My journey as a husband supporting my wife’s mastectomy decision

@gpigford, I appreciate your returning to share how this discussion has been helpful, and sometimes hurtful, and that you, your wife and your family have taken the nuggets that strengthened you and your resolve to do what is right for your family.

I'm tagging @mir123 to make sure she sees your post and your gratitude.

I honestly believe that everyone reading and participating in this discussion has the opportunity to learn from it. While the shared diagnosis is breast cancer, the decisions and our stories remain unique.

I had a right mastectomy 30 years for ductal carcinoma. Because of the size (between 1-2 cm) I only got one recommendation- mastectomy plus chemo for 6 months. Hormone receptor negative.
I got a second opinion at Sloan Kettering- agreeing with treatment plan. I begged the surgeon to remove the other one too. Couldn’t do that then.
Once a year I’m having a nervous breakdown when it’s time for mammogram.
I was negative for BRCA1 and 2 and no history of any cancer in the family.
One of my daughters was by chance included in a study that included testing for genes that now are known to be associated with an increased chance of breast cancer. She tested positive for a mutation called CHEK2. Not common at all.
I just had genetic testing done to see if I had passed it on. I did not have the mutation, probably from my husband’s side.
This mutation is also associated with an increased risk of breast cancer in men as well as colon cancer. I have another daughter and a son. I have to tell them about their possible risks. The girls also have the obvious increased risk because of me.

This is going to be long and I’m sorry for that but right now I’m spiraling down and don’t know where else to turn.

A couple months ago my wife was diagnosed with breast cancer. Things got crazy busy fast. Many doctors appointments and tests in a very short amount of time. I jumped in with both feet. She wasn’t going to them alone. I went to ever one of them. I was going to be the best husband and supporter she could ask for. We were going to do this together and I was fully committed.

Last Tuesday was the last appointment before meeting with the main surgeon. We had a mountain of information in binders. I wrongfully thought that this meeting was to go over all this information and ask final questions. Get our facts straight and our options laid out. We would go home and lay it all out on the dining room table. We would Discuss/Cry/argue/hug through everything we learned. Lay out the pro’s and con’s of the different options between mastectomy (double v. Single) and lumpectomy, plastic’s v. flat, etc, etc. I was grossly wrong. During that final doctors appointment my wife informed the doctor that we are going with a double mastectomy with plastic’s nipple persevering.

I found out the same time the doctor did. She didn’t even give me advance notice. I was crushed. I went con tonic. I just sat there without even being able to talk. I was numb. I felt so betrayed. We did this whole journey together and in the last moments she just cut me out because she knew I was favoring lumpectomy. She wanted to ovoid opposition so she just cut me out.

Now I know she is the star of this show. I know the ultimate decision was hers to make. I love her and would have supported her in whatever she chosen. But we were both in this together and she just took my voice away. I now will never get to find closer in this tour of information gathering. I was silenced and tossed aside because things may become hard and she dint want to deal with that.

It is eating me up inside trying to process what happened. I was spiraling out of control so that Thursday I called out of work and asked her to call out too. I thought we could spend the day together at the beach. Enjoy the day doing breakfast and lunch together. No cancer or diet talk (I’m over weight). Just us take a small mental break. She said no. I was crushed again. In shock really.

Well, instead of a day away from cancer, I spent the whole day obsessing about it, alone. I was sinking fast. That day was the darkest day of my life. I have never felt so alone and isolated like that. And while I know she did not intend to hurt me, she did like never before. We have been married 30 years and I felt so betrayed, I cried so much and couldn’t stop. My mind raced in a 100 directions. I work in the medical field and though rare, I know mistakes happen. I wanted a second opinion on the results. I wanted a repeat MRI. I wanted to know what would be the treatment plan if the cancer returned in future. I wanted her to see someone to make sure she wasn’t making a knee-jerk decision. I know the results were going to come back the same. I knew my request were not going to change this, but it gave me a some feeling of hope back in a time when I had none. I was reaching for something, any small light was better than what I had that day.

I was shocked, Nancy said no to them all. She was so cold about it. Yelled that it was unnecessary and would not change anything. It would not delay any timelines. The wheels were already in motion to get surgery scheduled. It would cost very little in the big picture. But it would have helped me come to terms with what was happening. In the lowest, darkest moment of my life, My wife just abandoned me to the darkness. After weeks of supporting her, holding her hand, I needed her to help me, hold my hand, support me. And instead she just abandoned me.

Now I know she loves me and had no ill intention. I don’t question that at all. I know she is in a much bigger whirl wind than I am. The emotions that she is feeling are much deeper and extreme than what I am going through. I know all of this. I know I should cut her a break and just let it go. I want to, I’m just having a hard time suppressing the feelings from surfacing. It is killing me because she can see it and then she feels bad. I’m not trying to add to what she already has to deal with. So than she resists talking to me about her anxiety’s to avoid adding to my baggage. Funny when you think about it, this all started because she didn’t talk to me.

The last thing I wish to say to all the sick people out there. Your caregiver/support team/family are here for you. We know you are the star. We know you carry the greatest burden of us all. But we matter too. Fear, anxiety, worry is not exclusive to you. We are impacted too. Support is not a one way street, it is a living breathing creature. No one wants to be here. No one wants you to go through more than you have to. Show them that you appreciate what they are going through as well.

Again, sorry so long.

Hi. I found my lump at the beginning of covid. I didn’t have a choice about a double mastectomy because they shut down elective surgery. I wanted it. Fast forward almost 3 years and I am still waiting to have the other one removed. It is fear driven and symmetry driven.

All the best!

@gpigford

One of the great things about this message board is to have a safe place to share your thoughts and concerns, looking for or giving thought and encouragement. One of the more difficult things is to put a tone to someone's words when we are only reading words and not seeing body posture and hearing the heart of the other speaking in real time. There are many other ways to communicate our intentions.

I want to say I'm sorry if what I shared was hurtful. It was not meant to be. What I read in your initial post was a man who hurt for his wife, wanting her to make the right decision, with his primary concern being the sexual function she would lose with a mastectomy. Forgive me if that was not your intention, but it is what I gathered from your post. Of course you love your wife - but it was in the why of your hope for her that caused me to speak so openly and honestly.

Our husbands have no easy task - supporting a wife with breast cancer. My husband and I often talk about how his journey was so very difficult as well. (still is, as we move through the aftermath even years later). I am not a girl-power sorta woman, who does not seek her husband's counsel; in fact, just the opposite. I would have loved for him to make the decision for me on what to do. It was extremely difficult to have to decide. . . but his support outweighed his decision for me. Ultimately, I had to make the decision, my husband could not . . . and of course, I wanted to make the RIGHT one (whatever that would be). His thoughts mattered greatly. And I needed his support, regardless of what the final choice would be. When I said the choice must be your wife's, it is because she will have to live with the the results of the choice. I'm thinking about the decision of marriage. . . even that is an individual choice. It affects two people (actually, many others), and yet one person cannot make the decision for another. It must be done within an individual person's heart, mind, and spirit. I'm not sure if that analogy helps, but it's what comes to mind when I'm explaining this individual-choice thing.

A woman's choice is not all about her. . . it affects everyone who loves her. I have 14 grandchildren, so I truly understand this. I'll be married 40 years this year. . . and my husband is my best friend. I ached for him to decide for me. . . but I had to walk that decision on my own, after all of the input had been given. I could not let him carry the burden of a choice-gone-wrong if he had made it, nor would I blame him for influencing me in a way that I regretted. We talked about it fully, gave each other space to deal with what was ahead, and then we forged on - together.

Again, forgive me if I misunderstood your passion for a path based upon sexual feelings and experiences. My hunch was and is that she understands the weight of the cost (with a mastectomy). And she realizes it will affect you both.

I pray you all do what is best for you both. Sometimes it just takes time to uncover what that is. And of course, tensions might run amuck while you attempt to uncover it . . . but I firmly believe "love covers a multitude of sins" (I Peter 4:8). I could not have made this journey without the loving support of my husband. His feelings and his thoughts matter.

Hope this helps.

@gpigford you posted previously about conflict between you and your wife, and your preference for a lumpectomy. I am sorry but once again, my main sympathies are with your wife, whose need for autonomy in these matters is crucial.

I am currently helping a dear friend who just had a mastectomy and has decisions to make about treatment. She is ill with something else and I am trying to think hard about the best boundaries for me to have, how to help and not overwhelm.

So it isn't like I don't understand the impulse to have input, or lack sympathy. It takes work, but we need to honor the path that our loved ones choose, not the ones we want. And many of us want mastectomies, including bilateral ones.

I went through breast cancer alone, and didn't have to deal with anyone else. I understand this is complicated. Again, I suggest you get counseling.

Thank you. I try not to think about it excessively but that doesn’t always stop.

You’re quite welcome
I have to have my left breast biopsied again
After
My MRI I’m hoping to just be sure ? I dunno I had it biopsied before
Perhaps making sure if their going to remove a tumour from the right breast may as well
Do the right too?
Awful how it catches up with u during the
day sleeping poorly- insomnia and hot flashes since I’m
Not on the Wiley Protocol anymore - I think I fed the tumour
Oh well it sure was good at the time for menopausal symptoms
I rhankyiu so

I’m sorry, maybe I am not doing a good job of explaining why I am here and things are coming across wrong. I’m not looking for anyone to “take my side” or tell me that my wife is a bad person for not doing what I want. I’m not looking for validation of my feelings. They are my feelings and I am confused by them. I know that they are not all rational. I’m scared from me and her. I’m confused by everything that we are going through. It is a roller coaster of emotions for both of us. I know I don’t want to grow old alone, and I’m pretty sure she doesn’t want to die. We had plans for the future and they are all looking so far away right now.

This support group for me is a pillow for me to scream into when nothing seems to make sense in the world. I hope to find out that we are not the only ones that are going through the emotions we are going through. To hear from others that may have words of encouragement help us understand why this is happening to us. It is “us” not “her”. If I wanted to just have someone tell me I’m right, I would go to my friends (I do that too by the way, because, sometimes I do just need someone to take my side). If this is not what this group is for than I misunderstood what this is all for.

I agree I am not seeing this from the same angle as she does. I post on the “Breast Cancer” forum rather than the “Caregivers” forum because I want to hear from people who are standing in her shoes. To help me understand her point of view when she may not be able to tell it to me.

I am sorry you went through it alone. That must have been very difficult. We have a full support group and it is still difficult. I could not imagine a woman doing this solo. Keeping it all straight and not going crazy must have been very challenging and scary.

I also wanted to mention that my wife has this account username and PW. I encourage her to log on and read what I write and even post her own stuff. She doesn't, I don't know why. She just seems to keep everything bottled up until she pops.