BRAC 1 was preventive w/DBL Mast. now have breast cancer.

treerock · January 2016

So 5 years ago when I turned 50 I got tested for the BRAC 1 mutation , and it came back positive, since my Mother died of breast cancer @ 32 years I decided I would be preventive, had a lot of other reasons to consider a DBL. Mast. besides. So the last 5 years have been great, a lot less worry about breast cancer until recently. Had reconstruction, but their is still about a 5% chance to get cancer, had a lump between the breast and armpit area, thought it was just scar tissue, waited a short time since it was Christmas thought I'll get this checked in the new year, January 21st the lump that I was gonna get checked more than dbl in size like over nite. Go that day to get checked-boom positive breast cancer Stage 2 grade 3. Still trying to understand what that means, this wasn't subpose to happen like this. I feel like I waited too long as I knew I had a lump, but I've had lots of lumps, cysts, benign tumors, scar tissue, fibroid's etc... I'm the past, the last 5 years I haven't had any of that, I thought for sure this had to be scar tissure or a blocked lymph node due to drinking soda or to strong of deodorant- any way here I am now having to wait til' the 5th of Feb. for a pathology report, the tumor was cut out on Monday the 25th have a drain, not back to work...My life has gone from fine to severe in a what seems like 60 seconds... anyone have anything for me to think about????

ElaineTherese · January 2016

Sorry this happened to you! If your biopsy showed that you were Stage 2, Grade 3, it means that the lump was bigger than those discovered at Stage 1 (usually 2 cm. or bigger) and that it included cells that were rapidly dividing (and thus considered aggressive). I wouldn't be surprised if your doctors suggested radiation and/or chemo. But, that's not the end of the world. Many of us make it through rads and chemo without being entirely debilitated by the procces. Gentle hugs, and best wishes!

BarredOwl · January 2016

Hi treerock:

I am so sorry this has happened. The suddenness of diagnosis is shocking. Sometimes, we notice something but don't react as soon as we wish we had when looking back. Please don't blame yourself for thinking at first it was scar tissue following prophylactic surgery and reconstruction, and save your energy for working with your doctors to understand the pathology report and choose the best treatment plan going forward. You'll find lots of support here.

BarredOwl

treerock · January 2016

I will try to keep pushing myself towards staying health in mind, and the more I talk about it, the more I am reminded by many that staying strong is important. I will take that advice and work with what comes my way. Thanks for the words of encouragement.

lintrollerderby · January 2016

Hi, treerock, and welcome. I'm sorry you have a reason to be here, but so glad you found the site.

Please don't be too hard on yourself as far as waiting. I, too, am BRCA1 positive and for those of us with a BRCA1 mutation who develop breast cancer, the overwhelming majority will have Triple Negative. All of the stats that are so common about breast cancer taking years to develop typically do not apply to us. Our cancers oftentimes seem to come out of nowhere and the lump can and does get visibly larger in just weeks. That was the case with me. I had to wait a month and a day between finding my lump and having it surgically removed, and in that time, it went from being an incidental finding when I was scratching my chest to visibly pushing against the side of my breast. In fact, when I went to the doctor the morning after discovering it, we both had to feel around to locate it. Exactly one month later, on the day of surgery, it was noticeable the second I took off my surgical gown while doing the pre-op. I'm telling you this because I just want to make sure you understand that because we have this mutation, our bodies behave a bit differently than other ladies (and men) who have been diagnosed. You did the right thing and got it checked out; it's just the nature of this beast that it grows at an explosive rate. The rapid growth rate oftentimes means that if any cells have escaped, they'll likely respond very favorably to chemo.

I'm so sorry that despite enduring a prophylactic bilateral mastectomy (PBMX), you still developed cancer. I did BRCA testing several months after I finished chemo and was completely floored by my BRCA status. My only child, my daughter, immediately tested, and unfortunately, she is positive as well. She had her PBMX with recon last year, and though I'm able to breathe a sigh of relief that she greatly reduced her chances, I'm still so fearful because I know the risk never drops to zero.

I think you'll feel much better once you meet with a medical oncologist and have a treatment plan in place. If a BRCA1 mutation carrier develops breast cancer, there's approximately a 75% chance it will be Triple Negative. Because there are currently no targeted treatments for Triple Negative patients, chemo is a certainty. I wanted to tell you this so that you can mentally prepare yourself for the both the diagnosis and chemo recommendation.

Welcome again and I hope you're able to find some peaceful moments despite the whirlwind that has come into your life.

treerock · January 2016

Thanks so much for your reply, I think I have to keep hearing this info. because it's just still such a shock, so I thank you for telling me your story and I appreciate the thought and time you put into it. I was really shocked how quickly this lump jumped and understanding it's the nature of the beast helps. I think that's why I feel somewhat anxious in waiting til' the 5th to see the Oncologist, I'm hoping they got all of it last week during the surgery but understand the need to get the chemo to kill it the rest of the way, hoping it isn't to far along. My Mother died quite young and quickly, and that seems to be like a recurring nightmare in some respects. I sure hope with each one of us particularly the mutation genes they can find more successful options, I have several nieces as well two young grandgirls that I hope when they get to an age they can have more confidence in this situation. Have a good nite and God bless. Treerock

ChiSandy · January 2016

Sorry to hear that despite every precaution this happened to you. But rest assured that drinking diet soda or using deodorant or antiperspirant does NOT cause breast cancer or even clog lymph nodes. Yet another bulls#*+ old wive’s tale, just like the one that contends wearing underwire bras (or bras at all) is carcinogenic. It’s pointless to beat yourself up emotionally about what you might have done or failed to do to cause this (besides being ridiculous and illogical, as nothing you could have done differently would have had any effect). No matter what, we don’t get do-overs. Instead, concentrate on what your treatment and recovery plans will be going forward.

treerock · January 2016

I agree they don't cause cancer, but soda has caused my lymph nodes to swell, and people do have products that clog pores and such.I guess I was thinking that that was the situation-after all I had less then a 3% chance to get BC at this point. So I was being hopeful that it was another issue. Perhaps a little denial, but after years and years of getting lumps checked and coming out benign, and after being as preventive as possible- in the end DNA is DNA. Thankful they know more about BRAC 1 then they did years ago. And it's a good reminder not to let myself get wrapped up in things that I did (like drink soda) that I know that isn't really healthy anyway. Thanks for your response.

farmerlucy · January 2016

treerock - I'm so sorry for the nasty surprise. I spent 20 years doing high risk screening including a PBM. When I ended up w invasive breast cancer anyway I felt a whole range of emotions including profound grief than I had not outrun this insidious disease that took my mother at 29

Meds and counseling pulled me back into reality and I firmly believe all folks dx w breast cancer should have access to those tools. Ask your docs for help in this area if you need it, I'm so sorry. Gentle hug.

treerock · January 2016

Yes they should be given more tools your are right on that. I also think that if they are going to let folk become preventive then when asked to do more helpful type follow up should also be expected. I felt that what I got were people acting like they understood, but didn't really understand the need for somethings were greater than what some who don't have the mutations or have been preventive needed.

So essentially because I don't have 98% + breast tissue anymore, ultrasounds would be a lot more realistic on the surrounding areas including armpits and collar bones. Allowing Women in this situation to say- I think I need a ultrasound say every 6-12 months on these areas, with recurring cancer body scans would be extremely helpful.

It seems that a lot of health providers like to repeat the standards and understand tests are critical, but it's like they don't really listen to what your saying about preventive- I had to go to urgent care because the regular Dr. and Appt. Nurses only seem to be able to do the standard , Mammogram first, then ultra sound, then mri- this is protocol. Not to mention then they make the Mammogram appt. for likes 2 weeks in the future, no sense of urgency. Thanks for the information and gentle hugs- I will keep plugging along.

BRAC 1 was preventive w/DBL Mast. now have breast cancer.

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