Posted on: Apr 23, 2011 08:04AM
lifelover wrote:
I've recently been diagnosed with this rare form of IDC that is more aggressive. It is a mixed form containing ductal and micropapillary components. Although my tumour was (had BMX and reconstruction) only 1.4cm, it has been found in 3 of 7 lymph nodes sampled and is a Grade 3. I've yet to be staged as I need scans to confirm no metastisis to organs or bones.
It seems that this is only a recently identified form of IDC and not to say that it has never existed before. There are few statistics and little information available about it although it has been shown to be aggressive with a high rate of metastisis.
I'm starting FEC-T chemo, 3 sessions FEC and 3 sessions T, beginning 9 May.
Any information I can share, I will, so that future members diagnosed have some information when searching. I'd be grateful for any information from those of you who know something about this.
Posts 61 - 90 (236 total)
Nov 18, 2011 07:50AM Kaara wrote:
Bella...good for you! I'm sorry you have to go through this, but you have a great attitude. I agree, screw the statistics...they are just numbers on a page. The real proof is in those who believe they are going to overcome the challenge...and do.
Dec 23, 2011 05:13AM bella76 wrote:
Sue Yes, I've been having Herceptin with the taxotere, we had to pay for it ourselves because the government only funds it after surgery. We paid for the first 2 cycles and the drug company is funding the other 2 for us thankfully. Very expensive stuff!
Then I'll be having herceptin for a year after my surgery.
2 more Chemo's for me to go! Can't wait..
Jan 26, 2012 08:37PM Darnit wrote:
Newly diagnosed 1/19/12 IDC micropapillary type, grade 2; ER/PR and HER not determined yet.
I had a core breast biopsy at the end of December. I go to my breast clinic with a team meeting re treatment planning on Monday. I'm still looking up all these acronyms. So my question for you ladies if you read this is-what was the order of your treatment-chemo? surgery? radiation? I have read the articles that you mentioned lifelover. I wish there was more out there.
Hope you are all doing okay.
Jan 28, 2012 06:18PM Southamptonmom wrote:
Mine was neoadjuvant which means chemo, surgery, radiation. We're here to help. Hope you get all your quesions answered!
Jan 29, 2012 04:07AM lifelover wrote:
Hi Darnit,
I had surgery first and then started chemo about 8 weeks later. My chemo was delayed because of infection in my donor site after surgery. No radiation as I had my "lifetime maximum dose" 17 years earlier.
I think surgery was first for me because I had some lumps that were unbiopsied. My grade and stage were not determined for me until after surgery. Also, because I had prior cancer (Hodgkin's Lymphoma) and the tissues in my breasts were radiated it was important to get the tissue out and lymph nodes to see what was there.
Mar 11, 2012 03:58AM bella76 wrote:
I had my mastectomy last week and got the results back from pathology, I had a pathological complete response. No cancer found in my breast tissue or nodes.
Woohoo! I'm so happy!!
Mar 11, 2012 04:28AM lifelover wrote:
Congratulations Bella! That is brilliant news!
Apr 21, 2012 12:08PM juliediann wrote:
I was also diagnosed with this rare form of cancer and I was helped by reading your posts while awaiting results. I thought for sure the cancer would be in all my lymph nodes because of the invasive nature of it. My surgeon did some research on Micropapillary and there is heated discussion on whether it is anymore invasive than the garden variety of invasive ductal cancer. She even said that it may be a better prognosis. I had a 2.3 cm tumor that was not seen on my mammogram in December. I found the lump in February. I had 11 lymph nodes taken out and all were negative. Although there were some isolated cells in the sentinenal node. Waiting on treatment options.
Apr 21, 2012 03:42PM lifelover wrote:
Hi Julie,
I hope your treatment goes well whatever you decide to do.
I'm over worrying about the micropapilary cells. I know I'm NED and I'm treasuring the good times.
Apr 25, 2012 02:18AM lifelover wrote:
I'm not sure I should post this as it talks about the poor prognosis of micropapillary cells. If you don't want to read it don't find the link.
If you do, there is a study on the OncologyStat website (you need to become a member to look at the abstract). The study is for thyroid carcinomoas but they state that it has been found that micropapilary cells found in other sites also have a poor prognosis.
Apr 25, 2012 02:22AM lifelover wrote:
Whoops, hit send too quickly.
The study is entitled Micropapillary Pattern in Thyroid Papillary Carcinoma.
May 2, 2012 01:24PM - edited May 2, 2012 01:28PM by Clowngirl
I am recently diagnosed with micropapillary carcinoma. Invasive and infiltrating. I am also triple negative. So, did I buy the load of shit or what?
Double mastectomy coming up on May 10th. I'm scared out of my mind. And I am depressed to hear that the prognosis is poor. Please help me with a bit of hope. I need some hope today.
May 3, 2012 02:33AM lifelover wrote:
Hi Clowngirl (love your picture!),
I'm so sorry you are here with us and I know how you are feeling.
I had my mastectomies prior to chemo also. I felt more hopeful once they cut the cancer out. And then, each chemo I had, helped me to feel more hopeful about killing any bit of stray cells left (I had extensive lymphovascular invasion).
I am over a year now since diagnosis and surgery. I feel amazing. I do dance classes at the gym 4-5 days a week. And I'm NED!
I always have the thought in the back of my head about the "poor" diagnosis. But I don't let it rule my life - instead, I fight back with living my life to enjoy as much of every day as I can.
There is hope for you. Try to keep smiling and laughing and enjoy as many of your days as you possibly can. My life is better now since diagnosis because I don't let things bother me.
I hope your surgery goes well. I found listening to my ipod after surgery in hospital took my focus off of worrying.
Please write to us and let us know how you are doing.
May 13, 2012 02:22AM MaddyMac wrote:
Hi Ladies -
I was diagnosed with Invasive Micropapillary Carcinoma last week. I must say, from what I've found out so far, it sucks mightily.
I don't meet with my surgeon until Wednesday, so I'm busily biting my nails down to the bed. I am told I will be having chemo prior to surgery. Don't even know what surgery precisely yet.
I think I'll have a martini. It can't hurt.
May 13, 2012 05:10AM lifelover wrote:
Hi Maddy,
I'm so sorry you are here. Yes, it sucks. But the one thing I know is that I am living my life to the maximum fullness that I can. I do everything I want to do - even the things I used to be afraid of. And, I don't judge myself so harshly when I make mistakes.
I hope you enjoyed your martini - I had a pint of beer last night and it didn't hurt ;)
Please let us know how you are doing Maddy, and have a list of questions ready for your surgeon. There is loads of information on this site about the different types of surgery.
May 14, 2012 08:38AM Clowngirl wrote:
I am home from my bilateral mastectomy. Exhausted. I had an emotional melt down in the hospital. Sobbing uncontrollably. My lymph nodes were clear. I am also triple negative as well as micropapillary. I'm glad the breasts are gone. I find the new path reports on Friday. Trying to stay calm. But dealing with depression and anxiety is the worst. I need some positive feedback. My sister died 12 years ago from BC and it's like a movie running in my head. Lifelover, I appreciate you input and that you are doing so well. BTW, what does "NED" mean?
Sally
May 14, 2012 12:54PM MaddyMac wrote:
Hey Clownsister Sally -
I'm so sorry about all your trauma. it's a good thing to allow yourself to sob. There's real grief, and it must be felt and acknowledged.
I don't have any wisdom to offer about IMPC, cause I'm just learning about it myself. I see my surgeon on Wednesday, so I'm right behind you on this journey. I do know, though, that we can share our strength.
NED means "no evidence of disease." Yay, Lifelover!!!!! And thank you, Lifelover, for your calm, kind presence.
May 14, 2012 09:33PM - edited May 14, 2012 09:36PM by GeorgiaMom
MaddyMac and ClownGirl - so sorry to hear of your diagnosis. I've never posted here before but wanted to offer you some encouragement. I was diagnosed with invasive micropapillary carcinoma in January 2012. I was terrified at first but have since learned that it is not always a poor diagnosis. My tumor was 1 cm, grade 2 with no lymph node involvement - stage 1. I have just finished my last round of chemo. It is not a cake walk, but it is manageable. Try to take a deep breath and give yourself a chance to absorb it all. It is good to be informed but try not to let "Dr. Google" terrify you.
My prayers will be with you. Feel free to message me if you need to talk to someone. Hang in there - it does get easier!
Jeanne
May 19, 2012 05:39PM - edited May 19, 2012 05:39PM by MaddyMac
Hey Clowngirl, How are things going? I hope you're feeling better.
May 20, 2012 06:46AM lifelover wrote:
Yeah Clowngirl, how are things going for you?
And you Maddy - how are you feeling?
Any others out there? Let us know how you are and what's happening.
I'm having a bit of a scare with possible mouth cancer and am having a biopsy the beginning of June. I'm just waiting for the date and trying not to "google".
May 20, 2012 02:33PM MaddyMac wrote:
Oh my gosh, I'm sorry to hear about that LL. There's an old Tom Petty song that came to mind when I was waiting for test results a few weeks back: "the waiting is the hardest part, every day you get one more yard, you take it on faith, you take it to heart, yeah the waiting is the hardest part." OK, it's ONE of the hardest parts. I am keeping you in my thoughts.
I'm doing OK-ish. Learned on Thursday that I will have mastectomy + chemo. I adore my surgeon, who is smart, capable and kind. she's also very tall and pretty, so I envy her a bit :). However, I LOATHE the oncologist. One of those odd instant dislikes that are based on nothing you can figure out.
So now I'm waiting to find out when surgery will be. . .
May 29, 2012 05:00PM MaddyMac wrote:
Hello? Am I all alone on this thread?
All I can hear are the crickets and the whistle of some lonely train. .
LL, are you OK? Hope so.
May 30, 2012 04:08AM lifelover wrote:
Hi Maddy,
I'm here on some days . . . I have been spending so much time in my garden and at the gym and doing loads of joyful things :)
I'm still in quite a bit of pain (neuropathy), worse lately because I've been changing my medication but I just keep going and smiling. Keeping busy helps.
Do you have a date for your surgery yet?
May 30, 2012 01:23PM MaddyMac wrote:
Hi LL, glad to see you and know you are doing as well as can be hoped for. Thanks for responding.
We have something else in common: I've had peripheral neuropathy since 1999. It's got nothing to do with chemo. In fact, my docs have no idea what caused it, even after having done genetic testing and a nerve biopsy. I've had to take opiates for the past ten years, which rather sucks. I hope yours is not too painful.
No surgery date yet, but my doc told me yesterday she thinks that it's stage 3, which scares the bejeebers out of me. It's up to me whether to try lumpectomy or go straight to mastectomy, and I am to make my choice by Friday. Pretty banjaxed by the whole thing.
Keep on doing the joyful stuff. I love to walk my beloved border collie, and I'm writing a short story, but gardening sounds good too. Maybe I'll go buy some flowers and see if I can keep from accidentally murdering them. I am NOT a natural grower of green things.
- MM
Jun 2, 2012 02:53AM lifelover wrote:
Hi Maddy,
Peripheral neuropathy runs in my family so I guess the taxotere chemo triggered it to blossom. Have you tried a drug called Normast? I just read about it on another thread in this forum.
I want to stay away from opiates, if possible. It may not be. Time will tell. Hoping this Neurotin works for me eventually.
You've got a difficult decision. One that I faced. BMX was my choice although I could have had a lumpectomy. They will know more about your staging once the pathology comes back after your surgery. You could always have a mastectomy at a later date. The lumpectomy will get the tumour out for examining and you can deal with things one step at at time. Just a thought.
I love border collies but they are hard work aren't they :) ??
You know, I never was good with flowers and planting. I've only taught myself since my diagnosis. I'm not too bad at it. The best part is watching the pretty colours bloom.
I'm also learning to sew. My machine was delivered earlier this week. Today is my day (partner Dave is out all day) to do some beginner stitches. I would love to be able to make my own skirts that fit me properly.
Hope you have a great weekend.
Jul 1, 2012 03:32PM - edited Jul 1, 2012 03:33PM by Alicethecat
Hello ladies
I've just seen my pathology report and it says that I had DCIS and IDC with the same features - solid, clinging, micropapillary - and it was also HER2+ and grade 3.
Since then I have had a mastectomy and am having round six of eight rounds of chemo tomorrow.
From what I've read re the links posted on this forum and my own reading it sounds as if the oncologists are undecided as to whether this means a worse, better or the same prognosis as just IDC.
By the way, the DCIS and the tumour showed no signs of vascular, blood or lymph invasion.
Best wishes
Alice
Jul 2, 2012 02:30AM lifelover wrote:
Hi Alice,
I hope your chemo isn't too exhausting for you and you're able to get the rest you need.
I haven't had enough personal contact with "micropapillary" patients and started this thread hoping to hear from others.
I've been doing pretty well since my BMX and chemo. I did have a biopsy on a suspicious white patch on my tongue last week and am getting the results this week. I feel so well I can't imagine it's cancerous but better to be "safe" and have these things checked out.
Please let us know of any new information you find on "micropapillary" BC.
Jul 3, 2012 03:43PM Alicethecat wrote:
Hi Lifelover and ladies
Great to make contact with you! I'm an optimist, so I will certainly post anything I come across that will give us hope.
Have not discussed micropapillary features with my oncologist yet but my guess is that he will take the view that it is no better or worse than normal IDC.
The docs I have met in the Uk have tended to be very sanguine about breast cancer, tending to see it as something they can treat as a chronic disease if things spread.
Good luck to us all!
Alice
Jul 5, 2012 02:44AM lifelover wrote:
Hi Alice,
I feel so fortunate to have the care I get at my hospital here in England and with my oncologist. He is always positive - and says "we'll worry about that when the time comes" which is a great mantra to repeat to myself.
I also take part in group counselling at the hospital for peripheral neuropathy and a training session (7 weeks) for moving on after cancer diagnosis and treatment. And, I'm aso given counselling. Oh yes, also complementary therapies (such as aromatherapy) for relaxation. All recommended by my oncologist and covered under the NHS assisted by Macmillan Cancer Care (I believe).
Being positive and living each day as it comes has helped me but I've learned to allow myself some grieving moments as well. I had been holding in too much anger that needed to be expressed. Expressed in a positive way such as talking things out with family and friends.
Jul 6, 2012 04:17PM trinal wrote:
I, too, have this kind of cancer. I'm 39 and my first scans 5/18/12 showed the tumor to be about 1.35 x 1.25 cm, but when I had a lumpectomy 6/18/12 it had grown to 2.4 x 2.5 cm with 1 positive margin and 2 close margins, so I am going back for a BMX with recon 7/9/12. I also had 1 out of 3 nodes + with just a micromets which my BS was "ecstatic" about because this kind of cancer loves to mets, so we caught it early. PET and breast MRI were all negative. I will be having chemo in about a month. Just wanted to say hi and I hate that we are all here.