diagnosed with DCIS - 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 reaxching out here for support and advice for 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 biopsy 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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literaturelover,
Welcome but sorry you are joining us. DCIS is considered highly treatable and some doctors don’t consider it a true cancer because it’s not invasive. That being said, just hearing the word cancer attached to your diagnosis is stress inducing and anxiety provoking.
Let me say that despite your age and lack of known risk factors, breast cancers do occur. Lack of risk factors tip the odds in your favor but are not a guarantee. Yes, it is less common in younger women but not unheard of.
As to online research, seeking knowledge is always a good thing but, the internet can only deal with generalities,not the specifics of your situation. There’s some bad information out there as well. The online research does put you in a position to start a list of questions and having them on paper or your phone is helpful. I would also ask the doctor if you can record the visit as a lot of info will be coming your way so it’s nice to be able to absorb all of it at your leisure, because it may be a lot to remember during a busy visit. Take care1 -
We're so sorry you find yourself here, @literaturelover87, but we're glad you've joined our community and reached out for support! We know this is a lot to process, and you have more questions than answers right now, but we're here with you every step of the way.
Also, we want to let you know we offer very supportive, moderated Virtual Community Meetups. There are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups.
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Hi @literaturelover87 . I'm sorry you find yourself here as well. I am also someone who has had papillomas and expected the result to come out that way again in the last biopsy - but surprise DCIS high grade.
My situation I think is probably quite different because I'm 55 and had multiple papillomas (which I think is higher risk than single papillomas - and turned out to be very extensive in my case) and I also have a CHEK2 genetic mutation, putting me at higher risk. My first papilloma was diagnosed over 20 years ago and we just monitored for all that time, never removing them (which I always wonder if should have been done - so I think it's good yours was), but I had several biopsies over those years. When I was diagnosed with DCIS this past year, I decided to do bilateral mastectomy because imaging in my case is so hard (very dense and busy breasts) but mainly due to the genetic mutation. But in your situation it may certainly be reasonable to do a lumpectomy if there are not additional risk factors. My sister was diagnosed with DCIS 6 months after me and despite the same genetic mutation, her choice which was supported by her team was lumpectomy with radiation.
Wishing you the best! Waiting for a plan is one of the hardest parts and it's easy to get ahead of yourself with worry. Hang in there! DCIS is very treatable.
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@triscuit Thank you so much for your helpful response.
Papillomas suck, don't they? My first one 8 years ago also caused me extreme shooting pain and bloody nipple discharge. I was scared out of my wits and thought for sure I had breast cancer. I'm glad they removed it, but there was no follow up or further screening for me because of that initial papilloma (probably because it was ultimately benign). I wonder if I had been closely monitored, maybe they would have caught the DCIS earlier? Anyway, no point in guessing…!
I think you made a prudent choice to have a double mastectomy because of the genetic mutation. And you seem to be doing great, which gives me hope. Thank you again for your response and for giving me some much-needed positivity!
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@exbrnxgrl I really appreciate your response!
I think you make a good point about how breast cancers can occur for anyone, regardless of risk factors. I am a case in point, I would say!
Thanks for your tips about coming up with questions to ask during the consult. I have started making a list after doing some research online and plan to bring my husband with me so that I don't feel completely overwhelmed with all the info and so there is another pair of ears other than mine listening to the doctors' suggestions. I'll try asking if I can record it, too.
Thanks again for your response. It is helpful to have some virtual support during this stressful time!
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@literaturelover87 papillomas do suck, indeed! My first one I found out about after I found blood from my nipple on the massage table when getting up after a nice long massage. Kind of negated the relaxing effect I was going for. I had some degree of bloody or brown discharge pretty much always over the year if I expressed it (not spontaneously).
One thing I will add is that surgeons can have different opinions and getting a second opinion can be valuable if you are not sure, or just to verify the recommendations. I went for a second opinion to a high risk breast clinic, even though I really liked and trusted my breast surgeon who I'd been seeing for 20 years. That's actually how my DCIS was discovered. I still see my original surgeon but my surgeries were done a 5 hour drive away because I felt more comfortable with their experience seeing cases like mine (and lack of local plastic surgeons the other big factor). Just to say, it was not a rush and I took time to decide my options and make sure I felt the best I could about my choices.
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Literaturelover87:
I had grade 2 DCIS in 2013 that was so extensive that a mastectomy did not create negative margins. I was so distraught. The fact that I didn’t know it was purely DCIS for at least 6 weeks didn’t help. I had planned my funeral. The word cancer is so alarming. My treatment ended up being so extensive for DCIS. I had a mastectomy and then radiation. Hard to convince myself it wasn’t serious. Looking back, I wish someone had helped me put things in perspective. I wasn’t going to die except in many years in the future and more likely of anything besides DCIS. It’s so difficult to assure ourselves during initial dx and yet that’s when we need to make all the decisions. I hate when people minimize DCIS to the point our fears and feelings are not legitimized but also hate to see the excess stress and worry that this dx creates. Please try to find the balance, take your time in making decisions and know your future is something to plan for and celebrate
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You need to do what is best for you and your own health. Hang in there is something that never goes away with worry no matter way once you have a cancer diagnosis. Best wishes and hope you heal well. You will find good support with others who have surgery at the same time as well.
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@triscuit Ugh, sorry to hear about your experience with papillomas. That must have been so unsettling to learn that you had bloody discharge from your nipple right after a massage!
With my 2nd papillary lesion, the bloody discharge only came out when I was undergoing mammographic screening. Up until that point, it had just been sharp, shooting pain behind the nipple and a lump behind there as well. And then after a few days, the pain eased up and the lump became smaller and softer, too. When we got the pathology report back, it was apparently a papillary lesion with extensive necrosis. It was suggested that the papilloma had probably twisted its position and then started going though necrosis or cell death. That probably explained why the pain eased up and why the lump got smaller.
Thanks for your advice about the second opinion. I was actually being seen at one hospital, but then wanted to seek out another opinion, so got a referral to a hospital that is renowned for their work in and treatment of breast cancer and other breast issues. Am so happy that I am being cared for in this facility - I just feel more confident in the expertise of the doctors working there, not to mention that everything runs so quickly there (it's a rapid diagnostic center as well, so results of your biopsies/imagings come out practically the next day to ensure prompt treatment).
I'm happy to hear that you chose to pursue your treatment and surgery in a facility where you felt most comfortable and confident. That is so important. And look where you are now! Really gives me hope :)
I will admit, I get anxious when I get a notification that my results are back. That's the thing these days - having ready access to your medical records if you sign up for the app or the patient portal. While I see the benefit of this, it is also extremely anxiety-inducing!
Update: I had my appointment with the radiologist and nurse practitioner just yesterday and received some bad news. The DCIS is actually extensive across my left breast, which leaves no choice but a mastectomy. I was shocked and so sad to learn this yesterday, but I feel like it's starting to sink in, and I am slowing getting used to this idea. I had originally thought I might be able to get away with just a lumpectomy, but I wasn't so lucky…
Furthermore, they noticed some areas that lit up on the breast MRI for my right breast too, so they did a biopsy of one of the three lesions there. Got the results today and thankfully, it was benign. Still need to do an MRI guided biopsy of the other two lesions in the right breast, though… keeping fingers crossed that all will be fine.
The radiologist yesterday gave me her honest opinion: she told me I should consider a double mastectomy because I have very dense breasts that will be difficult to follow, as their density makes it hard for things to be seen on imaging. I was taken aback by this bold suggestion, especially because no malignancy has been detected yet in my right breast. So I felt it was a bit premature. I really would rather not lose my right breast, too, if possible.
I have my consult with the breast surgeon tomorrow. I've made up a list of questions to ask and am hoping that the visit tomorrow will be informative and reassuring. I am still feeling anxious about this big procedure, and I definitely want to look at reconstruction options, too. Did you have reconstruction after your double mastectomy?
Thanks for sharing any info you can offer :)
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@tb90 Thank you for your response.
I am sorry to hear that you had to have radiation even after your mastectomy. That must have taken a real toll on you! I also may need to explore this option, because at the moment my diagnosis is DCIS, but only after the final pathology report after the mastectomy will they determine whether microinvasions have occurred.
A DCIS diagnosis can be confusing… it's stage 0 cancer, so some people question if it really is cancer. I feel encouraged that it is highly treatable and has an excellent prognosis, but of course, feel very worried that the cells in my breast are so abnormal and have mutated so much :(
Trying to keep positive, and messages like yours are helpful. Thank you again.
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@bcincolorado Thanks so much for your kind and encouraging response. I am trying to draw strength from wherever I can during these difficult days, and reading responses like yours definitely helps!
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@literaturelover87 I'm sorry to hear that your DCIS is extensive and a mastectomy is necessary. That was my case as well, although the extent of it wasn't really known until the surgical pathology. Although nothing had been found in my right breast it was also very dense and busy - and I had several biopsies there too over the years - so I never really considered not doing a DMX. It's a hard thing to get your head around and I struggled a lot with the fact that I was making that decision when it was the "least bad" breast cancer. I cried a lot about it.
I really thought I'd choose to go flat if it ever happened to me, but I changed my mind when I met with the plastic surgeon to hear all the options. I ended up going with implant reconstruction. Seeing some pictures of women with body types like mine helped me recognize what I would be most comfortable with. It was a really agonizing time during this decision phase. A year out I think I made the right choice for me right now, but it's a lot to go through.
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@triscuit Sorry to hear that was the case for you, too. I honestly was taken aback when I got the DCIS diagnosis, and especially so when I learned that it is extensive… measuring about 7cm, I was told. The breast surgeon I met with today told me that I am a rarity, as it mostly affects older women. And for me, as someone who is in my mid-30s, I am considered a very young person to have this disease. I'm not a person who smokes or drinks alcohol, either, and generally live a healthy lifestyle, so I figured what would be the odds of me having something like this? It still seems like a bad nightmare that I can't wake up from…
I am scared about having a double mastectomy. I am undergoing some genetic testing to give me more information about my risk factors, and hopefully that, along with the other biopsies that will be taken from my right breast, will give me the info I need to make a decision on whether to leave the right breast alone or to operate on it as well.
If the other lesions are benign and there is nothing noteworthy in the genetics test results, I am inclined to keep my remaining breast. I understand that this is a risky decision, as I have very dense breasts that will constantly need surveillance and followup. But as I am still young, I would like to not lose a part of my body if I can help it, and I am willing to continue being surveilled.
Such a hard decision, though. At the moment, it's a waiting game for me. Waiting for MRI guided biopsies of the right breast and for the results of the genetic test to come out. I get emotional and a bit tearful at the thought of having a mastectomy, but I am trying very hard to face this reality and to be strong about it. I also have a four year old who I don't want to upset by crumbling into pieces at this diagnosis. It helps to be in communication with others who have walked this road, and who have ultimately triumphed at the end :)
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This is really hard and I feel for you. I can understand your reasoning and ultimately even a mastectomy doesn't remove ALL risk, so if your genetic testing doesn't show increased risk and there is nothing in the other breast, I would go with your feelings on this. Ask about what the monitoring would be going forward.
For me, even though I felt a lot of fear and anger that I was going through this, I also tried to concentrate on feeling fortunate that it was DCIS and not invasive, and that I didn't need further treatment than surgery. Honestly the stage of making decisions was the most emotionally difficult for me. Once a plan was in place and even recovering from surgeries was less scary/unknown - still hard of course, with some emotional times, but the reality of recovering and the outcome was not as bad as I feared.
Best thoughts to you as you navigate your decisions.
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Hi OP. Of course the decision will ultimately be up to you. But the reason I opted for neoadjuvant therapy on my ER+ HER2+ BC is mainly the possibility that I will be a candidate for only a lumpectomy. I don't mind having mastectomy and if I do I am certain I won't reconstruct. I don't want anything foreign inside my body but that's just me.
But when I read that you will have a drain bag if you have mastectomy ugh.. I can't even imagine myself with it. It honestly scares me.
Bu then again, I never imagined myself doing chemo and here I am.
Wishing you well.
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For those who are concerned, drains are generally not painful but just annoying. You do have to empty them and record the output as well as taking care while dressing and cleaning. There’s nothing scary as again, for most it’s just a minor annoyance and time limited. The word bag makes it sound big and cumbersome but they are actually rather small and somewhat bulb shaped. The are sometimes called JP (Johnson Pratt) drains. So amongst all the other things we have to worry about during treatment, this shouldn’t be of any major concern.
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I don’t want to scare you at all, but want you to not be scared if your drain is quite uncomfortable. For me and for many, where the drain exists the body is often the most painful point of the mastectomy. Ensuring the tube is unable to be jarred was my mission. Especially while my husband emptied the bulb for me. Drains are very important and part of many surgeries. They are not something to fear but they are something to deal with. The pain is doable, especially if you are resting and not moving around. They are a temporary nuisance and ensure a healthy wound recovery. Surprisingly, the removal of the drains was so painless I wasn’t even aware. Anticipatory worry is often worse than the actual experience so try to focus on being prepared and having a good recovery. Overall, a mastectomy is not considered a difficult surgery physically and was definitely the easiest surgery I had compared to others like hysterectomy, gallbladder and thyroid removal. But don’t be surprised if those damn drains sting a little.
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tb90,
Yes, some people do find drains quite uncomfortable. As with anything, there can be a wide range of reactions and experiences but for most, not all, they are simply annoying.
Thank you for emphasizing their importance. I totally agree with you on anticipatory worry and there is confirmation bias as well. I had a bmx with one step recon and was actually shocked, though pleasantly surprised, about how relatively pain free and easy the recovery was. I was still recovering and definitely needed to rest and not push it but I thought I’d be in much worse shape.
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