Diagnosed Yesterday - Question about tumor growth

Kelly2380

Hi ladies,


I received the preliminary diagnosis yesterday from my surgeon. The full pathology report is not available, so all I know is DCIS with comedo necrosis based on what info they did have. My question is about the growth rate of this tumor. It was 2.5 cm on my mammogram on 7/31, but I can tell it's growing SO fast. I found this palpable lump at the very top of my breast in mid-July. Probably the size of a ping pong ball. Now, it's the size of an egg. You can see it through my shirt it's so big now. I feel like it's getting bigger every day. It's going to have its own time zone soon...


Does this happen? I'm scared at the rapid rate of growth. I literally had cancer appear overnight. (Well, probably not overnight, but dang. This thing is angry and it's on steroids)





My surgeon is moving very quickly on this, which I love her for, but I need some reassurance that this rapid rate of growth does happen at times. I won't know the grade until later next week, but my guess is it'll be a 3 based on the comedo. She mentioned that the needle biopsy may have only grabbed DCIS and that there may be IDC hidden in that goose egg sitting at the top of my boob. Has this happened for anyone? Right now, lumpectomy is the plan, but my surgeon ordered an MRI for Monday because she noticed it got bigger in the 48 hours between my biopsy and yesterday's appointment. She is wondering if there's inflammation, or if Stu (yes, I named my tumor) is growing that fast.


Thanks for reading this!

LivinLife

So sorry you are going through all of this. Just so you can step back and take a breath once you've had the MRI and get results.... obviously you're aware something is getting larger there... I am Grade 3 DCIS with comedo-necrosis - the diagnostic mammogram showed 2.5 cm as the largest dimension. The breast MRI showed 4.8cmx2.8cmx1.8cm which is likely more about the accuracy of the MRI in my case and just a little bit of growth in a months time. From what I learned on this site DCIS does not grow as fast as you're describing so indeed something else may be at play there. I'm glad you're getting the MRI. Hopefully that gives a better picture of what's happening so you can make the best treatment decisions based on information you have. Others will chime in with expertise - I don't have that - though wanted to welcome you and offer something while you wait for other responses. I am new here too....

ajminn3

I started with semi similar symptoms. I felt like my lump came on over night. The first biopsy only grabbed DCIS, as did the second, but due to the size and palpable mass, my surgeon was certain there was IDC lurking somewhere. Due to the size I ended up getting a BMX with reconstruction. Even after the mass (7cm) was out and sent to pathology they could only find DCIS, but said that combing through such a large mass for a small amount of IDC would take a long time. There must have been some IDC somewhere because I had 3mm of IDC on one of three sentinel nodes taken. I’m glad my surgeon was so upfront and honest (in a very nice way) about thinking there was something more than DCIS. It helped soften the blow for me when post surgical pathology did come back with IDC on a node. The pathology on that came back er+/pr+ her2+. The her2+ got me a ticket to chemo and rads, plus 10 years of hormone treatment for the er+/pr+. I’ve generally tolerated all treatment well, and for that I am thankful, but there’s no doubt the start of this cancer ordeal was incredibly difficult (especially the waiting for answers!).

Beesie

Are you sure it's the lump itself that is larger, and that you haven't developed a hematoma from the biopsy? I had that one time after a biopsy - a huge lump developed.

Usually DCIS is non-palpable because the DCIS cells are contained within the very narrow milk ducts and therefore as DCIS grows, it tends to spread out within the ductal system of the breast rather than form into a lump. Sometimes DCIS presents as a lump, but that's unusual. So that would suggest inflammation or something else rather than the DCIS growing.

Good that you are having an MRI. While no screening is 100% accurate, the MRI may be more effective at highlighting whether there is likely to be invasive cancer within the mass.

Kelly2380

Thank you for all of your replies! Based on my diagnostic mammogram and US, we know that the tumor was 2.5 cm as of 7/31, we will see with the MRI tomorrow if it shows that it grew or if I just have inflammation from the biopsy. It has really gotten bigger since my biopsy last week, so maybe it is a hematoma. My shoulder has been hurting on and off for about a month now, so something is inflamed for sure. I've also had lymph nodes swelling on and off in my armpit and I ran a fever for about a week in mid-July. That, of course, delayed my diagnosis because they made me get a Covid test before they would see me in the office. I guess I'm a little worried that there is some IDC lurking in there because it doesn't feel like Stu (my tumor) is behaving like DCIS.

LivinLife - good to meet you. It sounds like we have some similar stuff happening. It's great to meet all of you fine ladies!

At this point, my surgeon is thinking lumpectomy + radiation, but if Stu is actually getting bigger, I am going to be left pretty deformed when he comes out.

LaVue

I had hematoma and lymph node swelling after a biopsy. Turns out all I had was DCIS. Crossing my fingers for you!

SuQu31

I had a very ugly, large hematoma after biopsy. On MRI, it appeared that there was something in my lymph nodes, but as my breast surgeon said, the person reviewing the MRI couldn't see the nasty bruising. The report said the nodes were likely metastatic (or words to that effect). This did not help me wait patiently for over a month for my surgery. However, my breast surgeon was right. All DCIS, nodes were clear.

The area where the hematoma was still feels different than the rest of my breasts, over a year after the bilateral mastectomy. It must have been really something.

Glad they are doing the MRI. The more they can see, the better. Good luck.

Kelly2380

I think you guys might be right about the hematoma! Being facedown for my MRI really helped gravity do it's thing and now I have a good size bruise that's popped up at the biopsy site. The MRI itself was a piece of cake. I have online access to my records, so even though I shouldn't, I'll be logging on every other hour to see if my report has been uploaded. I'm still waiting on my full pathology report too. Thanks for the well wishes and all of your helpful info!

I'm sure once I get the MRI and pathology reports I'll have a ton more questions - especially about surgery options. I've got the lumpectomy v. MX swirling in my head, but I figure I need more information before I start trying to sort through all that!

Kelly2380

Wanted to post my MRI report. My surgeon had called me within an hour of me leaving my MRI and scheduled an appointment to discuss it with her on Friday. (So it's been a nice four-day wait) I think she was hoping for my full pathology report. Here's the MRI:

CLINICAL HISTORY:
39-year-old female with recently diagnosed high grade DCIS within the upper inner quadrant of the right breast.

COMPARISON:
Previous mammogram and ultrasound studies dated July 31, 2020.

FINDINGS:
Heterogeneous fibroglandular tissue is present bilaterally. There is mild symmetric background parenchymal enhancement. A heterogeneously enhancing mass is present within the upper inner quadrant of the left breast approximately12 cm from the nipple. This measures 2.9 cm AP by 3.4 cm transverse by 3.5 cm in height and corresponds to the recently diagnosed malignancy The appearances unusual for pure DCIS and an associated invasive component is suspected. The mass demonstrates rapid contrast enhancement with washout kinetics. The mass is located 4 cm from the pectoralis muscle.There is lobulation and mild spiculation of the margins. There is a small collection of fat necrosis anterior to the mass measuring 1 x 1.4 cm. Ther remaining portions of both breasts are normal in appearance with no other masses or areas of suspicious contrast enhancement. Normal-appearing axillary lymph nodes are present bilaterally. There is no evidence for internal mammary or axillary lymphadenopathy. The chest wall is unremarkable Visualized portions of the anterior mediastinum and upper abdomen are unremarkable.

IMPRESSIONS:

1. 2.9 x 3.4 x 3.5 cm enhancing mass within the upper inner quadrant of the
right breast 12 cm from the nipple. This corresponds to the recently
diagnosed malignancy.
2. No other masses or areas of abnormal contrast enhancement are identified
within either breast. There is no lymphadenopathy.

BI-RADS 6: Known cancer.

RECOMMENDATIONS: Surgical/oncologic management.

The report sort of lends to my fears that this is not behaving like normal DCIS. Perhaps the DCIS forum is not the place to post this, but has anyone had DCIS "upgraded" on here? Is this a common thing?

MelissaDallas

Kelly, it is very common. About 20% of initial diagnoses get “upgraded” on further investigation

Beesie

Kelly, as I recall, you presented with a palpable lump which had an irregular appearance on mammogram imaging. That is a very unusual presentation for DCIS. Your MRI appears to be consistent with the mammogram. About 85% of IDC diagnoses also include some DCIS so it's possible that your needle biopsy only retrieved some of the DCIS and missed the IDC component in the mass. I hope that's not the case and your final diagnosis remains pure DCIS.

LivinLife

Please keep us updated Kelly2380! I hear this is scary for you - we are all pulling for you...

Kelly2380

Thanks ladies! I think I'm being brought into my surgeon's office today to talk mastectomy. I've Googled. I had to Google. I shouldn't have, but I did 🙂 If I've got high-grade DCIS with comedonecrosis in a mass that is now close to 4cm, what are the odds that I'd get rid of it with just a lumpectomy and radiation? Probably not that great. I don't want to do this all over again in two or three years. The good news is that my nodes were like "Hello! We're still good here! But what the heck is THAT thing?!" Sorry... I envision my cancer and inner organs like cartoon drawings with faces and all. Kind of like the posters you see up at a dentist's office of teeth with smiley faces. I digress....

barbara4

Good luck today Kelly

Mythoughts and prayers will go out to you.

Barb

Kelly2380

I have an update and more questions 🙂 So my full pathology report STILL isn't back. My surgeon wants to do a sentinel node biopsy because of the aggressive appearance of the tumor. She's kind of putting the lumpectomy vs. mastectomy decision in my hands. I hate that! Is that normal that they won't advise you on it? She seems to talk a lumpectomy+radiation would be okay at first, but she said she was under the impression from my last visit that I had emotional attachment to keeping my boob. When I said that I really don't care for my old 36DD's, she was like "well...next week let's get you in to the plastic surgeon and oncologists (do y'all have 2? because I guess I will), and that way you can decide whether it's a mastectomy or lumpectomy."

Ummmm...I can't even decide what to eat for breakfast most days. I am the definition of a Type-B personality. I don't make decisions. I avoid making decisions. I don't like the idea of the major surgery that a MX would entail, but I really don't like the idea of removing the tumor and waiting for it to come back as IDC. Or, if what I have does turn out to be IDC currently, having to go back in and remove more tissue. I have different family members pushing different things. Because I don't make decisions, the Type A's of my life - mom, husband, automatically start trying to influencing me on their decision.

Ugh. I"d love to hear what you all decided for surgery and why.

Just to recap, the tumor is approx 3 cm high-grade (3) DCIS with comedonecrosis. Appearing/behaving ike it has an invasive component, but samples from needle biopsy are only showing DCIS. No idea yet on HER2 and all that other stuff yet.

Thanks!

ajminn3

Hey Kelly,

I posted previously on the thread and have a very similar “beginning” story as you in terms of only being able to find DCIS in biopsies although the surgeon and radiologist highly suspected an invasive component because DCIS typically does not present in a palpable lump (which is what brought me in for a mammogram in the first place which lead to an ultrasound, biopsy, etc).

My surgeon left the lumpectomy vs mastectomy decision in my hands but talked through both options with me thoroughly. I ultimately chose a bilateral mastectomy for a few reasons 1) lumpectomy would have been disfiguring 2) I wanted bilateral to try to achieve symmetry with fewest number of surgeries if possible 3) I wasn’t attached to my 36DD’s and was able to go smaller (which I love). My plastic surgeon was great and talked through all options (flat, implants, expanders, DIEP, etc) and I settled on direct to implants and have been happy with my outcome so far.

Post BMX my pathology came back with 7cm mass of DCIS and 1/3 sentinel nodes with 3mm of er+/pr+ her2+ IDC, which sent me down the marathon treatment path of chemo, rads, targeted treatment, and hormone treatment. I’ve already left enough of a novel here for now , but if you ever want to reach out and ask questions about anything send me a PM. I’d love to help give any insight or answer any questions I can!

LivinLife

Hi again Kelly! Like ajminn3 I too have written about my situation... to reiterate - Between my diagnostic mammogram and biopsy my DCIS area was 2.5 cm, Grade 3 with comedo-necrosis with two foci. I have no palpable lump. The breast MRI showed 4.8 or 4.9 cmx2.8cmx1.8cm with part of that area being something they cannot determine whether DCIS, inflammation, etc. I think my providers and me won't be surprised if some type of invasiveness is present upon surgery and on some level won't be surprised if there is not. I was told by my first surgeon he considers me in the middle of DCIS and something invasive being present for what that's worth.

I am not a candidate for radiation due to scleroderma so that took lumpectomy off the table. My estrogen receptor positive is only 2% which means all the toxicity and side effects with likely no benefit of endocrine therapy. Like others I am fairly large - 42 C-D - and just will not miss my boobs for various reasons. If I were younger I may think about that differently. due to concerns about healing and the multiple surgeries involved I never considered reconstruction as an option for me well prior to being diagnosed with DCIS. I've heard too many horror stories on another forum related to scleroderma. I also have way too many medical appointments without all this going on - don't need or want more.... I chose BMX because I'm not willing to walk around with one large breast. I think physically that would be uncomfortable and that would bother me emotionally, much more than not having both.

Also I think the two oncologists you were wondering about may be a radiation oncologist and a medical oncologist. that is not unusual at all. It does seem a bit unusual to meet with both before surgery though those appointments were scheduled for me too by my surgeon and my surgery is not for another 10 days... I wish you the best!!! This is a very personal decision and a lifelong one. It is important you make it based on what you're comfortable - not others. That's really important. I kept my decision-making process to myself (didn't talk with family, friends, co-workers, etc. until I made my mind up) and they knew not to offer....

OnTarget

My surgeon left lumpectomy vs mastectomy up to me, but she said that my breast would be very deformed with a lumpectomy.

Then the MRI showed that the mass was larger, and I had ILC in my other breast too.

I weighed all of the pros and cons, and a BMX suited me. There are challenges, but I'm happy with my choice.

Kelly2380

Thank you so much for sharing your stories! Ajminn, I do feel like we might be on similar paths. I think my surgeon feels I'm BS'ing her when I say the lump came out of nowhere in mid-July. It's just not in a place anyone could miss.

I have a couple of things making me lean towards a single mastectomy over a lumpectomy. The impending sense of doom that the cancer will come back with a vengeance is what's driving this thought. I don't trust my body enough to evict cancer. I feel like I have to tear down the building. I also have epilepsy which is 100 percent under control at the moment. While it doesn't confine me to a particular route of treatment like poor LivinLife 🙁 I think that my brain on chemo would be a dumpster fire. If I happen to have IDC already, I know I can't control that outcome, but if this is just DCIS, I feel like I'm just tempting an IDC-fate with a lumpectomy.

The only thing really holding me back from giving a MX a green light is the recovery period. It sounds intimidating to me. I've had minor surgeries in the past (gallbladder, appendix), but a mastectomy seems scary painful to me. For those who had them, how long were you in the hospital? And how long until you felt like yourself again?

I'm hoping that meeting with Oncologist 1 and Oncologist 2 next week will give me some clarity. My surgeon really clouded my mind. At first, she was gas-pedal down at lumpectomy, and then when I asked a brief question about why some people get mastectomies with DCIS, she totally changed gears. Within two hours of my appointment, she got a hold of my future plastic surgeon to coordinate a surgery date with her. I didn't even have my consult appointment scheduled with the plastic surgeon yet! I don't know if her quick change of direction means that she would advise a MX, or if our surgeons are super careful not to influence us. Either way, I feel like I'm lacking a medical recommendation right now. Did any of you meet with your oncologists before deciding on surgery? Did they help guide your choice?

I truly appreciate all of your stories. They're helping me tremendously! ❤️

santabarbarian

Remember things may change when you have your lab results.

My story started a lot like yours and then labs came back w TNBC. TNBC is one kind of BC where they give chemo first. With a large 3.8 multifocal tumor and one 3 cm node, surgery would have had to have been a MX -- but after getting a very good response to chemo I wound up having a tiny lumpectomy and 4 nodes removed.

Gnarly fast-growing tumors can be VERY responsive to chemo.

GOOD LUCK!

LivinLife

Kelly there is a lot of information about recovery (time and the process) on this site. Check out the search engine - "mastectomy recovery" or something like that. Certainly there is quite a bit of variability. the one common feature is the minimal pain and minimal pain medication people used 3-4 days out from surgery, for the most part. There also seems to be a common theme about pressure from fluid build-up though that lessens as the weeks go by. Amazing how some people were able to resume quite a bit of normal activity nearly right away or within days and others it took longer. So you will get a wide variety which can be a bit confusing as you think about your own situation. The only reason that mattered to me is b/c I need to get back to work as soon as possible. Given COVID I am working from home with 95% of that time being on the phone so I'm wondering more about fatigue-factor and discomfort - just won't know those things until I get there given there's no "typical response."

It's important you make your decision about what kind of surgery you think suits you best and then what that means practically. I realize recovery time and process likely factors in to some degree as well. Glad you're reaching out as you weigh all this out. It is serious stuff. I found it the most stressful. My mind has been quieter and I've slept much better after making the decision. Even though it was somewhat determined I still had to move through my own process and talk with two surgeons, RO, MO, my rheumatologist and a small smattering of other medical folks who don't have anything to do with this before feeling totally at peace - not to mention all the reading and some writing on this site. Best....!!!

Kelly2380

For sure same thoughts as you LivinLife. I am an admitted workaholic. I work in child welfare, so you really just take that around with you and maintain almost no boundaries between work and life. I am in administration now, so I am working from home due to Covid and will be for a while. I know me, and I will allow my need to work factor into my decision even though it shouldn't at all. It will be helpful to see how you're doing post-op because you are two weeks ahead of me. My days are spent on a laptop and in Microsoft Teams meetings. If I get the MX, typing might be out, but I could probably do the meetings...Camera off of course.

I've read this site and all of the resources on it. They're great. So helpful! I am also big into the anecdotal stuff and learning about the real life experiences, so I appreciate you guys sharing!

I am SO not sleeping. It sure would be nice to get that darn pathology report back. I didn't even think about things like triple negative BC - you poor thing Santa barbarian 🙁. It's been 12 days. What the heck?! My surgeon has been sharing what little info she has with me very timely. I forget that I don't have the full picture yet. Santa barbarian - were you given other choices or was chemo-first the only option with the TN? If I knew chemo was coming regardless, I would consider doing the same.

Beesie

Kelly, this being the DCIS forum, I'm always hesitate to talk about chemo, since those with pure DCIS never need chemo - but for someone newly diagnosed who doesn't know that yet, it can be really scary to read about chemo in what they think is the context of a DCIS discussion.

That said, since santabarbarian raised the topic of neoadjuvant chemo, here's a link to a post in a different Forum where I included the NCCN Treatment Guidelines for "Preoperative Systemic Therapy": https://community.breastcancer.org/forum/5/topics/... See my post of Aug 7, 2020 10:30PM.

Valleylady1

New to Forum. How do i pist please

Beesie

Valleylady, click on "All Topics" in the left hand panel. Then scroll through the Forums to pick the forum that applies to you - if you are not diagnosed, for example, the "Not Diagnosed But Worried" forum is usually a good choice. Click on that Forum, and right at the top of the page is a button to click that says "Start a new Topic".

Kelly2380

Hey ladies,

Thank you for all of your input! Because of your stories of DCIS being "upgraded" to IDC after surgery, I decided to see an oncologist from a bigger hospital for a 2nd opinion before I made a decision on surgery. I'm glad I did. My new oncologist said that he is 90 percent certain that the tumor is IDC (triple negative) and he wanted to perform a 2nd biopsy. He said the breast surgeon doing a biopsy in her office without imaging meant the biopsy was just not reliable, so they are doing an MRI-guided biopsy on me this coming Tuesday. When I asked him what happens if they come back with DCIS again, he smiled and said it's just not likely.

So I guess the plan now is to do a better biopsy and figure out chemo before surgery. He was the nicest doc I've ever met, so I'm glad I switched. I figured I give an update. I'm kind of in limbo between cancer types. What a ride I've been on these past 6 weeks. 🙄

LivinLife

Kelly I'm so glad you went for that additional opinion and it went so well. Sounds like that was the right move for you for sure! Yes, the limbo is such a wild emotional ride and yet gave you the time to gather additional information. The biopsy results will help that even more as far as decision-making goes. Please let us know how things go and how you are doing as you move forward.

Beesie

Kelly, I'm sorry that your second opinion doctor is quite certain that you have invasive cancer, not just DCIS, but that certainly makes sense based on the original presentation of your cancer, and the MRI findings. The good news is that it sounds as though you are now in good hands and will get the appropriate treatment, whatever you final diagnosis turns out to be.

Good luck with the biopsy on Tuesday

Kelly2380

Hi ladies, I just wanted to thank you for being a wealth of information! Because of reading your stories on here and getting your feedback on my unusual presentation of DCIS, I got that second opinion. It may have very well just saved my life.

I received my second biopsy results today from my new oncologist. I have triple negative BC, IDC, stage IIB. It's spread to at least 2 of my axillary lymph nodes. On Tuesday, my new radiologist said he reviewed the films I turned in from my previous imaging at the other hospital and he said it was clear as day to him that I had abnormal nodes, so they biopsied those too. They are cancerous. Interestingly, none of the 6 samples they took on Tuesday turned up with any DCIS, so I'm beginning to think the other hospital botched the pathology altogether.

I'm starting chemo on 9/24. I have a PET scan next week (scary) and an EKG. I'm going to scoot on over to the TNBC board, but I wanted to express my appreciation for all of your wisdom. Like I said, y'all may have very well just saved my life! Without it, I would have stayed on the original treatment plan for surgery and who knows how long it would have taken the original doctors to figure out what they were missing.

Much love to all of you on your journeys. ❤️

Beesie

Kelly, I'm really sorry that you won't be hanging out in the DCIS forum! Damn. I'm not surprised that the DCIS diagnosis was wrong, but still, damn. Eventually the correct diagnosis would have come out when you had surgery but It's really good that you got that second opinion because now you can start on chemo prior to surgery, which is more appropriate with your triple negative diagnosis. Good luck with the PET scan - I think you've had more than your share of bad news lately so it will be only good news from here on out, right? -and good luck with chemo!

LiveLoveLaugh2020

Kelly so sorry you are dealing with all of this. I wish you the best going forward, hang in there.