Invasive micropapillary carcinoma
I haven't checked in for a while just wondering if there are any others with a similar diagnosis or if there are any resources or information you could share with me.
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Hello,
My 50 yo mom had clear and bloody discharge from her left breast, and went in for a mammogram, then a 3D ultrasound, but nothing was seen until she had an MRI. They saw 3 2cm masses, and performed a biopsy that came back with secretory-like findings. Originally, her doctor said it was stage 1, grade 2 and triple neg. He said she had a very good outlook and wouldn't need chemo or radiation, only a lumpectomy. Then he came back and said she would need chemo, and came back again 2 weeks later saying she wouldn't. She just had a double mastectomy 2 days ago. After the surgery, her surgeon came out and said they got all of the cancer and that her outlook with secretory was good. The pathology report just came back today saying that she had 2 tumors in the left breast. One was 0.6 cm and the other was 6 cm. The report says the pathologist found DCIS, cribriform and micro papillary, and secretory types. It also says she is stage 3, and her doctor says she will need radiation or chemo. What I don't understand is how 5 months ago there was nothing on a mammogram, she only had 2 cm masses, was stage 1, and wasn't going to need chemo. Now she has a 6 cm mass, is stage 3 and probably needs chemo. How could they have missed a 6 cm mass? How did it take her doctors 5 months to figure out what was wrong with her? I feel like they have no idea what they are doing, and I need to find her a doctor that has treated invasive secretory carcinoma before. I'll take her anywhere. I don't care if we have to travel to the other side of the country. Any suggestions?
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Invasive Micropapillary Breast Cancer (IMPC) is distinct variant of Invasive Ductal Carcinoma which tends to early metastasize to lymphatic system; similar to other "micropapillary carcinomas" in other organs (bladder, lung, stomach, salivary gland). Its molecular profile resemble luminal B (HER-2 "-" or "+") IDC NST. So it's usually ER/PR positive and HER-2 negative/positive, but it's also often Grade 3 and high score of Ki67. Sometimes, but less often has Luminal A-like profile or "real" HER-2 profile (ER and PR absent, HER-2 pos.). TN cases are quite rare but it doesn't exhibit Basal 1/2 molecular profile. IMPC is typical admixed with ordinary IDC or sometimes with Mucinous Carcinoma, and like other ER-positive carcinomas often coexists with DCIS (micropapillary or cribriform with necrosis are typical morphology). Prognosis is similar to IDC NST when matched stage for stage (IMPC is often diagnosed in later stages, because its lymphotropic nature).
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I am new to the forum, I was diagnosed with Invasive micropapillary carcinoma in April 2015, oestrogen positive. I underwent a lumpectomy, DC chemo and radiotherapy. Twelve months later a CT scan showed that the cancer had returned in the Lymph nodes..It had gone from been oestrogen positive to negative. I had all the nodes removed and currently undergoing AC chemo, will also go through another 15 days of radiotherapy. Really looking forward to hearing from anyone who has managed to control and remove this type of Breast Cancer, or any information that could help me fight this.
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I am new to the forum, I was diagnosed with Invasive micropapillary carcinoma in April 2015, oestrogen positive. I underwent a lumpectomy, DC chemo and radiotherapy. Twelve months later a CT scan showed that the cancer had returned in the Lymph nodes..It had gone from been oestrogen positive to negative. I had all the nodes removed and currently undergoing AC chemo, will also go through another 15 days of radiotherapy. Really looking forward to hearing from anyone who has managed to control and remove this type of Breast Cancer, or any information that could help me fight this.
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Dear Chersstory,
We want to send a warm welcome your way. We know it's not the place anyone wants to find themselves but we're all here to support one another.
May we suggest that you also visit the forum in the link below where members are also discussing Invasive micropapillary carcinoma.
Wishing you all the best and a speedy recovery.
The Moderators.
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chersstory,
Hey there! I was dx with micropapillary in Nov 2015. I had a single mastectomy 8/9 nodes were positive, (I was also pregnant at the time), I did 16 rounds of chemo and currently in the middle of radiation treatments.
Everything has been pretty smooth sailing, I get acupuncture weekly to manage side effects and I'm also under the care of a naturopath. Let me know if you have any other questions
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Wow, that sounds so positive. 18 rounds of chemo!! It's incredible you managed that. I did four rounds of DC the first time... Currently doing another four rounds this round. I find it difficult. All nodes were infected... But it is no where else. I was under an alternative Dr (after I finished my treatment last year) had been doing intravenous vit C, brought in yoghurt from Germany, along with rerum. Had done lymphatic drainage, yoga, picked up painting. That is what has been upsetting, it didn't even slow it down. This time I don't know what I can do to help my body. Great to hear from you. Thank you, it sounds so positive.
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what's DC? Or did you mean AC? I did 4 AC and 12 taxol. The AC sucked, I did 2 while pregnant. The taxol was kind of a breeze...not fun but not like AC!
Oh man that's crazy...I'm doing everything the doctors recommend plus working with a naturopath and acupuncturist. His name is Dave Frahm, he's on fb and has some really good books on fighting cancer. His wife had breast cancer as well. I highly recommend reaching out to him and following his suggestions. They aren't outlandish like the things I've read! I hope you are successful during your treatments and if you need anything don't hesitate to ask. I'll be honest, after chemo I did a 10 day fast with coffee enemas (gross I know) but after I completed it my energy level is back to what it was pre chemo. I feel amazing. I wish you well
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I was also diagnosed with invasive micropapillary in one of my tumors but thankfully the tumor was very small, only .2cm and it never showed up on any of the mamos, US or MRI's. I had 3 tumors, the other 2 were just IDC but I also had extensive DCIS that had micropapillary cells so they said I had to have a mastectomy. They found the IMPC when they did the mastectomy in August 2015. So I guess if I could have had a lumpectomy, they never would have found this until it had spread to my lymph nodes. I was very lucky indeed. But I still worry because they said they couldn't do the oncotype test because of the size of the tumors (the other 2 were only .4cm) so I have no idea what the chances are it will recur. I pray you all do well because it is a scary diagnose.
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Hi everyone!
Im new to this forum. After searching about mucinous carcinomia with micropapillang feature I ended up here and it seems good place to be...
My sister got diagonized with this and she is in Seoul, South Korea. She had a surgery a week ago, they removed 2 tumor from her right breast and around 10 lymph nodes from her arm pit. And test came back wih micropapillang feature.
Her doctor said that she won't need mastectomy. She will have 6 cycles f TAC chemo followed by 33 radiation.
We have no idea how aggressive this type is and what's survival rate.
Any info will be helpful for us. Thanks!
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I am going on 9 years this coming fall since my Stage 3C diagnosis: IDC, IMPC, and metastasis of the lymph nodes. 24/24 nodes were positive. In my bloodstream and a small spot on my right lung. All in all, considered a dismal diagnosis. Even with aggressive treatment (that nearly killed me!), I wasn't expected to make it beyond 3 years, especially because of the IMPC. Back in 2008-09, I could find little info about IMPC. I am so pleased about how much is known now.
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Hi Gohan
I only found out today that my tumour had a micropapillary patern. I have spent the day crying as I thought I might have some chance of beating this disease. I had all the features of micropapillary skin retraction and 2 positive lymph nodes ( micromets in both ). I was diagnosed 16 months ago and just found out this today when I read my pathology report. I have huge mixed reports, some say 50% mortality.
Sabina
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Hi. Just wondering how you are doing now? I had 7 lymph nodes affected by cancer and my tumor was large. Looking for support
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I had 8/9 positive nodes, and 8cm tumor Grade 3. I'm at 2 years since diagnosis. Doing well, healthy as I can be! Hopefully it will stay that way.
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9 years!!!! Wow!! That's amazing to hear!!
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don't read anything about mortality. That's the worst place to start. You are here now, do what you need to do to be healthy and live life the best you can. We are all going to die some day, but if you believe those studies and reports you will make it true. My doctor said a lot of negative things in the beginning and I'm still here, no cancer, getting back to normal life. You willl get through this
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Hi Memily9. Thank you for getting back to me. Yes all the doctors are saying is negative and very worried. I"m 41 with two small children and struggling to come to terms with my diagnosis and constant fear of not being here for my children. I'might delighted you are doing well. You give me great hope. Continued health to you. What age are you if I can ask ? Thanks
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what treatment did you have ? Just am doing 4 AC and 4 Taxol followed by 15 sessions of radiation and 5 booster to the scar line. Then Tamoxifen and trial drug Ibrance. ..
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no problem. I was 32 and pregnant when diagnosed. I'm 35 now. I did 4 AC and 12 taxol. I did 28 radiation sessions. I've been on lupron and an AI (hormone blocker) for a littleness over a year. I'm also finishing up a trial of envirilmus (sp?)
I'm not sure if you're on Facebook, but if you are I can add you to a wonderful group of women diagnosed with breast cancer. Let me know.
You will get through this. Stay positive, stay active. I highly recommend adding some alternative treatments to your routine (acupuncture, herbs find a naturopathic oncologist). It's going to be ok
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Hi Stell a star. Your story is amazing and is it actually true? I cry a lot these days as my cancer is IMPC and extensive as I feel I won't be here for my children. Your story gives me unbelievable hope. My oncologist told me i"m at high risk of reoccurrence.
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HI Emily. Do you recall if on your pathology report mentioned anything about extensive lymphovascular invasion? I have that due to nature of IMPC. Do you know anyone else with similar diagnosis to us ?
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I’m not sure what “extensive” would mean exactly. I had 8 nodes positive. I can’t rememebr if I’ve met anyone similar to me. If you send me your diagnosis I can get you added to the Booby buddies and you might find a few there. It’s an a large group.
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Scaredbunny- in my post surgery pathology report, it says " the deep muscle is extensively involved by directly invasive carcinoma and lymphovascular invasion." I was diagnosed IDC by biopsy. After surgery, it becomes "invasive carcinoma of mixed type. Mixed of no special type(60%) and micropapillary type(40%), associated with high grad duct carcinoma in-situ of solid and cribriform type." I hope you take it easy. Being scared and worries are normal reactions, but they don't help at all with treatments.
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Hi Beauz. Thx for coming back to me. I just finished chemo today and while i"m delighted to be finished my fear of this cancer returning is immense. My oncologist said I was high risk and that they are concerned about me. I can't get this out of my head and I am very stressed. Did you have any lymph node involvement ? Ever since the pathology report came back things went from bad to worse. Ate you for radiotherapy? Did your oncologist ever discuss reoccurrence with you? Thank you
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Hi Memily9, I just finished chemo today. I hope it caught all the stray cancer cells....
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Hi all.
Scaredbunny- your oncologist seems to have a lot of experience because he paid more attention to your case. I wish you trusted him more instead of overwhelmed by the attention. My cancer was known as IDC until after surgery which was two weeks ago. Lymph nodes involvement was known before chemo. After chemo and surgery, 3/15 lymph nodes tested positive. My oncologist has never discussed about recurrence or prognosis , I never asked either. Sometimes knowing less is better. He told me at the beginning I will have radiations. He wants to present my case to a multidisciplinary meeting (next Tuesday) to discuss my post surgery pathology results. Hopefully I will see him sometime next week. I am glad you finished with chemo. There is another thread here called "invasive ductal micropapillary carcinoma". You may find more information from there. I don't know the difference, but i am as confused as you are.
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Hi all.
Scaredbunny- your oncologist seems to have a lot of experience because he paid more attention to your case. I wish you trusted him more instead of overwhelmed by the attention. My cancer was known as IDC until after surgery which was two weeks ago. Lymph nodes involvement was known before chemo. After chemo and surgery, 3/15 lymph nodes tested positive. My oncologist has never discussed about recurrence or prognosis , I never asked either. Sometimes knowing less is better. He told me at the beginning I will have radiations. He wants to present my case to a multidisciplinary meeting (next Tuesday) to discuss my post surgery pathology results. Hopefully I will see him sometime next week. I am glad you finished with chemo. There is another thread here called "invasive ductal micropapillary carcinoma". You may find more information from there. I don't know the difference, but i am as confused as you are.
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Hi Beauz. Just wondering how the meeting with your surgeon went after the meeting with the multidisciplinary team? Hope you are keeping well.
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Hi scaredbunny. Thanks for thinking of me. Unfortunately my case didn't get mentioned at the meeting for whatever reasons. I have an appointment with my MO this Thursday. My surgeon said he had consulted with my oncologist and radiologist about my case. My oncologist doesn't seem to be in any hurry. I saw you going to have Ibrance. That's good! I wouldn't mind having more chemo like Ibrance, or Xeloda. I am concentrating on healing from the surgery so I can be ready for radiation. We have to do all we can, including not being scared too often, to survive. Take it easy. I will keep you informed.
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Hi Beauz. Thanks for letting me know and good lucknowledge. Talk soon.
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