Very small DCIS and imposter syndrome

Hi all

I was diagnosed with a small 7mm non invasive intermediate-high grade  dcis 6 weeks ago and had WLE 1 week ago. This is going to sound so stupid, but I’m struggling to feel like I ‘belong’ in the C club. 

The oncologist told me about the cancer by saying as soon as I sat down for my biopsy results “as cancers go this is nothing to worry about…” I wasn’t expecting that and was struggling to keep up with him while I tried to take in that everything wasn’t OK. I feel like he was constantly saying, it’s really small, it’s very early,  its nothing to worry about, we’ll just do the WLE and then see results. Minimised it so much, it made me feel having any reaction was an overreaction. 

It kind of left me feeling like I don’t have the right to be scared or worried, cos everyone else’s is worse than mine so what am i doing feeling sorry for myself? Even writing this I feel some sense of embarrassment.

But, I have struggled after the surgery,  with my sense of who I am (usually a strong fixer and rescuer of others) and can’t reconcile this feeling weak/vulnerable when I ‘have no right to feel this way’.

As ER positive I also had to come off my wonderful HRT which has helped sooo much feeling strong,  healthy and vital. I’m struggling with all of this.

I’m sorry to write all this. I have post op results in 3 weeks time. 

Thank you, this looks like a lovely and beautiful community ?

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Hello Suzcan,

So pleased that you’ve posted on the forum today, I really feel your surgeon should been a little more care careful with his words. Cancer for everybody it’s such a horrible place to be big or small I’m sorry to hear that you feel that you’re being stupid or overreacting because you’re not we will be in there and now we’re here for you.

Try to be kind to yourself, lots of TLC take good care and let us know how your recovery is going 

biggest hugs Tili :rainbow: :rainbow:

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Hi Suzecab,

 I am sorry you feel the way you do, I am sure that your surgeon was just trying to make you feel better about your diagnosis and the treatment and would be horrified that his words had such a negative effect on you. My surgeon said similar things to me but I took comfort in the fact that he knew what he was doing and that everything he planned treatment wise was with my welfare in mind. I do understand a little of how you feel as at the end of one of my appointments the breast care nurse seemed to think I was upset and worried, I wasn’t, and a told me not to worry as they would fix me because it is what they do all the time, she actually said ‘it is our bread and butter’ which for some reason really annoyed me, I think because it seemed to trivialise the whole awful experience. She is also the same nurse that keeps mentioning my age as though she thinks I am ancient, I am 64 and I would guess that she is in her 50s. Again I don’t think she realises that what she says is having the opposite effect to what she is aiming for.

Anyway sorry for waffling on, what I really want to say is that cancer is cancer no matter the size and stage it is at. Some of us can consider ourselves lucky that it was found early meaning the treatment may be less invasive and more effective but we are still unlucky that we have to go through it at all and are allowed to have all the feelings that go with a diagnosis.

Please try be kinder to yourself and know that you are not alone. I wish you well with the rest of your treatment. xxx

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Hello! This is me too. And I haven’t even posted on this forum yet as I feel exactly the same. Mine is 6mm DCIS and I felt weird when the lovely nurses were giving me leaflets for support groups and talking about calling Macmillan. So many other people have had much worse diagnosis. Totally get that shock when you hear the word cancer and then that feeling of imposter syndrome. But I’ll tell you, and in doing so tell myself, that this is shocking, it’s hard, it’s scary (even though it could be much worse). Biopsies are horrid. Scans are painful. Surgery is quite terrifying and we are entitled to support. I’m having my magnetic marker implanted today and I am dreading it  

Thank you for being braver than me and posting this. I feel exactly the same and have taken great comfort from the replies. 

I feel less alone and now I hope you do too. 

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Hi Suzecab, I too have been diagnosed with DCIS Intermediate size 21mm x 17mm. I understand how you are feeling as I had a couple of comments similar, but after researching and talking with my BCN, I now understand that it is cancer that hasn’t grown legs yet!! I’m going in for surgery tomorrow morning and I’m soooo nervous. How did your surgery go?

Karen

Oh I totally relate to your situation.  I got a mammogram recall in July and after an ultrasound was told it was likely DCIS and 5mm and straight to the next room for a biopsy! Go back a week later for the results to be told it’s high grade pleomorphic LCIS and needed surgery!! I was in shock, but had the WLE by the end of August.

I was totally prepared for radiotherapy or medication but was in total shock when I was told I needed no further treatment, they had taken 6mm and I just need annual mammograms.  I feel conflicted - I didn’t have cancer, but I’ve had cancer surgery and if left undetected it would have developed further, possibly invasive.  I know I’m extremely lucky as others are in a much worse situation than me, but it’s still hard to get your head around. 

I hope you’re doing okay xx

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Suzecab,

Breast cancer is a very large club.

I have had it for one year,

getting use to it now. 

At 1st it is shocking news, tears you to bits, weak in the knees feeling.

Then, after a while it sinks in. It is ok to not be ok. Perfectly normal.

We cope.

Winda

Hiya. This is exactly the same for me! Inside I’m scared, worried and frightened for the future but feel I can’t really voice this as “it’s only DCIS”. How have you coped? Did your surgery go well. Hoping you’re ok

Hi I had 3 invasive tumours picked up on my first mammogram aged 51. I have had the same feelings as you about being an imposter as my sentinal node was negative and once I had my mastectomy and DIEP rebuild I was told you will be fine now. I haven’t allowed myself to think things through since I was diagnosed in January until now 8 weeks on from surgery. I know I am so lucky to have had it picked up very early but it is now hitting me I am in recovery after breast cancer

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Hi Sophie

It takes time doesn’t it! I’m glad you got the all clear after treatment, but it doesn’t take away from what you’ve had to go through, doesn’t neutralise the shock,  the surgery, the experience,  it just means you don’t need further treatment. It baffles me how we go through all this,  and still feel like we shouldn’t have any response or reaction to it,  because what - it wasn’t worse? We weren’t lucky to get a diagnosis, or lucky to have treatment. We’re just fortunate that it was found and treated. 

Sending hugs & love to you in your recovery ? :heart: 

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Thank you so much for your message it was so kind. I thought I was alone feeling that way until I read your message. It has helped so much when I was talking to the breast nurse about the ongoing issues I have with pain. I hope you are now well and in a good headspace. My friend told me when I told her about your message that cancer is binary, you either have it or don’t and that still needs dealing with whatever the size and Drs forget that. Thank you again for replying it means so much

Hello
I feel exactly the same - impostor syndrome is apt. First mammogram, 2 biopsies, lumpectomy 4 weeks and diagnosis of 8mm non invasive DCIS intermediate grade. Further surgery booked for 2 weeks then radiotherapy. And yes stopped my HRT. Keep getting told you are lucky it’s been caught early and will be fine. I don’t feel lucky. I feel an emotional frightened mess. But feel I can’t complain as I am lucky compared to so many.

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Hi. Like all the other replies I also know how you feel. I had a 25mm lump removed then 5 sessions of RT almost a year ago. I felt very fortunate that it wasn’t worse but got fed up of people telling me how lucky I was. I didn’t feel very lucky. If you’ve sat in a room and been told you’ve got cancer no matter how bad you have the right to feel exactly how you want to feel.

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I totally get what you’re all saying. Mine was 8mm tubular ER /PR + .I was told that after removal I needed radio and hormone therapies which are not entirely risk free , just to treat a tiny slow growing thing which rarely spreads and was really nothing to worry about - did not compute at all , complete head f***.

I joined the SMALL trial and was randomized for VAE ( removal of cancer under ultrasound guidance ) which almost convinced me that it wasn’t “real” cancer cos I didn’t need an operation.

I don’t think that anyone who is diagnosed with cancer is lucky and we are all entitled to feel the way we feel and work through it in our own way. Our clinicians , lovely as most of them are look at your cancer more than you as a whole person and how your life is affected.
I was diagnosed after having other health problems and 7 months after my Mum died . I’m a Health Care Professional myself , I knew it could have been much more serious and found the words "I’m fine I’m lucky " coming out of my own mouth but it was like someone else was saying them.

When my VAE was unsuccessful and I needed surgery ( the last 2 weeks of waiting for that decision were awful ) then Dad became ill while I was having radiotherapy I didn’t feel lucky at all . More like a boxer who has taken too many punches to the head. And I know that everyone has had bumps in the road along their own journeys.

The Moving Forwards course helped a lot , knowing that it was ok to not be feeling ok , finding that we were struggling with similar things as well as our own personal issues .
Whatever the grade or stage, cancer changes you. It changes your life and the way you feel about yourself your body and many other things - so believe me there are no imposters here.

Much love
Joanne

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Hello, I too am feeling this; imposter syndrome is exactly it!

Mine was invasive stage 1 at 9mm and hormone positive so same treatments-off the hrt (hardest bit so far) and on to tamoxifen, radio therapy in a few weeks.

I felt fine with a decision to stay off work for a few months as I’ve young children and other health issues, plus the hrt. But then had extreme anxiety about it, feeling like I should be back at work and more able to cope.

I have friends Who’ve had triple neg and chemo etc.

Part of this coincided with 2 weeks post operation and stopping all the Hrt. Brain imploded. That was about 3 weeks ago.

Bizarrely so far on day 4 of tamoxifen some symptoms are better, I can focus, though others challenging - freezing cold all night and insomnia.

Ultimately we are all having the same treatments. Post op we are all post cancer. 5 years of tamoxifen and no hrt can be a challenge.

I’m finding counselling helpful. Was told not to do “shoulds” this week. I’m also finding some exercise helpful too.

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Hi, me too. I had never heard of imposter syndrome before being diagnosed in July. Mine was invasive 7mm, ER/PR positive, but HER2 negative. Told lumpectomy, radiotherapy and 5 years Letrozole. Like you, I felt very lucky to be diagnosed so early after a routine mammogram, no lump felt or symptoms beforehand. Waiting for the surgery I started to read other peoples stories and realised how much more others have to go through. I felt blessed I did not need a mastectomy, or chemo (which to be honest was my worse fear). It was then that the imposter syndrome kicked in. Especially with people saying things like “you will be fine, it’s caught early”, “you have got it easy” . It is definitely not ‘easy’ is it. I just wanted to get the surgery over and move on. Wanted to go back to work 2 weeks after the lumpectomy, but that changed after results when they did not get enough clear margins and I needed another lumpectomy. Await results now. I hope to go back to work next week. Was told I might not need radiotherapy if all clear margins this time. My lymph nodes were clear. Being on here definitely helps to make you realise that no matter what stage, grade or what treatments we have to endure, we all deserve to acknowledge that we are all in the same boat and are fighting it no matter what others say or think. Keep going ladies. Hugs to you all xx

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Make sure you don’t try to rush going back to work Tessa . It’s one thing doing things at your pace and in your own environment where you have some control . Once you get there you’ll be going at someone else’s pace . Claribee’s point about not doing "shoulds " is a good one to bear in my mind. From experience I know that going back too soon then having to go off again just makes things more complicated .
Obviously I don’t know what you do but maybe you could have a phased return .

Keeping my fingers crossed for you re your results
Joanne x

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Thank you Joanne. You are right I have been in my own environment for weeks, but do want to at least try to go back. I only work part time, 4 afternoons a week and in an office. They have been great so far, so I will see how it goes. I will have a lot of support there, so I will not have to do any lifting etc. Hugs x

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Hi, I got great results, all clear margins this time, very happy about this. I see the radiologist next week to see if I need radiotherapy, they think I might not. Will have a dexa bone scan in the next few months. Started the Letrozole pills and calcium pills four days ago. So far so good, I take them before I go to bed, so have only had a few aches and pains, and a few hot flushes. But all bearable. I hope it continues like that. Hope you are doing ok xx

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Oh that’s good news Tessa - and wishing you good luck for your appointment next week . I also hope you continue to get on ok with the Letrozole.

I’m fine thank you now I’ve got over my second bout of Covid . Building up the walking again and hoping to be able to lose the pounds I put on when my appetite came back !

Joanne. X

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