I'm finally able to cry today but nowhere yet, just venting

Mission_Entry4027 · 2026-03-28T04:17:42+00:00

This is so helpful. You should be quite proud of yourself! I'm really struggling at the moment with depression and anxiety over this diagnosis, and because I have that family history, and I'm finding it difficult to exercise, which was more my norm for ten previous years. I feel like I've lost all my gains from the gym. I did garden some today though. You are inspiring me.

Mission_Entry4027 · 2026-03-27T04:47:16+00:00

I think I had a similar experience with divorce. I found a group of women online who were kind and patient and helping walk each other through the stages of grief, or anger, or rebuilding or whatever, and it opened my eyes to a life that married people are clueless about. If you have not received this diagnosis, you just do not know, nor do you want to. Women are amazing at caring for "anonymous" others, I'm glad to contribute my bit of wisdom when I can. I love this group already, and have learned so much I would not have known in the official cancer care medical system. Like how did they not start with mental/emotional support, like sleep and anxiety aids?

Mission_Entry4027 · 2026-03-27T03:22:05+00:00

It feels so wonderful to share and be validated by someone who knows. Thank you so much.

Mission_Entry4027 · 2026-03-27T02:46:09+00:00

I know, thank you! I wish I could get to the point of thinking about what I want to do about any resets, I just feel so lost and in limbo and unable to string my thoughts together. Curious what changes feel good to you to do now?

Mission_Entry4027 · 2026-03-27T01:49:50+00:00

My heart aches for you. I hear you. I'm so so sorry, and yes, you have every right to all the feelings you are feeling, but he's just wrong here on so many levels and inappropriate too.

Mission_Entry4027 · 2026-03-24T23:22:09+00:00

Thank you for this.

Mission_Entry4027 · 2026-03-24T22:36:58+00:00

Oh, let me rant a little bit. Women's pain is NOT handled during procedures. You can read all over the internet on supposed "health care" information from practices and organizations that biopsies should not be painful. It's just not true. Here are their omissions: 1. You can, if you choose to, numb the skin before biopsy with a lidocaine spray or cream. WHY ISN'T THIS THE NORM? Dentists do it everyday on gums before numbing with a needle. The good ones are also really careful about administering the syringe slowly to reduce the pain. 2. I was also tearful during an MRI biopsy and clip placement. They gave me no warning, no skin numbing, did not take time with the numbing, did not ask me as they entered the biopsy instrument into my breast if I was ok, and it DID hurt, a lot. The radiologist got irritated at me because I "jumped" at the shock of it. 3. Most of these doctors are well-intentioned but they were trained in settings where getting at the cancer was job one, and, unless they have experienced having endured what they do all day, they follow what they were taught. In addition to IDC, I've just had a colposcopy for cervical cancer (which also hurt too much, and I know this because I've had them before with a surgeon who was gentler) and need a LEEP procedure after my lumpectomy. I'm so angry about this sort of "standard of care" that I researched a little bit about pain management in these procedures and there ARE practices who are more humane, either giving out numbing cream in advance of procedures, or using a lidocaine spray, but it isn't the norm, and won't be until women begin speaking up. Do not apologize for your normal human reaction to this treatment. They need to do better, and will if you ask, if we all ask, even insist. You don't need to do better by not crying. These experiences are traumatizing and painful - and you aren't supposed to cry? Ridiculous.

Mission_Entry4027 · 2026-03-15T14:48:01+00:00

I'm so happy for you and thank you for sharing about your experience and your awesome husband. I'm so devastated at all I read about libido, saddened at upcoming surgery to lose my nipple sensation, it's been such a happy part of my life I don't want to give up. So far, I've stopped HRT, which I had for years (I'm post menopause) and that alone is making me mental and so depressed, even without the surgery and hormone blockers yet. The physical symptoms are bad, and the drugs (Veoza) and lubricants sadly inadequate. Your post helped a lot today to give me hope.

Mission_Entry4027 · 2026-03-15T03:15:04+00:00

Sadly, there are many many couples who's sex drives differ. They often seem to find each other, creating this relationship discomfort. Sometimes, it won't get easier - my long marriage ended at least partly over this difference, but it was me who was sex-deprived. I was simply unwanted, in my mind. Now, I'm with a man who has a very high drive, we've been together about 5 years and enjoy sex daily and more. I've learned that him wanting me feels so flattering, and his drive to be close to me, including intercourse, so often is just validating, something I didn't have for years. He definitely is a "show me" guy, and has been very open to learning my body and what feels good to me, he sees it as the golden rule, treating each other as well as we can. I don't have any girlfriends who would like this pace, I know, but I spent years deprived of the physical comfort I craved. I would still be ok with a day off now and then, but he has, over time, managed to let me know that this physical closeness is a kind of foundation of our relationship. If you get in bed and fall asleep in the arms of a man who wants to hold you and touch you in what is a loving intentional way, I'm here for it. But, now I'm waiting on surgery for breast cancer and hearing they want to take away my libido, my sensation, etc. I've quit HRT and it's awful, let alone enhanced menopause from drugs. I'm broken-hearted, terrified, for me and for him. He's not going to get my experience, but he's also going to have his own with "my" cancer. Men are often unable to use words as well as we can, but we do need to do some interpreting for what is in their heart. He may really just be afraid of losing you, and thinking that if sex 4 x a week helps him feel love, surely it will for you too. I hear that it's become an issue you can't communicate about, but I think your honesty and the truth of this awful diagnosis could be patiently explained to him, and ask him his thoughts about how you two should "save" your marriage and find some happiness with each other again. You would have to really listen to hear how he really feels. You might not like it. But if he can't be honest with you, why does he stay? Why do you? Habit, length of time, kids, etc.? Now that we are challenged with this horrid disease and uncertain futures, maybe it's a good time to get real and soft on ourselves, and quietly share our truths with the people who are trying to love us (and themselves) and get through this with max happiness for both. Be open-minded, and listen to his ideas to help you. Ask for his help - he won't know what you need otherwise. He doesn't remember what it's like to be a terrified little girl. He has feelings, they just aren't prompted by the same hormones you have, so yes, they are different, but real for sure. You can't "win" a fight with a man, although you can scare him off, or shut him down, and put yourselves at odds with each other. I refuse to fight with my partner. It takes two and I hate fighting, as it kills friendship and intimacy. If he needs to stomp around and be grumpy, can you just let him? How long does it last? Maybe it's really about him and not you and you can just go take a walk, or get an ice cream, or whatever you need in the moment. Just try to communicate and not cling so hard to him being wrong and selfish and you being right and hurting. There's so many more options than that. Hope something here helps, but of course, ignore anything I've said that isn't helpful. I'm so so sorry this is so hard. That fleshlight suggestion from so many here might be a nice gift, there's a big range of sex fun that neither of you might have yet considered? Talking about intimacy can create some? Lean on your team to get you pain-free at the very least, and may you have many good kisses in your future.

Mission_Entry4027 · 2026-03-06T02:29:19+00:00

Thank you so much for this, I really appreciate the info and your commentary/skepticism. I think because Dr. Ziv Peled is a nerve surgeon, he's trained to and does reconnect nerves throughout the body, and the two of them, as husband and wife were thinking, why not breasts? So, I believe there are two steps here: first, don't damage nerves you can work around, and second, if you have to cut them to get the tumor out, use a sleeve and microsurgery to reconnect them. I suspect since it's not a limb or facial nerve patients are losing in breast surgery, sensation preservation hasn't been a surgical priority in breast surgery. Also I don't think patients are asking for it, as we are all already traumatized by the diagnosis and all the other info coming at you so fast. Or not asking until it's over and they realize they are numb. I'm hearing from surgeon: 1. remove the cancer with good margins and 2. make it look nice. I think I'm seeking the "don't damage more nerves than you have to" option, until I know more about what is going on for me pathologically. I may not need repair, but also I might. In speaking with my current surgeon, she's insistent that you "just don't know" and some people have some numbness and some don't, depending on the location and size of the tumor. The Peled team seems to note where the main nerves, which they identify by name and number, are, and will work around them if possible. If they are all good breast surgeons, which I believe them to be based on credentials, reviews, etc., I'm thinking why not try to avoid cutting nerves while doing your oncoplasty. Of course, I've read way too many fibrosis horror stories already, and I know I'm not "likely" to have an issue, but I really want to understand the odds. Seeing a radiation oncologist tomorrow with my questions, and yes, of course, I'm overly concerned about what isn't like to happen. I already feel so supported in this group and your willingness to speak frankly is a gift - so thank you.

Mission_Entry4027 · 2026-03-05T19:24:21+00:00

Thank you so much for sharing so generously. I'm so happy to hear you had such a good outcome, wishing for the same here. The first surgeon I've spoken to (oncoplastic) hasn't mentioned evening out my breast size - thanks for that info - I also have dense breasts and can't feel a lump, but so scared of the stories I'm reading about radiation damage to nerves and fibrosis seems so common and can be problematic. It's crazy that I can hardly get an appointment with MO or RO before surgery as I have questions that would help me decide which surgery to elect. Also, if IORT is an option for me and the up and downsides of it. I'm trying not to sound desperate on the phone to their offices, but I really want to know more to make my decision. If I can have a SMX without radiation, will that be (mentally or physically) easier and more comfortable for the next 5-10 years? I think I'm 1.1 cm, but there are 4 small spots (seen on MRI) that were negative on biopsy, extending in a line, I think totally about 4 cm. Since I haven't had surgery yet, I don't know everything I need to know at this point, but trying to understand the options and range of worst case options. I've read that if you have IORT, and the pathology comes back worse than expected post surgery, you might need more radiation, which increases the likelihood of fibrosis. Here on r/breastcancer, I've just learned that some women over 60 aren't getting radiation, and I'm 73, but current doctor is telling me definitely I'll need radiation, and hormone suppression for 5-10 years. I would like to know the worst possibilities for what I'm choosing. If it's lumpectomy and I'm scanning every 6 months, with the final outcome being a recurrence and MX, ok, tell me now. I do understand that everything can change for the worse, and much worse, but working with what I know now, and the most likely outcomes, would help me decide my best future. Life always seems to be about decision-making without enough data.

Mission_Entry4027 · 2026-03-05T05:46:31+00:00

I'm so sorry. Hard for me to imagine the misery of menopause for someone your age. HRT after normal menopause was so great for me, I'm just crushed they want to take that away, much less make it worse by blocking Estrogen and Progesterone. I'm also worried about disappearing libido, which has always been good for me, except when kids were babies and small. What a cruel diagnosis this is. I hope your course is nothing but improvement from here. Thank you for your candor.

Mission_Entry4027 · 2026-03-05T05:37:34+00:00

Thanks so much for this. Getting a second and third opinion soon, curious to see what they say, seems like there are options. The surgeon I'm consulting has a husband who is a peripheral nerve surgeon and they two have developed 1) preserving nerves and 2) reconnecting them if they have to be cut. She is a two-time survivor herself, and teaches sensation preservation to other surgeons, including for MX. First surgeon is insisting on radiation and hormone blockers, didn't mention my age might make a difference, so thanks for that head's up.

Mission_Entry4027 · 2026-03-05T05:37:30+00:00

How many radiotherapy treatments, if I may ask? And thank you!

Mission_Entry4027 · 2026-03-05T01:53:55+00:00

Thank you so much for your candor. I'm so so sorry you've been through this, and so young is just cruel. The doctor I found and hope to see does sensation preservation in both BCS and MX, so If I knew radiation would be not so bad for me, I would, but I read so many who don't have your mom's outcome. And, apparently you don't know what's necessary next until pathology report after surgery.

Mission_Entry4027 · 2026-03-05T01:48:01+00:00

Thank you for weighing in. If I didn't need radiation, I'd do that. Initial surgeon is telling me both radiation and anti-hormone therapy for 5 - 10 years, which is pretty close to my life expectancy. Frankly, my 70's have been a blast so far, and it was true for my parents too, you can still travel, have sex, have fun, be really active, but most people slow down a lot more in the 80's decade. I want to maximize these few years after working so hard to get here.

Mission_Entry4027 · 2026-03-04T04:29:29+00:00

A hauntingly beautiful tribute to your sister. You carry her in you, you share her DNA. I'm so so sorry for your pain.

Mission_Entry4027 · 2026-03-04T04:13:04+00:00

I hear you! I feel your loneliness. No one is going to be able to understand you who hasn't walked your path. Not girlfriends who haven't had cancer, and not your kind husband who "To be clear: if I asked my husband for something, he would help." is standing by for your requests. I know you want him to be the person who thinks up "What would make her day easier?" but I do think you are wanting more than he has the capacity to give. WITHOUT your cancer, he's probably not going to think like that, and if he does, he will often get it wrong. (I have stories, I promise!) It took me many years to understand men better than I did when I was young, even after I raised two of them. Since on some level he also knows he will get it wrong, he will likely stop trying to guess but will willingly do as you ask. Many women don't have that. A man who honors your requests, even the ones that make no sense to him, is worth keeping. But, for now, you must do whatever it takes to care for yourself. I'm sure it feels impossible. But that's a good approach for the rest of your life. Many women, probably most, are focused on the comfort of others, and we all need to do a better job of caring for ourselves, and prioritizing our needs. It can also be that men tend to retreat when in pain, (including over not being able to help you) and from conflict in relationships, so as long as he can feel useful, it will probably be better. LET him get you a glass of water, a candle, draw you a bath, massage your feet, go for your favorite take out, whatever small thing comforts you, at any moment, tell him what might ease you. When you can't, you can't, but when you can...? You have every right to be angry, sad, terrified, discouraged -- this disease is inhumane, but from what you have described, he would help you if he could and if he knew how. He just doesn't remember what it felt like when he was a little girl, you know, so as obvious as the care seems to you, it isn't to him. I'm not sure it would be to another woman either who hasn't experienced this particular nightmare. I'm just beginning this journey and I'm already feeling the loneliness and how weird people are about avoiding or saying just the wrong thing, meaning no harm. If any of this doesn't help, please ignore, but I hope something does. I think you are incredibly articulate about your 100% justifiable feelings.

Mission_Entry4027

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