Calling all TNs

I realized that I posted in a TNBC thread and i'm not. Sorry ladies, is my chemo brain😝

Stitch, I was diagnosed with DCIS, high grade, hormone receptor negative (no HER2 test because DCIS), and my surgeon, (as well as my 2nd opinion surgeon), recommended mastectomy. I wanted to do as much as I could to never face this again, so I had a double mastectomy. If I should fall in the small percentage of women who have recurrence, I want to know I did everything I could. I do not regret my decision at all.

Cathytoo, yes my vit d3 has been remiss. I've started back taking my prescribed dose of 50,000 btu once weekly, already I feel a difference.

Yndorian, i'm glad you did post in here, as I have heard of msm and it's part of a supplement I'm taking, so i'll look into the others as well.

Thanks to all, keep those options coming...

VAl

SuQu31 - thanks so much for this response.  From talking with someone else I did find that my doctor put a slash next to HER because they indeed don't look at that for stage 0 DCIS.  So I guess I'm just double negative - meaning still not going to be able to do hormone treatments.  I am leaning towards what you did too!  It does make me feel better knowing I may not be in overtreatment mode.  I'm a total chicken when it comes to surgery, and I want a one and done!  I hope, anyway!  Still thinking away here, and I'll decide after I talk to my surgeon on the 9th.  

Hi, MountainMia! You are now almost exactly where I was a year ago. I was diagnosed with TN, DCIS, and IDC, grade 3, had one tumor in left breast. Had lumpectomy in April, chemo June-August, radiation in October, now happily back to normal activity and sporting a glamorous punk hairdo. (I did cold-capping during chemo; lost some hair but saved quite a bit; now have shorter "new" hair growing in to keep the "old" hair that survived chemo company. It looks pretty good!) It sounds like you have a good support system at home; as Mncteach says, you will find great support, advice, and info here, too. Come here anytime you have questions, or just want to be among people who know exactly what you're going through.

Thanks for the welcome, rockymountaingirl and Mncteach. I'm still in early stages, of course. No chemo recommendation yet from my MO, but radiation for sure. I don't think my hospital does cold cap. My hair is fine and straight, used to be thicker, but age and perhaps thyroid slowing has taken a bit of the heft out of it. I'd rather not lose what I have! But it's a small thing in the scope of it all, I think.

Thanks again. The encouragement and information here is amazing.

I am new to this post. Diagnosed with DCIS High grade in right breast, then after an MRI biopsy they found I have a 0.2 cm DCIS diagnosis in the left breast, high grade also. My surgeon wants to do a bilateral mastectomy. The area in my right breast is 3.5cm. I know the high grade means a better chance of it becoming invasive but the area in the left breast at 0.2 cm seem a so small. I am in the process of getting a second opinion but this is all so scary and confusing. Anyone else's have DCIS in both breasts?Thinking that is th reason the surgeon is pushing the mastectomy.

I think most TN’s have high grade tumors.

I had BRCA testing because I have three sisters, it was negative. Originally, my surgeon recommended a mastectomy for me, because of the IDC tumor size. After I expressed my wishes for a lumpectomy, and after further testing (MRI guided biopsies), they agreed to try a lumpectomy, but that meant I needed radiation. I was really afraid of radiation, but I wanted a lumpectomy, so that’s what we did. It all worked out, but I needed a re-excision, and wound up with breast/truncal lymphedema. It’s manageable.

Welcome to the newbies, you will get through this.

Welcome to those who are new; I’m sorry you had to come looking, but so glad you have found such an excellent source of support.

It’s a scary and confusing time. Ask tons of questions and ensure whatever is happening feels right for you and your family.

Sending love and light

Thank you for your input! I am anxious to get another opinion and get some questions answered before I can feel comfortable with the treatment I choose

ufcknights: I was tested for a number of genetic mutations, and found to be negative for the two BRCA mutations. Apparently, some insurance companies will pay for the testing if you meet any of several criteria. In my case, it was my triple negative status combined with a diagnosis at age 60 or under (I was 51). My TNBC status alone would not have qualified me for genetic testing under my insurance policy.

And I don't think that "most" women with TNBC have the BRCA mutation. But if you have a BRCA 1 mutation, your chances of having TNBC are higher according to the article I've linked to below.

Prior to testing, my BS had said the likelihood of having the mutation was still really quite low, like considerably less than 10% if I remember correctly. But there are ethnicities for which the likelihood is greater than others. African-Americans, Hispanic-Americans, and Ashkenazi Jews, for example, are more likely to have the mutation than Caucasians or Asian-Americans. https://ww5.komen.org/BreastCancer/BRCA1andBRCA2.html And there is a difference between the BRCA 1 and BRCA 2 mutations and their association with TNBC. Before I start making inaccurate statements, here's the study I read about this. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6111442/

Hope this helps!

Anne

Fracking— what a first post! What a sense of humor and irony! I wish I could just reach out and give you a hug! Good luck with radiation. So sorry you're a chemo dropout! I love the hippo and the mischievous baby analogy!

Fracking: It's not often, maybe never, I get a chuckle on this site.

Update on my wife: She once had 3 BC's at once, one of witch was metaplastic under her right arm. Lifetime AC and radiation got rid of that mess. She burned through the AL's and temoxifin, none of which helped. Next was Xeloda witch worked for a time for about one year then it gradually stopped. Also the cancer then turned to regular old fashioned aggressive TNBC with extensive mets to spine and hips. Next came Halaven (eribulin). It wiped out the cancer after just 3 infusions. She's still clear after 2 PET scans and she's been off all chemo's for the last 21/2 months.

Lately she's been a powerhouse of work, cleaning out all sorts of places. She's even re-learning French via CD. Nail biting time as a PET scan is due next week.

Mike, Great news on the Halaven! I know that you and your wife must be on pins and needles awaiting the upcoming test and I hope the results will be favorable.

Stitch, I can certainly understand why you are considering BMX surgery;, even with such an early stage scenario; however, I also understand the recommendation for a lumpectomy and radiation. You may have already discussed all this with your medical team so apologies if this information is redundant, but it's important to know that the mastectomy surgery doesn't provide any benefit in terms of a future recurrence over a lumpectomy and rads. The cancer can recur in, for example, the chest wall, even if your breasts are gone. Assuming your lymph nodes are negative, the BMX would allow you to skip radiation . The trade-off is that BMX surgery is generally a more challenging surgery and recovery than a lumpectomy. Further, if you choose reconstruction vs. going flat, there will be an additional surgery and possibly issues with tissue expanders or abdominal pain if tissue from that area is used vs. implants.

Choosing one surgery over the other will not likely have any significant impact on whether you would face chemo in the future. The breast surgeries and rads are considered a local treatment; that is, they only affect the breast area. In contrast, chemo is considered a systemic treatment that impacts the entire body. Although any tumors obviously need to be removed, it's not the tumors in our breasts that really present a threat to life. It's when the cancer escapes the breasts and metastasize to crucial organs that we're in jeopardy (liver, lungs, brain).

These are general, sweeping statements and I have no medical background. I just know that it can be confusing when we are first diagnosed and it's easy to think ridding ourselves of our problematic breasts neutralizes the threat. I would suggest you instead ask questions like: Are you happy with the size and shape of your breasts? If so, the lumpectomy / rads option probably makes more sense. Will the periodic mammograms cause you great anxiety if you keep your breasts? What support do you have in place if you go with the more difficult surgery? What reconstruction options would be available? Because I'd lost 100 pounds, the quality of my skin meant it couldn't be used to craft a new breast with my own tissue. Implants typically mean an extended period of tolerating having tissue expanders gradually filled.

There's a lot to consider and it can be overwhelming and scary. I hope others will correct me if I accidentally made any misstatements. Whatever you choose, I wish you peace of mind and favorable results.

Lyn

Happy Wednesday morning everyone.

It's the tenth of April here in California. Amazing red low crescent moon at midnight last night. Anyone see it?

I see Stitch is more newly diagnosed than me. OK, my DX was 2/2019. I'll say, I like the idea of offering insights. And Info. I think they are insights and we are here for a reason in this space typing to each other, and we have the opportunity to channel the best of ourselves and the best of the doctors we've encountered. So I'm letting my voice sail.

But right now I have to go do early morning LABS.

Then run off to work, because I'm still in treatment. I'd love to hear more about RADS and BOOSTS etc.

MIKE: As well all of what Mike said. It's slightly in need of decryption for me. I get his wife had MPBC (one tumor but not all of her tumors) but I was lost in some acronyms. AL (is that Andriamyacin red devil stuff they call A? and something else? I can google it later.) LIFETIME does that means the maximum lifetime dose?

SO was the original 4 cm IDC the one that was metaplastic? Then it changed to TNBC? And was the Plastic PR+?

Oh and tell your wife I'm at my desk job goofing off all day so I'll check in (I work at a University) and I speak French!!! If she wants to practice. She could join my French Club on DuoLingo. DuoLingo is the best. It'll just be the two of us until we get others to join. I lived in France near the Swiss border for 7 years. It was long after CHERNOBYL but I've decided to name my tumor the chernobyl shark or something. It's a work in progress. Can you name things after they're out? But of course the only thing that kills a shark is another shark or a giant squid. I should name it chernobyl's mouse or something.

Anyway everyone there blamed their minor and major cancers on Chernobyl, and my husband's French and Swiss friends had an inordinate amount of cancers for 30 year olds. No breast though. Anyway, I digress. Definitely needs a weaker name. Like a chernobyl minnow or something if it's going to be a fish. Any way.

I'm seriously thinking about throwing in some red herrings at this point so I'm less identifiable online. um ...I also speak Arabic and I lived in Canada for five years. These are red herrings so not true.

STITCH: The way I think about lumpectomy is it gives you the most options. Which you want. I wanted an BMX (not a dirt bike of course although that would be fun, are we really calling it an BMX?) as well at first STITCH. So happy with my LUMPECTOMY! So happy I'm having it fixed/filled whatever and that's up next before radiation. You can always get a Mastectomy later if you want one. My two cents! ALso if you are offered even briefly a plastic surgery consult, jump on it. That means insurance will pay and just let the plastics guy do his thing. They live in another plane those guys. You'll thank yourself later. If they don't then maybe ask? Also if it's so small then maybe not even a thing. Mine was 4 cm. So bigger. In 16 days it went from 35mm to 40mm. The plastics grow like well tumors I guess but the SUPER fast growing kind.

Late for work and labs...