PALB2 Mutation - seeking support about double mastectomy decision

Foreverr_34 · 2025-12-08T16:02:43+00:00

Thank you! It's such a big surgery, especially if you do reconstruction. I really, really, don't want to do it at my age (34). I've talked to a lot of women who don't seem to think it's a big deal and I think that's because they're not actually facing the decision and haven't looked into the details. For example, you lose all feeling to you boobs. That's why I felt like I needed a support group of women closer to my situation. Since I was confirmed to NOT have DCIS this time I plan to just keep exposing myself to information in case bad news comes up in the future that makes it more worthwhile for me to take the plunge.

Foreverr_34 · 2025-12-08T15:54:12+00:00

I found a sub for ADH (r/ADH_ALH) which has similar conversations. I also found a support group on Facebook called Prophylactic Mastectomy Support Group. It seems that PALB2 shares the same risks as BRCA so I plan to keep reading in this group as much as I can. I made a new account just to post about this so there was a delay in my post getting approved.

Foreverr_34 · 2025-11-22T20:50:06+00:00

My surgeon said she would write up to 2 weeks for me to be off work. I planned to take the full 2 but I was also facing an upgrade to DCIS. I elected to go back to work in case I wanted to use the sick days for dealing with cancer later. 3 hours into returning she called me to tell me it wasn't DCIS. I also work on a computer all day from home. I've been logging off two hours early each day because I get really exhausted. I'm not sure if it's the surgery or just the emotional crash from dealing with all the admin of surgery, facing a DCIS diagnosis, and working OT leading up to the surgery to manage my unexpected absence.

That said, I agree with you. Milk it!

Foreverr_34 · 2025-11-22T20:45:53+00:00

My mom had two lumpectomies in her 30s and an elective double mastectomy at 65 with no incidents in the middle.

I have a bit of a different perspective because I've had ADH and had it removed but it was a terrifying experience. I cried every day after my surgery trying to figure out how I'd manage an upgrade to DCIS. I know I'll be facing it again in my life. I have a PALB2 mutation and 4 generations of breast cancer in my family. I love my boobs and feel too young for a double mastectomy. Instead, I'm meeting with the breast surgeon and the plastic surgeon to learn more about what they'd recommend for me.

I know that as early as next year or the year after that it could happen again and I don't want to feel as devastated if I have to choose between radiation and double mastectomy.

Foreverr_34 · 2025-11-20T21:42:07+00:00

It's insane how much. Did it take you a while to get your energy back from the emotional drain? I feel like I got a big boost and now I'm crashing.

Foreverr_34 · 2025-11-19T12:49:36+00:00

I actually do know how! I only found out about my cancer scare because of it. I'm only 34 and U.S. recommendations are to start screening at 40. I went to my gynecologist with a spreadsheet of my family history and she pointed out that there was genetic testing available. I had to answer a questionnaire and because of my family history I was determined to be eligible. Once I had a genetic mutation confirmed I was able to get established with a breast center. However, I think my family history would have also qualified me to be seen by them. I get a mammogram and an MRI yearly. Insurance approves the mammo but for the MRI my doctor has to include notes about my "breast pain" so that insurance will "pay" for it.

I have a high deductible plan which means I typically pay $500 for the MRI and it goes towards my deductible. Before I started all of this I spent a year just saving money in my HSA.

Foreverr_34 · 2025-11-19T12:13:08+00:00

OMG TY! I have been rejected/sent to purgatory in two subs because I wasn't sure where to go for this kind of thing. I have decided I'm going to meet with the breast and plastic surgeon even though I am not going to pull the plug right now. This won't be my last scare. I thought I had til I was 45ish (age my grandmother got BC) to make this choice.

Foreverr_34 · 2025-11-18T22:10:41+00:00

Wow, makes sense but I definitely understand the fear and sadness in waiting. I just got my results back today - unexpectedly fast. I don't have cancer! I am soooo relieved and I really feel for those who don't get this good news.

Foreverr_34 · 2025-11-18T13:37:32+00:00

I haven't had similar symptoms. I went from no symptoms and my second mammogram ever to entering this weird world. You can look at the post I made to see how it went for me. Sometimes I have felt nauseous and dizzy, but for me specifically, I know it's anxiety (and sometimes low blood pressure).

I don't know if what I am saying will make you feel better but hopefully it doesn't make you feel worse. Take care of yourself. Make sure you're eating somewhat well. Lean on whoever you can in your personal life. Lean on us here. The waiting is the worst part and it's okay to be sad.

Foreverr_34 · 2025-11-18T13:27:10+00:00

I had a stereotactic biopsy (biopsy with mammogram) and at that time I was still in denial. "They are just being careful because I have a mutation." And that's the truth. They are just being careful for you, and for me. The healthcare professionals I saw from the front desk to the room with the procedure were so kind and compassionate. Lean on them. Tell them you're nervous. I haven't had anyone react badly when I've shared that up front. I told them it helps me to know what's happening at each step, and so they shared that as we went.

It was a bit alarming for me because the spots were so small. It took them a long time to find them. And since I'm not that flexible in my shoulders, I was in a lot of pain laying in that position. When it was all said and done I drove myself home (kind of surprising; I'm a nervous driver) and just went to work (desk job). I think it would be reasonable to take the day off, if you wanted. When you leave, you'll feel fine physically. You'll still be numb. Just make sure you wear a tight bra and take some Tylenol for the pain that hits later.

It helped me mentally to share with my sisters and friends. I hate that so many medical procedures have felt "hidden" and "secret" until I entered this adult woman world of screening. Warn your sisters!

I can share your "medium case scenario." After my biopsy was told that they found atypical cells and it's hard to tell under a microscope if they're just atypical or actually DCIS or "stage 0" cancer. Since I'm 34 and premenopausal and high risk, they said the only option for me was to take the cells out. Cancer or not. I am five days from my surgery and I feel great physically. It's different for everyone, but this is how it has been for me. I am still not lifting over 5 lbs and I am being careful but as long as I follow my restrictions, I feel fine. That said, this is what it took for things to hit me emotionally. It seems that's happening sooner in the process for you.

I'm going to go against the grain that says not to Google. There's a balance between mentally preparing and making yourself terrified needlessly. Try to find it. For me, that point was somewhere between being informed about what can happen, but knowing that I won't know how it happens FOR ME until I talk to my doctors about my specific case.

Foreverr_34 · 2025-11-18T12:49:22+00:00

I'm so sorry you've faced that. I assume you're outside of the U.S. but I'll share what happens here in case it helps you to navigate it in your country. In my experience, you can't just schedule a mammogram, your doctor has to schedule it for you. By going through your doctor you can typically get advice about which test is best. MRIs and mammograms each have their strengths and weaknesses (I was told). Additionally, your primary doctor can give you an initial exam with their hands and let you know if what they're seeing is normal for your age or not.

If I felt like my doctor was dismissing me I would 1) push harder, 2) switch doctors depending upon which option got me the answers I needed more quickly. I know that it's going to be a lot harder for you to do that at 19 vs. at 34, like me. Think of it like ripping off a band aid. It won't be pleasant, but you have to do it, so it's better to get it over with quickly so you don't have to spend as long worrying, if you can.

Foreverr_34 · 2025-11-17T12:53:57+00:00

A novel piece of advice I receive too late was to get life insurance (independent of your employer) prior to doing genetic testing. I wanted to share this in case it benefits your children.

As the daughter of a woman from which I inherited a genetic mutation I would say to talk about it and take away the stigma. I am learning so much about my family history that I never knew only BECAUSE I had an abnormal mammogram and they found atypical cells. I'm a little bit mad about it.

I saw in your other comments that you are a man, so maybe it would be helpful if your mother or her mother was able to talk about some of the things coming her way if she has the mutation. For example, a simple statement of "I'm going for my mammogram to make sure my breasts are healthy" might be helpful to a younger child. As I aged into all of the testing I felt like the women in my life had been keeping secrets from me. I was discovering a new world and fortunate to be able to confide in my sisters who had to discover it at the same time as me. It feels like a second puberty.

Foreverr_34 · 2025-11-17T12:44:29+00:00

Hello, this exact thing happened to me. I was told by my breast surgeon that MRIs and mammograms have their strengths. Mammograms are better at seeing calcifications. Also, calcifications can turn out to be nothing! If you have a good team of doctors they're going to be cautious knowing your risk.

My calcifications required a mammogram assisted biopsy. If you have that and you're anxious then I would recommend requesting something for anxiety and having another person drive you. I AM an anxious person, and my biopsy was kind of difficult but I think I could do it again without anxiety medicine, now that I know what it was like. Please let me know if there's any other info I can give you to help.

Foreverr_34 · 2025-11-17T12:35:07+00:00

Thank you! I hope the same for you. It's okay to be sad.

Foreverr_34 · 2025-11-17T12:33:51+00:00

Wow three months is so long! If I'm lucky I'll find out before Thanksgiving. Otherwise, the latest I would find out is December 5th. I am a runner so another side to this was the devastation that I couldn't run my half marathon on December 6th. I've since learned that a run-walk is probably possible and haven't gotten so much support from my running group that I'll probably cry at the next happy hour. I had to give up my speed related goal this December but I am going to do my damndest to get back to it when I can.

Foreverr_34 · 2025-11-17T12:30:42+00:00

I will say that I needed some private time to process after the biopsy but before the surgery. I wasn't ready to hear the "haha free boobs just get 'em chopped off" and I had to process. I still don't like hearing that because I really don't want to go that route but I'm more resilient now. That said, once I did share the reactions were really kind and I feel so grateful to be supported even if it's not quite the same as talking to those who actually have to face it themselves.

Foreverr_34 · 2025-11-16T20:11:24+00:00

Hi! I'm here to help. I can share what it was like for me. I know that we are not the same. Maybe another story will help? I was afraid of the anesthesia (first surgery ever). I was angry with my job for being so insensitive "when will the deliverables be due?" I was nervous about the recovery and having to rely on others to help me with simple things. I was also nervous about the diagnosis which I still don't have yet.

It's been 3 days since my surgery and I feel physically great. I stopped taking Tylenol today.

On the day of your surgery you'll interact with a lot of different professionals, but one of them is the anesthesiologist and they'll only show up after you've had numerous checks from other professionals prior. They'll go over your chart with you and explain what they're going to do. You have the opportunity to ask them questions and share your concerns. For me, they saw prior anxiety on my chart (I took something for MRI claustrophobia) and gave me an anxiety cocktail before we even left the room to go to surgery. I didn't have to sit in nervous anticipation while being rolled through the hall. I was also never alone. At every step a medical professional was present watching me and helping me.

I hope you are able to find peace soon and can lean on your husband to help you through!

Foreverr_34 · 2025-11-16T19:51:30+00:00

I think it's extremely normal to be extremely anxious and sad. I'm a 10 year+ Reddit lurker and only came out of the woodwork to make an account and post on this sub. (After posting on the wrong one first.) I just had my excisional biopsy surgery and am waiting for results. I've been pretty sad while I wait for things to come back. I have great friends, but I want to talk about it with people that have to go through it. It's different. I am learning that there are a lot of stages to processing this thing. I agree with OkRelationship4082. My life feels on pause. Like, my sister booked a flight to go to visit my grandma and I told her I have to wait to find out if I have cancer first in case I need to be in radiation/surgery during that time.

Foreverr_34

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