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Topic: DCIS with less than 1mm microinvasion

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Sep 15, 2008 02:24PM, edited Sep 15, 2008 02:27PM by Liz08

Liz08 wrote:

Just curious is there anyone who had mainly DCIS with a microinvasion of less than 1mm?    If so, what was your hormone status, Her2 status and ofcourse treatment plan?  I was told that this type of diagnosis is VERY rare and I can't seem to find anyone with exactly the same diagnosis.

Thank you.

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Sep 15, 2008 02:34PM Kerry1000 wrote:

I had 'several' areas of microinvasion (didn't give the mm amount) plus microinvasion in one lymph node.  The invasive cancer was ER/PR- and Her2 +++ (the DCIS had been ER/PR+ as well as HER+++; I had it re-tested several times).

My understanding was that it was the lymph node microinvasion, not the DCIS microinvasion, that pushed me over the line from being considered "DCIS only" to "Stage IIa" (though with a Stage 1 prognosis).  I ended up having chemo., Hercepting, and radiation after seeing several doctors, all of whom advised me to do so. 

Dx 4/19/2006, IDC, <1cm, Stage IIa, Grade 3, 1/5 nodes, ER-/PR-, HER2+
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Sep 15, 2008 03:00PM Erica wrote:

There have been a number of women on these boards with a diagnosis similar to yours. I believe that microinvasion is by definition less than 1 mm. It's called a Stage 1mic and is defined as a microinvasion not larger than 1 mm in greatest dimension. I had a Stage 1a diagnosis, with a small invasion of 3 mm. Stage 1a is defined as a tumor larger than 1 mm but not larger than 5 mm in greatest dimension.

For your diagnosis, especially if there's no cancer found in the lymph nodes, the prognosis is excellent. 

Barbara

BreastFree.org

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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Sep 15, 2008 04:34PM OG56 wrote:

I too had DCIS with a small invasion. I was ER + 60% PR- and HER2 -. My treatment was a lumpectomy ( I had clean margins afterwards) and a week later I received mamosite radiation tx. and than began Arimidex. I know that everything is confusing and scary and I wish you the very best. Keep in touch.

(5-09 Bilateral Pleomorphic LCIS)

Dx 5/30/2008, IDC, <1cm, Stage Ia, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Sep 15, 2008 05:24PM Dejaboo wrote:

I had DCIS grade 3.  1.5 cm.   I was A little over 'mircroinvasion' 1.2mm IDC.

Er+ 18%, PR-,  Her 2 + Fish 8.3.  Clear Sentinal Node.

Had Lump with Clean Margins, also Choose BLM.  No Chemo- Not recommended.  So then No Herceptin- Since I couldnt find any Onco that would do that alone...And of Course Insurance wouldnt pay either.

Onco is mildly recommending Tamox after I heal 3-6 months after  heart surgery that I need (stroke risk right now).   And that surgery isnt even scheduled yet.

So Tamox would start if I decided on it over 1 year after dx.

I have read with my Low ER+ I have a 20% chance of tamox helping me.  That isnt alot in my book.    I will probably continue to loose weight & get my BMI down more.  My BMI was 24 pre cancer.  Its 22 now. I am aiming for 20.

I read this week that your 'good breast' produces estrogen...So I feel by having a BLM that was in my favor as far as its estrogen production...?

I also have a list of Suppliments I take.

Pam

Dx 3/7/2008,DCIS, IDC-1.2mm, Stage tIA, Grade 1, 0/1 nodes, ER+/PR-,HER2+,Lump/SNB-4/1/08, Bilat 5/22/08, EX 9/22/08, PFO & ASA heart Closure 12/29/08, 7/09-RAVH, 11/09-NOLA-SGAP-to fix Symmastia! Stage2 4/2010, Stage2B 11/2010, Truncal & Arm LE

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Sep 15, 2008 08:05PM hopefor30 wrote:

Is it still a microinvasion if it is different?   Or is it just another cancer?   I had grade 3 DCIS spread out over a 6cm area with the largest area being just under 1cm.   I also had a 3mm invasive tubular cancer which was grade 1, ER/PR+ and HER2- -- I don't know the hormone status of the DCIS -- it was not on my pathology report -- I think once you have some invasive they only care about that.

I did not do chemo - currently taking tamoxifen.

M.

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Sep 15, 2008 10:30PM Beesie wrote:

Liz, as Barbara said, by definition a microinvasion is always 1mm or less.  Anything more and technically it's no longer supposed to be called a microinvasion - it's simply a diagnosis of IDC together with DCIS. Still, I know that many doctors do use the term "microinvasion" for anything up to about 3mm. 

DCIS with a microinvasion, particularly high grade DCIS, is actually quite common.  The numbers vary depending on the study, but seem to be in the range of 10% - 30%.  I had a 1mm microinvasion.  With a microinvasion, the one necessary addition to the surgery & treatment plan is an SNB.  For those who have high grade DCIS, and particularly those with high grade DCIS who are having a mastectomy, often an SNB is planned anyway.  With DCIS, it's done just as a precaution.  With a microinvasion, it's done because there is a risk - about 10% - that there may be lymph node invasion.  Once the SNB is done, if there is no lymph node invasion, usually the rest of the treatment is identifical to what it would be if the diagnosis was pure DCIS without a microinvasion.   In my case, because my DCIS was widespread, I had a mastectomy.  I did not require radition and while Tamoxifen was discussed (but not recommended), my oncologist explained that the only significant benefit would be as protection for my remaining breast.  After a mastectomy for DCIS or DCIS w/ a microinvasion, the recurrence risk is the same - only about 1% - 2%.  The only thing that might change this - either the recurrence risk or the need for radiation - would be if the microinvasion was right at the margin of the removed tissue.  Otherwise, no additional treatment is necessary for those who have a mastectomy.  For those who have a lumpectomy, radiation will be required and for those who are ER+, Tamoxifen usually will be recommended.  Again, it's the same treatment whether it's pure DCIS or DCIS w/ a microinvasion.

To your question, my hormone status was ER+/PR-.  I did not get HER2 results because they are irrelevant for DCIS (at least for now, until scientists/doctors figure out what it means for DCIS patients) and with only 1mm of IDC, HER2 status on the IDC portion would be difficult to accurately assess and in any case, would not change the treatment.

M, I don't know if a different type of cancer would be considered a microinvasion.  In any case, at 3mm, technically you are stage I T1a rather than stage I T1mic.  T1mic is not larger than 1mm.  T1a is larger than 1mm but not larger than 5mm.   

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Sep 16, 2008 12:24PM hopefor30 wrote:

Beesie,

I knew that I was a T1a, but what I was curious about was that I had high grade DCIS with necrosis and the "invasion" was grade 1, well-differientiated tubular.   In most cases, the invasion is the same grade as the DCIS -- so I guess I am lucky that it is different.    Mine was not called a microinvasioin -- it was called invasive tubular with a DCIS.

M.

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Sep 16, 2008 01:19PM bamagirl56 wrote:

saw that you were on Arimidex. How is that going I have been on it about 20 days now and was wondering if you are having any of the side effects?  Thanks  bamagirl

bamagirl

Dx 7/3/2008, DCIS, 2cm, Stage 0, Grade 1
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Sep 16, 2008 02:56PM, edited Sep 16, 2008 02:57PM by Erica

MAMHOP,

That's interesting that you were even told the grade of your DCIS. When I was diagnosed with DCIS plus a 3 mm IDC in my right breast, my path report only indicated the grade (Grade 1) and ER/Her2 status (ER+/Her2-) of the invasive portion.

When I was later diagnosed with DCIS in my left breast (a new primary), the DCIS was all Grade 2 and 3 (and ER+). I wondered at that point whether the DCIS in the right breast had been Grade 1 like the invasive portion, or whether the DCIS in that breast had also been a higher grade than the Grade 1 cells that managed to become invasive. Maybe Beesie or someone else will know more about this.

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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Sep 17, 2008 11:06PM OG56 wrote:

Bammagirl I am doing fine on the Arimidex. Really only minimal stiffness and some hot flashes at night! I definetely can tolerate this for the next 5 years! I will tell you that the first 2 weeks I felt kind of wierd on it but that subsided and now I don't notice anything much at all. Hope it goes well for you too.

(5-09 Bilateral Pleomorphic LCIS)

Dx 5/30/2008, IDC, <1cm, Stage Ia, Grade 1, 0/1 nodes, ER+/PR-, HER2-
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Sep 18, 2008 03:21PM bamagirl56 wrote:

OmahaGirl thanks for the reply yes I wake in the a.m. with a little stiffness but once I get up and start moving it is much better, my job also keeps me pretty much moving all day so I think that helps, no time to get STIFF!!!! Thanks again and good luck to you..bamagirlSmile

bamagirl

Dx 7/3/2008, DCIS, 2cm, Stage 0, Grade 1
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Oct 15, 2008 09:49PM Liz08 wrote:

Thank you all for responding and sharing your experiences and knowledge.

(((hugs))) to everyone. 

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes

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Mar 4, 2009 05:30PM Liz08 wrote:

Hi all!

Thought I'd bump this topic up to see if there is anyone missed this thread or if there are any new members that fall into this diagnosis.  Wishing everyone the very best.

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes

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Mar 4, 2009 06:27PM Hockeymom1 wrote:

I also had DCIS w/ 0.5mm microinvasion.  My path showed ER-/PR- and my oncologist assumes my Her2 would be negative also due to my BRCA1 statusl. I was also grade 3 and 8/9 on the nottingham scale.

 I had a bilateral mastectomy as the risk with getting another BC with my BRCA status was too high for me to gamble with.  No chemo, no rads.

 Very interesting though.  I guess we all caught our cancer just in time.  I know I'm the only women in my family to have survived BC - so I feel very fortunate. 

 All my best,

Keli

DCIS 5cm+ w/0.5mm microinvasion Grade 3 ER-/PR- 0/2 nodes

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Mar 6, 2009 08:51PM dee1961 wrote:

Bump..hello ladies

Love is never wrong

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Mar 7, 2009 08:20AM, edited Mar 7, 2009 09:02AM by ZOO

Hi, ladies!

I can bump this thread by my first posting. Yes, I'm in same group with you.

Dx 3/17/2008, high-grade DCIS with microinvasion in right breast when I was 37. Because of my wide spread DCIS and small breast, I had mastectomy with SNB in April 16, 2008. Negative node and no radiations. I had reconstruction with silicone implant and am waiting nipple reconstruction.

Pathology report said there were tiny microinvasions (3 or 4 spots) and all less than 1mm. According doctor, all the invasion parts were just  few cells. My hormone status was ER2+/PR2+,  and Her2 3+!. The fact was very shock and frightened me. I searched and searched to find similar case with me to decide my treatment plan. Liz and Dejaboo, I know you well. You were active and encouraged me very much.

After long discussion with my doctor, I choose taking AI (Femala) with Zoladex injection. No-chemo. Chemo was not recommended. So far, I'm doing OK.

ZOO

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Mar 10, 2009 05:11PM, edited Mar 10, 2009 09:19PM by Liz08

Hi Keli, Dee and Zoo-

I'm sorry you had to join this club but it is a great place to ask questions, share information or just to hang out.  This site has helped me get through the worst time of my life and am very thankfull to all the wonderful ladies who have shared their knowledge, wisdom and experience.  I don't know what I would do without you Wink.

With our specific diagnosis meaning "microinvasive DCIS" we are a rare group and I personally have felt sort of like a "misfit" Cry because I have not been able to find others who are in the same boat as me but now feel better that I have met others like myself.  I hope that makes sense.... Thank you for posting and I'm so glad to meet all of you.  Wishing everyone the very best.

Sending (((hugs))) to all of you,

Liz   

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes

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Mar 20, 2009 05:56AM laughlots wrote:

Hi girls,

I too was diagnosed with DCIS grade 3 with .7mm of microinvasion.  They did a sentinel node biopsy 0/3 nodes were negative.  I was told radiation for 6 weeks or masectomy.  I had risk factors that made Tamoxifen contraindicated.  I've agonized over what to due and with my autoimmune disease it looks like BLM with reconstruction will be the best option so I'm scheduled for surgery next week.  I was told by two oncologists that chemo was not necessary at this time.  Since I'm 43 and adopted without any family history this decision is even more agonizing.  I'm blessed to not have to undergo radiation and chemo if I do BLM but I struggle b/c I don't want to cut parts of me off.  I feel very fortunated to have caught my cancer early but it's all still very difficult. 

They also could not see the cancer by ultrasound, mammogram, MRI or BSGI....9 months prior to diagnosis I was given a clean bill of health.  The radiologist thought she was looking at a hemorragic cyst and wanted to biopsy it for thoroughness and was completely shocked that it turned out to be cancer.  What was thougth to be very tiny turned out to be 2.4 cm of high grade DCIS with microinvasion and it took 6.7 cm of breast tissue being excised to get clear margins. The radiologist said that it was very difficult to detect anything on me and I was one of those rare cases where it really didn't show up on any scans. 

After the biopsy I took my films to a University hospital and one of the breast radiologists said looking at the films that they wouldn't have even biopsied that area b/c it looked like a normal cyst and my DCIS didn't present in a typical manner.  With all this I'm now scheduled for surgery because if I can't trust the normal screening methods I may not get "lucky" again with them finding anything early.  

 Sorry for rambling....this has all been very stressful and it's not over yet.  Thanks for listening.

 My best to each of you,

Laughlots

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Mar 20, 2009 08:01PM kaja527 wrote:

Hi,

I am so thankful for all the info that everyone shares.  I was diagnosed last month with DCIS, high grade after having a needle core biopsy.  Two weeks ago I had a lumpectomy with needle localization.  The wait for the Pathology report was agonizing. The results showed that the margins were clean, but that I have a 0.1 microinvasion.  I am scheduled March 31 for an SNB.  Can anyone tell me what they do in Nuclear Medicine before surgery?

 I am scared to death that the results will show that the cancer has spread to the lymph nodes and what that means as far as follow-up treatment.  I think that I am more frightened about the possiblity of having chemo. over anything else.  I am so confused and tired of all of this. I just want to get on with my life.  I am a positive person and know that the outcome with be positive.  It is just getting there that is the hardest.  The other problem that I have is that I have a Factor V Leiden deficit that requires me to take Coumadin for the rest of my life.  Every time that I have an invasive procedure I need to give myself Lovanox injections in the the stomach twice a day.  I guess we are all in a "unique" group!

Laughlots..my thoughts and prayers are with you for your surgery.

Kathy

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Mar 22, 2009 06:50AM laughlots wrote:

Kathy,

It's it terrible that I can't totally remember what they did before my sentinel node biopsy.  If I remember correctly they injected the radiotracer/dye into the breast wait and took a little hand held scanner to make sure the die got where it was suppose to go.  I was then taken to surgery and had 3 nodes removed.  With high grade DCIS and microinvasion I was told there was a 10% chance that it had spread to my nodes.  It turned out that my nodes were clear.  Hopefully this will also be the case for you!!!! Stay positive and take it one day at a time!!!!  Thanks for your thoughts and prayers; mine with also be with you!

 My best to you,

Laughlots

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Mar 22, 2009 06:23PM Liz08 wrote:

Kathy-

Remember that with a tiny microinvasion there is only a tiny chance that you will have a positive node and a much greater chance that your node(s) will be clear.  Focus on the positive and on the information you presently have.  My surgeon (who is a cancer survivor) yelled at me for worrying about the what if's and I'm glad she did that.  Her scolding me gave me a rude awakening, life is too fragile to worry and waste energy about something that may never be but that you need to focus on (the present) what is and live life to the fullest.  You never know, we may get hit by a truck instead but we don't worry about that happening, do we?   I hope that makes sense? 

Sentinel Node:

As soon as my surgeon found out my DCIS was high grade she automatically did a sentinel node along with the lumpectomy which I liked that idea.  I did end up with less than 1mm of a microinvasion along with my DCIS and my sentinel node was clean.  Before surgery my doctor used 2 different techniques to identify the sentinel node.  I believe one method was a dye method and the 2nd was a radio active solution which they use a special device that beeps to ID the sentinel node.  I know if you google this you will find more information on it. I can't believe that I don't remember the correct terminology (my surgery was February 14, 2008) but I prefer to forget bad memories and you too will reach this point....that all of this is just a bad memory.  Hang in there and let us know if you have anymore questions. 

Wishing you the very best,

Liz

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes

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Mar 23, 2009 01:33PM kaja527 wrote:

Thank you so much for the information and your thoughts.  I know that you are right about staying positive.  I usually am the "glass is half full" and the forever optimist, but it is such a roller coaster ride in the beginning.  I just want to move on. I know that what ever I need to do, the end result will be positive, but it is just getting there.  It is so reassuring that you have traveled down the same path and are able to put it behind you and get on with your life.

I did more research over the weekend about the SNB and understand what will happen. I am sure the Oncologist will go over everything with me also.  I'll let you know the outcome.

Kathy 

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Mar 24, 2009 10:42PM peanutmilk wrote:

My first diagnosis after my right breast mass excisional biopsy was DCIS with less than 1 mm of microinvasion. Then I went for a second opinion and the second pathologist agreed. Then I went for another opinion, had my samples examined again, and was finally told that the microinvasion feature was probably just caused by trauma or inflammatory reaction to the surgical technique used. A few months later, I had a mastectomy and the diagnosis was that it was completely DCIS, extensive and high-grade but no microinvasion, no lymph nodes (0/2) involved, and ER+. I don't know what my HER2 status is as there was no mention of it in the report but I'll ask my general surgeon about it next week. And oh yeah, only thing is I have one slice (from the mastectomy) containing a positive margin, which they will fix at my next surgery when I trade my expander off for a permanent implant.

Dx 8/8/2008, DCIS, Stage 0, Grade 3, 0/2 nodes, ER+/PR-
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Mar 24, 2009 11:51PM Dejaboo wrote:

Peanutmilk- Did they explain what they meant when they said  "microinvasion feature was probably just caused by trauma or inflammatory reaction to the surgical technique used."

Id like to understand it better.

Thanks,

Pam

Liz we both had our surgeries on a Holiday.  Mine was April Fools Day 2008

Dx 3/7/2008,DCIS, IDC-1.2mm, Stage tIA, Grade 1, 0/1 nodes, ER+/PR-,HER2+,Lump/SNB-4/1/08, Bilat 5/22/08, EX 9/22/08, PFO & ASA heart Closure 12/29/08, 7/09-RAVH, 11/09-NOLA-SGAP-to fix Symmastia! Stage2 4/2010, Stage2B 11/2010, Truncal & Arm LE

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Mar 25, 2009 12:17AM, edited Mar 25, 2009 12:18AM by Liz08

Wow Pam!  My sister's b-day is April fools daySurprised.  You know, I was worried that I would associate Valentine's Day with my "cancer" surgery but I actually forgot about it when Valentine's Day came Laughing.

What date do you use as your survival date? I use January 16th since that's the date the radiologist who read my mammogram told me that he was pretty confident I had "intraductal cancer" as he put it.  He also told me that I was very lucky that there are digital mammograms otherwise my cancer would probably have been missed by an analog mamogram b/c my breasts were very dense. 

Also, my sister who's b-day is April 1st told me that I was very lucky to have Dr. B read my mamograms since he is the best and extremely anal. I guess he must be, since he kept asking for more views of my breasts, I ended up leaving almost 4 hours after my appoinment because of all the extra pictures/views he kept asking for.   My sister worked with this radiologist for many years and knows of his reputation.  I never knew this doctor since I haven't met him b/4.

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes

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Mar 25, 2009 12:28AM Dejaboo wrote:

 My date was No Joke- LOL. 

I decided to use my DX date (Dejas Bday)   And will just think of the 1st As my Surgery day.

My sister once lost/left her tooth for the tooth fairy on April Fools Day & got her own pair of Undies under her pillow- LOL

Pam

Dx 3/7/2008,DCIS, IDC-1.2mm, Stage tIA, Grade 1, 0/1 nodes, ER+/PR-,HER2+,Lump/SNB-4/1/08, Bilat 5/22/08, EX 9/22/08, PFO & ASA heart Closure 12/29/08, 7/09-RAVH, 11/09-NOLA-SGAP-to fix Symmastia! Stage2 4/2010, Stage2B 11/2010, Truncal & Arm LE

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Mar 31, 2009 08:51AM, edited Mar 31, 2009 08:53AM by peanutmilk

Hi Dejaboo,

Sorry about the late reply. This is what the excisional biopsy path report says about the microinvasion:

"Sections from Part A show ductal carcinoma in situ, with a focus consistent with microinvasion (\R\ 0.5 mm). This small focus of carcinoma is surrounded by an inflammatory infiltrate. A review of the immunohistochemical stains for calponin and myosin performed on Block A2 highlights this small focus of carcinoma as an area that lacks staining for myoepithelial cells, and has a few scattered individual tumor cells in the stroma. This could also represent a disrupted duct due to trauma or inflammatory reaction, but the tumor cells are seen in stroma in any case and are consistent with microinvasion."

This is the latest path report based on the mastectomy tissue:

"DCIS shows involvement of the lobules and sclerosing adenosis, and foci raising the possibility of invasion are noted on slides A18 and A22. Therefore, immunostains for myoepithelial markers were performed and evaluated on block A18 (p63 and SMM stains) and block A22 (p63, SMM and calponin stains) to exclude invasion. The p63, calponin and SMM stains highlight extensive involvement of lobules and sclerosing adnosis by DCIS and show no evidence of invasion."

My surgeon didn't explain it but i think it has something to do with the "staining"? I guess the stains are used to prove whether or not such cells, which have features consistent with microinvasion, are really invasive. Also maybe the surrounding "inflammatory infiltrate" provides such clue that the microinvasion features might have been caused by surgical trauma.

Dx 8/8/2008, DCIS, Stage 0, Grade 3, 0/2 nodes, ER+/PR-
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Apr 5, 2009 08:12AM InspireEmpowerConnect wrote:

Hello Laughlots & other Courageous Women of this forum!

I appreciate your post from March 20 and hope your recovery is going well after your recent surgery. Please let us know how you are when you are able to check in here. I'm sending you lots of healing energy and positive thoughts.

When you described how tricky it was to spot your cancer and how lucky you were to have caught it so early, I absolutely feel the same about my situation. Still this is a huge life change and complex process of gathering facts while dealing with one's own emotions as well as those of others. I am greatly encouraged by so many comments I've read at this forum and especially yours because you are just a few weeks ahead of me on this journey.

My symptom was bloody discharge from the right nipple. Last December, I'd noticed blood stains on my bra and pajamas but thought nothing of it, assuming I must have had a sore and scratched myself. Then, in late January, I actually saw blood come out of my nipple and immediately googled this symptom. I learned it most likely was a ductal papilloma with only a 10% chance it would turn out to be cancer. So I scheduled a doctor's appointment and went in a few weeks later. My doctor examined me and decided to send me to a breast surgeon, assuming as I did that it would end up benign.

I had breast exams by different doctors, two sets of mammograms six months apart, an ultrasound, none of which showed anything abnormal.

On March 23, I had surgery to remove the nipple duct from my right breast and found out on March 25 it was DCIS (extensive, nuclear grade 3, necrosis present, patterns-comedo, cribriform, solid, micropapillary) with 0.3mm microinvasion and Grade 2 (T-3, N-3, M-1).

I'm scheduled for an MRI on April 15 (if my period starts at the expected time) to determine if there is any sign of cancer elsewhere in my right breast or also in my left. After that, I'll need to choose lumpectomy with radiation or mastectomy (single or double) with reconstruction.

I've scheduled appointments with a genetic counselor and two plastic surgeons so I have as much information as possible to make the best decision for me. My family history includes breast and ovarian cancers (maternal grandmother) and primary peritoneal cancer (mother) so I want to assess how this affects my own risk factors.

I feel very fortunate for the care I am receiving and know I will get to the other side better than ever. However, my business happens to be in a period of tremendous growth and I have a very full month ahead of exciting events that will keep me quite busy. So I'm doing my best to trust my doctor's advice to do what I'd planned this month and aim to have surgery toward the middle of May.

One of my concerns is the possibility that by waiting, the cancer might spread to lymph nodes by the time I have surgery. Since I don't know how extensive the DCIS is now and the next step is the MRI, I really do just need to take one step at a time and trust my own instincts. More than likely, I know the lymph nodes will probably be clear, and this does help alleviate the anxiety.

If anyone else has had similar struggles with taking time to make decisions given the invasive and more aggessive nature of your DCIS, please share your experience.

I'm also curious about the factors that may have helped in choosing lumpectomy with radiation versus mastectomy. I know everyone's situation is unique. Still I'd love to hear from you.

Best wishes to all!

Kristi

Kristi

Dx 3/25/2009, DCIS, <1cm, Stage I, Grade 2, 0/7 nodes, ER-/PR-, HER2-
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Apr 5, 2009 04:21PM Beesie wrote:

Kristi, welcome!  I'm sorry that you've had to join us but glad that you've found us.

While my diagnosis didn't come about in the same way as yours, where you are right now is exactly where I was after my diagnosis, with all the same issues & concerns.  I'd had a mammo that showed two large areas of calcifications and then had a stereotactic biopsy that showed atypical cells.  At that point I had an excisional biopsy; the result was lots of grade 3 DCIS with comedonecrosis, a microinvasion of IDC (1 mm) and no clean margins on any side of the removed tissue. So like you, I knew that I had aggressive DCIS and a microinvasion.  I could have had surgery within a week but since it was recommended that I have a mastectomy, I wanted to get a 2nd opinion.  And if I needed to have a mastectomy, I wanted to have immediate reconstruction.  So that meant that I had to change surgeons, consult with a plastic surgeon, get them to coordinate their schedules and while that was going on, I had an MRI of both breasts and biopsy for calcs in my other breast (benign, fortunately).  So after having my excisional biopsy in early September, I didn't have my mastectomy until late November, more than 2 1/2 months later.   I was really worried that with this delay more invasive cancer would be found, especially since I already had a micronvasion. And I worried about my nodes. But in the end, while there was a lot more DCIS found in my breast, it was all just DCIS - no more microinvasions and my lymph nodes were clear.   So the delay didn't cause any problems at all.

As for the mastectomy decision, I really didn't have a choice because I had two large areas of DCIS in a rather small breast.  I did have to make the single vs. bilateral decision but that was an easy one for me after the biopsy on the calcs in my "good" breast came back benign and the MRI was clear.  I wasn't thrilled about the idea of a mastectomy to begin with and there was no way that I was going to sacrifice another breast - and more importantly, all the breast & nipple sensation - if it wasn't necessary.  My plastic surgeon was confident that she would be able to get reasonably good symmetry with a single mastectomy and she explained that having a bilateral is by no means a guarantee of better symmetry.  I also knew that I would be comfortable living with my risk level to get BC again in my remaining breast - I'm considered high risk but my risk level doesn't scare me.  That's often the reason why women do choose to have bilaterals.

One final quick comment.  Because you have the small amount of IDC, just like me, your staging is now Stage I.  Stage 0 is always Tis (in situ cancer only with no microinvasion), N0, M0.   With a diagnosis of DCIS with 0.3 mm IDC, with no node involvement, the TMN status would be T1mic, N0, M0.   T1mic represents an invasive tumor that is 0.1 cm or less in size (0.3 mm = 0.03 cm). N0 means no nodal involvement and M0 means no mets. Grade is not considered in staging.  T3, N3, M1, which is what you mentioned, would be Stage IV.  T3 is a tumor that is more than 5 cm in size.  N3 represents significant metastasis to the nodes, and M1 means mets beyond the nodes.  Of course staging at this point is preliminary and can still change as a result of the final pathology but hopefully your staging, like mine, will stay at Stage I with T1mic.  On pages 57- 59 of this document, you can get good information about staging:  http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Apr 5, 2009 06:46PM InspireEmpowerConnect wrote:

Hi Bessie,

Thank you so much for your speedy reply. I've read many of your posts and greatly appreciate your generous sharing so everyone has access to credible sources of information. That is so important given the amount of misinformation that is floating around in cyberspace. I'm also an avid researcher so I know we'd get along great!

I appreciate your correction about my staging. I wasn't familiar with the formula you provided for my TMN status (T1mic, NO, MO). After looking at the document you shared (THANK YOU!), I became much clearer about the distinction between Stage and Grade. Not that there isn't still much to learn, mind you! On my Path Report, T-3, N-3, M-1 refers to Histologic Grade where T=Tubule Formation, N=Nuclear Pleomorphism, and M=Mitotic Count. Thus, I am Grade 2 because 3+3+1=7 which is "moderately favorable" according to the information on page 59. Isn't it funny that the T, M, and N are in both classification schemes? Now at least I can distinguish them for myself and, hopefully, clear up some confusion for others!

Your journey does sound similar to mine in terms of both issues to consider and options. It's great to connect and I'm sure we'll stay in touch.

One step in front of the other, giving myself the time I need to choose wisely and continue living my life...Cool

Kristi

Kristi

Dx 3/25/2009, DCIS, <1cm, Stage I, Grade 2, 0/7 nodes, ER-/PR-, HER2-

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