Diagnosed with DCIS today - advice welcome!

Hi Everyone,

First time posting here. Great forum with lots of information and support, and I’m hoping to garner some after finding out today via a pathology report that I have DCIS.

I had a lumpectomy back in 2016 for a papilloma that turned out to be benign, and just this past month, experienced an excruciatingly sharp, shooting pain in my left breast, accompanied by a hard lump beneath my nipple. Got that checked out with an ultrasound guided biopsy and turned out just to be another papilloma. However, during the mammograms they did, some concerning calcifications were seen in my left breast. Had a stereotactic biospy to investigate the nature of these calcs and got the pathology report today that it’s DCIS with a high grade tumor, but with no invasive malignancy.

It has been an absolute shock, to say the least. I was breathing a sigh of relief after the papilloma diagnosis, glad it wasn’t something more sinister, but I guess I celebrated too early. I am quite young, too, just 36 years old, so I am quite befuddled at this diagnosis, considering that I don’t really have any other risk factors (other than that I had my first child past the age of 30, at 32).

I guess I’m just reaching out here for support and advice from others who may have experienced something similar, or any words of reassurance. I’m trying to keep calm, but my anxiety is, unfortunately, getting the better of me. It has been a lot to process over the course of a day.

I’m doing some research online about my possible options. My hope is that I can get a lumpectomy, but I know that will depend on the area concerned, plus the papilloma that I need to get removed. I am small-chested, too, so am worried this might translate into an ultimate mastectomy (something I am reluctant to entertain given that I am so young, and I don’t want to lose a part of my body). I’m having my consult on Wednesday, so will likely get more information then (I just had a breast MRI on Saturday, too), but waiting is so hard. Would love to get some information or support from others during this trying time.

Thanks so much in advance!

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Morning Literaturelover87

Firstly so sorry to hear that you’ve got this additional diagnosis to process after your previous papilloma experience. On the plus side though, it’s been captured early and is highly treatable. The difficult part for you is probably having to make the choice between lumpectomy and mastectomy. I had high grade 30mm DCIS and opted for mastectomy - I was 50, and had surgery last year. For me this was the right decision as I didn’t want to live with the anxiety of the DCIS returning or not all being removed and I was keen to avoid radiotherapy which is mostly necessary with a lumpectomy. I also wanted to let you know that having a mastectomy is far less traumatic than you might imagine. Surgeons are so knowledgeable and skilled these days and depending whether you decide to opt for reconstruction or to stay flat, you will be in safe hands. I opted for a skin sparing mastectomy with immediate reconstruction with an implant and had symmetry surgery on the healthy side to balance it all. I was amazed at how quickly I recovered… but right now you’re probably feeling overwhelmed with emotion, choices and worry. I did hours of research, spoke to breast care nurses, my surgeon, other women and knew in my heart of hearts I was happy with my decision.
I’ve recently had my nipple tattoo and I’m so pleased with it.
You will see light at the end of the tunnel … and you’ll have made the right choice for you.
Hope it’s helped a little.
Xx

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Hi @literaturelover87 ,
Sorry to hear you have a diagnosis of DCIS the good thing is this is non-invasive and if removed early hopefully you won’t have any further issues as it is contained to the milk ducts and doesn’t spread around the body.

My experience of the breast cancer teams has been brilliant and they avoid unnecessary surgery where possible, if you do require a mastectomy there are reconstruction options available, i have just had one using my stomach fat and am thrilled with the outcome aesthetically, my new breasts still feel real and i have no worries about a reoccrance.

Your team will be lead by your wishes i originally had a lumpectomy as I wanted to preserve my own breasts and again the aesthetic outcome was good but they weren’t able to clear the area hence the mastectomy.

Wishing you all the best x

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Hi

Firstly like others, so sorry to hear about your diagnosis.

Back in August 2022 I too had extensive DCIS in my left breast. I was 52 years old and no family with breast cancer - so too pretty shocked about it all.

As I had a lot of calcification in my breast they suggested a mastectomy, but to be honest I think this was best for me as like other comments I don’t think I could have coped with the ongoing anxiety of it spreading and would rather have everything removed.

I was lucky enough mine was not invasive and opted for mastectomy and then to remove my nipple too.

I chose to have immediate reconstruction, by them removing my tummy fat and putting this in my breast. (DIEP flat).
The result is amazing, very much like my right breast, less a nipple!! Which I am going to a picture tattoo in the next few months over my breast.

Even though you may feel very over whelmed at the moment, there is quite a few paths for you to go down. Speak to your cancer nurses and they will help you.

I am happy to speak or share pictures if you think this may help you

Thinking of you and all the best
Xxxx

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Hello literaturelover87,

Sorry to read that you’ve been diagnosed with DCIS after finding calcifications on a mammogram. My experience was very similar to yours although I didn’t have papillomas, but numerous benign cysts that had to be drained then they sent me on my
way saying I was fine. Then, on a later mammogram they spotted the sneaky
little calcifications. So I understand your shock at your recent diagnosis.

You will probably have a lumpectomy, I think it’s the usual protocol. I was going to have one but my mammograms were re-read and other areas of DCIS were found and I also had a 10mm invasive so I did end up having a mastectomy That’s just me though.

Thank God for mammograms that show up calcifications really well.

Wishing you all the best, you’ve got this.

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Hi @Summer-sunshine

Really appreciate your positive and helpful response!

So good to hear that there are options available to me should I require a mastectomy. I’m interested in the surgery where they use your stomach fat to reconstruct your breast. However, does one need to have a substantial amount of stomach fat to pursue this option? I am quite slender and don’t have a substantial tummy.

I’m so happy for your that your new breasts feel real and are aesthetically pleasing to you. It’s important to have a confident self-image, and I’m thrilled that things worked out so well for you in the end. Shows how important perseverance and staying strong/positive is :slight_smile:

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Hi @cheerful50

Thank you for your kind and helpful response, and for sharing your own experience!

I can understand your ultimate choice to have a mastectomy done. It is so daunting to think about the prospect that the DCIS may recur, and of course, the idea of radiotherapy.

So happy to hear that you were confident and at peace with your decision - that’s the most important thing. And now, you’re using your experience to help and comfort others. Thank you for giving me some positivity at a time where sinking into fear or despair is very tempting.

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Hi @Frances55

Thank you for your response!

I can totally relate to your initial feeling of shock upon learning of your DCIS diagnosis. Breast cancer was one of those things I was aware of, but never thought I would ever have to confront. As a young and (what I thought) healthy woman, I always just thought, “What are the odds?” It always seemed to be something that affected older women, but I learned today that no assumptions like this should be made. You just never know.

In a way, I am grateful that my papilloma was symptomatic (caused me pain, bloody nipple discharge). This is what prompted all the testing and biopsies (which I completely thought would come back benign). Without these symptoms, though, I would never have sought medical treatment, would probably never have gotten a mammogram until I turned at least 40 or 50, and then… well, perhaps at that stage, the diagnosis might have been even worse.

Sorry to hear that you’ve had cysts that have needed to be drained. Ouch. When I first felt the pain about a month ago, my family doc thought I probably had a painful cyst, too. I probably have quite a few cysts in my breasts, but they are asymptomatic.

And yes, I echo your sentiment - thank God for mammograms that detect these malignancies. It isn’t always easy, though. I’ve been told I have dense breasts, which makes it harder to see things like calcifications on a mammo.

Keeping my fingers crossed for the best. Thanks for your encouragement and reminder to stay strong and positive!

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My DCIS was caught early via an annual mammogram and a biopsy. My cancer was estrogen and progesterone positive so I had to stop my hormone replacement therapy. I opted for the lumpectomy since my cancer (calcifications ironically within a papilloma) was not invasive. My right breast is definitely smaller following surgery but I’m okay with it. The surgeon said she could even things out and insurance would pay for it. My surgeon said LCIS was also detected in the biopsy. I had radiation therapy for three weeks followed by Tamoxifen for the next 5 years to reduce the risk of recurrence. I feel for you with the waiting game. I pray the doctors have a good direction and you can feel confident in your treatment and any decisions going forward. Hang in there.

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Hi @Dawnado24

Really appreciate your helpful response!

So glad to hear that yours was not invasive. I can definitely understand the constant worry of the DCIS spreading and how that led you to make the decision for a mastectomy. Great that you were able to have immediate reconstruction with the DIEP flap, too! Question: does one need to have a lot of tummy fat in order to be considered for this procedure? I’m curious if slimmer people like me, who don’t have much of a belly, would be candidates for the DIEP flap.

It is so heartening to hear that you were satisfied with the results of your surgery and reconstruction! Best of luck with the picture tattoo, too - must be exciting :slight_smile:

Thank you so much for your kind words of encouragement - they are invaluable to me at this time! Will reach out to you if/when needed, so thanks for the offer.

All the best!

Hi

Lovely to hear from you again.

I’ve always had a very flat tummy but over Covid did over eat a little, so I’d say had a little belly fat. But wouldn’t say I was fat at all. I was worried I wouldn’t have enough, but it’s surprising they didn’t need much.

My boobs are only small (size A cup) so didn’t actually need much fat to fill my left breast. They mentioned more about blood supply, but as I’d never had any abdominal surgery, all was ok.

When you discuss options, they will say what you are able to have. My first choice was fat from my bottom, but so thankful I got talked out of this (as how will I sit down after operation!!). So opted for the DIEP flat, which I am so glad I did have this.

I tried to stay very positive before and after my operation (which is obviously easier said than done), but definitely helped in my post operation recovery.

My friend also had two separate mastectomy’s, one using muscle from her back and the other a few years later the DIEP flap surgery - and she thinks the DIEP flap is the better of the two.
But again this is a personal choice.

As I said I am more than happy to chat more if you have any other questions. As I’m sure you will have many questions.

Stay strong and sending big hugs
Xxx

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Just seen ur post yes I’m having double mastectomies next Wednesday. Discovered a month ago at self referral for mammogram had no symptoms just heard could have one at
My age and empathise with all who go through all the Emotional of shock, tears, worry. Anxiety sleepless nights loneliness etc. my family don’t want t me to have implants so not thinking of that at moment. My husband says he s in love with my brain and not worried what I look like considering my brain is mush at moment that’s amazing. Keep in Touch on your journey this is all so helpful touching lives of other people going through this much lovex

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Welcome to the forum @literaturelover87

I’m sorry to hear what you’ve been through, and glad that you have reached out here. The forum is a very kind place, and I hope you find the support you are looking for.

We know that anxiety can be really challenging and we have some information on our website that you may find useful: Stress and anxiety after a breast cancer diagnosis | Breast Cancer Now

Please also know that our breast care nurses are here for you, the Ask our Nurses your questions forum board or over the phone 0808 800 6000.

We’re thinking of you,
Lucy

Hi @Dawnado24

Thanks so much for your response!

Just wanted to let you know that I’ve sent you a private message. I look forward to connecting with you!

Hi @txtrips

Thank you so much for your response, and for sharing your experience.

I’m glad you were able to get a lumpectomy and to thus keep your breast. And thank goodness that your DCIS was caught early so that you could begin treatment. I, too, am thanking my lucky stars for the papilloma that became symptomatic. Because it was causing me breast pain and bloody nipple discharge, this prompted me to seek medical attention.

Did your papilloma ever present with discharge?

I’m asking because I had a consult with my radiologist today, who told me that she thinks my recent bloody discharge from the nipple was due to DCIS and not a papilloma. According to her, papillomas don’t often present with bloody discharge (but I’ve had two papillomas and both have given me bloody discharge, and bloody discharge is a symptom of a papilloma, according to Dr. Google). From what I know, DCIS doesn’t usually present with any symptoms.

Of course, I can’t be certain what exactly was causing the bloody nipple discharge, but my guess would be the papilloma, as it is right behind my nipple, too. The DCIS just seemed to be caught incidentally because of the mammos they did.

I’m glad that you’ve triumphed in your journey towards health and wellness and appreciate you sharing your experience with people like me, who are still at the early stages of this road!

Hi @literaturelover87

I have just seen your post and wanted to reach out as I experienced almost an identical diagnosis this exact date last year! I too was 36 at the time, with a 1 year old son and it really was a huge shock!
I had 2 lumpectomies in the hope to save my breast, but unfortunately the DCIS was extensive and in the end I opted to have a mastectomy. It turned out that it was the right thing to do, as following that, the breast tissue removed was found to have a further 119mm tumour!!

I too as others did, opted for an immediate DIEP reconstruction using my tummy tissue. I am quite curvy, but actually had very little tummy tissue, however, the surgeons were amazing, and managed to give me a beautiful full breast and I have a reduction on the other side to match.
The recovery isn’t easy but it was totally worth it for me. Like you, being young really played a factor in my decision for that surgery, as I wanted to feel like me as far as possible!

Thankfully, a year on I am able to look back at this experience as just a blip in my chapter of life. I have been put on the list for a nipple reconstruction and am enjoying life with my son to the fullest! I want to have another child, and have been told to wait for at least a year post surgery, so this is something I will be thinking about around Christmas time. Apart from that, I have no further worries and will continue to be vigilant and have my yearly check ups.

You’ve totally got this! It will certainly not define you and God-willing, in a years time you will look back on this like me, as a tiny part of your story. Sending love and strength to you! xx

@raet87 Wow, thanks so much for your inspiring and positive response!

Sorry to hear that you had the same diagnosis as me, and with a one year old to boot! Must have been so challenging for you. I was speaking with my breast surgeon today and he was telling me how rare it is for someone as young as me to be diagnosed with DCIS. I suppose people like us are considered rarities.

So glad that you opted for the right choice. A 119mm tumour - yikes! I definitely think you make the best choice with the mastectomy.

I’m hearing more and more good things about the DIEP reconstruction and am leaning more towards that as an option if it is one that is available to me (still need to meet with the plastic surgeon). It just seems like a more natural route to go and seems like it ends up yielding better results than implants. Only downside is the long surgery and longer recovery time. I know it sounds so crazy, but I am just super worried about missing work for such an extended period of time (I’m a teacher, so was really hoping to get the surgery done this summer and be back at work for September). I am hoping against hope that being young and relatively healthy (other than the breast disease) will help me recover more quickly.

Very glad to hear that you were happy with your DIEP reconstruction, and reassuring to know that the surgeons were able to complete the procedure even though you didn’t have much tummy tissue! I’m a bit worried about that for myself. I am quite a slender person and am wondering if I’ll have enough belly fat to go through with the procedure.

Thank you for your encouraging words. At the moment, this all still seems like a really bad nightmare that I can’t wake up from. There are moments in which I feel I’ve accepted the reality, and then also moments when I feel tearful about losing a part of my body.

Do you remember approximately how long it took you to recover from the DIEP flap procedure? Was wondering if being younger and relatively healthy will help expedite recovery from such a surgery.

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Wow… this is scary… I’m a teacher too!!!
I had my surgery on November 9th last year and returned to work on February 5th this year, so I was out for 3 months. It wasn’t easy to be away for so long but the whole school community were extremely supportive! I had some issues with wound healing which extended my recovery time, but also it is such a major surgery I just wanted to ensure I was as ready as I could be to return to school.

My surgery was very long! I was under for exactly 9 hours! Those first days are hard I will totally honest with you, but the progress you make is very quick and I think being younger does help.
x

@raet87 What a coincidence! What do you teach and which levels (elementary/high school)?

I’m glad to hear that your school community was so supportive and that you took your time to make sure you had fully recovered before returning to work.

Yes, I’ve heard that mastectomy with DIEP reconstruction is a very long surgery… basically a day-long surgery. That prospect is a bit daunting, but then again, it’s not like you were awake during it (thankfully!).

What kind of things did you find particularly helpful during your recovery?

Hi @literaturelover87
Sorry I somehow missed this!! I am a science teacher (chemistry specialist), but I am now head of a primary.

Honestly I just made sure I was prepared before the surgery. Put things in places I could get to easily, had a wedge pillow so I could lie up in bed (as it aided the transition into and out of bed). Got a litter picker grabber thing, so that I didn’t have to bend if I dropped something.
I was VERY lucky in that my husband works from home, so he was around to help although I tried not to disturb him. My mum also came to stay with us to help me out and with the baby. Both of them were a God send as I would have struggled without their help. Also just keeping in touch with friends. I didn’t want visitors as it’s not the prettiest of recoveries with the drains etc. but just knowing that there were so many out there rooting for me was a huge positive.

How are you doing anyway? xx