A much delayed emotional reaction

zipzap

My diagnosis of DCIS came in summer 2019, followed by surgery and radiation treatments into winter 2020. I was declared cancer free just a few weeks before the COVID-19 pandemic began. (And I am very glad that I didn't have to navigate cancer through that!)

Since then, however, I have said here and there to friends that I didn't think I had ever really processed having cancer yet. Immediately post-diagnosis and throughout treatment, I was overwhelmed and simply reacting. Then came the pandemic and all the disruptions to life and work that entailed . . .

A recent (thankfully normal) mammogram seems to have lifted the lid on my emotions, many of them contradictory.

• I was so scared of a bad result that I could barely function in the few days before that mammogram (my second since treatment ended). How would I tell family and friends if I had cancer again? How do I learn to live with that fear, year after year?
• I am angry at my family and friends, because so very few ever ask about my health or the results of mammograms. No one seems to remember I had cancer. (So, yes, I am also feeling sorry for myself!)
• I am feeling sad over the physical results of surgery as well as the tamoxifen-related hair loss and weight gain.
• Radiation was very tough for me. I wish just one person in my life understood how truly difficult it was to walk into that damn room every day for weeks on end.
• Does anyone else out there feel like an imposter when their medical team uses the term survivorship? Because it was "only" DCIS?

So, yeah, it's undoubtedly delayed but I am now feeling and (hopefully) processing my experience.

Jelson

ZIPZAP - Laying out your feelings as clearly as you have, is in itself helpful. You have been traumatized by your diagnosis and treatment and I am glad that you now realize this and are giving yourself permission to process it all. DCIS presents its own challenges, is it pre-cancer or cancer? We endure the same treatments and follow up as early stage "real" cancer. I wonder if some with early stage BC for which chemotherapy is not recommended also feel like imposters. Often our family and friends, especially if they haven't experienced cancer themselves, don't seem to get it, or rather don't get what we need and BCO's community boards can help fill that gap. Welcome.

Moderators

Hi zipzap, and welcome to Breastcancer.org,

We're sorry for the reasons that bring you here, but we're really glad you've found us. As you can already see, our amazing Community is full of incredible members always willing to offer advice, information, encouragement, and support -- we're all here for you!

Please know your emotions, even if delayed, are very normal! Many of our members experience similar feelings during and after a diagnosis, and you're sure to hear from more of them here soon!

In the meantime, you may be interested in some of these links from the main Breastcancer.org site:

Blog post: Our Friends Respond: About 80% Have PTSD Symptoms After Diagnosis

Article: Post-Traumatic Stress Disorder (PTSD)

Podcast: Post-Traumatic Stress Disorder After a Cancer Diagnosis

Research News: About 80% of Women Have PTSD Symptoms After Breast Cancer Diagnosis

Slideshow: 6 Tips for Managing "Scanxiety:" Screening and Testing Fears

We hope you find some helpful information here, and that you receive some more inspirational responses soon, too.

Let us know how else we can help!

--The Mods

star2017

My MO told me to make sure to get in touch with support groups or other people I could talk to after completing treatment.

He said for many people, it is the time after treatment ends that they feel most vulnerable. During treatments, you're constantly being checked, monitored. You're talking to doctors and nurses and other experts frequently about your health and experiences. Then suddenly it all ends and there are months between doctors' appointments. It's like life is suddenly supposed to be normal again, but of course normal is different, and you are different. You can still have a good life, but the time after treatment can feel lonely (even if you're surrounded by supportive family and friends) and scary because you are no longer being checked as regularly and are not necessarily being asked about your health.

It's weird too because people who enter your life after treatment may not know anything about this big life-altering experience you had, and you may not know whether to share or not.

I appreciated the MO giving me this heads up, and I was also happy to have this space, and a connection with other cancer survivors to help me process and share my feelings, fears, frustrations, and hopes.

Don't hesitate to reach out. You're not alone.

kksmom3

Please don't feel like an "imposter." You had the same treatment many of us have, I'm 3 years out and no one ever asks me anymore how I am doing. And by them, I mean my 4 sisters and 2 brothers or any of their kids, etc. I suppose it really doesn't matter, but truly, no one gets how awful this experience really is.

LivinLife

I too think the process you're going through now is a healthy one. Keep in mind too DCIS involves REAL CANCER cells they just cannot live outside the ducts and so it is not invasive. All of my docs, including oncology related docs called DCIS cancer and I think b/c it involves cancer cells even if also considered "pre cancer" by many other docs. I think Beesie mentioned also thinking about DCIS as pre invasive cancer and that helped me a lot. I don't know that I could've taken this seriously enough if it was really pre-cancer??? And that would've been a mistake. Left untreated there are real concerns it becomes invasive - b/c it does - I do not believe in every case tho do not believe they are always able to predict this - when it will and when it won't.... This is why surgery, radiation and then an AI depending on ER/PR are often recommended.

marinochka

We are in similar situation. I was diagnosed with DCIS in 11/2019.

I am going to have the second (after diagnosis) mammogram in October 2021.

And I am trying now not to think about it, but I will be very scared. This is given.

Congratulations with clear mammogram! It is great news.

I am not angry with anyone, and I am not asked how I am doing. My main thing that I do feel anxiety with any pain because the first thing in my mind-mets. And it happens rarely with DCIS, but it is still on my mind. I guess this is the way it will be : anxieties.

I try to talk to myself and enjoy life, and it works mostly.

zipzap

Thank you to all who responded! It is great to know that others share my feelings and experiences. I also appreciate the moderators' info. I'll be checking out those resources.

zipzap

Marinochka -- I'll think good thoughts for your mammogram in October!

AliceBastable

I understand the "imposter" feeling. I had been thinking about that lately. All of my cancers have been stage one, no chemo needed. I pretty much sailed through all the surgeries I've had with minimal problems, and even radiation was more of a drudgery than a physical struggle (except for the first few weeks when my body wasn't ready to stretch after a nephrectomy). I barely turned pale pink anywhere but the clavicle, which was red but undamaged otherwise. My energy and physical stamina are kind of shot, but that could be age in addition to too many surgeries (I've had several non-cancer ones, too). I should be happy I got through cancers so easily, and I don't talk about any of them except here and very infrequently on a kidney cancer forum. BUT, I get the feeling other people see me as "That's old Alice, with her barely-cancers over and done with and she's just fine so don't talk about it." I'm probably the one who encouraged that attitude in the first place! I get my annual mammograms, scans for the kidney area, a few extra scans when things have looked weird, plus a biopsy, follow-ups with all the doctors, and all I hear is "You're fine!" Only my breast surgeon has ever said "Wow, you've been through a lot!" and while I appreciated it, damned if I didn't say "Oh, it was nothing!" I guess I shouldn't expect other (non-cancer) people to understand when I have such a hard time acknowledging the mental struggle myself.

Yep, this cancer crap can really screw with our minds.

zipzap

Hi AliceBastable, I am amazed anyone who writes "all of my cancers" (PLURAL) also feels like an imposter, but I do understand and so appreciate you responding about it. Congratulations on overcoming so much -- you are a really strong person. I appreciate you being kind by offering your experiences to help out others like me.

I think I also encouraged the attitude in my friends and family, that my cancer was no big deal. I did that at the beginning so people wouldn't worry and to calm my own fears. Like kksmom3 above, I've got to figure out if it now really matters -- am I just feeling sorry for myself right now or do I really need people to ask how I'm doing, long-term? I've never been good asking for what I need, but maybe now's the time to learn? (Then I overthink THAT.)

You are so right that the mental struggle screws with us. I was about to type "more so than the physical" and REALIZED perhaps that's what's behind my imposter feeling in the first place: that I feel like I'm struggling more mentally than I did physically? And somehow that seems wrong, makes me an imposter -- when I know I could view mental health as the flip side of physical health and thus equally important. Something else for me to work on!

Thank you all!

Harley07

@zipzap - ^^^^ THIS. Thank you for starting this thread. You described the feelings I am having much better than I could have written them. At 63 I feel like I should just suck it up and be happy I've made it this far in life without a serious illness.

AliceBastable

Harley07, and yet here you are, describing having had cancer as "made it this far in life without a serious illness." Yep, that's Imposter Syndrome to a T. Or a C. Maybe we should call it CB, as in, "I had *Cancer, But* it was no big deal."

exbrnxgrl

I am stage IV and I feel like an imposter at times. I have never had chemo* and just retired after working for 10 years after my stage IV dx. I have also had no progression in those ten years. I look and carry on rather normally. I doubt anyone would ever guess that I have a terminal disease. I have been challenged by a few friends and family who think I may not really have mbc (I am always happy to provide biopsy results) and been asked to “tone down” my descriptions of my normal life here on bco by some members (they don’t want others to get the idea that stage IV isn’t bad). I won’t do that because when I post about mbc, I am posting about my life and my experiences.

I am acutely aware of the rough road most stage IV patients face but I can only speak to my own experiences. So one can even feel like an imposter with stage IV. I repeat this story with some frequency. Why? Because I never want another bco member who is in my position to receive the pm’s I got or to read a post telling me to shove my single bone met up my a** (It took the mods 10 hours to delete that post and a few members used that time to pile on even more). Let’s hope this never happens to another member, especially not to a stage IV member.

*Yes, I have a port but have never had chemo. It’s a long story and not a happy one.

AliceBastable

exbrnxgrl Good grief. And yet I'm not surprised, as I've seen quite a few people get into the "My cancer's worse than yours, so pipe down" competitions. There's gotta be something more normal than apologizing for it or bragging about it, but I'll be damned if I can figure out where that normal is.

exbrnxgrl

Good grief is right! I have no more control over the course of this disease than anyone else. I will also not keep my own experience with mbc under wraps because I think anyone reading the stage IV threads needs to understand the full range of experiences that members have with mbc. I freely admit that I haven’t suffered as much as many stage IV members but please don’t ask me to shut up about my reality or shove anything up my bum!

TB90

I also so get this! Every time I post, I feel inadequately qualified. It doesn’t help that one poster attached me for not even having had cancer or experienced chemo. The two or three months I waited for a dx for both breast and thyroid cancer, I went to that place. And I will never feel completely safe. Like other posters here, I can barely breath and my legs even give out when I return for a mammogram. But I get that I have had it easy compared to others. But sometimes I just want to acknowledge what I went through. Exbrnxgrl has even been questioned as to whether she is certain she is stage IV. So thanks for posting this. My best friend in the world has just been dx’d with stage II bc. I am very aware that both our futures are uncertain and I guarantee you we will not be comparing stats. We will just be there together and so grateful for our friendship.

exbrnxgrl

TB90,

It is very weird to have people question the fact that I'm stage IV. I think I posted this before but since I no longer care about how others feel about my bc, this is my very out of character response:

- Push top off of the right shoulder to expose my little power port. No, I never had chemo but that is a loooong story. If this is not convincing enough, proceed to next step.

- Start to expose reconstructed breasts, one of which is missing a nipple. Point out scars if necessary. Still don't believe me? Proceed to the next step, if you dare…

- Lower pants or raise skirt/dress to expose lower groin and upper thigh area. Delicately point out the sprinkling of rads tats across said groin/thigh area.

For the record, I have never had to go beyond the first step 😂.

Esther01

Zipzap,

I can identify with many of those emotions you've raised. While I feel supported by my family, it has surprised me which of my friends have been there for me, and which disappeared from the planet. I think of it sometimes on the way home from radiation (I'm on #7 of 33).

I have come to the conclusion that "cancer" scares certain people and they either don't know what to say so they avoid asking us about it, or they are afraid that somehow they'll get it too - so they avoid me because I remind them of it. A few friends that I wasn't even close to before diagnosis began to constantly check on me and send prayers and songs and articles and ask what they could bring me to eat... it astonishes me because we weren't that close and yet they are stepping in where my oldest childhood friend disappeared the moment I told her I have cancer.

Exbrnxgrl, I cannot believe that anyone would speak like that to you. That astonishes and upsets me. Sure, my posts attract the haters who dislike my optimism and have not read the studies I read or are learning from the incredible scientist/doctor that I am so fortunate to have. How dare I use my own personal experience and decades of experience from my IMD to help someone have hope. I will not stop sharing hope and knowledge and science when it can help a fellow human being.

Even as a 7-month newbie to breast cancer, I know what changes have worked most for me in my treatment. I also know what is working for survivors who have become friends because I sit next to them every other day at the IV suite. I launched myself at one of most sought-after cancer doctors in the country who thank God was on my health plan. She is also a biochemist, former military flight surgeon and published researcher who grew up working in a science lab alongside her father.

Keep boldly sharing and boldly posting and lovingly caring about each other... your experience is tremendously valuable... because it's YOUR experience.

Love and blessings,

Esther

K-Gobby

Esther, i love your doctor and watch the shows after on u-tube. ip ap-

ZIPZAP =I am not stage IV at this time, but a stage two with a 5.3 cent mass, that has not spread to the nodes. A Mammogram, Ultrasound, Biopsy, Cat Scan and Bone Scan, then an electrocardiogram to see if my heart can take chemo yesterday said a 2. (The only thing the Staff who did the heart test could say was yes, you can likely do chemo)

Cancer Centers like City of Hope go bam bam bam. Once the genetic test i committed to came back, it said i have the BRCA2 gene. What?? My MO Dr. Patel set me up with the gyno surgeon next week. Tell me the plan for my case. Keeping it simple, I have ovaries and a uterus that were never used to make babies. I went through menopause at 41, nearly 20 years ago. I cannot have children with old, grey and dead eggs.

Both of my sisters called me and i text them today following up . Both gave me ginger chews!!! The older sister on the day I found out in her front yard as we talked about family genes. She says can't you wait and see on the ovaries? She has reconstruction ideas she has looked at too. To me deniers are afraid of it, as others have said. Do not talk about it, and it is not there. My sister has stomach problems and refuses doing a fecal exam. Her younger sister, me, never had a mammogram till 60. Our younger sister has mammograms and never does her own breast exams.

Until i was diagnosed with cancer, I never understood. To you who have been called deniers, stand tall. This road is ours to walk. Our bodies and our decisions. On the form i signed for the chemo, it says the details and goals for this therapy is "To cure my disease". This blog is part of my circle for this breast cancer journey. My friend from Texas told me about this blog. Find her in Stage 4. We both were born on August 25th and now, we share these special journey as well. God is here for all of us.

ElleDee

Esther, I sent you a private message regarding your doctor. I'd love to know who it is!

Moderators

ElleDee, welcome to Breastcancer.org and thank you for joining our Community!

As a suggestion, you may want to fill out your Profile (tab at the top right of your screen) with your diagnosis and treatment information and make it public, so it appears under every post you publish. This may help others to know your story and answer your questions. Please, let us know if you need help with that, we are here to assist you in any way!

Warmly,

The Mods

saltmarsh

zipzap, thank you for sharing your experience. you are definitely not alone in feeling like an "impostor" on here. I almost started a thread a while back about that, and then was worried I might not be able to handle the replies, and chickened out.

as for your friends, I'd encourage you to try talking with one or more of them about how you're feeling. they may want to talk about it or ask you about it but not know how. or they may just think you don't want to talk about it. and even if they want to know how you are doing, they may simply feel like they just don't know the right questions to ask because (in likelihood) they haven't been through what you have.

the loneliness is real. I've felt it, too. I think most of us have and that's why we're here. certainly during Covid, there has been no safe way to gather with people going through similar situations.

I have wondered how I will feel further along in my treatment, and have suspected I'd have some similar responses or feelings to yours. Time will tell!

Gig57

Zipzap: I understand completely. I even had my doctor tell me oh well if you have to have cancer this was the best kind. Really!!! It was caught early and I am so grateful for that but it almost feels like this diagnosis is minimized by so many and I almost felt like apologizing (I know weird) for taking up their time. Lol. I am a very private person and having to bare all to so many doctors and techs was definitely a challenge. I really did not even share with many people as I felt like ok this is minor and I’ll be done soon and nobody needs to know. I was also told by some of the ones I did share with oh I heard radiation does not cause anything you will be fine. I was asked to do 4-6 weeks of radiation but after discussing with my RO about the travel time (3 hours)we decided on APBR so I was able to complete that in 5 treatments. So now I am all done with surgery and radiation but still have several years of AI and years of check ups. So yes it has been a whirlwind and now emotionally it hits home after all the appointments. I know God has blessed me and I see so many here who are struggling and having way worse symptoms and I pray he helps us all through gracefully. I honestly think unless you are actually going through it people don’t understand. I also work with a women who is stage iv cancer in her brain and spine so no I did not want to really bring mine up when her diagnosis is so much worse. I pray for all who have this disease. Glad I can speak my feelings out on here

exbrnxgrl

Gig57,

I lay the blame for the minimizing of breast cancer as a whole on all that is cute pink, fluffy, giggly, tata driven, etc. and those who continue to treat bc as a fun, happy, girly disease that is highly curable.

kksmom3

Exbrnxgirl, I agree, I had my surgery on October 1, 2018. I went to the hospital something like 5:30 am. Normal looking hospital. When they let me go about 1:30, the entire hospital was pink. Literally everywhere in the cancer center. They even changed all the light bulbs to pink. It was crazy! Honestly, I know this sounds stupid, but it traumatized me even more! I can't stand Pinktober or the pink ribbon crap that is festooned on everything! It's all BS. The whole month is triggering and does not bring me warm fuzzy memories! Why don't they do the same with ovarian cancer? My mom died from that, I'd like more awareness of that, or other cancers. Sorry about my rant! If the ladies reading this like the pink ribbon, then I salute you and I am all for it, for you! I don't want to offend you.

Gig57

Exbrnxgrl I know some like the whole pink thing and I don’t want to belittle that for those that choose to support that I guess for me I am just more private and don’t like all the hoopla surrounding that. I kind of agree with what some others have said and that is we get the diagnosis. Make decisions and do mostly what we are told. The emotional aspect is hard to explain I guess.

exbrnxgrl

No worries! I think we have members who embrace the pink and just as many who don't. Everyone seems to be respectful about it 😊. I was thinking about prostate cancer. What color ribbon should it have and where should it be tied 😉?

Lille

There are many different colors for different cancers! Prostate is light blue. As for placement I would imagine it's the same spot for all cancers, tied to our ass where we get to feel like a piñata!

I too, am glad for this thread. I hear myself saying I'm lucky...because I only had to have a bilateral mastectomy (piece of cake, right?), TE's for 5 months with fills that felt like they were breaking my back (severe muscle spasms), and then a revision (because things were not symmetrical/even/lateral).

But I didn't have radiation and I didn't have chemo. I don't even have to take tamoxifen because I'm hormone negative. Yet, I had three life altering surgeries over the course of a year. In addition my breast surgeon did a sentinel node biopsy on both my left and right side, thus lymphedema risk now for both sides. I can't use "the good side" for blood draws, I don't have one!

**As a note, this is not usual standard of care for a confirmed diagnosis only on one side. This was personal to my case and came after lengthy discussions between my BS and Head Radiologist reading all on my films. In layman terms, trying to read my scans/films was like trying to look though mud and there was genuine concern they could be missing something. They even had me complete two MRI's a couple weeks apart to see if my cycle made a difference. I wanted to scream in the tube the second time because the muscles from my shoulder half way down my back seized up and felt like there were literally on fire. I was afraid I would mess it up and have to do it again, so I screamed the last 15 minutes in my head rather than out loud.

...

And I -still- have trouble thinking that I can say that I /had/ "cancer" to begin with, y'know "real cancer".

...

Wasn't what I went through trauma enough?

Edited for clarity of thoughts. The trauma llama rose and and bit me, then I started incoherently ranting.