Thursday, February 12, 2015

After Active Treatment Ends: When People Stop Asking


This essay also appears in the Breastcancer.org Blog.

When I was diagnosed with breast cancer, my family and friends rallied to support me. They expressed love and concern, and offered their help. I was grateful for the many ways they showed they cared: they cooked meals, drove me to appointments, and even introduced me to other breast cancer survivors. But soon after my active treatment ended, those same friends and relatives seemed curiously incurious about how I was doing. In fact, most of them stopped asking altogether. As I recovered from mastectomy surgery, I was anxious to get back to “normal” as quickly as possible and I tried not to talk incessantly about cancer, even though in those early days it was always on my mind. After the first couple of months, when most of my family and friends had stopped asking about my health, I told myself their silence was entirely appropriate. After all, I didn’t look any different than I had before. Though I had chosen not to have reconstruction, I wore breast forms. I had opted to do that in part because I didn’t want to draw attention to the fact that I’d had breast cancer. So, why should I expect people to keep asking about my breast cancer? It’s not as if I had absolutely no one with whom to share my experiences and concerns. My husband was (almost) always happy to listen, and one good friend continued to ask me from time to time how things were going. But with virtually everyone else, it was as if nothing had ever happened. Although I felt very strongly that I didn’t want to be defined by breast cancer, I found myself wishing I could talk more openly about it. However, it seemed as if my friends and relatives wanted to forget that I’d ever had cancer. As long as I seemed fine, maybe they could assume I was fine. As long as they couldn’t see the ways in which cancer had changed me, perhaps that made it easier for them to imagine that cancer hadn’t changed me at all. As anyone who’s gone through diagnosis and treatment knows, that wasn’t true. I wished I could share both the good and the bad of cancer’s aftermath with my loved ones. I’ve sometimes wondered whether my women friends and relatives refrain from asking how I’m doing because of fear — the anxiety that they might be the next person diagnosed with breast cancer. It’s not an unrealistic concern, given how many women are diagnosed each year. Mostly, women manage not to dwell on it, but maybe my diagnosis had brought that fear to the surface for those close to me and reminded them of their own mortality. Asking how I’m doing might bring the fear rushing back, so perhaps it’s easier not to. I’ve also imagined that people might feel awkward about my breast-free state. Maybe they’d rather not think about the fact that I have a flat chest. I’d like to tell them that the flatness doesn’t bother me, that I’m just glad to be alive. Maybe I’d make a joke or two about my lack of cleavage. Maybe I’d even offer to show them. But it’s not a conversation I feel free to initiate myself. Of course, it’s possible that I’ve got things backward. Maybe my family and friends would love to ask me lots of questions, like how I feel about having chosen non-reconstruction, or whether I have any lasting side-effects from treatment, or if I’ve had any cancer-recurrence scares. Maybe they’re curious about all of that, but don’t want to intrude and don’t realize that I’d welcome their interest. Have you had feelings similar to mine about the reactions of your family and friends? Or do you prefer that people not ask how you’re doing, since you’re trying to move on? I’d love to hear from you about the things people have asked, or not asked, since you’ve finished your active treatment.

21 comments:

  1. I'm more than 5 years out and most people have stopped asking me about my health. For me, that's actually easier than the people who do ask me, because I'm not really sure what to tell them. I'm very grateful to be here, and for the most part I feel good, but I also can't claim to be "cancer free" (as there's no way anyone can guarantee that) and having had a unilateral mastectomy and axillary lymph node dissection has permanently changed my body. I am very fortunate to have a group of "young women survivors" - all of us met during treatment and still meet monthly - and I can talk to them about any of this... except I'm the only one that opted not to reconstruct, so there are some things they just don't understand. It's wonderful that I can be comfortable at home without my breast form on around my husband & daughter, but I'm paranoid of having to answer the door or leave the house and not have it (since I am uneven). Sometimes I want to show what my body is like now (in part to encourage those considering not reconstructing) but am hesitant of the response I might receive. When I mentioned to a friend/coworker that I was considering reconstruction (a few years ago), she thought I meant my house... and when I clarified, it was clear she was so uncomfortable that I just dropped it.

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  2. oh my goodness, you spoke straight to my heart ... I have a few very close friends, who've been through my trials and triumphs alongside me, who know instinctively what to say and not what to say - when to ask, when not to ask. That kind of thing.

    However, for the most part, I've lost touch with a LOT of people because they just can't look me in the eye, or who have actually told me that my whole cancer experience has made them feel uncomfortable. So it's sad, but understandable ... I just keep busy being me, being real, sharing the good and the bad, and letting those who love me be there for me, and vice versa xx

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  3. I chose to tell only my immediate family as I wanted to return to my previous life quickly.
    I do wear prosthesis which look natural so my husband says I'm fine with being flat on one side but I do have worries about the future and would appreciate a few questions about my health however because I don't speak about it perhaps they choose not to also!

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  4. Oh yes, I had feelings similar to yours! I had cancer more than 20 years ago, and I must say that until recently, I still had not found how to make sense of those mixed feelings. I am cured, but what about the lasting side-effects of the treatments? Why nobody cares? Why don't people ASK about it? Don't they see that I'm still in pain almost every day, that I hurt because my life has been stoled from me? Cancer and long-term effects literally shaped my whole life! (I was 11 when I was diagnosed---not breast cancer, but the radiation treatment affected, among other things, one of my breast, which never developed. I never had surgery to "construct" my breast.)
    After years of feeling guilty about my "obsession" over cancer and its signification in my life, I decided to open discussion. I stopped waiting for others to give me "permission" to bring the subject again. Part of it because I realized that I am myself uncomfortable asking people, even family members (my mother, one aunt and two uncles all had cancers after me too), about their health, the lasting side-effects, their fears, etc. I don't ask; but I stay available to listen. I wait for them to start the conversation. Because some survivors just don't want to talk about it at all. I've hurt some by asking them to much about their experience. I want to respect the right for privacy. And... well, because it's hard to ask!! How could I call my uncle and ask him how he feels, when I know I'm terrified that he will die?
    So... I started talking. I also stopped wearing my breast form in public, especially in context of what I call "my physical therapy" (any form of therapeutic movement, body-mind centering, etc.), thinking, like Audre Lorde had wrote, that it would allow recognition from other survivors like me. I thought: I would be visible to them or their loved ones or anybody. I stopped hiding. And I started talking about it a lot, to anybody: strangers, new friends, old friends, my sister. And you know what? Most of the time they are grateful. My friends are grateful that I share something that's so intimate and that they get to know me better. I realized with surprise that my sister was just waiting for me to talk about it (she's been treating breast cancer survivors in massage therapy and she wanted to share a lot of things with me). People I know less are often cancer survivors themselves, or they have family members or friends fighting cancer too, etc., and they have a lot to say! And they do want to listen.

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    1. My journey is just beginning... I found out in May 2015 I had breast cancer, again... In Dec 2000 I had breast cancer, lumpectomy, chemo and radiation.. That same year I lost my mother.. Now the beast is back.. November 16, I will go thru a double mastectomy.. I have no choice for reconstruction... My BMI is over 35 percent,, they wont do reconstruction... I feel like I'm being robbed... Cancer is making me do something I don't wanna do. I'll have to have a double mastectomy, then when I recover I'll have to have my fallopian tubes and ovaries out.. I forgot to say. I'm BRAC 1 positive. It attacks the ovaries and breast first. My surgeon says that it'll always be there ,, when will it come back.. because I have the cancer cells in my body, they'll just show up somewhere else.. I would give everything, to not let my daughter go through this,, but she's BRAC 1 positive too. She's only 29.. My heart is breaking.. Idk what to do. The way I'm feeling ,, I hate my body.... Its trying to kill me.. :(

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  5. Thank you all for your interesting and heartfelt comments.

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  6. Everyone deals with trauma differently. Do not think for one minute that I am criticizing your feelings. I for one have been given the grace to put the cancer behind me and live life today. I will not be defined by cancer. It is over. God bless you and hope you feel better.

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  7. Thank you for your comment. I'm not feeling badly, and I'm fortunate to have this blog as a place to share my feelings, but I definitely felt that this was an issue worth discussing.

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  8. I agree that everyone must feel differently and perhaps we should tell our friends more explicitly whether we like to talk about it or not. I am often offended when asked how my health is, figuring I'd say something if I wasn't ok. I really prefer to have people assume I am fine - which I am - and talk about anything other than cancer. I want to keep the past in the past. That's just me. I wish I could tell people who ask that.

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  9. This is such an interesting question! I volunteer for a breast-cancer support organization, and when I advised one helpline caller to consider joining a support group, she responded that she didn't want to be one of "those women who make a career out of their breast cancer." Then she stopped, because after all, she was talking to someone who had literally made at least a volunteer career out of breast cancer. I'm nearly 10 years out from my diagnosis, which resulted in an unreconstructed bilateral mastectomy. Breast forms are uncomfortable for me, so I go flat. I know some of my friends silently resent this visual reminder. I can just feel it. When I mention some experience related to breast cancer or its enduring side effects or my work on the helpline, I know they just wish I'd talk about something else. I think the problem is that it's such a loaded subject. It imposes an obligation on them to be sympathetic and creates a weird dynamic. It's like I've got the last word because I've had a recognized life-threatening illness. If they say anything less than supportive, it makes them look bad. Like sex or religion, it's just an awkward topic.

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  10. I have often felt like you do. I finished chemo and radiation in December, 2005. I had a left side mastectomy in January 2005 and then had a right mastectomy in December 2009, because it felt so odd (awful) with one breast. I too opted against reconstruction. Heard too many horror stories and quite frankly, my doctors did not do a whole of explanation about it in the first place! I was 53 years old at the time.

    I often wonder what people think of my flat chested look. My best friend told me she does not even notice, but I know it is quite obvious. It is harder to pick the right tops to not make it look quite so obvious...... I have small granddaughters now and the youngest (age 6) does look at me odd at times. I am sure she is thinking I don't look quite normal but who knows? I don't bring that conversation up. My 14 year old granddaughter was just a little girl of 3 when I had the first surgery but I think her mom or dad (my son) talked to her, so she does not ask me anything or look at me funny. I still have a lot of pain when my oncologist touches me on the left side. He said I had quite the surgery (Stage IIIA) and a lot of radiation burns. I still get occasional swelling and a bit of pain under that arm too.

    I do wonder why no one asks anything anymore. My former co-workers (I am now retired), my brother, sister-in-law, just people who know what I went through......... it is almost as if this never happened to me. Thanks for sharing your story.

    Like you, I am just glad to be alive, glad to be given a second chance at life. My husband was my fierce protector and he just passed away in December, 2014, and I am so down regarding it. I am worried that the stress I am going through is bad for me overall, but am trying hard to keep thinking positive thoughts. I have to keep going, as life is too precious.

    S.C.

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  11. I have had a tough time dealing with the aftermath of breast cancer. My husband at the time ended up dating then marring my best friend of 22 years. I'm sure they got together when I was recovering from one of my surgeries. After my divorce I had the unfortunate task of trying to date. Trying to find the right time to talk about my double mastectomy was difficult. For some reason when I told potential partners of my mastectomy they took upon themselves to tell others to whom I knew. The guy I am with now told his ex fiance who was so angry we were together she told me " He likes woman with Boobs" This is how I found out he told her about my Mastectomy. I felt betrayed so I withdrew within myself and I just don't talk about it. I don't talk to my family because there has been a wedge since my ex husband and ex girlfriend got together. I get angry at time like spring summer when I am unable to find clothes or even a nice looking bathing suit that can make me look half way normal. I wish there were some designer who would make clothes for women who want to look sexy for their own self esteem. I have not found that yet and I am still waiting. I was diagnosed at 39. I am now 51 and the thought of cancer has never left my mind even though I don't talk about it. Nobody has asked me about it since I recovered from my surgeries.

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  12. I had my bilateral last September. I would greatly appreciate it if people would stop asking me if I am getting implants before they even inquire as to how I am doing or feeling. It especially angers me when men ask, or people I am not close with. I have been tolerating it for months but it is getting to the point where I may reply in a way they won't like.

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  13. My bilateral was in 2007. My husband stayed with me, but hasn't coped well sexually. Mostly I'm glad and thankful I am pain free.
    I live in a beach town and feel the summer sorrows.
    By searching "high neck one piece swim suit" I found some that I could sew/tack small prostheses in. They're comfortable. Look in the notions area at fabric stores for affordable 'inserts.'
    After spending $$$$ and time trying various prostheses over the years, I'm glad I found the ones at the fabric store.
    Hugs of support. We are so much more than our exteriors!

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  14. I was diagnosed with breast cancer in April 2006 just days after my Mother passed away.She had gone through a long illness with Parkinson's disease. I was emotionally and physically exhausted when I got this news. I had a lumpectomy, chemo and radiation. Six weeks after I was diagnosed my sister found out she had breast cancer also. We had the same kind of breast cancer and went through the same identical treatments and radiation. I was devastated when I found out she had it, but it turned out to be a blessing because we helped each other through it. The Lord brought us through that time. My husband has been wonderful as well as my whole family and friends.

    In May 2014 I was diagnosed with breast cancer again, but thankfully it wasn't the same type of breast cancer I had the first time. This time I didn't have to have chemo so that was such a blessing.


    I decided to have a bilateral mastectomy without reconstruction.I have heard good and bad stories about reconstruction. I have realized that I am still the same person I was before even though my body image is different. Our culture puts so much emphasis on a perfect body image, but we are so much more than that.

    My husband is wonderful, and He has been so supportive. For many years I have struggled with fibroid tumors in my breast so I didn't want to go through that anymore.

    I was 53 when I was diagnosed the first time, and I will turn 63 in a few days. The Lord has really blessed me, and I am thankful to be here! I try to live life one day at a time and be thankful for this gift!

    I also have had many struggles with body image and other things like trying to find a cute swimsuit. I think I am now at the place of accepting what has happened and moving on. There are days I get down or feel sorry for myself, but it doesn't take me long to see someone else who has been through a whole lot more than I have.

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  15. I think most people are dealing with their own drama and daily lives/challenges. If we are involved in treatment/chemo/surgery it is a visible struggle. If not, they move on. And honestly, I believe people have a saturation point with BC. After a while, I felt people really didn't want to hear about it anymore. I saved most of my difficult drama for my mother and therapist.

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  16. Thanks to everyone for sharing their stories. I was diagnosed with stage 2 breast cancer in 2009. I opted for reconstruction. I did not do my research then as I should have. I really believed I would have a breast that looked real. I also thought they were implanting the non cancer breast to match. Four years later the left breast was where it began and the reconstructed side seemed too far up on my chest, felt like a softball and was mishapen uncomfortable, and sore all around. No more sports bras, tank tops or skin suits. And then I was diagnosed with cancer when a lump appeared on the reconstructed breast. That was 2013. I had a lumpectomy, chemo and radiation.I finished my last treatment a year ago January. I went back to a plastic surgeon to see what could be done to improve upon my problem. By the way, I've felt guilty talking about this because I don't want people to think I'm not grateful for my life! I will be 70 in July and though my weight is normal it is uncomfortable to have to wear underwired padded bras everyday. The surgeon informed me he can only nip/tuck the left breast and do another implant that might soften up the reconstructed breast. I expressed concern that the non constructed breast would end up the same in four years he said yes, and nothing else can be done..so I am considering have both removed! I aso experienced a drop in my support system as soon as I was able to get around on my own. They seemed afraid to ask how I was doing because I might really need something. It was as though it never happened! So I am struggling with what to do now.. I want to be comfortable in my body and how I look. I'm beginning to realize there is no perfect fix. I will have to accept the limitations that both choices present. I may not be happy about it but I am alive! By the the way, if I had Hollywood money, would it make a difference!

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  17. I too experienced the lack of interest from family and friends in my health and recovery after I finished active treatment for a bilateral mastectomy without reconstruction. It is now, 2 months after my surgery, that I am grieving over losing my breasts. I am realizing that I have a new body to accept and love. Anyone else going through a similar process after active treatment?

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  18. Hi there, thank you for this blog. I realize this was over a year ago, but I have a question! I am five years out now after having right breast removed. I never thought I would want reconstruction.didnt seem worth it, but after five years of dealing with a c/d prostheses I am so done. I am scheduled for surgery in January. But am having second thoughts. The only reason I did not do a double mastectomy was for sex. It plays an important role in mine anyways. (: I would like to hear from others and how their sex life has been affected. Thanks! (:

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  19. Since I posted this a while ago, I'm not sure if you'll get many responses. I sympathize with your situation. I did have a double mastectomy and have missed my breasts during sex. I've found ways to compensate, but it was definitely a loss. It sounds as if you're also tired of wearing a breast form all the time. Two good reasons to consider reconstruction. Also, removing a healthy breast is a big step. On the other hand, there are the risks and complications of reconstruction to consider. I hope you get some answers to your question.

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  20. I had treatment on one breast and then, a little over a year later, on the other. A lot of tissue was removed on the right side in numerous biopsies and one lump removal under general anesthetic which they called a biopsy, for billing purposes, I believe. I had radiation which, combined with the removal of tissue, left me very, very small. The next year I had a small lump removed from the other breast, followed by radiation. I was started on an estrogen blocker but could not tolerate the side effects. This all started about 5 years ago. For a while I almost wished I had had a mastectomy, because I am so sensitive to even slight "collisions" in crowds, with packages, door frames, with my little dog ... And the fatigue after the second round of radiation has still not completely left. My family were sympathetic at the time of the first surgery, but not enough to come visit after I said they'd probably be bored. But I heard they talked about me at get-togethers. :/ When I had the recurrence, they did not acknowledge the news until my treatment was complete. Now, several years later, they have come to my town to visit several times and expect me to chauffer them, carry their luggage, entertain them, etc. etc. and then one said I should come visit them -- apparently expecting me to drive the 1000 miles there. A close relative gave me some clothes that are either inappropriate to my misshapen figure or otherwise unflattering. All of this just hit me especially hard because I wore one gifted denim-look shirt out shopping and a polite young man called me "sir." :P Other people who know my history occasionally ask me, "But you're fine now, aren't you?" I don't want to scare other women about cancer or discourage them from getting regular screenings or treatment if they need it, so I usually say that I haven't had a recurrence since the last treatment.

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