My journey as a husband supporting my wife’s mastectomy decision
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.
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Did you notice how much you use "I"?
@gpigford I hear your voice loud and strong. It's OK to use "I" throughout your posting as you were referring to your perceptions, your reactions, and your anxiety about your wife.
My partner is a retired pathologist. He questions and second guesses many things but especially anything medical. This is an excellent quality for a pathologist and I definitely want these qualities in a pathologist who is reading my slides. But in a partner? It can be maddening.
When my provider found a tiny growth in the vagina during one of my cancer surveillance visits both she and my partner said that it did not "look" like cancer. (I was diagnosed with and had treatment for endometrial cancer in 2019). But of course the little growth had to be sent to pathology and examined under the microscope. The diagnosis was recurrent endometrial cancer. I was shocked when I heard "cancer recurrence". My partner questioned (and continues to question) whether the sample that was examined in pathology was actually my sample. The gross description, he said, did not match my sample. He wound up talking with the head of Anatomic Pathology who he knew and who was refreshingly open to taking a second look. He did and the diagnosis was the same. In the meantime I was on my way through a flurry of appointments getting ready to treat the recurrence. My partner came with me to every appointment and brought up again and again whether or not the sample that was examined was mine. Or was there a mix-up? It happens, he said. Can you imagine the anxiety I was already feeling about the recurrence and then my partner questioning all of this? Of course I am very happy to have him in my corner. But what was I to do? Refuse the recommended treatment and insist that pathology examine "my" sample again and again? Should I go along with the pathology report as it stood or ask for another opinion somewhere else?
In the end I followed the recommended treatment of radiation therapy for the recurrence. That was in 2021. It is now 2023 and my partner brought this up again a few days ago. It's over and done with. It doesn't help that he brings this up while I still cannot shed the worry about what will come up next?
I can only go on what you have written here, @gpigford. I can identify with your wife who is likely very frightened and wants the cancer gone and out of her body with surgery. I can also identify with you trying to be by her side and help sort through the mounds of information to make the best objective choice. But here's the thing. The minds of those of us with cancer who do not work in medicine are not very objective. We go to the worst case scenario and try as we might that's what we imagine.
My advice is to do what you are doing. Stay by her side even if there are days that it doesn't not feel like she wants you there. Your quiet presence is all that is needed. Your presence will say it all. Your quiet actions whatever they may be will continue to reassure. Find someone else you can talk with about your worries and let your wife know, as you have, that you are there and will support her decisions - and only say silently to yourself "even if I don't agree".
Will you please come back here and continue to let me know how you and your wife are doing?
@gpigford as I continue to listen to my friend who is currently dealing with invasive cancer that requires chemo, I really do understand what you are feeling. My previous comment was in the context of my own struggle to honor autonomy of another person. I was doing things like providing phone numbers, list of doctors and info on hormonal cancers. I finally sent her a book and stepped back. The impulse is to help and support, but in my case I think it started to reflect a distrust of my friend's own capabilities.
Mastectomies can make us feel so much safer. I was fine going through breast cancer by myself btw !
Thank you for your kind response and best wishes to you and your wife. Your plans for the future will still happen!
The emotional roller coaster hits everyone. when I was first diagnosed, I was scared for my kids as they are still young. I might be harsh but I felt replaceable to my husband as eventually he might choose to find another person to continue life with (I’ve seen it with two sister in laws). To my kids, they will not get over the feeling of losing their mother. I resented my husband as during the 20years we’ve been together, he was a major stress to me and I gave in a lot of my identity, wants and needs to please him. I was looking forward to see my kids grow up, have their own lives and enjoy loving their kids. Then, diagnosis came and I felt I will not be around for the one thing I wanted in life. This made me resent my husband. I understand you as her husband is stressed and afraid but in the end, you need to come to terms that it’s her decision and support it. I wanted to do diep flap for reconstruction and didn’t fill my husband in as I knew he was going to argue with me. He heard it from the plastic surgeon during one of my appts. Was he upset, maybe. After meeting with breast surgeon, she influenced me against flap and more implants because my cancer is higher risk. I hope this helps. Your wife is scarred and maybe resenting you for worrying about sexual aspect down the road when literally nothing to her matters except surviving.
@gpigford
I've read and re-read your posts. It sounds like you wish to support your wife, but it also sounds as though you need a lot of support yourself. Respectfully, this is her decision alone to make whether lumpectomy or mastectomy. If there is a caregivers support group you can join, I hope you will consider joining that group.
Breast cancer, especially on the left side, shows up from deep traumas and pains. What type of cancer did you have?
I had her2+. Didn’t have gene and read her2 is not genetic.
It is “us” not “her”. Actually it is her when it comes right down to it. The us part is where you play the supportive role, nothing more and nothing less. When I was going through my initial treatment, double mastectomy, chemo, reconstruction, to many Dr appts to count and my husband had responded the way you have (wanting to take a more active role..us) I would have reacted the way your wife has.
Her fear is real and making decisions like this under pressure only adds to the distress she feels. You sound very caring but it is time to hold her hand and say “I support your decisions because they are yours to make and whether you tell me everything you are thinking or not I am here for you”. There is a fine line between her and us. Take a step back and give her unconditional support. And one last thing.. she
does not have to log on to this site because you want her to. Give her and yourself some grace to walk beside each other not in front of or behind one another.
You didn't mention the post surgery diagnosis. You did state that you want the best for your wife. A double masectomy is THE most preventative surgery she could have!!!! And with nipple preservation, a good plastic surgery outcome!!! Move forward with love and empathy.
I meant Pre Surgery Diagnosis.