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.
gardenstategal says:
I had breast cancer and bilateral seven years and three months ago. No reconstruction. I am at the point where I really forget I had breast cancer and my flat chest is no longer an issue for me.
I guess, personally, I no longer feel the need to discuss my condition. However, if someone were to ask me about how I felt during that time, or what I did to go forward, I will gladly discuss.
But, in the meantime, I consider my cancer to be a roadblock that I had to detour around for a bit.
The biggest changes for me are that I’m more thankful for each day and more compassionate toward others.
Vmama says:
I also was so supported and loved during the time of diagnosis, treatment and recovery. And yes, now after a few years out no one talks about it. But I’m ok with that too. I don’t think about it and the fact I have one breast doesn’t bother me – it is just the way I am. It was so nice have all the attention and love at the time and I believe it was a big part of my quick recovery.
JJ62 says:
I can relate totally to your comments. My husband definitely wants it “behind us”. Moving forward is fine, but the new normal is that being flat chested and a survivor is who I am and that there isn’t a day that goes by that I don’t think about it. It is great to “give back” by supporting others battling cancer, but do envy people who are part of active support groups. And I know that conversations in those groups are not all cancer related ( just like book clubs are not all about books!). Some friends I can share with, and perhaps easier than family, but only those that have been there really understand. Thank goodness for BCO!
oreolau says:
I am almost 9 years from my diagnosis of stage IIB locally advanced invasive lobular. My oncologist is amazed that I am alive and have not had a recurrence, but I know it is God’s grace. Not only do I struggle with the fact that people don’t ask, but I have some church friends who don’t understand that I do have a “new normal”. My new normal is continued fatigue from the intense chemo and radiation and bone issues from being on aromatase inhibitors for six years. I have a wonderful, supportive husband, and I am happy with prioritizing things in my life. I am really trying to figure out how to respond to people who don’t get it. I’m thinking I just need to walk away from some relationships and only stick with the ones that are genuine and ‘safe.’ Any suggestions?
kareng1227 says:
I can certainly relate. It has been two years since my last treatment and my few friends that did support me quit asking and so did my family. However, my husband is a great listener. But my parents who were always there for me, now go numb when I bring it up. I had radiation, no mastectomy. But I was so small to begin with, that after radiation, I could no longer even fill an A cup. So I chose reconstruction. They said it was silly since no one could tell. Well “I” could, which is the most important thing. Anyway, went through many things due it being estrogen positive and early menopause. It’s not that I necessarily wanted to dwell, I just wanted someone to understand that just because radiation was over, that I was still being affected and it’s not over. I am thankful I am here and was one of the ones that caught it early, but it doesn’t need to be ignored. The one thing I wish I had done was joined a support group. In summary, you’re not alone.
Erica says:
oreolau,
It sounds as if you are prioritizing well and I’m glad your husband has been supportive. As for other relationships, you’re already attuned to those that feel genuine and safe, so I would trust your own judgment about whether or not to walk away from those people who don’t to “get” what you’ve been through.
Barbara Kriss (my screen name at bc.org is Erica)
Kimberly1965 says:
I feel like people don’t think the fact that I had breast cancer is important anymore. Or that my experience wasn’t as bad as most. I was a stage 2 grade 3 IDC. I don’t know if they really feel that way. It’s just when people talk about someone that has or had it they make me feel like I don’t deserve to even comment that my experience was tiny. I had a double mastectomy, tried reconstruction it fail horribly. Did chemo. Refused radiation. Am I being childish?
dogmom3 says:
I am glad to be through with chemo and radiation but have found that people seem relieved that with the end of those treatments that you are done and therefore no longer in need of support. We and they are through with all that. Unfortunately now you are processing emotionally the diagnosis and treatment in a way you couldn’t when you were In the treadmill of active treatment. This is the time when support from others in the same situation is critical. Friends and family are so anxious for you to be better that they may not want to hear you work through your feelings. That’s what we can provide as part of this community.
hostanut says:
I had early stage bc almost 9 yrs. ago now. A gal whom I met during my journey, who was also going through the same, only maybe a month or more ahead of me, became my mentor. I had a very supportive family, but my mentor and I emailed just about every day and we identified with EVERYTHING we were going through. We’re still in contact, but we chat about our lives in general. I felt my bc was a “speed bump” and now I’m moving down the highway cancer free again!!
SoniaDavisWoodall9-16-2013 says:
After having been Cancer free for almost 31 years. One has a tendency to forget about treatment. But having gone without reconstruction for over 17 years. I chose in 2007 to have reconstruction again by a Doctor here in Lexington that is apart of the Allergan study. I am so happy about the results. I had previously had reconstruction 5 times the fifth time was by [a doctor] that had written several books on reconstruction. I awaken from the surgery with flu like systems and continued to feel that way for almost a year until [a new doctor] said I think we should open you up and see what is going on. He did and discovered that [my old doctor] and his residents had implanted 7 implants in my chest that were rubbing together and creating a black oiley substance. Needless to say everything came out and the chest wall was irrigated. and left minus the implants for 17 years. Now I have the gummy bear implants by Allergan and I haven’t had one problem and they have been in place for 8 years. My flat chest reminded me every single day that I was a victim of cancer. Now I feel whole again and completely healed.
iamstillhere says:
I’m 6-1/2 yrs out from bilateral and 17 years out from rt lumpectomy with nodes. Never needed chemo, thankfully. I think people take their cues from us. If we reference the disease or treatment in casual conversation, I think it normalizes things ( for us and them) and makes people less hesitant to ask. I think people think we want to put it behind us and move on, and have no way of knowing that’s not how it works without our input. I find when I run into people I haven’t seen in a long time and we do the casual ” how r you” there’s frequently a milli second of a knowing look and I Realize they r referencing cancer. And if I had/have to miss work for a doc appt (eye, dentist, whatever) or mention a medical test, there’s a ” are u ok?” So I now preface those things with – it’s not cancer. My response when the question gets closer re: cancer is : I’m fine as far as I know. I said that before I was “clean” for 10-1/2 yrs, and all the moreso once I had a second run through this.
Traveltext says:
My situation is a bit different in that I’m a 64-year-old guy with BC, so it has attracted a lot of attention, not just from family and friends, but in the small community where I live.
A year now since diagnosis and three months since the end of treatment (Chemo, MX, Rads) I feel I am at a stopping point as far as initiating the topic with friends and family. But ask me how I am or anything about the year’s treatment and I won’t stop talking. I was like this all year so nothing has changed. Perhaps I am a bit obsessive about the whole topic, but it was talking about it that got me through without any psychological stress.
Like all of us I worry about recurrence, but once you get diet and exercise in hand (and don’t forget your Tamox) you really should be OK for many years. So, I feel now I should move on and push the whole thing into the background. Will see how long that thought lasts!
Cheerful says:
Hi Barbara, I remember wanting to tell everybody about my diagnosis and with expectations of receiving encouragement and support.
I reframed from doing this because I did not want the “label” which, deny it or not, will be placed on you. Yes, the really close friends were told but I found my most wonderful supporters among other survivors.
I also realized that I could only lean on others just so far, esp. my dear husband. If I wanted to get through this devastating life altering experience with any sanity, I had to get professional help. So to my health care team, I added a talk therapist or psychologist. Yes, I paid this person to listen to my concerns. Tears flowed, boy, how they flowed. But I learned from her how to deal with this in a constructive and beneficial way. She guided me with comments and reminders which helped me deal with this problem as I have dealt with other challenges in my life. She, too, was a cancer survivor so she knew what she was talking about.
I am so glad I did not tell people and expect their support and comfort. The last thing I wanted is a “pity party” at the grocery store when I run into people I know. I journal when I feel like I am stumbling in my coping skills. These journal entries are really prayers to God for support and guidance and the calmness and joy that replace the anxiety is remarkable. Yes, this experience has renewed my faith. I am stronger and more grateful and live a fuller happier life. Just sharing.
Hopeful82014 says:
I think there’s a lot of truth in what Dogmom wrote – that people are anxious for us to be back to normal (for whatever reasons). It simply makes things easier for others if they feel they don’t ‘owe’ us any particular support or attention.
And, let’s face it, most people have very short attention spans for matters not directly relating to their own health, interests or activities.
Katienkc says:
I am glad to see I am not the only one dealing with this issue. I was Dx in 2006 and like most on here the support went away once my treatments were over. Unfortunately, we live in a microwave society, and I believe people for the most part are uncomfortable with serious illness or dying. How very sad and self absorbed! In the last 10 years through our 50’s, we have been caretakers for our parents who passed away, my husband lost his job twice…once in 2008 after the office was shut down and the second time in 2011 after he was dx’d with Parkinsonism. That was followed up with very close “friends” whom we had spent almost every Friday night with for the last 10 yrs telling us that “maybe we should look for another small group at our church because they “just didn’t know what to say.” That was just two weeks after my husbands diagnosis. We were still dealing from the dx of PD. I have found over and over that VERY FEW people try to understand and would rather minimize your disease. It’s not like we went around constantly talking about it! It is only through Gods grace that we have carried on and remind ourselves that these people have no real clue what serious health issues are about.
lindadhodgson says:
I think I’m logged in now…. I, too, am new to this breast cancer nightmare. I began my journey with a regular mammo in November but was finally diagnosed in January with IDC grade 2 stage 1a. I never even felt a lump so it was all a total shock when it began. I had a lumpectomy in February. I thank God every day it was small and caught early. Like all of you above I received lots of support from family and friends early on. But I see it dwindling already. I haven’t started radiation yet but I’m still waiting to be scheduled in. Just waiting to be scheduled for radiation is scary which no one (but all of you) seem to understand. It really is weird cause I feel so normal most days but then it hits me OMG I have breast cancer! It’s the fear of recurrence that I find scariest. That’s what my friends and family don’t get… I have tried to be positive when asked questions. I’ve probably minimized my situation all by myself trying to comfort others…. it’s hard for me to know what and how to tell those I care about cancer. I can see it in their eyes and demeanor their curiosity, worry, confusion, pity. I guess I’m just rambling on now. But this is what bc is like – an abundance of confusing emotions that is difficult to exlpain…. thanks for letting me share… All of your stories have been truly inspiring and helpful – thank you…
Boomergirl47 says:
I’m not at that point yet. Still in the decision-making stage between lumpectomy w/ radiation and prophylactic double mastectomy. My mammos are very, very hard to read and I have some family history. Still waiting for the BRCA results. I worry if I go with reconstruction the implants will be uncomfortable, and I’m used to small, never-in-the-way boobs. Don’t think I can do w/o reconstruction tho.
margaretdepippo says:
A new blogger to the group, I read your journey Barbara. It brought tears to my eyes, which I have not had during my journey. I was diagnosed October 1st, finding the lump September 13. had a lumpectomy in November and it was diagnosed as Stage II, IDC, Her2- and prog and estrogen positive. I am now a participant in a study, which they sent my pathology to California and my recurrence came back 20. I was somewhat grateful that I was randomized to do chemo, radiation then tamoxifen. my last chemo is tomorrow and I get to ring the bell.
Throughout my journey I have been the brave one, I had to be, my family was not quite there. maybe because I was still normal, cooking, cleaning, shopping etc. It got to a point where it was why bother hearing the arguments when I ask them to do something when I can do it myself without the arguing, stress that I just don’t need, and probably was a big contributor with my BC. My colleagues at work are great, they are amazed how I am handling everything. I even go to band, as I find it my escape, and being somewhat normal. when I lost my hair, it was a shock to say the least, especially when seeing myself in the mirror, it still is. Am I minimizing and trivializing this whole cancer thing? I have had moments in the house alone with my beloved dogs, of just crying, or just wanting to see a sad movie just to let the tears flow. I do have sleepless nights, and my dreams can be quite disturbing, which is my self conscious coming out. I have a large sibship, and me being the only one with BC. I think the original shock when I let everyone know October 1st was the worst. after this, people have dwindled off, even my family. I too do not want pity, but someone, friends or family to just say, how are you? and mean it, like they want to say it, not have to say it.
with radiation in the future, a couple of weeks, how is this treatment? harder than chemo? any suggestions how to get over it, especially when I will be back at work. Tamoxifen, anything I can do, what I heard was that it will cause more hot flashes, and may be more intense, and weight gain.
thank you for listening….
stickybrea1 says:
The sense that I get is from family and friends who do not want to talk about my disease is for two reasons (1) they are all afraid that it will come back and kill me so they don’t what to talk about it and/or (2) they don’t want to depress themselves or me with all the gloom.
So perk yourself up, their reaction is somewhat understandable.
TallyLassie says:
So interesting. I’m going to discover how this goes very soon. I was diagnosed with HER2+ last October, went through chemo and had a uni-mx and diep reconstruction 10 days ago. I’ll be on Herceptin till next November, but after an outpouring of well wishes after surgery, I expect everything to calm down. I’m even putting a “no news is good news” message out there because I really do feel like I want to get this behind me. Yet, I also want people to understand how profoundly awful this experience has been.
I noticed that when the news got out, acquaintances came forward to tell me that they survived breast cancer. At first, it seemed to me that they were trying to comfort me and keep my spirits up, but I noticed that they all were compelled to tell me their story in great detail. I figured out pretty quickly that despite being the one in active illness, my role included being their witness. Maybe they felt safe to be vulnerable with another person going through what they went through. I will probably become one of them, but I will also try to listen more to the person in illness, have more compassion.
skowtko says:
I’m wondering if I should just write an intro and save it, so I can copy and paste the first paragraph of these 🙂
Dx’ed – stage 1, grade 1 IDC July 2014 – full right mastectomy, clear surgical margins, negative nodes – Sept – Dec 2014 weekly Taxol and Herceptin – Jan – Sept 2015 Herceptin every 3 weeks. Delayed tissue expander put in one week ago with left breast fully augmented. Right reconstruction planned for August.
And I am already sad that fewer and fewer people “ask after me.”
I chronicled my journey on FB. I blog. We are making a documentary and have completed a portrait session that will be an art exhibit combined with reading of my original pieces to go with the portraits. I am an over-sharer. I always have been. I didn’t want to be the “cancer lady.” I don’t want it to define me. Just like all of us here. Cancer will not be “the thing” people know about me.
And then I wonder, why not? It would depend on how it’s done, but what would be so wrong with being one of those people who spend the rest of their days educating others so it might be a *little* less of a shock to those that will walk this road after me? Living life with cancer in the forefront – or at least not the forgotten past – with cancer as a *constructive, creative* force might be the most compassionate thing I could do for me – for everyone. That way, I’m not at my computer at 3:30 in the morning reaching out…
And to top it all off, I do not think to “ask after” MANY in my life that have severe, chronic issues of their own. I trust that if friends or family want or need my support or help or even just an ear, that they will reach out to me. When I do reach out, I don’t always ask about health. I don’t know if maybe they need a break, so sometimes it’s “hey, love you – thinking about you – missing you,” with no mention of their own maladies OR mine, yet I am still “asking after them.” I try to keep these things in mind when all I want to do is pull someone close because I am so scared. There is no way they can remember that every time I move my body, I am reminded of Cancer. I will never physically feel the same because of this, and I will never be able to forget why. Maybe that’s all I need to tell them.
Thank you for your bravery, for sharing, for being here. It is much appreciated.