DCIS newly diagnosed with High Grade
I was given pathology results on Friday of a positive for DCIS. Today I was told they were "high grade". They are working on scheduling an MRI this week, followed by an appointment with the surgeon I've chosen. With the "high" grade what treatments should I expect to hear about or be preparing for? I have to admit I've been fairly calm but today's message rocked me.
Comments
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I am sorry to hear about your diagnosis. It is definitely a roller coaster ride. It is good that it is DCIS, but still very scary nonetheless.
I had high grade DCIS with comedo necrosis and multi-focal. The standard treatment for DCIS, regardless of the grade, is lumpectomy followed by radiation. This will more than likely be the treatment plan your oncologist will recommend. The treatment plan is not likely to differ whether low grade or high grade, so I would not worry too much about it. The grade designated is also somewhat subjective based on the pathologist's opinion. After biopsy, mine was given a grade 3 designation, but the pathologist following surgery designated it grade 2.
My treatment plan was a bit different because my DCIS was extensive and multi-focal (more than one location in my breast), and i was small-chested; therefore, I ended up having a mastectomy. But, lumpectomy followed by radiation is the standard - again, for any grade of DCIS.
I wish you the best on this journey.
Amy
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As the previous poster stated, it shouldn’t make much of a difference in treatment. In some cases, older women with low grade DCIS can be treated with lumpectomy alone, but with a higher grade DCIS they will almost certainly recommend radiation, as they do in the majority of cases. Even if a small micro-invasion of invasive cancer is found (and that is more likely with a higher grade DCIS, but still relatively rare) that doesn’t usually change treatment, so try not to worry.
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Hi Mayk!
I want to say first....don't panic..don't start reading thru the internet ...lol....IT WILL MAKE YOU CRAZY...trust me that's what I did.
I have read so many of these post on this site for the past couple months and the information I learned from them was very helpful which is why I decided to log in so I can hopefully be of some help with others who are going or about to go thru the something I have been thru. Everything went very fast for me ...biopsy 6/9/15 diagnosed 6/15/15 surgery 6/25/15 and then radiation therapy 7/27/15-9/15/15 ...and yes very scary but surprisingly...not completely horrible..not easy ...just not as bad as I thought from reading so much on line.
have you had a breast biopsy yet?
Angela
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first thank you! Yes I did have a biopsy. They are working on scheduling my MRI today. Two days after I will see the surgeon. This is all new and overwhelming. So happy to have found this group.
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Mayk, my diagnosis was the same, I did have 3 lumpies till got an all clear but since I have DD+ size and also an incredible team including the best BS in the state, It has worked out . Did do rads and recently finished up 5 years on the AL. But all is clear and it is now 7+ years out.
I would suggest that you get a good team who will work with you, best wishes
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We wanted to chime in to welcome both Mayk and Ladybug915 to BCO. We are sorry for the circumstances that bring you here, but happy you found us.
Gentle hugs,
The Mods
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I'm sorry about your diagnosis - DCIS can be so scary and confusing.
My advice- try not to panic about the high grade part of the diagnosis. (I know - so, so much easier said than done! Things really do get better once treatment gets underway.) And yes, be careful where you go to online for information. There are some good posts here on BCO about DCIS and treatment modalities.
Be prepared to meet with a team of medical professionals - the radiologists who do the MRIs and mammography, the surgeon you've chosen, perhaps a medical oncologist and perhaps a radiation oncologist. It can feel overwhelming, but they are there to help you. Don't be afraid to ask questions! And don't be afraid to ask the same question more than once! I sure did! If you have someone who can go with you to your initial appointments to take notes, I'd recommend it. It can become a blur. I brought a notebook and took notes to refer to later. I found that helpful.
Your doctors should give you a sense of the size and location of the DCIS, and something called ER/PR status. That, along with your age and personal history will factor into your treatment plan (or if you have choices, plans). You can ask about genetic testing (BRAC) and something called oncotype testing (used to predict risk of recurrence).
In my case, I was 45 at the time of diagnosis, intermediate grade, with comedonecrosis, ER+/PR+. I had a choice of lumpectomy vs. mastectomy and I chose lumpectomy + radiation + tamoxifen. I ended up having a follow up re-excision after my initial lumpectomy, which I'm told is not that uncommon given the nature of DCIS. I am very happy with my choice a little over two years out.
One thing your doctor may have warned you about - MRIs do such a good job of picking up things, they sometimes pick up false positives. (Mine did, I had a second biopsy, which was very scary but turned out just fine).
Good luck this week with the MRI and the follow up with the surgeon. Will be thinking good thoughts for you!
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Another hello! from someone with DCIS. And yes, this initial stage was the worst for me, as it was for most of us!
The choices that were presented to me were either a) lumpectomy+radiation+tamoxifen (I'm estrogen/progesterone positive) or b) unilateral mastectomy+tamoxifen. I chose the former, though many women choose the latter for what are, for them, equally valid reasons.
The surgeon did have to go in for a re-excision, as he didn't get clear margins. I'm about 2/3rds of the way through the Canadian protocol for radiation--fifteen whole-breast and three boosts--and the area they're zapping is definitely pink and itchy, but no skin breaks.
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I'm SO glad to have found this forum, even though I wish it didn't exist! I went for my regular mammogram on Wednesday and the next day I got the dreaded call-back. They wanted to look at two new calcifications in my left breast, which I'd never had before. After the diagnostic mammogram, the radiologist called me into the office and told me they were "suspicious" and needed to be biopsy. I had the needle biopsy yesterday and go the results today: comedo-type DCIS. I'm having an MRI in two days and meeting with a surgeon on Monday.
I'm also getting paranoid, wondering about every ache and pain. Are those period cramps or is something else really wrong? Is my back aching because I pulled a muscle or is it something more horrible? I have a sense of total doom. I just kind of "knew" this biopsy was going to be positive and I'm freaking myself out about other possibilities?
Can anyone relate or am I a crazy hypochondriac?
Anyway, it's good to know that I'm not alone and that you fabulous women are out there!
Nina
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Hi Ninatchka-
We want to welcome you to our community here at BCO. We hope you find this to be a supportive place when you need it most!
I think you'll find most of our members relate to the heightened health concerns after their diagnosis. It's normal to worry and fret that every ache is something serious. And in the beginning, it can feel very out of your control and confusing. But once you have more information about your cancer, and have a treatment plan in place, you'll start to feel a little calmer, a little more in control. And believe us, you are definitely not alone! You're now a member of the club no one wants to join, but the other members will be here for you through it all!
Please keep us posted on how your upcoming appointments go!
The Mods
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To Nina and others freaking out about your dcis dx. I can totally relate to the mind spinning out of control. But Remember dcis is not even 'real' cancer and is hugely overtreated. Do Google dr. Laura esserman, a leading expert on dcis, and read what she has to say. dcis is not an emergency. I get so mad when I hear stories where women are frightened by their by doctors and have life changing surgeries within weeks of their mammograms. Please get second opinions. Take your time.
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Ninatchka (and Mayk): (makes sympathetic noise halfway between a laugh and a sob) Yep, paranoia about getting cancer in various body parts that couldn't possibly have mets yet, check. As common as insomnia. The time between diagnosis and setting up a treatment plan is the worst, but that OMGwhatif! rears its terrifying head during pretty much every. single. waiting. period. After the surgery waiting for the pathology report. Before we meet with the subsequent oncologists to determine what we do next. Whenever we have our next mammogram. And so on.
That does get better as we pass each step, but don't be shy about discussing it with your doctor(s) if it doesn't recede or is interfering with your daily life. Trust me, they have seen this reaction!
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My MRI came back with no concerns on my right breast. On my left the calcification with DCIS is 7mm. It's in a cluster that includes benign calcifications. One small satellite lesion was noted located slightly farther back from the area of concern that could be DCIS 2 mm. It was recommend to include it in the surgery.
The cluster of calcificationsI is 2.2cm x 1.2cm x 1.9 cm. Located 6cm from my nipple at approximately 2:00-2:30 position.
No addition pathology yet still waiting.
Hopefully I wrote most of this down correctly and communicated it herecorrectly.
My GYN called with these results.I meet with the surgeon tomorrow. More tomorrow after I see the surgeon. Thankfully taking my husband with me to help with questions.
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i had high grade DCIS too. My only surprise was it was much larger than they thought. It was 6cm where they thought it was going to be 1.7 cm. my treatment was lump plus rads and now tamoxifen.
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The pathology is back. Negative for ER and PR.
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Mayk, Sorry about your diagnosis. It's very scary but you will get through it. I've tried not to think about it but now that I am in treatment it's hard not to. I am currently taking the Tamoxifen because I am ER+. And due to the High grade level 3 they highly recommended radiation. BUT because the actual site was so small they did an Oncotype test. The score came back as a 78 which scores the risk of reoccurrence. With the high score it was kind of a no brainer to do the rad. I don't want anything coming back. My "mental" issue with all of this is that because it is Stage 0 it's really not cancer but that grey area that could turn into cancer if not addressed. So we have to do the treatments no matter what. I know all will be fine and it will be fine for you too. Keep positive!!!
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Hi Mayk and Ninatchka!
So sorry you are going through this. My prayers are with you.
I was diagnosed with DCIS in June. I had a bilateral mastectomy Aug. 17th with reconstruction. After reading these posts, I had to say something. First of all DCIS whether it's early or not is indeed a cancer. Carcinoma is cancer. That being said, I do feel it is up to the patient and their team of doctors to decide on their options of surgery with or without treatment. I had intermediate to high DCIS, my sentinel nodes were clear and I had clear margins. My doctor said that I made the right decision because of the extensive amount of DCIS I had along with my family history. I also was told I do not need any treatment.
This was one of the hardest decisions I had to make. I am currently receiving fills 2x a week in my tissue expanders, it's no picnic and at times I have second thoughts, not on the surgery but the expanders, but my amazing husband and children help me through it.
I would not tell anyone what type a treatment they should receive. It's up to the individual. I will not advocate on bilateral mastectomies either because again it's up to the individual. But to tell them that the norm for DCIS is lumpectomy and radiation and tamoxifen? I do not believe. Every human body is different. I don't like to be part of DATA or STATISTICS.
Unfortunately, in my town there is a high rate of breast cancer. I have seen women choosing lumpectomies and radiation/tamoxifen and sadly years later it has come back either in the original breast or the opposite breast. I have also seen women choosing mastectomies, lateral/bilateral and sadly again years later they had a reoccurrence.
Fortunately, there have been women that have choosen the lumpectomies and/or mastectomies and they have success and have been cancer free for years too!! Like I said early, it's all up to the individual.
You need to feel comfortable with your decision and with the doctor/team that you choose.
I wish you all the best and my thoughts and prayers are with you. xoxo
Grace
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Pretty much what everyone has said. They may also discuss meds like tamoxifen. If it's mulitfocal or they can't get clear margins, or if genetic testing shows damaged genes that protect us against cancers, or if your cancer is estrogen negative, then mastectomy may be discussed. Highly recommend genetics testing, an oncotype test, and a mammogram after your lumpectomy. You may find the doctors leave post surgical treatment to you. These tests will help you and they decide on post surgery treatment. DCIS is hard to make decisions about, as you will find. However, what we posted is the typical standard of care discussed and offered, not necessarily what you or you're doctors will feel is best for you.
Good luck.
Come here often.
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Thank you to all on this thread! My type is comedo, which the radiologist told me is the most "aggressive" and therefore I am going to be aggressive in my treatment because that's what feels right to me. My ER and PR came back positive. I'm meeting the surgeon tomorrow to get the results of the MRI and see what the initial recommendations are... yikes, I feel like Alice, as if I just fell into a whole and left normal life behind.
Thank you everyone, for your wisdom, advice and support!!!
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Rovnic, what town do you live in? Are there some statistics that bear out your reesentations about breast cancer and your town?
You are aware that survival is slightly better or at least equivalent for lumpectomy versus mastectomy, right? Contralateral breast cancer is pretty rate. Mastectomy does NOT prevent recurrence. There are lots of threads here that bear that out. Those are facts, whether you are into data or not.
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Hi Mayk and Ninatchka:
Many found these posts from Beesie regarding DCIS in general and lumpectomy versus mastectomy to be very helpful.
A layperson's guide to DCIS:
https://community.breastcancer.org/forum/68/topic/...
Lumpectomy vs Mastectomy Considerations:
https://community.breastcancer.org/forum/91/topic/...
BarredOwl
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Thank you, BarredOwl. I'll check out those threads. I appreciate the info and guidance!
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Thank you. I too have been all over Bessie's posts. She's privided a lot of helpful information for consideration.
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Hi, I am new to this forum. I am really glad someone posted about DCIS actually being cancer. I was diagnosed June 29, 2015 with high grade DCIS in situ, after a mammogram came back as needing further testing. Then a biopsy was done. I had bilateral mastectomy with immediate reconstruction September 18th and am still in the healing process. My Onco really pushed lumpectomy w radiation but it was a personal choice for me. I was so stressed in the beginning, so many decisions, would I make the right one, if I chose lumpectomy, would it come back like I have heard with so many others or would choosing a bilateral be too extreme? But you know what, in the end it was totally the right decision for me. You have to listen to your instincts and go with what YOU feel is the best treatment plan for you. I have 7 friends with DCIS who chose lumpectomy and of the 7, all of theirs came back. I am in no way saying this is what anyone else should do, but I wanted piece of mind because with lumpectomy, radiation and tamoxifen, I had a 8 percent chance of it coming back. With bilateral, a 1 percent chance. I'm extremely happy to say that after my surgery, lymph nodes were clear, margins were clear and I am still a stage o! My surgeon said I made the right choice because when they got in there, I had a ton of fibrocystic changes and cysts. I was always getting bad mammograms and having to go back for further testing, then waiting all weekend and stressing over the results, I have peace of mind now. It's a very personal decision and I would never tell anyone to choose what I chose but you have to do your research and do what's best for you and no one else. I have to say, the surgery itself was extremely painful, but I am finally starting to feel halfway normal. Ladies, we are all in this together, and I feel for anyone newly diagnosed and having to make this decision. It's not easy, but you get through it. I wish all my pink sisters the best with their treatment and whatever decisions they make, it's not easy but just know that you can never make a wrong decision for yourself.
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Hi swimmersmom9, welcome to Breastcancer.org. We're sorry that you have to be here, but we're glad that you've found this wonderful group of people!
Thank you for sharing your inspirational story.
Kind wishes to you,
The Moderators.
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swimmersmom9 thank you for your post. I've also made the decision to do a mastectomy. I'm doing a double. The high grade combines with ER- and PR- really helped make my decision. I'm terrified but I know me. To live in peace I need to reduce the recurrence percent by as much as I can.
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Although there are a few doctors who say DCIS is not cancer, it is a malignancy that has not gone to the last step which allows it to break out of the duct and into the breast tissue. The controversy is one that has been gaining steam lately but it is indeed malignant cells within the duct thus the term "Carcinoma" Hope that clarifies this. Dr. Laura Essermann is a proponent of calling it a pre-cancer but she is not in the majority but rather in the minority of doctors who feel this way. Hope this helps to clarify.
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Dear Mayk, when are you scheduled for surgery? Are you doing the immediate reconstruction with expanders? Also, I was able to keep my nipples, (note, not everyone is a candidate) so I was more than pleased. If you need advice on what to expect, feel free to talk on here or email me at swimmersmom94@yahoo.com. best of luck to you, pink sister. Hugs.
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Swimmersmom94 I see my surgeon today for the second visit. I believe she will start to work with the reconstruction surgeon for the date and I should have it in the next day or two. I am going to be able to do skin and nipple sparing. I think it's actually helped me "accept" the surgery better by somehow getting to keep part of me. Right now the plan is for expanders which I have to tell you I'm not thrilled with. I would really rather go straight to the replacements and call it a day. I think I'm most intimidated and afraid of the drains. I'm such a big sissy. If my husband cuts his finger I run to the other room. Poor man he's on his own (he's the same way with a roach so I guess we each have our strengths). Emptying them and keeping them clean has my head spinning, not to mention trying to bathe or do anything else for fear of bumping or tugging them.
I will send you an email. I'd love to hear if you did immediate reconstruction or used the expanders.
Hugs!
Thank you again for reaching out!!!
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I'll be glad to answer your email, but for others that may want to know, I did immediate reconstruction with expanders so you wake up with essentially nothing, but within 1 week, at my checkup, he injected saline. It wasn't fun, but not as bad as I had expected. I can tell you more via email. Glad to help, or anyone else that may need advice or just want some answers. Again, one decision for one, may not be the right one for another, but I made my choice based on what I could live with.
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