Topic: Invasive Ductal Micropapillary Carcinoma

Oct 29, 2012 02:17PM GeorgiaMom wrote:

Every breast cancer is different and the same is true for micropapillary. I was diagnosed in January with a 1 cm. tumor. It was considered er/pr + and Her2 -, grade 2. There was no LVI and no lymph node involvement. So, although it is considered an aggressive form of cancer, it didn't act that way in me. I had an oncotype score of 20 so I chose to do chemo as a precaution. I survived 4 rounds of chemo with no lasting side effects. It was not fun but certainly manageable. My oncologist, breast surgeon and radiation oncologist were not terribly concerned about the micropapillary diagnosis so I have tried not to worry too much about it either.
Feel free to PM me if you need any more info.

Nov 10, 2012 01:34PM - edited Nov 10, 2012 01:35PM by w6uqfcgomeo

Hi Lifelover and all my new friends:

I have an urgent request.  I need to find a doctor that knows something about Micropapillary Carcinoma.  Please, I will go just about anywhere.  Can't afford to go overseas, but in the US.  I could even have a phone consultation.

If anyone can help please send me an private message.  Thanks in advance....Mary

Nov 12, 2012 03:05AM lifelover wrote:

Hi Mary, sorry I can't help you with a name.  I don't know who you could or should contact.  Perhaps some research would identify an expert.  I will see if I can find someone on the internet but it would be better if you could get a personal recommendation.  Maybe one of the large cancer centers in the USA could help you and give you a referral????

I hope you find something soon.

Hugs to you!

Nov 12, 2012 01:49PM w6uqfcgomeo wrote:

Hi Lifelover:  Thanks for the post.  You had great ideas.  I will call some of the large US places.  The reason it has become a problem is my oncologist was no "ignorant" about this type of bc that he had it confused with a different kind.  When (having been in the medical profession in the past) I brought it to his attention he had to admit he did not know anything about it.  The blind leading......  So.....the reason I want to find someone that knows something about it is to try to make treatment decisions.  It might already be too late, but at least I would feel I had done all I could. 

I think if I can just get the treatment and proper monitoring I could then get on with my life.  With Medicare, if you can't show a "medical necessity for increased monitoring", etc., then you can't get it.  So....with the high recurrance rate I think lymph node checks every 3 months would be mandatory, maybe for a longer period of time, don't know, but at least the first  3 to 5 years.

Oh, almost forgot, without my getting the diagnostic situation problem cleared up, they can't figure out the right type of chemo to use.  That is not just now, but EVER.... With over 100 types of chemo they have to know more information, life the Oncotype DX.  Unfortunately, due to the lab mistake, I could not get it done.   

The hormone receptors (ER,PR) are effective for Invasive Ductal Carcinoma.  Micropapillary is a sub-type.  But, the micropapillary does not have receptors which means that hormone (aromatase inhibitors, etc.,) are NOT effective treatment for it.  Chemo is the answer. 

It can be scarey to think your doctor does not know anything or much about your type of bc.  Anyway, thanks heaps.   Mary

Nov 13, 2012 07:10AM lisadel1 wrote:

HI  and I also agree with you. I asked my oncologist jut yesterday about this question since I have seen this posted  2x here..micropap cancer is receptive to estrogen if you are estrogen receptive...someone is giving out the wrong info...speak to the doctors if this is a concern of yours. I am definately estrogen receptive! Also, if it hasnt got to your nodes its  treated just like all other types of IDC...and even if it has...new studies show it is highly treatable...forget the stats...old and out dated...doctors if good ones is who you should speak too!

Jan 9, 2013 06:15AM Chattyk0216 wrote:

I also have micropapillary carcinoma IDMC. Since I had another type of cancer 8 years ago and nodes removed then, I chose to have double mastectomy. Everything I read says this is a very aggressive cancer, yet they say everything looks clean, no evidence of spread and my ONCO score is low (13) so no chemo recommended, I am only taking Arimidex at present. I worry I am not doing enough, but no one offers anything else.

Apr 4, 2013 10:40PM - edited Apr 5, 2013 10:52AM by OnaWing

I learned of my micro papillary carcinoma diagnosis one week after lumpectomy in mid March. During surgey it was thought nodes were clear however the final pathology came back with micro papillary carcinoma and 2 of 3 nodes positive. Oddly, one of the nodes was an intra mammary node directly under the primary tumor. My surgeon acknowledged he had little experience with IDMC and had seen few positive intra mammary nodes so I went to a nationally recognized cancer clinic for a second opinion. The surgical oncologist there does not see the need for mastectomy or axillary node dissection as she says there is nothing to be gained by dissection and the chances of additional node involvement are approximately 5%. She also thinks there is no need to remove the breast where there were clear margins. Early indications are for Cytoxin and Taxotere followed by radiation to the whole breast and underarm area and hormone therapy, but she says my situation is very unusual so my case went before their tumor board this morning and I am waiting for their call.

Must admit that things are looking pretty gloomy now, even for this eternal optimist but the worst of it is waiting. From everything I'm reading, this may not have a good outcome and I learned just today that the intra mammary involvement signals an ever poorer prognosis. I'm hoping to find someone on this board who has had similar clinical diagnosis and can share their experience, how they decided on treatment, surgery, prognosis, etc.           

May 8, 2013 12:29PM IWKCB wrote:

I had a double mastectomy 3 weeks ago and the results showed IDC with micropapillary features. It was in 3 of 17 lymph nodes removed. I'm staying positive. I know it can be more aggressive but we're throwing everything at it - Chemo, rads, hormonal therapy. I would love to find more info on this type. It seems like it has a very strong tendency to invade the nodes from what I read but I don't know if it causes a greater chance of reoccurrence later.

May 10, 2013 09:31AM - edited May 10, 2013 09:33AM by OnaWing

Hello IWKCB and Lifelover,

Happy to find you both and particularly happy to hear you are doing well Lifelover. I, too am micropapillary IDC with 2 of 3 nodes positive. Typical, I understand of micropapillary carcinoma. I thought about going BMX but surgeons and MOs locally and at the Moffitt Cancer Center in Tampa didn't think it necessary. Didn't have complete node dissection as it was initially thought my nodes were clear. When final pathology came back with 2 of 3 nodes positive, one an intra mammary node, the surgeons and MOs concurred that no further surgery was necessary as it was already determined that chemo and radiation to the entire breast and axillary area was necessary. I will follow with Arimidex as I was strong ER/PR+. So, as you say IWKCB, they are throwing everything at this beast and I plan to be another treatment success story.

Second round of Taxotere/Cytoxan this week. Not pleasant, but doable. Some of the online data on micropapillary is terrifying. After reading much of it and consulting with my doctors, I finally decided that every cancer is unique and that one could only draw conclusions with a complete set of pertinent facts. From all that I can find, and I've researched academic publications extensively, I concluded, and my MO agrees, micropapillary is an aggressive invader of nodes but is treated like any other breast cancer of like stage. You will like hearing, she commented just this week "we are treating you for a cure". It was music on my ears.

The best to you in your treatment. Keep in touch and let us know how you fare.

Nov 12, 2013 10:58AM MagicalMoon wrote:

Hello Lifelover,

I am a newbie here so this is my first post.

Thank you for starting this thread about micropapillary IDC. It has been interesting reading the posts and I am so pleased to find you are still keeping very well two years on. You are definitely an inspiration and fighter.

I was diagnosed with Invasive Ductal Cancer on 3 October 2103 and had a lumpectomy and SLNB surgery on 25 October. Thankfully, no cancer was found in the two sentinel lymph nodes the surgeon removed.

On receiving a copy of my pathology report (7 November), I found out the cancer I had was a 'pure special type' micropapillary (90% special components). My cancer was also ER+ (100% strong), PR+ (70% strong) and HER2 negative after FISH test.

I've found little 'new' information about the sub-type micropapillary IDC. Nevertheless, it was good to find your thread and other ladies who have this sub-type.

Fortunately for me, my breast surgeon gave me very good news on 7 November and told me my treatment plan would be radiotherapy and hormone therapy. No chemo planned. I was so relieved to get clear margins and no sentinel lymph nodes affected.

I am going to see my oncologist tomorrow for the first time and feel better equipped to ask him about micropapillary breast cancer.

If he tells me anything new, I will be sure to come back and let you know.

I've only been on the cancer 'roller coaster' for 5 weeks since diagnosis and it has been a very steep learning curve.

Started taking Tamoxifen yesterday and hoping the side effects are going to be minimal.

Peace and Positivity,

M xxx

Aug 20, 2014 07:43PM jenj56 wrote:

hi everyone, I have invasive ductal carcinoma with micropapillary features -first biopsy - have had a mastectomy with sentinel node biopsy and aux clearance and am waiting on my final path. I can't find many people with this subtype and the info out there is scary. I would like to know how you ladies are doing and whether you had the same chemo etc. I was so excited (strange to be excited about cancer sorry) to find this thread. I am from Perth in West Australia and have messaged Meggs from this thread who seems to be from here too....but no reply yet. Hope you are all going great and hope to hear from you soon!

Aug 24, 2014 11:30PM jenj56 wrote:

hi Survivor48

Hope your surgery went well. I am one week post surgery and battling fluid build up as my drain fell out after 2 days. Please try and keep your drains in..soooo important. Will get my full path on Weds. Will keep you informed as to what my surgeon recommends etc and we will do this journey together. I really do think the treatment is possibly better in the US though as Perth Western Australia is the most isolated city in the world! I am hoping that's not the case haha. Funny I can still laugh. Our subtype is a nasty little thing so we will have to be on our toes. Let me know how you are going. Sending you all the warm wishes and hugs from the other side of the world. You are not alone in this. X

Oct 23, 2014 04:30AM lifelover wrote:

Hi friends,

Apologies for not being on this site for months and months but I am back on it now so that I can offer support to anyone who needs it. I lost my best friend to colon cancer almost a year ago.  She died less than 3 months after diagnosis.  I miss her everyday.  I could not face this board for a long time.  Now I'm stronger emotionally.

In February it will be 4 years since my BC Micropapillary IDC diagnosis and I am still free of disease after surgery and chemo.

I went off tamoxifen for a few months and when I went back on it (and I'm going to stay on it) I had less side effects.

Be positive.  Live strong and healthy and don't get over-stressed.

Love to you all.

Nov 27, 2014 03:05PM leftyloo wrote:

helloooo!

i'm a 40 year old otherwise healthy woman in ontario, and was rather shocked to find i had 75% micro papillary and 25% invasive carcinoma NOS in my right breast, which i had removed in early september... yesterday TC chemo was recommended by my oncologist (after the multigene assay oncotype DX came back in the middle for risk of recurrence).

BUT my doctor only recomended the chemo after i brought my pathology report to his attention again. at the beginning of the appointment, he told me that i was directly in the middle of the risk scale, and that he knew i wasn't too keen on poisoning my body with chemo and it was my choice either way... so i just made sure he remembered what the pathology report said [ie. the type of cancer(s), the vascular invasion (because although the usually lymphatically involved micropapillary cancer did not go to my lymph nodes, it did invade a few blood vessels)] - the doctor then consulted his computer, came back and said, 'on second thought i DO think you should have chemo, to make sure it doesn't get or stay in the blood' !!!

i cannot stress how important it is to keep your doctor on top of your particular case as you see him/her because these people see so many people in a day, it is difficult to keep track of everyone.

Jan 15, 2015 07:46PM Journeygirl wrote:

Hello fellow micropapillary groupies!  I'm new to this blog and appreciate everyone's comments and information and I'm looking for any additional information anyone may have on treatment of this disease.  Just diagnosed in Nov. with 85% mixed invasive micropapillary and 15% ductal.  Had 2 lumpectomy surgeries to remove a 3.2 cm tumor to achieve clear margins and removed 1 sentinel node which was positive for metastatic carcinoma.  This places me in the Stage 2 category.  When I learned that I had a positive lymph node I was certain that I would need chemotherapy, but my surgeon relies heavily on the Onco DX test and stated I still may not need chemo.  I was surprised that the Onco result came back as 9, which would indicate that chemo isn't necessary. I've been searching the internet and find that micropapillary tends to be more aggressive and most often in the lymph nodes, so can treatment mirror what the Onco score advises?   I meet with my oncologist soon to try and come to some resolution, but would really like more data if anyone has some.  I'm completely unsure of what to do which is very stressful for me. 

Thanks for any help,

Journeygirl