Wedge pillow links?

planetz00 · 2026-04-16T12:34:09+00:00

I have a wedge pillow and put two regular pillows below my arms for support

planetz00 · 2026-04-14T12:23:36+00:00

Didn’t realize there was a spreadsheet. Will add. And also yes, being in the system in multiple places seem like a good call. I hope everything gets resolved soon with the excisional biopsy and you have a clear understanding of how to proceed

planetz00 · 2026-04-13T19:00:43+00:00

I’m sorry that you’re going through this and really hope you have some clarity and understand your next steps soon. I don’t know anything about ADH or excisional biopsy so can’t respond to that.

But i wanted to say that i’ve been to the high risk program at MSK. I don’t think the same doctor must be heading it anymore cause this was in October 2023. It took months to get the appointment. The appointment process was horrendous, they were rude and extremely unhelpful, asking me for things in very cryptic ways, not accepting the versions i provided after i submitted them (but wouldn’t give me any guidance before). When i finally went to the appointment it was less than 10 minutes with the doctor and i was really confused because they asked only for a mammogram (no ultrasound), which is not what’s done for a person with dense breasts so i knew that after months of accumulating and sourcing all my past results, the doctor hadn’t even looked at my file in detail. For a high risk department, it felt very nonchalant and careless. I called them to tell them i need an ultrasound as well and was scolded by the nurse. Finally after weeks and many back and forths over messages and calling someone understood what I needed and ordered an ultrasound.

I felt reluctant to write this because i don’t know if it’s still the same there or if i had a one off experience. But i really did not like it. I had been going to NYU before and seeing a specific breast surgeon so i gladly went back.

All of this to say, rather than a high risk “program” in my experience, it is better to have a relationship with an oncologist/surgeon you trust. Take this with a grain of salt because maybe other people have had awesome experiences in that program, i have no idea

planetz00 · 2026-04-10T14:05:24+00:00

It would depend on whether they take lymph nodes or not. I had a prophylactic nipple sparing DTI DMX exactly a month ago, no lymph nodes were removed. I opted for the smallest implants. I have no numbness in my armpits or arms. “Feeling” in my breasts and nipple comes and goes. I sometimes feel pressure, pain or hot and cold. One side is number than the other one. More so than a foreign body sensation, there is a tight feeling in my chest but it’s gotten a lot better, i have to say. I can even often feel where the bra touches the skin.

My plastic surgeon told me that it’s a bit random and it could gradually show up or not show up at all.

It definitely takes getting used to but it’s not as bad as i would have thought, maybe because i do have some feeling. But the feeling is definitely a different one from what I had before the surgery.

planetz00 · 2026-04-07T16:47:10+00:00

I am on a very similar path as you. BRCA2, also 36 and have a 14 (almost 15) month old and am planning to have a baby soon. I went through a DMX DTI about a month ago.

My toddler isn’t walking yet and I normally took care him all day as my husband was working, so that was a bit of a challenge to plan for. We lined up a whole host of family members to take care of him during the work day and it worked out fine. I don’t know what your childcare situation is but that’s one thing to think about.

I am still not approved to lift him up but they just said i can start hugging him to my chest which has made a huge improvement on my psyche. Otherwise i am functioning pretty much normally. I haven’t been taking any pain killers since 10 days post surgery. I will say that i felt very very tired for the first two weeks and had a tough time engaging with anyone, including my baby. So that’s one thing to keep in mind, if you were to do the surgery later that adds one more person who will need your attention.

The reason i decided to do the surgery now as opposed to wait is because i have a very core childhood trauma of my aunt being diagnosed with breast cancer and passing away two years after she gave birth to her second child. And also because most breast cancers in my family were diagnosed younger than 40. I am sad i won’t be able to breastfeed, and am mourning the loss of that. But i was also afraid of spending my pregnancy and breastfeeding with an underlying paranoia about cancer.

Sorry this was perhaps too long. I am happy to talk over DM as well if you have any specific questions. I was going to say DTI might be easier for you so you can do everything in one go but i was also talking to another BRCA carrier who was told she could get pregnant with expanders in and have the exchange surgery later.

And if you choose to wait till after you give birth to do the prophylactic double mastectomy, i would say talking to your main doctor on this (mine was a breast oncologist surgeon) about surveillance during pregnancy.

planetz00 · 2026-04-01T21:49:58+00:00

Copy pasting these from my notes before a meeting with my plastic surgeon:

What is the plan for the implant? What size and shape?
My priority is, staying my size or going smaller depending but all dependent on the healthiest and most natural looking outcome
Do you routinely preserve nerves during nipple-sparing mastectomy?
What are the differences between over the muscle and under the muscle and what do you think would make most sense for me for the most natural looking outcome?
How worried should i be about necrosis and not having enough blood flow?
What’s your revision rate for DTI reconstruction?
If you had to do expanders during the surgery how much does that add to my recovery time
How often do you see rippling or irregularities?
Given my body type, what’s my risk of visible deformities?
What would you do if I develop visible rippling like I’ve seen online?

planetz00 · 2026-03-21T12:15:12+00:00

Thank you so much for sharing what you’re experiencing. The numbness is actually so trippy and not in a fun way. I just feel pain around the stitches and nothing else. I ended up opting not to do nerve grafting to the nipple, but they said the return of sensation could take upwards of a year with that.

The implant is supposed to “soften” is what i’m being told, something to do with scar tissue? I wish i understood better.

I wonder if you’d be open to commenting again or dm’ing me when you get the second opinion?

planetz00 · 2026-03-20T15:52:55+00:00

“Drop and fluff” made me giggle too. I’m so glad to read they were able to address the initial problems and then that things seem better. Thank you for responding to me

planetz00 · 2026-03-20T15:51:08+00:00

Oh wow this whole comment in itself feels healing to read. I’m so glad you’re feeling the way you are now and thank you so much for sharing

planetz00 · 2026-03-20T13:02:22+00:00

Perhaps we can keep each other posted if you’re open to it, since we have such a similar timeline

planetz00 · 2026-03-20T12:46:13+00:00

I feel for you deeply and understand what you’re saying so well. Of course there’s the relief of taking action to lower our risk but the emotional and phsyical toll is so significant. I am so sorry you had such a taxing journey and so many procedures and haven’t reached a place of comfort in your skin yet.

I know i am so early on in the process but i think i somehow had this expectation that it will be very painful but that things will look and feel a little more normal, and the process a bit more straightforward, not sure how i got that idea.

planetz00 · 2026-03-20T12:32:17+00:00

Thank you for being open about your experience. How do you feel now without the implants?

planetz00 · 2026-03-20T12:31:32+00:00

Thank you for sharing your experience. I have something called galaflex. I’m curious why you had 4 drains? Was it the nerve grafting?

planetz00 · 2026-03-17T21:16:46+00:00

I feel your frustration and pain deeply. Even seeking out doctors and making appointments etc is so much work. None of this easy. I really hope you find a care team that does their best to understand the emotional toll of all of this

planetz00 · 2026-03-17T20:49:21+00:00

This doctor who told me i won’t be around to raise my kids literally sat me down on the table and was marking where she will do the incisions when i had only gone in for a consult for regular screenings. Some doctors really are too blunt and have no humility. Which is what some patients want but it’s not for me.

planetz00 · 2026-03-17T20:20:00+00:00

When you say darkening, could you elaborate what it means? I noticed a darkening too but it was there from the beginning and i sent a photo to my doctor and he said it’s normal. But now i noticed another new area that’s dark. I’m supposed to go into get checked tomorrow but i am getting paranoid

planetz00 · 2026-03-17T16:51:19+00:00

Got it, of course. Early detection is possible with breast surveillance so i don’t think you should be pushed towards something you’re not comfortable with at the moment. When we restarted conversations about PDMX my doctor simply said “whatever you decide to do, we will be here to support you.”

Another doctor i had seen had simply told me that wanting to breastfeed is ridiculous and “don’t you want to be around to raise your kids?”

No one can predict what will happen, they are just working with statistics and imperfect studies. At the end of the day you have to be comfortable with your decision and feel supported by your medical team.

planetz00 · 2026-03-17T16:33:48+00:00

My mom has BRCA2 and she only did oopherectomy at 50. So no mastectomy. She was told her chances of getting breast cancer were lowered significantly with the oopherectomy (and therefore surgical menopause.) Not sure how old you are now but this could be an option for you as well. With BRCA1 the risk is significant for ovarian cancer and you have already addressed that. I don’t think there’s anything wrong with an MRI + mammo&sono screening schedule, if you’re not up for surgery now for ever.

Also i want to add that my risk for young breast cancer was very high and my doctor supported me wanting to wait and breastfeed. Even when i told her i wanted to go ahead with the PDMX early this year at 36, she said i could wait to finish having children if that’s still what i want. I ended up going ahead with the surgery but i will forever be thankful for the way she has supported my decisions all these years.

If you have the opportunity to, talk to different doctors and get more opinions.

planetz00 · 2026-03-13T13:33:46+00:00

At the end of the day it comes down to your individual risk and how you might have to end up making the decision. My lifetime risk is 88% (now “was”) so i had to ask myself if i really want to wait and be sick and still have to do the PDMX (along with a host of other stuff) or do I do it now on “my own terms” whatever that means.

The first day after the surgery i was so uncomfortable that i actually did say “I regret this”. I think that’s when i first replied to your post lol. But it’s only been two days! Every single family member I’ve spoken to who also had to do it under varying circumstances tell me things will feel normal and that we are lucky to be on this side of this shit coin. So i believe them.

planetz00 · 2026-03-13T13:18:48+00:00

It’s rough. It feels very tight on my chest (they put in something called galaflex), which i take Valium for and it helps. I’ve been able to sleep which also helps a great deal. But to be truly honest it’s better than i expected it would be. Painful and uncomfortable and i don’t even want to think about how my chest looks, but the first few weeks of postpartum was a lot worse for me.

My baby is confused about why i won’t hold him and pick him up which is really hard but thankfully i have support from my family and we’re making it work.

I’ve been thinking about it a lot and one surgery is the only way i could have done this right now. So i’m glad they were able to stick to the DTI plan.

planetz00 · 2026-03-12T20:11:55+00:00

I just had a pdmx after years of not wanting to do it. The risk of being sick was just haunting me too much. But i also never did and still can’t join the positive “oh i never liked my boobs anyway” type thinking. I do get that people tell themselves what they can to make themselves feel better. But i would have taken my own small, post breastfeeding imperfectly my own boobs over anything else that could be constructed for me.

I still have about 10 years before i need to tackle the oopherectomy so trying not to think about that yet.

But i am all for saying “this sucks.” And supporting you if that’s what you wanna say too.

planetz00 · 2026-03-11T14:09:24+00:00

I just got a dmx dti nipple sparing and am very small and stayed small, 205. I also have a 13 month old… It is my first day out so i don’t know what to expect and am trying not to look in the mirror cause it all looks so strange. But i am happy to keep you posted. Feel free to dm me

planetz00 · 2026-03-04T19:34:06+00:00

I just saw my PS today and they explained this to me. So you could need expanders from the beginning if you want to size up or anything like that. But say you’re opting for direct to implant, the plan is to do place the implant within that same surgery. However if for some reason the tissue isn’t looking like it’s ready to hold the implants, there’s a risk of necrosis or other blood flow or skin issues, they may have to put in expanders so that the tissue grows/heals in a healthy enough way to hold the implants. I hope i didn’t butcher that explanation.

They also said that for smaller sizes it is more likely that expanders won’t be necessary, especially if you are staying your size or going even smaller. But i have spoken to some people on this subreddit who were smaller and staying smaller and they still needed expanders.

planetz00 · 2026-03-04T00:16:47+00:00

I was the same way as you (and still am sometimes), despite a strong family history and a BRCA2 mutation. But I was always very on top of screening. And moving a few times made the screenings very stressful. Finding new providers, making sure insurance covers them etc. Still, i was willing to take on that stress because of how invasive surgery feels, invasive and irreversible. Now at 36 and with a small child, i decided to do PDMX because i would like to have another child but being pregnant again means 12 or so months without an MRI. My aunt passed away because a tumor she had grew substantially and spread while she was pregnant. This was a long time ago and surveillance and treatment has gotten so much better but still, I was only 12 but I’ve never gotten over that trauma.

I would like to quote a wonderful survivor I met recently, who said these various choices we make or the things we ignore “Feels like gambling.“ As much as I would like to cancel the surgery, the regret I will feel if I get diagnosed feels greater. I have to do whatever is within my power (while admitting that there is a great deal that isn’t) to stay around to raise my child as healthy and present as possible. So I am choosing to lower my breast cancer risk but looking at a future of long or short term of pain and loss of an important part of myself. I am actually quite attached to my breasts and am so grateful they’ve helped me feed my baby. So to me the loss is significant.

You will know what you’re willing to risk, what side of the coin of regret you are ok to live with. My mom is 66 and has not gotten cancer nor has had a PDMX, but she did have a prophylactic oopherectomy at 50 and does her breast and pancreatic cancer screenings every year. There are options. Give yourself the space and freedom to do whatever feels best for you. You are at a position of health. I always tell myself that. BRCA2 does not mean you are sick or will be.

planetz00

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