Feeling the "Imposter Syndrome" - Early Stage Cancer - Do I really count?
Okay this may seem weird and self serving. I know that I am fortunate to have my cancer caught early. Invasive Ductal Carcinoma. Had a lumpectomy and will start radiation this week. Not a long course from what I understand but I'm getting radiation and then hormone therapy, Estrogen +. I know how incredibly fortunate I am at this time to not receive chemo. I'm trying a support group but I continue to feel like I don't belong. I'm "not sick enough". Feeling the "imposture syndrome". I want to say, even though I'm an early stage I have stress and fears of where this can go. I've gone down the rabbit hole of what if I'm that percentage that does come back, get worse. I almost feel like my cancer doesn't count. Maybe it doesn't. But does anyone else in my situation feel like this? Or am I being just a whiner? Which is fine, I can accept that. Again, just putting this out in the universe to see if anyone else feels like this. Thanks for listening.
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Let me assure you that you ARE NOT alone in your feelings! I have had breast cancer three times, each was a new cancer not a recurrence. I felt, and currently feel, the same as you do! I just had an appointment with my breast surgeon a couple of weeks ago, told him I felt a small mass on my breast bone which is painful. It is in my most recently reconstructed breast, and he completely blew me off! He never even felt the area I was talking about and told me I shouldn't be doing self-examinations, I should let that up to the experts, like him! I told him I have bone pain and he blew that off too!
It is bad enough to have friends/family make us feel as if our cancer doesn't matter, but when doctors do that, well, suffice to say, that is probably the last time I will see that doctor!
My second Dx of ILC, was caught early, I had Oncotype testing on my surgical tumor but due to my age, my score, which would have indicated chemo would help in a younger woman, said it wouldn't benefit me because of my age. After both of my last two diagnoses, people would ask "are you getting chemo?" When I say no, but I'm on a hormone therapy pill, they kind of go "oh, then I guess your cancer wasn't that bad!
Like you I AM so grateful to have had small tumors, but I don't want to even mention the words breast cancer to anyone. I'm already have trouble dealing with the trauma, I don't feel like I should also need to justify my cancer treatments, or my feelings, to others.
Imposter Syndrome! Yes, that sums it up exactly!!!! I definitely feel that way.
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Well Mavericksmom let me tell you that you do matter. Your cancer "counts". It's real and I "see" you. It's odd that the ones that make me feel like I'm an imposture have been the other patients in my support group. Most are in a more advanced situation with a couple like me. But's it these peers that really have been the ones to make me feel this way. Why can't they see we are "sisters" in this because we really are no matter what stage you are in.
Anyway I support you. I see you. And, yes you count!😊
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Nightengale1: This is commonly expressed amongst women affected by breast cancer and due to the differing issues experienced by different stages, it is not surprising. Stage Four forums are restricted for exactly that reason. What should not be lost in all of the differences, is that each individual has their own fears and challenges and these realities should not be minimized by others. Early stages went through the same terror waiting for their final dx’s. PTSD results from the first mention of cancer. It is helpful though to find support from others who can relate to your situation. A support group for breast cancer is just too broad. No one should ever feel that their issues are not serious enough to be acknowledged and respected. And what may seem minimal to one may be catastrophic to another. Find a place where you feel heard, supported and respected. You do matter and your issues are real. No one should feel that they are not justified to feel as they feel. I hope you find the right place to be you and feel justified to address whatever you need. All the best!
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I was diagnosed with IDC, stage 1 HER2+, ER, and PR+ in my right breast last month and am scheduled for surgery on 6/ 24/2023. I work in the mental health field making it a little easier to divulge my diagnosis and get support from co-workers. When I told them one of them stepped up stating they had not ever told anyone that they had a mastectomy in the past and had a history of BC in their family. They have reached out to me as a shoulder to cry on but I feel like an imposter because I feel like I am not sick enough and should be able to "put on my big girl pants and move on". My fear, confusion, anxiety, and anger are the same as those who are in stage 4 or have had a mastectomy and should be validated and treated the same.
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Nightingale, yes you are justified in your feelings whatever they are. Get this. I felt the same . No chemo for me either. Same concerns... fast forward XX years and now I'm stage 4. Still no chemo. Still much anxiety. Still hormonal therapy. It can still be hard. Cancer is a slow grade 1. I assume it makes the difference. But I feel like a fraud. I'm not sick enough. Friends think I'm cured and through with treatment.
Best of luck to everyone here.
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Welcome to our community, heavenly12. As you can see, you are not alone! We're so glad you've found and joined our community, and as nightengale1 said, we see you.
The Mods
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I was diagnosed with 6mm IDC grade 1 Hormone +, HER - in March. I’ve had a lumpectomy, sentinel node biopsy, radiation (5 treatment accelerated partial breast) and will start on ALs shortly. And a whole lot of testing with a couple different types of biopsies thrown in. Plenty of waiting and a fair amount of frustration mixed in.
i completely understand. I feel the same.3 -
I am so glad to see your posts. I felt like an imposter when they told me they were going in for surgery LCIS and ADL. After the lumpectomy they found stage 1cancer…
I have another surgery this week to get clean margins from Invasive Ductal Cancer and will have a sentinel biopsy.
I am scared, don’t have anyone to talk to that isn’t “I am sure it’s fine”vs those in my family that won’t speak of it at all to friends who say “whatever you need” but don’t know what that is… because I don’t. I go from good and solid to mad and sad a bit later….
anyway… hope this post helps someone that might be feeling like me.
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Hi @pcbdreaming89 !
Sorry you had to join the club no one wants to be part of, but we're really glad you found us.
You are NOT an imposter! You are going through this every bit as much as any of us. None of us knows what the future holds and once dxd, that future becomes more full of fears.
This forum exists exactly for the reasons you posted. You're frightened and no one 'gets it'. I ran into someone a few months back after I finished my chemo. They said oh, you're 'done' now, so you're 'good' now. I just didn't know what to say exactly. I think it's them that wants to be assured that if they get cancer, they will be ok. They don't want to hear about that maybe not being true.
Take all of this one piece at a time. The fact that it sounds like it was found early means in all likelihood, you will be 'fine'. Take comfort in that. Don't let others reactions get to you. Who cares? It's all about you now. How are YOU feeling? We're here for you. I think it's important to post your feelings so others can help support you.
We DO 'get it' and we care. We're here to listen.
Take care!
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@pcbdreaming89 - Hello and welcome to Breastcancer.org, we're glad you found us!
It's completely okay to feel scared, and you'll find a space to express your feelings without judgment in this wonderful community. Whether you need someone to listen, share experiences, or simply be there, we're here for you.
Good luck with your surgery! Please, come back to let us know how you're doing!
The Mods
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Hi @pcbdreaming89. I appreciate your post! I’m so sorry for what you are now going through. One surgery is plenty! I hope your next one goes very well and you have a good recovery. This is definitely a process and an emotional rollercoaster! It hasn’t been fun, it’s doable but no one’s idea of a good time, that’s for sure!!
And thank you @mandy23 for your kind and helpful comments!! I completely understand the feeling like an “imposter” and still feel funny even saying I had breast cancer, despite having had a mastectomy! I felt way too healthy to have cancer (besides fatigue). All these months later it still is surreal.
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This is exactly why I joined. I've been feeling weird because I went in for a preventative masectomy and they found DCIS. I feel relieved to have followed my gut and had surgery. My surgeons were super supportive but some of family doubted if I needed such a serious surgery. They found DCIS on labs from my tissue that was removed. It wasn't on pre-surgery imaging. I feel like I'm in the in-between because they are saying I don't need further treatment but i'm afraid I might in the future. I struggle with a fear of dying young because my mom died at 49 and my grandma at 55 from stage 4 metastatic breast cancer. So the diagnosis scares me but I am relieved to have had my bilateral masectomy. I hate that we all have this but grateful for people who get it.
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I’m so very sorry about your mom and grandma @rancar ! The more I’m learning about breast cancer, the more I appreciate and respect the decision for preventative mastectomy. How are you doing? Are you healing well?
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Rancor, the fear is real just don't drive yourself nuts over this. Looks like you did the right thing - in time. Hopefully you will never have an issue again. Be glad you found us. Often family and friends dont get it. At least until their staring cancer in the face.
Best of luck to you
Gailmary
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@needs.a.nap Thank you. I am healed fairly well. I am doing physical therapy because I still don't have full range of motion in my arms. I am back to getting massages because the muscles in my back are very stiff from not being able to lift my arms over my head. @gailmary I am so grateful to have found this community!
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@needs.a.nap. I had a breasts reduction and DCIS was found in tissue removed. I chose to have a bil mastectomy due to the DCIS not found in a controlled biopsy. Glad I did have a bil mastectomy because a 4mm ILC was found in the left breast, and more DCIS in rt. I had a NORMAL mammogram prior to the breast reduction surgery. I was very low risk for BC, which I do not believe there is such a thing any longer. I am choosing not to do hormone blockers, or AI meds. I am early 60s, thin, active and know women on those meds and they have no energy for anything. My ILC stage 1, grade 1 well differentiated, slow growing, nodes negative. I still think about it so much though. It has been 6 mos from bil mx and SGAP fat flap reconstruction. I did not choose implants due to allergies.
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I’m glad to hear you are healing well @rancar. It is definitely a process. It’s good you are doing physical therapy and massage. How long has it been since your surgery?
It took longer to regain good use of my arm than I expected or what others on here are able to achieve. I still have some daily discomfort that seems to be normal for having a tissue expander. And I don’t have 100% full range of motion yet either but I can do most of my normal activities just fine. I know I need to keep stretching, that helps. I tried gardening a few weeks ago while visiting my family in a warmer climate and it felt SO good to exert myself. But I totally overdid it with vigorous and repetitive motion for over a hour, so I was uncomfortable and swollen in my armpit for a bit. It’s hard to gauge what is too much until it’s too late and I’ve overdone it.
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Hi @bchmom03 and welcome here! I’m really glad you posted your experience … I know I’ve been helped a lot by reading the experiences of others and it helps us make difficult decisions, hearing honest feedback from others going through similar stuff.
So wow! What a year for you!! How are you feeling and healing? It’s understandable that it’s on your mind a lot. It’s great you could get the ILC removed … that could have remained hidden for a long while. I’m learning so much more about the limitations of imaging to detect cancer. It’s great it detects what it does but I’ll never fully trust a mammogram again. It’s all unnerving how many of us who were “low risk” are getting surprised with breast cancer. I never saw it coming! Your choices all seem very logical. Are you relatively pleased with your reconstruction?
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Welcome, @bchmom03! Thank you for sharing your experience, it's so important for the newly diagnosed to hear these stories. We hope you're continuing to heal well!
The Mods
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nightengale1, I have very similar feelings about not belonging. I went to one zoom session with Dartmouth and even though I had one of 3 positive lymph nodes, my experience seems so much easier than the other attendees. I had a mastectomy on my left side, no radiation and no chemo. I just go for follow-ups every 6 months and will be on Tamoxifen for at least 5 years. I didn't attend meetings because I'm afraid I will say that I feel lucky. I also don't feel like I belong because I'm one of the 2700 males who get breast cancer each year. I haven't run without my shirt or told many people because they will think it's weird. I didn't have any reconstruction because that seemed a little excessive since I had the mastectomy at 65. Oh well, good luck to everyone.
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bcrnnr,
Sorry to hear what you are going through. I think many people don't understand the anxiety we go through. You still had surgery. I have to wonder what side effects might be like with less estrogen to start. Yet even with a hysterectomy at 27 I have plenty of SE with elimination of all estrogen.
My dad had it too but just surgery. Thought he was doing me a favor showing me his scar do I'd be prepared if I ever got it. Ha!
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Hi @bcrnnr !
I see you are fairly new to the forum. Welcome to the club no one wants to belong to. Sorry you are here, but glad you found us.
You BELONG. Your feelings MATTER. B.C. takes so many different spins and shapes that whatever your dx, it is every bit as real and frightening as everyone else.
Please do feel free to post and vent. We are here for support. If you want to read more about male breast cancer, there is a forum for that:
Due to the lower number of people impacted, it might not be too active, but sometimes even reading threads helps provide support.
I just also wanted to say that you are never to old to have reconstruction, if you want to. I am in the midst of my 2nd dx and 2nd reconstruction and I am 67. I 'get' the mis-givings too though…..I have sat in the pre-op area thinking…."What am I doing? I don't need to be here." BUT it's really about you and your feelings and you need to do what makes you feel closer to 'whole', regardless of your age as long as your other health is good.
You are a member of this "club". Post as much or as little as you desire or as it helps.
Take care of yourself.
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@needs.a.nap I am 10 wks post op from 2nd stage SGAP flap revision. I still have quite a bit of swelling and throbbing of breasts. The left is somewhat larger. Not sure if it is because I had axillary nodes removed 2 wks after ILC was found with double mastectomy and lymphodema? Also, my PS said the skin is thicker with left breast. I may have some lipo many months down the road if it is still larger. Seems a cup larger. It was a difficult surgery. The donor site had a seroma 8wks post op and had to be drained of 200ml of fluid. This SGAP flap surgery plus mastectomy at same time took 12+ hrs. Boy hard to get my strength back, the 2nd phase was not a cake walk either. I just could not go flat or have foreign body implants due to allergies and autoimmune. It has been a heck of a year for sure. Looking for an Integrative Oncologist. The regular one I go to now, treats all HR+ BC the same. I already have osteopenia, am 63 and am choosing quality of life instead of the harsh aromatase inhibitors. Plus 4mm ILC, lymphovascular fluids clear as well as nodes, stage 1 grade 1. He is giving me a hard time for not taking Letrazole. No mention of supplements, diet , just pushing pills. My estradiol level was 11! If I drop it any more taking AI meds, I cannot imagine what it would do to me. I am a petite woman, 110 pounds, 5’2.5 in. Nursed 3 babies. Only risks factors, female and over 50…
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Hi @bchmom03. You are brave and amazing!! Good night, you’ve had a year!! Any type of FLAP surgery scared me because I know I’m wimpy and couldn’t imagine the extra healing and discomfort. I hope you heal quickly and feel your strength returning!!
I know we have to be patient with ourselves as we try to find our “new normal”. I have my better days and then my bad attitude days. I really respect you not wanting to do the AI’s. I’m sure you’ve done your research and weighed out the pros and cons, based on the facts of your situation. I like hearing arguments for and against taking them … I know there are threads on here somewhere discussing alternatives. I should read them now that I understand things better. What a wealth of information is on here! But I’m sorry your oncologist is not respecting your choice.
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@needs.a.nap, I just saw your reply. Thank you , for your positive remarks. I have my good days and bad days for sure. This has been such an emotional time. I am trying to find a diff onc. Very hard. Hope you are doing well. We definitely need a better year in 2024. I am still recovering from the SGAP bil breast reconstruction. It is all settling down now. Doing much more and enjoying my grandkids.
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