Invasive micropapillary carcinoma
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Hi scaredbunny. Met with my MO this morning. He has been busy consulting other oncologists around country about my case and discussed my case in a multidisciplinary meeting. He said the treatment for invasive micropapillary carcinoma is the same as that of IDC. He said I can have standard treatment which is radiation followed by hormone therapy, or I can start oral chemo Xeloda next week and then radiation followed by hormone therapy. I happily accept the chemo option. But I can't start chemo next week because we already planned two weeks holiday. He is okay that I start chemo on 9th of January, which is still within the 8 week optimal period after surgery. I forgot to ask how long is the chemo course and I don't care about it now. I feel relieved and I can enjoy the holiday from tomorrow.
When will start your radiation therapy? How did you go with your last chemo, any side effects? I hope you are recovering well and ready for the next treatment. Take it easy.
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Hi Beauz, my last chemo was fine. Glad to have it behind me. I have got the markings for radiotherapy with verification on January 2nd and to start Thursday the 4th. 15 sessions plus 5 booster to the scar line. I must ask my oncologist about Xeloda..maybe it would be of benefit to me ! I don't see him again until the end of January. Talk soon and take care.
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Dear ScaredBunny:
Oh yes, my story is real. 10 years this coming fall & still alive with no signs or symptoms of a cancer recurrence. My health plan at the time (I switched to a new plan as of Jan 2018), sent me to this nationally known Oncologist, then affiliated with that plan. His idea. He thought I was some kind of freak of nature for still being alive after 4-5 years after initial diagnosis and treatment -- which I could not complete due to so many life-threatening reactions/side effects. Brutal time. However, the quality of my life is poor; mostly due to raging lymphedema that defies treatment. But cancer recurrence? Nope.
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Hi stellastarr, congratulations on making it to 9+years. I am sorry to hear about your ongoing struggle with raging lymphadema. I hope you will find the right specialist to help with your lymphadema soon. Could you tell me more about your new plan?
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I should have clarified a little better: I switched from a Kaiser health plan to United Health Care -- so I could access Sutter Health in my area. Because! Unlike Kaiser, Sutter recently created a LE Clinic (brand new) at the hospital facility closest to where we live. Kaiser shoved LE treatment into their Phys Therapy department, meaning 1/2 hour appts. Effective LE treatment requires about an hour+, not a pitiful 1/2 hr.
In terms of a treatment plan for the LE via Sutter's LE Clinic, right now it's causing new problems. My latest PT has only been doing LE treatment since last Sept. She has limited collective experience working on real bodies over time. Real bodies don't always respond like the books/class training say they should. Mine sure doesn't! The bandaging by this new PT causes severe pain in my hand. The PT doesn't know why or what to do differently. Thanks to Binney4 from Breastcancer.org, I now have some info to share with my new PT about what to do differently. We'll see.
In terms of my breast cancer, ehh: I haven't seen an Onc for over a year. But! My new Sutter primary care doc ran a ton of blood tests in January and everything looked good. My ca 15.3 test result was even better than it was in 2016. My mammo was fine. You'd think I'd feel safe & secure & confident with such good news, but my initial diagnosis was pretty dire & several Kaiser doctors were sure I'd be dead in a few years. Ha!
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Hi stellastarr, thank you for your reply. I wonder what happened to the small spot on your right lung. Is it being monitored regularly? What kind of test did you have to detect it in your blood stream? Apart from your DD chemo, did your doctor do anything that targeting IMPC and the issue of no clear margins? I am taking Xeloda because I didn't have clear margins. I am surprised you haven't seen your oncologist for over a year. I hope your new primary care doctor will look after you well. I am very happy you survived the dismal diagnosis that still sounds scary even now.
Your lymphadema seems to be in an unusual position. Is it because of your tumor location and a lot of lymph nodes taken from that area? Mine was in between 9 o'clock and 10 o'clock position. I don't have lymphadema at the moment, but I have cording. I found my hospital physio therapist is very helpful. I hope you find the right help soon. I hope I am not asking you too many questions.
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Hi Stellastar,
Thank you for coming back to me and confirming that you are alive and well after such a diagnosis. You give me much hope that I will survive my own diagnosis and continue to be a mother to my two young children. Did you make any special dietary changes ? Any advice on how to beat this disease...??
Regards
Scaredbunny.
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Hi Beauz,
How are you doing?
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I was diagnosed with IDC in June 2018. Received neoadjuvant chemo andthen was diagnosed with IMPC in December 2018 at time of partial mastectomy and SLNB. Just started Kadcyla (Jan 2019).
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Hello IMPC survivors! I learned about this "special" type after my doing own research while undergoing chemo. My pathology report just mentioned 10% micropapillary growth pattern. However, it seemed strange to me that 3/5 sentinel nodes had macro metastases that even though my average Ki-67 was very low. My surgeon was telling me I had a non-agressive cancer, so I opted out of axillary node dissection.
Did you all have ALND? How many additional nodes did you have?
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Hi All,
If anyone has any feedback about my situation please let me know. I am shattered from my pathology report today.
Pathological report after MX says 0.7cm tumor was residual along with 3 sentinel lymph nodes (3mm,2mm,3mm) testing positive. A 2.4 cm DCIS was also removed during MX. The tumor has mix of invasive ductal carcinoma and invasive micro papillary carcinoma. ( My initial biopsy before chemo reported only invasive ductal carcinoma + 2 lymph nodes). BS wants to remove all axillary lymph nodes next.
As of now i have 3 cancers - IDC, invasive papillary carcinoma, DCIS. 3 positive lymph nodes, her2+ve, ER+ve, PR +ve. Can i even be hopeful?
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Neeli, I am so sorry you are in this situation. I am 4.5 years out. When I was diagnosed (2015), all the articles on micropapillary were so frightening. I will never forget the words "poor prognosis". The most recent studies have been so much more hopeful, with even better statistics. Micropapillary has an extremely high chance of local metastasis (to lymph nodes) but the same survival rates as IDC if not a little better. Here is one article that came up when I googled - https://bmccancer.biomedcentral.com/articles/10.1186/s12885-017-3855-7 But there are many more.
Make sure you check the dates of articles you research. The older ones are pretty bleak but as micropapillary is identified more, the research is much more hopeful. Big hugs to you. I remember those days. My best advice is get outside, put on music, breath, exercise, one foot in front of the other and maintain hope for many years with breast cancer history always a part of who you are but not defining your life, time, and energy. Lots of love.
Jenny
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Neeli, I was dxed w invasive micropapillary carcinoma in July of this year and was told it has a more favorable treatment outcome than previously thought. I agree wMarksgirl, be sure to check dates on anything you read as earlier research has some scary information. Hang tight and come here for support
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michelelf & neeli: I was diagnosed with Stage 3C breast cancer: IDC, IMPC, DCIS, and metastatic lymph node cancer! FOUR! On top of that hot mess, 24 out of 24 lymph nodes were cancerous. It was also in my bloodstream, and a small spot in my right lung. My Radiation Onc gave me 2 years before the BC would be back; most likely bone cancer. And yet, here I am, going on 11 years post-diagnosis. I won't lie and say my life is fine. It is not. I had dual dense chemo + radiation and 5.5 years of Aromatase Inhibitors. Plus, I ended up with a horrible infection after my 2nd BC surgery a month after the first surgery that required a Wound Vac strapped to my chest for 3 months. I have raging Lymphedema due to the removal of all those lymph nodes. It has screwed up my life totally. I just never fully recovered from the BC TREATMENT.
My (physical) life is very difficult. But! I am alive. My daughter, an only child whose Daddy died of cancer when she was barely 16, still has a Mother. My Darling Husband still has his zany and funny Wife (and he still sees me as sexy even as I approach my 70th birthday and look 10 months pregnant with twins). My much younger sister, in many ways my first child, still has her Big Sister and my brother still has his closest Friend (me!). And all my friends still have my back as I have theirs. I am the matriarch of our family now and I have responsibilities that require I stay alive. I try to accommodate them. LOL.
I like perusing NIH for medical articles. I found one recently written by Dr. B. Bodai, a doctor I met, and nationally well-known to boot. If you look up the NIH articles, be sure to check the ones they list on the right side of the page of the article you are reading. Lots of good stuff!
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I too was diagnosed with micro invasive micropapillary and papillary in 2013.
Had a recurrence in 2018, radiaition and tamoxifen and no vascular or lymphatic invasion so far.
I also agree, check the dates on what you read. The older material that I read was pretty bleak.
The information out there that is more current seems to offer much more hopeful outcomes now. Stay with the most current information.
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were you treated with chemo for the micropapillary carcinoma?
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