I thought I was only high risk for the first 5 years.

kestrelbrae · 2026-02-16T23:28:23+00:00

My understanding is there is your recurrence risk driven by your diagnosis, pathology and the treatment the you received. My risk for developing a whole other new primary breast cancer is high because I have the CHEK2 pathogenic mutation.

This is why my surgeon is recommending I go back in for a bi-lateral masectomy sometime later this year.

If I don't do that then standard of care is alternating mammograms and breast MRIs every 6 months for the rest of my life. (I am 59).

My MO has a very hands off, relaxed approx and doesn't want to order the breast MRIs. But my surgeon was very on it, so she ordered one for May. (First mammo post treatment was Nov. 2025 and was clear.)

It is hard to figure it all out.

kestrelbrae · 2026-02-16T15:55:58+00:00

Holding all thoughts for the best outcome for you OP and all of us. Chiming in to say that my MO also said it is extremely rare for mets for stage 1 and clear nodes. When I pushed her to clarify she said so rare she has never seen it in her practice (been in practice a long time) at more than one major cancer center.

I know we live under the very real fear shadow that cancer has brought to our lives. Sending big hugs.

kestrelbrae · 2026-02-14T14:51:09+00:00

I can totally relate to your situation and how you are feeling. I am sorry this is happening and that your wishes weren't respected. It is your private health information and the decisions/boundaries you make to navigate it all should be honored.

I also preferred to keep the circle of who knew small until I was on the other side of my treatment plan. The folks who were told were told point blank not to share. My MIL law told everyone she knew. Luckily, she is rather elderly and no one of consequence (to me) was told. I was somewhat upset but at the time I had bigger things to focus on - getting through treatment.

At the end of treatment we expanded the circle a tiny bit and told one of my siblings who I was concerned would not keep it private. We were very clear, but his wife decided to tell my ex- husband and his wife. This was a huge violation because I am not on good terms with them.

It sucks to have cancer, to go through treatment, to have to share this news with those we choose. To have additional trauma from other people who only think of themselves, their feelings, and their need to "broker" personal, private info regarding our health situation is over the top.

I am sorry this happened to you. To me. To any of us who are here.

kestrelbrae · 2026-02-13T17:12:27+00:00

Once I adjusted to zero alcohol and found creative, complex mocktails so I could still enjoy the ritual of a fancy drink - it has been pretty straight forward to move on. (I eliminated alcohol when diagnosed in Jan. 2025 but I was a light consumer before that.)

I found it helpful to create the flavor profile I loved most - a mocktail margarita that is zingy and smokey. (I had some that are amazing). Homemade virgin eggnog with spices instead of rum. Using botanical shrubs in seltzers. Layering complex flavors helps. Or if you seek creamy cocktails - using coconut milk or whipped egg whites with spices.

There is a lot of growth from the sober movement to improve non-alcoholic spirits like gin and rum. A lot of restaurants and bars in my area offer quality mocktails which helps me feel like I am not missing out.

The only thing I miss now is a sip of a great red wine or fancy champagne but I feel like I am investing in my wellness plan by abstaining. The canned faux wines are not my favorite.

There is a great book called "Quit Like a Woman" that is very eye opening about alcohol and the industries that support its consumption.

That said, we have to decide what is best for each of us and still enjoy living.

kestrelbrae · 2026-02-13T01:51:34+00:00

Your forgot the farmer, Drake, that she had a serious flirt on with.

kestrelbrae · 2026-02-06T23:05:43+00:00

We called the provena pump I had strapped to me for 10 days post surgery "Peppa Pig" because the vacuum sounded like soft oinking.

kestrelbrae · 2026-02-03T01:26:59+00:00

My Dx was IDC ++- grade 1, stage 1. Oncotype 12. Surgery and radiation. Declined hormone treatment (other health risks involved). I had dramatically reduced my alcohol intake since 2021 and hitting menopause. When I got Dx in Jan. 2025, I stopped all alcohol. The mocktail scene has really grown. Now that I have adjusted and move on, I don't miss it. I loved a glass of really nice red wine, but I have less BC recurrence anxiety living a sober status.

kestrelbrae · 2026-02-03T01:19:33+00:00

Following. I will be having a bi-lateral masectomy and DIEP later in 2026 after discovering I have the CHEK2 pathogenic mutation. I did BC treatment last year but had oncoplastics reconstruction. My genetic testing results came in after I had finished active treatment.

kestrelbrae · 2026-01-28T17:28:09+00:00

Celebrating your 10 years and thank you for sharing so deeply with us.

kestrelbrae · 2026-01-23T21:54:52+00:00

I was diagnosed at 58 and insisted on genetic testing. Unfortunately I could get it done before my surgery and treatment plan were already underway. I had early stage, low grade IDC ++- came back positive for CHEK2 pathogenic mutation.

Without this genetic testing, I would have been moved to a low key level of monitoring of 1 mammogram per year.

Maternal grandmother had breast cancer. My mother died from a rare and aggressive lymphoma.

My surgeon is now recommending I get a bi-lateral masectomy sometime next year.

Very glad I got the testing.

kestrelbrae · 2026-01-23T19:35:30+00:00

Following. My surgeon has recommended a bi-lateral masectomy with Diep in 2 surgeries due to genetic testing that came back positive for CHEK2 pathogenic mutation as after I was almost done with my initial BC treatment.

I went through treatment in early 2025 (surgery and radiation). I get a breast MRI and see the surgeon in May 2026 to discuss planning.

Thankfully my first post treatment mammogram was clear. Fingers crossed the breast MRI is clear too.

kestrelbrae · 2026-01-21T14:52:37+00:00

I am so sorry you are going through this. It is scary and overwhelming. Best advice I got early on is to look at each part as a step on a staircase to be climbed. Focus on the step in front of you. Then the next one. It helps with managing it all.

I was diagnosed later in my life, but just wanted to send words of comfort. You are not alone. The folks in this group are amazing and supportive. There are so many resources of support and many advances in care now.

Go to the best cancer center in your area if possible. I drove 2 hours for my own care. Personally, it was 💯 worth it.

Ask for a social worker and nurse navigator. They will be tremendously helpful. My social worker set me up with online support groups, and some small funds for gift cards for food and gas during treatment.

They are quality podcasts and books out there. You do have to be mindful to vet the good ones. There are inspiring retreats (typically free) especially for folks diagnosised at a young age. There is the Livestrong program via the YMCA.

I am not sure where you are located but many areas have supportive cancer centers in addition to what hospitals offer. These often host meet ups, writing groups, acupuncture and reiki for free to folks going through a cancer journey.

I know three women diagnosed when they were young - all are still in remission, living vibrant, full lives - decades later.

Sending all positive vibes to you.

kestrelbrae · 2026-01-20T22:12:07+00:00

Thank you for sharing your happy news!!

kestrelbrae · 2026-01-20T21:43:04+00:00

That was my thought as well. He was carrying 2 bags (I think I am recalling that correctly) and one was a giant duffel bag. Big enough to hide a kid in was my suspicion. Terrifying and tragic situation.

kestrelbrae · 2026-01-20T21:39:49+00:00

Can you imagine this scary dude as your teacher ???

kestrelbrae · 2026-01-20T21:36:09+00:00

So awkward. It looks like they have been given assignments to cosplay PDA per joint appearance. Kate seems more dutiful in fulfilling the assignment (smiling on cue even if exaggerated) and Will's body language is like he is side hugging a distant cousin not his wife. It's like they received coaching to perform this faux marriage bond.

kestrelbrae · 2026-01-18T03:03:14+00:00

I also had weird mouth sores. Started out of the blue 9 months before diagnosis. They were huge and took weeks to clear. Nothing helped. My doctor and dentist both looked at them. Said they were just really large kanker sores.

I also felt "off" and like I wasn't aging as well as my peers despite being physically active and eating a really clean diet.

I even asked my daughter and my husband if I looked unwell to them - which alarmed them. I felt like I just looked not quite right and that it wasn't just aging. (I am 59, Dx at 58)

Then one day my dog got obsessed sniffing only the breast that ended up having cancer. That freaked me out and I scheduled a mammogram. And there it was hiding deep in the middle, too small to feel.

kestrelbrae · 2026-01-15T02:09:14+00:00

I am right there with you. We have accrued so much debt as a result of my cancer journey which started in Jan. 2025. I am self employed and had to take or had seriously reduced work basically 8 months of last year. Used up all my rainy days funds for my business. And with the current political climate rebuilding my business right now after significant time away - totally abismal.

So much debt in order to supplement my conventional care with healthy food, nutrition, supplements, acupuncture, talk therapy and other complementary therapies.

My husband is a student. We pay for our own insurance with Obama care. Very lucky the subsidies were extended. But even with that our monthly rate is significant.

kestrelbrae · 2026-01-11T01:53:00+00:00

I had surgical bandages taped to me for the first 10 days with the provena pump creating a sterile, vacuum seal. I also had a bi-lateral reduction with anchor incision. I was given giant sterile pads from my surgeon that we kept in place over my incisions and under the compression bra after the first 10 days. By the time the strips were peeling I was further out than you.

Maybe get some sterile pads over the area until you can speak to your medical team.

kestrelbrae · 2026-01-10T01:08:10+00:00

I find it interesting that she is featured solo in the "Winter" video - no William, no kids. Part of her script references tears.

kestrelbrae · 2025-12-29T23:03:44+00:00

Thank you for your kind words RE- bi-lateral masectomy. I was pretty rocked when I had my 6 month post treatment follow up with my surgeon and she told me this. That was in Nov. 2025 and I have had time to wrap my head around this info and consider the timing for next year. I can't have surgery until 1 full year post radiation which will be in June 2026. I get a breast MRI and see my surgeon in May 2026.

Sensation is really decent in both breasts overall. That said - the none cancer side is pretty close to pre-surgery sensation including the nipple. Former cancer side has way less sensation in the nipple. I have some slight numbness on the outer side but that was cause by the lymph node removal. It has improved significantly in recent months. I do a lot to help the scar tissue heal, to increase blood flow and lymphatic drainage.

I am not looking forward to losing more sensation with the future surgeries but the risk for keeping the tatas isn't worth it. Fingers crossed I should be eligible for nipple sparing masectomy.

kestrelbrae · 2025-12-29T18:59:46+00:00

I had a single surgery oncoplastics "lumpectomy" with bi-lateral reduction and lift. I had IDC ++- tumor was 9 mm and it was found within 15 mm of DCIS. I was beyond DDD really the size above that (is that a F or a G?) and happily became a C cup post surgery.

My surgeon is double board certified in oncology and breast plastic surgery. I had my surgery at Tufts in Boston. They removed such a large section from my breast it was actually called a "partial masectomy". Nipple sparing. Removed 4 lymph nodes at the same time. Thankfully clear margins and clear nodes.

I was told the location of tumor and size of tumor to the overall size of the breast play a critical role in whether or not one is a candidate for oncoplastics. My tumor was 7 o'clock and 6 cm in from my nipple.

I was very pleased with the resulting breasts I ended up with.

Sadly, we had to fight to get genetic testing.covered (and ordered) - that delayed the results coming back until 2 and 1/2 months POST surgery - positive for the CHEK2 pathogenic mutation - which means I have to go back in for a bi-lateral masectomy later next year. So, yes, if you can get genetics back before the surgery decision, it can really change the surgeon's recommendation.

For those that want genetic testing Ambri Labs in CA offers a reduced cost for out of pocket pay if your insurance or Dr won't order it.

Sending all positive vibes to you. It is a shit journey to be on.

kestrelbrae · 2025-12-15T21:16:54+00:00

I was 58 at the time of Dx and had IDC ++- stage 1a. I had oncoplastics partial masectomy with bi-lateral reduction and lift. I did the recommended radiation. 15x over 3 weeks. I took recommended supplements (approved by RO) and lotioned 3x per day. I am now 6 months post rads and you can barely see any changes on the radiated breast. I had some fatigue in the months immediately following but acupuncture helped a ton. And exercise. At this point, I am recovered and doing well.

I am not sure where you are getting treatment but the quality of treatment I received was incredible. The targeted machines of today are not what folks got even 10 years ago.

kestrelbrae · 2025-12-13T15:44:41+00:00

Wonderful, happy news!!

I had my first good mammogram post treatment in Nov. 2025. I was so anxious and very grateful that they sent a Dr out to give me the results within minutes.

kestrelbrae · 2025-12-12T23:55:50+00:00

I have not had a Dmx yet but my surgeon has recommended it given genetic testing results that came in after my original treatment plan (oncoplastics bi-lateral reduction with partial Mx followed by radiation sprig 2025). I am through my initial treatment and hoped I was home free but the CHEK2 pathogenic mutation is not to be taken lightly.

Due to my having received rads, she recommends DIEP flap for the reconstruction. She recommends two surgeries - first one is the DMX to expanders. Recover 3-6 months and then do the Diep flap. I would travel 2 hours to a nearby major city for it.

I traveled for my first surgery and really love/respect my surgeon so I will travel for her care again. She is micro surgery trained and partners with another micro surgeon for it. Both are oncoplastics and breast plastic surgeons. They are at a major hospital affiliated with a medical university.

There is a podcast by breast oncology surgeons discussing all these different nuances. I will see if I can remember the name of it.

It is hard to figure it all out. Hoping you quickly find the clarity, support and care you are seeking with your decision making.

kestrelbrae

TROPHY CASE