DCIS w/microinvasion
I was diagnosed with DCIS grade 3 >5cm by a Breast MRI guided biopsy. I am BRCA1+ and decided to undergo a bilateral mastectomy. Pathology from my mastectomy shows;
Microinvasive 0.5mm ER-/PR-
Tumor grade: 8/9 poorly differentiated
Stage: T1mic,pNO, MX
My question is this; I know chemo is not usually warranted for such a small microinvasion. However, with my BRCA1 status and ER/PR negative status, does that change anything?
I've lost so many women in my family to both breast and ovarian cancer. I want to do all I can.
Thanks for any information,
Comments
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First oncologist laughed when my husband mentioned chemo and asked if he didn't like my hair! VERY arrogant! Although, his reccomendation does go with all the literature I've read. However, I've also read that BRCA1 cancers tend to be a little different and need to be looked at differently also. I do have a second opinion up at Duke in a couple of weeks.
Trust me, I don't want chemo but i do want to make sure I've done all I can to NEVER have to deal with cancer again!
K.
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I just want to share my experience with you as I think we have a similar diagnosis. During Thanksgiving I received the news that my left breast had high grade ductal carcinoma. The tumor was almost 4 cm. but there were other areas within the breast as well. I had several needle biopsies performed and a breast MRI (checking both breasts). They found small suspicious areas in the right breast as well and wanted to do a further MR guided biopsy. I decided because of my large family history of breast cancer, to have the right breast removed as well. At 49, I had no difficulty making this decision because I have 2 teenage children. I can live without my breasts...Last Friday I had my bilateral mastectomy. I was home by Saturday afternoon. I knew I would recover in my own bed faster... I didn't use the pain medicene as the anesthesia stayed with me after surgery for awhile. I still have two drains on me and they are slowly emptying less. My hardest challenge was yesterday trying to wash my hair without getting the drains wet. If someone out there knows a technique for a "do it yourselfer", please advise. So far, I must admitt, things are going smoothly. Stay positive as much as possible (even though it's hard) never give up & pray for strength. The initial scare seems to be the worst. Women have always proven to be great sources of strength during hardships. Last night my doctor phoned to tell me that the pathology report on the sentinel nodes was all clear. This means chemo is not necessary as the cancer stayed in the breast tissue. Prayers are answered!
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K,
Generally it's considered that the line in the sand for chemo is an invasive tumor that is 1cm in size. If a tumor has very favorable characteristics, then chemo might still not be recommended even for tumors that are a bit larger. On the other hand, if a tumor has very unfavorable characteristics, then chemo might be considered for a tumor that is smaller than 1cm. Unfavorable characteristics include tumors that are highly HER2+ (in which case Herceptin might also be prescribed) and tumors that are ER-/PR- (in this case particularly because the patient would not benefit from Tamoxifen or AIs as an alternative to chemo). I have never heard of BRCA status coming into play on this decision and I was not aware that BRCA cancers might be different than any other breast cancer - I hadn't heard that.
Since you have a tumor that is considered to have unfavorable characteristics, the question is: For someone who has an invasive tumor that is smaller than 1cm but has unfavorable characteristics, at what size of tumor should chemo be considered? According to the NCCN treatment guidelines (which are used by most doctors in the U.S. and elsewhere), the answer is 0.5cm, if the tumor is ER-, PR-, HER2- and the patient is node negative. You can follow through the treatment guidelines decision-tree in this file, on pages 11, 12 and 16: http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf
Given this, I could see that if you had a 0.3cm or 0.4cm tumor with very unfavorable characteristics, a doctor might be conservative and recommend chemo. But with a 0.5mm microinvasion, you fall well below the chemo line. For anyone who is node negative, the reason for prescribing chemo is the general assumption that the larger the tumor, the greater the number of cancer cells and the greater the chance that one or two of those sneaky cancer cells might have escaped the breast unnoticed. So to put it in perspective, with your type of pathology, the base line for considering chemo is a tumor that is 10 times the size of yours (and therefore contains about 10 times as many invasive cancer cells).
By the way, I notice that you mention that your DCIS is grade 3. With only a 0.5mm invasive tumor, were they able to test it for grade? My microinvasion was 1mm and while my DCIS was grade 3, my microinvasion was grade 1. This was very comforting to me. I'm not saying that it would be the same for you, but if your microinvasion hasn't been tested separately from your DCIS, it could be that your microinvasion is not as aggressive as your DCIS.
Hope that helps! I'll be very interested to hear what the docs at Duke say.
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Thanks for the information Bessie.
I will keep you posted in what I find out up at Duke. This docor is BRCA savvy and a specialist in triple negative and microinvasion cancer.
For now, I'm working on recovering from my mastectomy and feel pretty confident I've done what I need to do to make sure breast cancer is a thing of the past for me.
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Hello Hockeymom1,
The things I have come across in regard to being BRCA positive is that it would be best to have your ovaries removed to prevent ovarian cancer according to what I have read. It seems that this gene can cause ovarian cancer as well. Ovarian cancer is very hard to detect and is usually only caught too late, the statistics say. This is what I have been reading on various medical websites. I purchased a very informative book called Breast Cancer, Real Quesstions, Real Answers by Dr. David Chan, MD from the UCLA Jonsson Comprehensive Cancer Center. It has answerd a lot of questions I had, not all, because each of us is unique, but 97% of my questions.
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Just checking to see if there are any ladies in the Columbus Ohio area.
I'm waiting to have surgery March 9th, so would like to find someone close by to maybe be support for each other. -
Anyone else diagnosed with DCIS w/IDC microinvasion beside Beesie and myself?
I would like to hear how you are doing and what treatments the doctors had you go thru.
Thanks,
Dee -
Hi Dee,
I had a VERY small amount of microinvasion 0.5mm, triple negative. I had a bilateral mastectomy and no further treatment. I am in the process of having a second opinion on my pathology just for peace of mind. My physician up at Duke suggested it and I figured why not. I'm sure it will be the same.
Are you expecting any further treatment?
My oncologist even ok'd me for a small amount of Estrogen as I had my ovaries removed in the fall last year. (I had no idea I'd be dx'd with cancer 2 months later).
I am BRCA1+ and feel pretty good that I've covered all my bases and hopefully won't have to deal with cancer again.
I see you are having your surgery soon. Good luck. I am going for my exchange surgery 3/16.
Keli
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Theres a few ladies out there with a Microinvasion & DCIS.
I am close. But Technically I am not considered a Microinvasion since my IDC was 1.2mm. Microinvasion is less then 1mm. I have had some Drs refer to me as a Microinvasion.
My DCIS was close in size to yours at 1.5cm
I had a BLM. My ER is only 18%. I have am Increased Risk of stroke So I choose not to take Tamox.
I see you are having Surgery on the 9th. What Kind of surgery will you be having? Thats a Good Day. It was My JazzyGirls (my Other Dog) Bday!
Good Luck Monday!
Pam
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Hi Hockeymom and Dejaboo,
I was told with a bilateral mastectomy I would not need any futher treatment as long as the SNB comes back clean. I am also having immediate recon. I may have to have one ovary removed
(had hysterectomy at 27) they left one ovary to keep me from going into menopause at that time.
Maybe some Tamox, but if I have to take Tamox and have bad SE's I may not finish with that, I will have to see how it goes.
Good luck with your exchange Hockeymom. Happy B-day to your "baby" Dejaboo.
I'm going for the cure on Monday!
Best wishes,
Dee -
Ladies-
I just wanted to join in and say "Hi" !
At the age of 38, I was diagnosed with DCIS with a focus of a microinvasion of less than 1mm (stage T1mic). As you can see we are not all that common since our cancers were caught extremely early. I ended up with a lumpectomy, re-excision to clear a margin that was close to the skin so my surgeon removed extra skin, rads and taking supplements that my naturalpath advised for me take.
Bessie, you always come to the rescue with excellent research and information.
Wishing everyone the very best.
Liz
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I know this thread has been quiet for a while - but I'm another one of those DCIS with microinvasion ladies. I'm doing a bilateral mastectomy next week because my microinvasion tested as HER2+++ - and I don't want to be constantly massaging my breasts looking for more cancer!
I think we're all incredibly lucky to have caught our cancers at this point - I feel like there's an angel on my shoulder.
Hugs,
Laura
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Laura-
I have said that there must be an angel watching over me and my family many times. I have gone thru soooo many challenges in my life since childhood and I swear that there has to be an angel watching over me and my family. I am by far not some holly roller but if I didn't believe in Angels or in God I know I would have never gotten thru this. Sending (((hugs))) your way.
Liz
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I just joined the board today. I was also diagnosed with DCIS, 4.5 cm, grade 3. They found a 1 mm micro invasion on my pathology report after my bilateral mastectomies last week. I am ER+, PR+, and Her2 pos, 3+. I am going to the oncologist this week and was wondering what treatments you all had. I know I need to get the 2D6 test to see if Tamoxifen will work, especially since I'm Her2 pos. I've been reading about Herceptin, which might work since I'm perimenopausal, node-negative, stage 1, ER+, and IDC. What routes did you take??
Amy
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Hi-
for those who had microinvasive DCIS that was her2+++, as of this afternoon we have our forum index (thanks to the moderators!). Please feel free to post there. We can finally connect! The forum index is called Micro-invasive DCIS that is Her2+++. Thanks! Liz
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This forum has been quiet for a long time. I'm wondering who is still around that has DCIS with microinvasion. Bonus points if TN
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I am! Although no bonus points for me ... highly ER/PR+. Although the micro-invasion was too small to test, I doubt it would be different.
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I'm one of these too!! diagnosed age 45 with DCIS/microinvasion (1mm invasion; DCIS about 1.5 cm). High grade/ had lumpectomy/radiation. Did NOT take tamoxifen.
This fall - 18 years later- so am now 63- suspicious mammo - DCIS - lumpectomy - total area of DCIS - 3.5 mm so was very small; intermediate grade, no invasion.
Same breast so no re-irradiation. on Femara the last month - faring well
Carol
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I was diagnosed with DCIS w/microinvasion in August, 2016. No lymph node involvement (four were tested), and clear margins after lumpectomy. HER2+, er/pr negative, so treated with Herceptin, Chemo, and radiation. I was extremely sad when I learned I had to have chemo since I was under the impression DCIS was not treated with chemo, but because of my age (46 yrs) and HER2 status, MO strongly recommended it. At times, chemo was TOUGH, but that was only a few days out of the week for me. I am currently more than halfway through radiation (15 treatments needed), and will continue with Herceptin every three weeks until September. There's no doubt that cancer is scary, but be strong. You WILL get through it. God bless you.
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To clarify for others who may be reading here, it is true that DCIS is not treated with chemo.
Tlg, you had chemo because you had invasive cancer - that's what a microinvasion is. DCIS-Mi is Stage I disease, the earliest form of invasive breast cancer. So your treatment plan was based on the presence of that tiny amount of aggressive invasive cancer.
May I ask, how large was your microinvasion? Or did you have several microinvasions? I ask this because it's actually quite unusual for chemo & Herceptin to be given when there is only a single microinvasion present.
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I am scheduled for a lumpectomy with SNB the week of March 26th. I have been reading a lot of the threads. I have DCIS with microinvasions. Intermediate grade with solid and cribriforms with necrosis and lobular extensions. I appreciate all the helpful information and positive vibes that I am gaining from all of you. Thanks
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Hi Bauer4 Just to say Hi. I have a similar diagnosis DCIS (3cm) with microinvasion. I am about a year and a half out and doing well. The lumpectomy was very doable- hang in there. Let us know how it goes.
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Hi! Another one joining the "microinvasion gang". I am Swedish (living in Spain), I hope that is ok? I have been silently stalking this site since my diagnosis early January this year. I have just turned 46 and was diagnosed with DCIS 0.6 cm (grade 2, Er Pr+, Her-). No necrosis. No Vascular invasion. Solid and Cribifrom. Microinvasion 0.018 cm (0.18 mm). But, I had micrometastases in the Sentinel node, 310 cells (250-5000 cells are counted as Micrometastases here, below 250 it is considered ITC, and above 5000 it is Macrometastases). All in all, they took out 3 nodes. I do not really understand, but in my "papers" I am "clinically" node negative, but according to OSNA test, well, I had positive "micro" cancer cells in the SN. Oncologists cannot agree on whether the cells came from all the different biopsis I had to do (due to my very small breasts) or if they "seeded" durning surgery, or if the tiny micro invasion has "sent" them. Sadly they couldn't analyse the microinvasion for grade etc, they said it was too small... In the end they decided I shouldn't have chemo. But I have been through Lumpectomy and 25 sessions of Radiation, which was no big deal to me. A week after surgery I re-started my usual training, and continued training during Radio with no problems. Maybe a bit more tired, but nothing I really noticed. But now I am on the "magic pill" (Tamoxifen), that is supposed to save me, and feels like it is slowly killing me. I was hit by a truck 1996 with damages to neck and small brain and went through several surgeries to neck after that. In 2008 Melanoma and surgery. Then I was diagnosed with MCTD (Mixed Connective Tissue Disorder - Rheumatic disease) in 2012. So I have been living with severe cronic pain, internal organs inflammation, and neurlogical damage, medications, surgeries (basically, been in contact with way to many doctors) since 23 years back. I struggled my way back to life every time thanks to my dogs and training and competing with them. Kind of thought "what else can happen to me" after the MCTD diagnosis, but now; here I am! Well at least it seams I am in good company, considering what I have read so far, you seem like a very knowledgeable group. Sorry about the rambling... Thank you for reading this!
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Hi Abby,
Sorry you're here, as it sounds like you've been thru a lot already. Ah, Tamoxifen, the bane of our lives! But yes, it does keep us alive... there are threads about DCIS and also Tamoxifen. If you have questions check those spots out! Best to you.
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Thank you so much Falconer! Yes, I have been going through those threads. During the first two months after diagnosis, I was up all nigh just reading. Most Tamoxifen ones are quite deprssing...haha
I would like to know where those micromets came from. But since 2 oncs, 1 onc sugeon, 1 radiologist cannot agree, I guess it will never know why!?
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Has anyone had DCIS with microinvasion and a positive sentinel lymph node?
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yes!! I was jus diagnosed Thursday with microinvasive breast cancer with one of two sentinel nodes positive!! My 1st diagnoses was dcis insitu but after the double mastectomy my path report revealed microinvasive breast cancer. I am now scheduled for body ct scans . Needless to say I am terrified!! There's not a lot of info out there about this diagnoses so I jus feel lost !!
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Hi all. I am new to the party; this is my first post, so I apologize if it's in the wrong spot or incorrectly formatted. When I was 49, 6 years ago, I had a lumpectomy done to remove "suspicious" calcifications in my right breast. Nothing irregular noted in that biopsy. In hindsight, wish I had done more research then as I never would have had that surgery. My breasts are small (B-/A+) so not much to work with. Last month, age 55, I was diagnosed from a needle biopsy with approx 1 cm of high grade DCIS, nuclear grade 2-3, cribiform and comedo pattern w focus of microinvasion .5mm, again in the right breast, but completely different location. I had a lumpectomy a few days ago. Still waiting for the biopsy results to get the whole story (expected next week). I did NOT have any sentinel nodes removed in that surgery.
Uniquelyme, I was very sorry to hear one of your 2 sentinel nodes tested positive. Did you have more than one area of microinvasion discovered from your surgical biopsy? I hope your CT scans went well.
Has anyone else tested positive in their sentinel node with microinvasion only? My job is in the airline industry - so clearly I fly a lot. I am concerned about the link between lymphedema and flying. Anyone else out there in the airline/commercial aviation industry?
I have been stalking this website for a month now and I GREATLY appreciate all the wonderful information and advice. Beesie, you have helped me A LOT with all your information.
Thank you all.
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Hi seeclearly I had a somewhat similar situation to you. Prior to my diagnosis I had two biopsies,one that came back clear and one that may have caught a small piece of an invasive cancer. So off we go to incisional biopsy/lumpectomy. At that time it was not clear at all what the outcome would be. The surgeon recommended a sentinel node biopsy which I declined. It was agreed if there was a need, a second surgery would be done to do the sentinel node.
My post surgery diagnosis came back DCIS so no need for a sentinel node biopsy based on best practices.
At a later time my diagnosis was changed to DCIS with microinvasion-(long story how that happened). But still if you read the literature it is very unclear as to whether a sentinel node biopsy is required or helpful for DCIS with microinvasion. So I continued to chose to go without. There you have it-best wishes as you sort this all out.
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Brigid_TO, thank you for your response - very helpful! I see you got radiation and you took Tamoxifen briefly. Have you had any longer term side effects with the radiation? I'm guessing you had SE with the Tamoxifen and that's why you took it so briefly? Have you decided to stop the hormonal meds completely? I hope you are doing well and feeling well now! Thanks for taking the time to write. The whole thing is such a moving target!
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