate anxiety, counseling and whatever else you might need to help you cope. Hopefully we will be on this long journey together for a long time. My best to you Marilyn

[Adamskd1]

Hi cujo1020 (love the name),

I am sorry you have gone through this diagnosis, and treatment. Seeing that this post was a few months ago, how are you doing now? Did you get a full understanding of your treatment? How did it all go? If you would like to speak to someone, you can always call SHARE Breast Cancer Helpline at 844-275-7427. There are trained, peers that understands the science and the emotions behind the disease and its counterparts. Here are some links to other programs SHARE has to offer.

Let's Talk About it - TNBC: sharecancersupport.org/lets...

sharecancersupport.org/cale...

[Redwrap]

Hi how are you I just want to let you know that you are not alone and that what I can share about chemo is that it makes you tired and you will need to rest be sure to listen to your body and take it one day at a time