Microinvasive DCIS with Her2 +, ER- and PR-

khanh

First, I had lumpectomy on Sept 4 09 and second trying to clear margin on sept 29, 09. I had DCIS from stage #0 go up to I because micorinvavise 1mm. I just wonder any women out there get treatment with herceptin drug or any other type with the same my condition ER- , PR- and her2+. nuclear grade #3.

3 Oncologists I talked to they said I don't need any other drug or chemo, or herceptin. I only need radiation and follow anually check up. I am not sure these are good ways. Please give me advice with your expericence. I am still worry especially I have 2 young kids 8 and 5 yrs old. 

However, Oncologist told me if I want to have hercetin she can give me 2 does around 6 weeks but she doesn't know it would help prevent recurrent because no data it show help. Right now, studying for DCIS in trial 2 does heceptin durg. That why I am thinking but don't know for sure. do you have any idea?

dee1961

I have same dx as you except I was ER+PR-HER2+++. No chemo, no herceptin, no tamox or radiation. I had bilateral mastectomies which were my treatment. With a lumpectomy they may suggest radiation but that's all I have heard with a 1mm microinvasion. The side effects from other treatments outweighed the benefit with the mastectomies. Good luck to you.

Liz08

K-

 just want to let you know that I had excatly the same diagnosis as you, Stage T1-mic (DCIS with a focus of less than 1 mm of a microinvasion) Er-,Pr-, but her2+++.  I was 38 when diagnosed with 3 young children ages10, 5 and my youngest was only 8 months old.  I consulted several oncologist who also consulted other oncologists ALL the oncologists said that the risks of chemo and/or Heceptin outweighed the benefits.  I was healthy and had to no health concerns to consider. Some of the oncologists that I consulted with were Eric Winer from Dana Farber in Boston, Yale in CT, and I even e-mailed John Hopkins.  To the best of my knowledge, there are no studies to support Herceptin's effectiveness without chemo and that's what my oncologist told me at my last visit a few months back. 

I had a lumpectomy and a re-excision to clear a margin and 33 radiation treatments.  Negative sentinel node. I see a doctor from my team at least every 3 months.  My team refers to medical oncologist, radiation oncologist, or surgeon.  Annual bilateral mammograms, and a mammogram on the breast that had the cancer every 6 months.  Also since my breasts are dense and very lumpy, my surgeon has done an anual breast MRI but I think that she said the she may not continue the MRI's for insurance reasons, which I plan on pushing for if possible.  I also am followed by a naturalpathic physician who specializes in women's health and treats many of my surgeons breast cancer survivors. 

My advice is to seek out opinions and then follow your heart and make a decision that you can live with and never look back.  I'm sure you've noticed that our particular diagnosis is VERY rare.

Feel free to PM anytime.

Wishing you the very best,

Liz

khanh

Thank you very much to everyone. I am so happy and appreciate to hear from your experience. Now, I feel more confident than ever with radiation treatment and without other drugs.

Liz,  I am going to 36 yrs old. What year did you have diagonsis? After knowing you and other ladies I think I am on the right track now.  Your Info is very valuable for me. Did you know anyone recurrent?

Daisy, I would like to learn more about dietary you are talking about. Where can I get this info?

Best to all (:))(:)(:) 

  

khanh

By the way, did your doctors mention to you that if you have any symtoms like joint pain or long cough..... you need to report to doctor right way. 

Thanks 

Liz08

K-

I was diagnosed in 2008.  Initially when I was diagnosed, I felt like such a misfit since I couldn't find anyone in the exact same boat as me.  I didn't belong on the her2+ forum and yet I didn't in the DCIS forum either.  As I stated earlier, finding others who are hormonally negative, her2+++, and having such a tiny miniscule microinvasion that is her2+ just didn't happen often at all.  A little more common is being hormonally positive and her2+ but is also very rare.  Only over the last few months I found a few members with the same diagnosis and I do feel better that their treatment was the same as mine.   Dr. Susan Love said that cancer is a crap shoot and she is very right.  With cancer, no matter what your treatment is, it will not cure you 100% and that's a fact.  You have to follow your heart with treatment choices and move on with your life.  Years ago they never tested for her2.  In actuality the prognosis for microinvasive DCIS could be the same as plain DCIS but we'll never know if microinvasive DCIS wasn't tested for her2 years ago. Years ago equipment such as microscopes etc wasn't as sophisticated and didn't pick up microinvasions DCIS as easily, so it got lumped in with plain old DCIS and we all know that plain DCIS has an excellent prognosis.  I forgot to mention that the majority of times DCIS is her2+++.

After being diagnosed, symptoms that I would normally dismiss, I no longer do.  Since my BC, I have had 2 skin basal cell carcinomas which due to my my heightened awareness fortunatly I had them checked out.  Now I have to see a dermatologist at least evey 6 months for an entire body skin check.  I know this happened due to the fact that in my HS and college days, I used to worship the sun.  Thank God, I never went to a tanning both.

I have had a few false alarms due to my heightened sensitivity.   Most doctors have a 2 week rule, if you develop a new unexplained ache and or pain it's definitely a good idea to get it checked out.  Chances are that it's not cancer related but it's always good to be on the safe side.  With time you will start to trust your body again.

Wishing you the very best,

Liz

Liz08

Daisy-

I'd be interested in hearing what type of dietary changes you have heard.  When I have a chance I will post what supplements my naturalpath has put me on in addition to advising me to include as many berries as I can in my diet, along with drinking atleast 4 oz of each; (Bolthouse brand)Acai berry w/blueberries and (Wonderful Brand)Pomagranite juice daily.  

ZOO

Ladies,

I'm in similar group, t1mic and Her2 3+. But I'm Er/Pr+.

Dx 3/17/2008, high-grade DCIS with microinvasion in right breast when I was 37. I had mastectomy with SNB in April 16, 2008. Negative node and no radiations. I had reconstruction with silicone implant and gotten new nipple, Yeah!

I wasn't recommended chemo, like other ladies. I did no chemo. Since I am hormone positive, I'm taking hormonal therapy.

No chemo is a kind of standard for our group, so far. I believe my decision is the best for me. We did everything as possible as we could when we made decision. Trust ourselves!

ZOO

Jan1

Hi ladies,

Quick question, I have the same dx as zoo,  multricentric DCIS, with microinvasion, 3different areas in the breast, but I am older than you lovely ladies, 52 at dx.  Right sided mx with reconstruction.  I am getting the nipple in 3 weeks!! Tattoo to follow in March.  Because I did the mx, no chemo or radiation needed.  

What is the difference between stage 0 and T1-mic.  What does the T stand for?

Thanks Jan

Erica3681

Jan, I can tell you that stage 0 means that all the cancer is still in the ducts (pure DCIS), it hasn't invaded the breast tissue outside the ducts. Stage T1-mic means that a tiny amount of cancer cells have managed to escape the ducts, but the individual foci of cancer cells are each <1 mm. The mic in T1-mic stands for microinvasion. I can't remember exactly what the T stands for, though I know it describes the size of the cancer. If you go to the DCIS forum, you might get more information.

Jan1

Thanks Erica.  I just know that my path report stated that I had grade 3 with comedo necrosis and mircroinvasion.  The surgeon stated I had 3 distinct areas of what looked to be the same DCIS so I wasn't a candidate for lumpectomy.  The good thing was that with the mx, I didn't need radiation or chemo.  What is weird is that some physicians still call this grade 0, while some call it grade 1.  All I know is that I hopefully got rid of it. 

There was a great article in my Ventura Co. CA newspaper from a woman that had DCIS in 1991.   Two years ago had a small area on her scar line a small scab area that didn't heal and she had MRI and a mammo and nothing showed up.  She went to her dermatologist who biopsied the sore and it turned out to be BC.  There was a walnut size tumor under the scar that couldn't be felt and missed by the MRI.  So ladies watch your scars.  This is the stuff that we share that save our lives.  

Jan

laura347

hi liz, your situation sounds like mine...not very common.i was just curious if you had any info on what recurrance rates for this are?? feels like were in such grey area. i also dx with er-pr-her2pos+++, microinvasion less that 10cells...sentinel node clean...no sign of vascular involvement. now having to deal of course with dr every 3 months and accepting that doctors are not recommending any follow up treatment...also i had double mast. i would really love to talk with you or anyone with case similar to mine thanks laura

Liz08

Hi Laura-

I don't visit this site very often anymore but luckily I did come across your post. 

In the end, I believe that I ended up getting over 10 opinions, all of which said that the risks of chemo/herceptin outweighed the benefits.  I did my best to leave no stone unturned.  Within the last few months I met another member who had the same diagnosis as us and she sought out several opinions including John Hopkins and a Dr. Miller from the univeristy of Indiana and in the end was told that after her double mastectomy, no other treatment was recommended.  

My doctors' opinion on prognosis varried with the worst being 90% cured and the best was 98% cured with most agreeing on about 95% cured. That's an excellent prognosis as far as cancer is concerned.  The member I mentioned in this post was given the same prognosis as having plain DCIS which is excellent.  

Yes, we are a very rare bunch but lately I have come across more members that are in the same boat as us.  If you would like to connect with more members like us try using "microinvasive" or "microinvasion" as your key search words. When reading about other members treatments keep in mind we are not stage T1A which the tumor can be up to 5mm.  That's a big difference from microinvasive (1mm or less) when it comes to her2+++ tumors. At least that's what my doctors said.

 I hope I answered your questions.  Being 2 years out from diagnosis, I still am on a 3 month f/u plan by my doctors.   Feel free to reach out any time.  Hang in there. 

Sending (hugs) your way.

Liz

Liz08

Laura-

I sent you an e-mail of an article I posted a while back on one of the forums.  It talks about prognosis.

Take care,

Liz

amyob

Hi Laura,

 I am the one Liz was referring to in her note.  I, like you, had a bilateral mastectomy after they found a large area of DCIS in my right breast.  My pathology report showed a 1 mm area of IDC.  I was fortunate to find Liz and I hope it helps you the same, to find people in the same shoes.  I am ER and PR slightly positive, but not enough to merit taking Tamoxifen.  Dr. Kathy Miller, who is actually on the advisory board for breastcancer.org, is my oncologist.  She said that several large pathology series have suggested that the patients with focal microinvasion diagnosed as an area of invasive disease of 1 mm or less have a prognosis identical to those patients with pure DCIS.  She said that with the bilateral mastectomy, and such a low risk of distant disease, the likelihood of significant toxicity from any attempts at systemic therapy would outweigh any potential benefit.  I hope this helps

 Amy      

laura347

Hi there Liz, I have been checking daily for your reply...I don't know what it is, but to know someone was asking the same questions and getting similar answers is somewhat of a comfort to me! I am just beginning my journey and I beleive that others ahead of me are paving the way and are a definite help. Again I do apprecite your reply, glad you found me.Will you please keep me posted on your situation from time to time? I will do the same.

Thanks again, Laura

laura347

Hi Amy, you must have been posting while I was!! Well here we are in this awesome group of women. Yes I do appreciate the support in knowing I am not the only one. I did learn about a trial going on at Dana Farber, eric Winer heading it up...in regards to Herceptin and chemo for tumors less than one centimeter...I guess I keep thinking 5 years from now the recommendations will be different...do you know what I mean or  should I simply not go there??

cannot tell you how I need this supprt now

Lauraxoxo

amyob

Hi Laura,

I really can't describe how it makes me feel to realize how much we all can help each other through this.  I was in your shoes just last month and have finally made peace with my decision.  When was your surgery?  Was your microinvasion a single focus or multifocal?  You said less than 10 cells, but I'm not sure I understand.  The trial going on may be for <1cm, but most studies consider microinvasion in a class by itself, with prognosis identical to DCIS.  It's not going to help you to think five years from now in any circumstance.  We should feel comfortable that there is enough scientific evidence to support our treatment decision here and now.  Hang in there, Laura.  It does get easier....with a little help from your friends.

xoxo

Amy              

laura347

Hi Amy, okay my path read,"single, solitary focus of microinvasive breast carcinoma, grade 2, consisting of rare tumor cells(less than 10 cells) in periductal stroma, invading to depth of 0.3mm. what do you think?? my surgery was dec 30th, had to deal with xmas and all with kids...gross. my mom had breast cancer same time as me...weird. And I, like you, realllly want to make peace with this... i am working on it ! Also alot of people have talked about how brave I was to have double mast...but really I never felt brave at all, just motivated. What do you think of this path...I believe I am understanding it but maybe not?!

laura

amyob

I'm not sure what to make of the details of that path report, but it does say single focus microinvasion, so that means 1 mm or less which is great!  Dec. 30th was the day I went to Indiannapolis for my appointment with Dr. Kathy Miller and made my final decision, "no further treatment."  I got the same opinion from John Hopkins.  The mastectomy decision was easy for me, too.  My mom also had breast cancer just last year.  But deciding on treatment was the hardest thing I've ever done.  It took me 3 months to make peace with this.  Before that I did nothing but research and weigh options.  I'm sorry you had to go through the waiting at Christmastime.  I found out on my husband's birthday.  I guess there's no such thing as a good time for these things to happen.  I also have kids, 12 and 10.  Did you do immediate reconstruction?  Hope all this helps a little.  Time for dinner here...

amy 

laura347

Hi Amy,

I try to hang hat on single solitary focus...sounds good to me if you know what I mean! Yes I had immediate reconstruction, I'm doing  the tissue expander thing...going well...did you have it as well?? I had to laugh I heard someone refer to them as " ;foobies " kind of funny! and to be honest was not really hung up on recon...but I decided to go for it...husband would love me if I were a pancake!! It sounds like you have really done your homework, you should feel good about it. I also have 2 boys 13 and 8...awesome! I realize dinner time, almost for me too...when you have time How is your mom..did she have similar treatment...and did they refer to you as t1mi...they did with me

laura

amyob

Hi Laura,

I am also T1mic - 1 mm or less.  My mom is fine now.  She had a lumpectomy, clear margins, no her2neu, very slow-moving cancer.  She had radiation.  Yes, DO hold onto that single focus microinvasion, Laura.  It's a very good prognosis.  I have the tissue expanders, also.  I did have a small problem - after they removed the tubes, some fluid built up and found it's way out the incision.  It took a while to heal, but all is well now.  My implant exchange is in April.  I'm looking forward to losing these expanders!  Glad everything's going well for you.

amy   

laura347

Hi Amy, I think my exchange will be somewhere around yours...will you let me know how you do...I'm sure you will do awesome...sometimes those tubes are really problematic, so my feeling is you will do great...your only allowed ONE problem. Thank you so much for your  time and info...I look forward to hearing from you when you are all finished up yEAHHHHH!! Sending all my good thoughts to you and your family , you go girl!!

your new(unfortunate breast friend)  laura

Liz08

Laura-

Eric Winer from Dana Farber is one the many physicians that reviewed my pathology and felt the risks of chemo/herceptin outweighed the benefits and felt my prognosis is that of DCIS. 

BTW, I'm a mom too...ages 12,8, and a 2 year old. 

It sounds like you and Amy are very much alike so looks like a perfect connection

Laura, it shounds like you are in the NE? I'm in central CT.

may31

 I don't check these boards as frequently as I did in the past but find them so very helpful.

I was diagnosed the first time in 2004 with DCIS ,T1mic, slightly ER+ and had a mastectomy on the one side. My diagnosis was only found after the mammagram and ultrasound were negative and the surgeon did the core biopsy. I had hormonal therapy following surgery. No chemo  was recommended and they didn't test for Her2 back then although I did confer with two oncologists. In 2004 I could find little information regarding microinvasion but, boy do things change in the breast cancer world in a couple of years!

My followup consisted of  a yearly mammagram on the remaining side and MRI which had picked up the original cancer. In 2007 the MRI detected something in the lymph nodes on the same side as my mastectomy. They found 3 cancerous nodes when the surgeon did the dissection. I had been told in 2004 that there was a 1% chance of recurrence.

The treatment was TCH and radiation to the chest wall. I see the radiation oncologist and surgeon yearly and have reduced my visits to the oncologist to 2/year.

It was a big shock but I feel fortunate that it was caught still in the node stage and can't stress the importance of the MRI in detecting the cancer (at least in my situation).

The doctors are human after all and don't have all the answers. I have truly learned that you must be your own advocate and learn as much as possible about your cancer and enjoy life!!

amyob

Hi May,

  I had suspicious micro-calcifications show up on my mammogram and was also diagnosed after the biopsy results came in.  I had an SNB at the time of my bilateral mastectomy.  They removed 2 nodes, which came out clean.  I was just wondering if you had any nodes removed when you had your mastectomy?  Thanks for your input.     

Dejaboo

I was wondering that too May31.

So I went back & Looked at your older posts.

You said in 2007

"May 17, 2007 05:47 am may31 wrote: Yes, he did. He took 6 nodes and they were clear except for one which showed isolated tumor cells that were each less than .2 mm.The oncologist didn't recommend chemo because the statistics showed that chemo would only help by 1-2 %"

That they found isolated Tumor cells that were each less the .2mm in 1 of your nodes.

I think that puts you in a different category?

I dont even consider me to be in this category- I am very close but I am not 1mm I am 1.2 mm

Pam

amyob

Did anyone else have additional examination for isolated tumor cells on their SNB?  Mine shows no regional lymph node metastasis histologically (ie, none greater than 0.2 mm).  hmmmm  Wonder if it's worth having the slides re-examined.

Liz08

May31-

We appreciate you sharing your story and very glad to hear that you're are doing well and are moving on. Moving on is a big part of healing

My concern is of the possibility of confusing the newly diagnosed with your diagnosis and our diagnosis.  

By definition: Microinvasive DCIS(T1mic) is a single focus or a few foci of  Microinvasive tumor up to 1mm ( 0.1 cm) or less in greatest dimension. Node Negative/Clean Node.  This is the lowest stage 1 category.

Below is a brief classification of stage 1:  To be stage 1 you must be node negative.

T1: Tumor 2.0 cm or less in greatest dimension-

T1mic: Microinvasion 0.1 cm or less in greatest dimension
T1a: Tumor more than 0.1 but not more than 0.5 cm in greatest dimension
T1b: Tumor more than 0.5 cm but not more than 1.0 cm in greatest dimension
T1c: Tumor more than 1.0 cm but not more than 2.0 cm in greatest dimension 

We are focusing on the Her2+++ in microinvasive DCIS along with being ER- & PR - since we are such a rare group.

Please lets be carefull and not confuse our newly diagnosed.

Sending (((hugs))).

 

may31

I'm sorry but I did leave out a few other details.

In 2004 I did have 5 sentinel nodes removed and there were isolated cells but neither doctor recommended chemo when I did ask. Since I was slightly estrogen positive I was put on arimidex. I was considered Stage 1 T1 mic (less that 1 mm) NO (i+) MO.

In 2007  I had 7 more nodes removed and I had become ER-PR- HER2 positive. There was no HER2 testing done in May 2004 when I was originallly diagnosed. I believe they started that the following year. I think now the isolated tumors might be addressed with chemo but I am not sure.

I know this link isn't really about recurrence but thought it might be helpful and don't want to upset anybody. My story is rather unusual. The world of breast cancer is changing very quickly and my point is that one must stay on top of the research to advocate for what is best for them.

laura347

okay now I am really confused...can you have someting ever so tiny in your nodes and still be considered T1mi....

Laura