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

Hello everyone, Thank you for all your comments, thoughts, and prayers. This has been a tough process and we hope to make it to the other side without being too broken. This thread has helped us a great deal. One person asked why I was on this website while the wife was not. Good point, I gave her my Username and PW. So now she can read everything and even post herself under one acct.

Some talked about their experiences and how they did. Many gave words of encouragement. My favorite was by MIR123. I really hope she realize how much her little paragraph help me and my family. I am so grateful that she took 5 minutes to write and not just continue past. After my wife read it, she realized that it is not all about her. True the bulk of the weight will be carried by her, it still affects us all and we still get say in what is to happen. This family of ours have walked together though some good times and not so good times. This will not be different. Following MIR123 example we now have a family meeting after Tuesday dinner. We update everyone on where things stand and we address any concerns.

Some gave words that were a little judgmental and hurtful. I was told to remove myself from the decision. I was asked if I thought I would get people to agree with me over my wife’s decision. If I was the one with cancer would I want to hear her opinion? On and on. The simple truth of the matter is I love my wife and would do anything for her. If I could remove her cancer and put it in me, I would do it without question. Men are the protectors, we are the rocks who pretend not to cry. We pretend nothing can hurt us. We try to show how tough we are so our family will believe that we can do anything through sheer will and grit. The truth is we are scared and the family will realize we are not as tough as we pretend to be. We are scared of life without our wives next to us.

The whole “My Body, My Decision” has taken on new meaning to me. It is such a lonely and isolating slogan. While the women defiantly has the overall control. It is not just her. Everyone else loses too. No one would put her health at risk. No one wants her to go through unnecessary pain. Everyone wants the stuff to go as best as it can. We all fight together and we all get a say.

Again special thanks to MIR123. A big thanks to everyone else. And I truly do hope you all come out victorious in your fight!!

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Did you notice how much you use "I"?

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I had her2+. Didn’t have gene and read her2 is not genetic.

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Speaking as an English teacher, it is just fine to say "I." It is necessary in first-person accounts. I find it also takes ownership of thoughts and feelings in an authentic way.

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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.

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@zeerj, I was diagnosed last July with a small HER2 positive and Estrogen positive tumor. I have not yet met someone with HER 2 diagnosis until just now when I read your post. I am going through one year of Herceptin. What has been your experience with Herceptin? My veins are small and nurses have difficulty getting a line in. So a few weeks ago I was given an injection of Herceptin Hylecta instead of the infusion. The injection was quick and easy but later my back experienced a massive flare of symptoms with a great deal of pain and stiffness. It has been partially disabling.
Would you mind telling me what your experience was/is with Herceptin and with tamoxifen?
I would be very grateful.
Thank you very much.

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Hello, I wish you the best! Did you do surgery, mastectomy? I was diagnosed last April with stage 2 as it has spread to lymph nodes. I had a port put in so no issues with veins. They started me with 6 cycles of herceptin and perjeta. The treatments were long as I was doing the cooling cap as well for hair loss. It would knock me off for about 11 days with bone pain especially lower body and nausea. During this period I would lose about 10lbs but would gain them back before the next infusion. They would give me the Neulasta with that as well. Had mastectomy on 9/27. I had some positive lymph nodes left. They removed 9 lymph nodes and 7 were still positive. Due to this, the dr wanted to do 14 cycles of kadcyla, going for round 6 on Tues. In addition, I did 15 rounds of chemo on the impacted side which happens to be my right side, last one was done 12/1.
I haven’t been on tamoxifen.
Also, I entered a vaccine study to prevent recurrence for her2+. I was qualified due to being on kadcyla. Did you have any spread of the her2 to lymphnodes? Wish you the best, feel free to ask me any questions you have. Like you, I was looking for her2+ folks when I was first diagnosed and there are some that have replied to a post I had looking for them. 🙂 I was looking for successful experiences especially during the period when I was on the emotional rollercoaster.

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Thank you very much for your helpful reply. You have been through a lot.
Yes, I had a mastectomy in August. I was stage 1, with no node involvement. Therefore, I was told I did not need to do chemo (although most do), and I am doing only herceptin and tamoxifen.

Have you had any issue at all with the port? How is it to keep clean? Are you easily able to shower, etc?

Last question, have you heard of positive experiences with HER 2?
Thank you again and I wish all the very best!

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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.

Jump to this post

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.

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