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

Posted by gpigford @gpigford, Jan 19, 2023

So a little history. My wife sister died of Breast cancer 25 years ago. It was a second occurrence for her. Now my wife was diagnosed 2 weeks ago. Single tumor 3.5 cm stage 1. Genetically negative. No other signs of any spread. Doctor said we caught it early and suggested a lumpectomy. Fast forward 2 weeks, countless doctor appointments and mountains of information. She has decided to go full tilt and do a double mastectomy. So 4 doctors and her husband suggest a conservative approach. All the research seems to put lumpectomy ver mastectomy on a level playing field and she is hitting it with everything.

Here is my dilemma , I don’t agree with her decision. I get she is scared and tired of 25 years of worry. I understand she just wants to get to the finish line. I just think she is making a rash decision and not looking at it objectively. And I get she is not really in a state of mind to make a clearheaded decision. I feel that is where I come in. I’m the stats guy. I’m the one who can look at things from a few feet back. My job is to be the rock through this. The support when her knees give out. Every time I try to talk to her, the claws come out and she goes into a full frontal assault accusing me of not respecting her body and her decision. That is not what I am trying to do. All I’m saying is a lumpectomy can become a mastectomy, but a mastectomy can never become a lumpectomy. It is a one way street. If two years from now she gets off the emotional roller coaster she can be making a life changing decision. She will never grow them back. She will lose nipple sensation forever. Without nipple sensation she will most likely never have another organism. She is giving up everything because right now she is afraid of the future.

Sorry to have rambled on but I just don’t know how to support something that I think is a fundamentally rash and wrong decision. Anyone insight is very appreciated.

Interested in more discussions like this? Go to the Caregivers Support Group.

Reine (Reen Carter) | @reine | Jan 24, 2023

In reply to @reine "I’m “walking this path alone” too. I am afraid of making the wrong decision." + (show)

Oh Auntie Oakley! I feel much the same in that I am also afraid I will make
the wrong decision! Thank you so much for your message. Maureen

Chris, Volunteer Mentor | @auntieoakley | Jan 24, 2023

In reply to @reine "Oh Auntie Oakley! I feel much the same in that I am also afraid I will..." + (show)

Oh, we all fear making the wrong decision. But I have learned to say to myself that I am going to make the best decision I can with the information I have and that is all I can ask of myself so, no beating myself up over it. When I decided on my initial rounds of treatment, I used all the latest information I could find, but 18 yrs. later that information is mostly obsolete at worst and inadequate at best. No one’s fault we just know more all the time. Have you or @celica visited any other threads in the breast cancer group? There are several that can be helpful in preparing questions for your doctor. This can really be helpful in decision making.
Do you have a support system of friends or neighbors to help?

Reine (Reen Carter) | @reine | Jan 24, 2023

In reply to @mglinkhart "Where are you located?" + (show)

Hi, I just responded to your email. Thank you. I’m in Arizona wishing I were home in Boston close to family. I think I managed to answer your questions or I might just have talked too much. I had a bad experience in finding out but have to feed my dogs… thank goodness I’m not totally alone! Thank you again.

Reine (Reen Carter) | @reine | Jan 24, 2023

In reply to @auntieoakley "Oh, we all fear making the wrong decision. But I have learned to say to myself..." + (show)

This is my first day here! I work at night at home writing. I don’t have a close support system mostly because my husband died about three years ago, my cousin died, my stepson has a brain tumor…. but I have friends and… whew I just suddenly found myself alone after family losses and distance from my hometown. We seem to be on overload. I do live in a close nit community however and I can get paratransit rides as I have epilepsy, and I have a great service dog 🐕‍🦺 Fitbit with a puppy Abby I love who I’m training to be another service dog as Fitbit grows older. Missing my husband is the worst of my losses. Knowing what to decide when I’m able to get a referral from a new MD in the right location I think I will be less worried and less feeling alone and have hope to make the best choices as they arise. I do like writing and have switched from research as I retired. Now I write, and that at least keeps me working setting my own pace. Reine/Maureen

Reine (Reen Carter) | @reine | Jan 25, 2023

In reply to @colleenyoung "Welcome @reine, please note that I removed your personal email address from your message. Mayo Clinic..." + (show)

Thank you Colleen. I had to find an MD who can refer me to a local treatment clinic I can get to. I had testing but hopefully (as needed) I can be referred to the hospital near me. My husband had cancer and had excellent help and treatment. I didn’t know this was open to all and I might find it difficult to determine how to find the correct place where I can safely write using your directions. I don’t know how to tell the forum from the other. Are there titles to follow? I would like to do this correctly and safely. I thought my comments were done properly because of that for example I thought my email was private. So… thank you for privacy as needed explained to me. If I can’t write better within the system I’m concerned that I might be afraid to write/comment. I read your instructions above here which are well done and clearly written but I’m not quite sure I understand regarding how to tell one I’m sure I can learn however but but thought email would secure private messaging as a function. I’m sorry I did that incorrectly but like here I can’t see how to end it. How do I close this off so you can read it properly in the right place. Thank you for the explanation. I will do my best.

polianad22 | @polianad22 | Jan 25, 2023

In reply to @gpigford "Last night was another big blow up. I wanted to do something spontaneous, we both call..." + (show)

Please honor any decisions that she makes. My husband wanted lumpectomy for me, but I chose mastectomy and I am extremely pleased with my decision. We don't have any right over somebody's else body. Just be gentle, kind and present. " I am here for you anytime you need me to".

polianad22 | @polianad22 | Jan 25, 2023

In reply to @rhongirl "@gpigpigford Lump vs mastectomy. Stuck between her choice and what I feel is best I'm going..." + (show)

@rhongirl

@gpigpigford

Lump vs mastectomy. Stuck between her choice and what I feel is best

I'm going to try to say this kindly. . . . You are finding yourself "stuck" because you placed yourself there, in between your wife's decision. You can get "unstuck" by removing yourself from the decision, and offering your thoughts when and if she asks you for them. I hope this is helpful, but it is as honest and forthright as I can be.

A dear friend of mine lost her breast cancer battle today. . .and one thing she said to me (after I was diagnosed with breast cancer), was that she wished she had made the choice for a mastectomy instead of lumpectomy. Her breast cancer metastasized, and she battled against it for four years until today.

Every woman understands the weight of the choice she must make. She understands the loss of sensation of the breast. She understands her own sexual pleasure. These are things you do not have to go-to-bat with for her. She understands. It's her body. She has those sensations. She knows the gravity of the choice she has to make. Please, let her make it.

I had the choice of a lumpectomy or a mastectomy. I chose the double mastectomy, and have not looked back. I am able to sleep at night because I no longer have the ducts in my body. Though I endured chemotherapy, I spared myself the radiation, and I no longer need mammograms. It was the right decision for me. It may or may not be for your wife. But the point being, is that she needs to make that decision.

Sexual stimulation and pleasure are part of the human experience. But it is not the only thing that defines love; in fact, it is very little in the whole of loving someone. Love your wife, sir. Share your thoughts, but love her enough to support her decision. And love her (and her body) when the decision is made. Your wife is more than breasts and nipples.

I hope my very open and raw response in some way helps you. There is more at stake her than just her physical body. She will travel through much . . .through physical, emotional, and spiritual challenges. You can help her greatly by walking alongside and loving her fully.

Jump to this post

Beautifully said!!

Colleen Young, Connect Director | @colleenyoung | Jan 25, 2023

In reply to @reine "Thank you Colleen. I had to find an MD who can refer me to a local..." + (show)

@reine, you're doing just great. Here is the link to the
- Breast Cancer Support Group https://connect.mayoclinic.org/group/breast-cancer/

The most recent discussions are listed first. You can browse through existing discussions and join in. If your topic is not being discussed, you can start a new discussion.

You and others might also be interested in reading these articles:
- How to comment, reply, like, bookmark, and more https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/how-to-comment-reply-like-bookmark-and-more/
- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

Reine (Reen Carter) | @reine | Jan 25, 2023

In reply to @colleenyoung "@reine, you're doing just great. Here is the link to the - Breast Cancer Support Group..." + (show)

Thank you. I'll be back.

gpigford | @gpigford | Jan 25, 2023

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!!