Welcome to our Metaplastic Breast Cancer Forum! Say Hi Below...
MpBCAdmin_Laura here.... this is my first post 
Comments
-
It has been a few years since I have been in the forum. I have a PET scan showing possible bone mets and other areas. Waiting for 2 more tests and a biopsy. Hoping to connect with others out there on this journey. I had chemo in 2009 and double mastectomies with implants.
0 -
Hi! It’s been quite a while since your treatments, so I hope what they saw on the PET scan turns out to be nothing major. Sending you positive thoughts and wishes for good results from your tests and biopsy.
Are you on Facebook? There are a few fairly active metaplastic breast cancer Facebook groups out there, if you want to join. I find those groups are much more active than this forum. I’m hoping we start seeing more people with MpBC on this forum, now that we have it.
I belong to 3 Facebook groups, if you’re interested in finding others who are in the same or similar situation as you.
https://www.facebook.com/groups/metaplasticBCresearch which provides information and support for MpBc women and those who support them.
https://www.facebook.com/groups/metaplasticbc which provides information and support for MpBC women only.
https://www.facebook.com/metaplasticbreastcancerglobal/ which also provides information and support for MpBC women and those who support them but focuses more on research as it is run by the Metaplastic Breast Cancer Global Alliance.
A number of people are in all 3 groups, and there are other MpBC groups out there, too, but these 3 seem to be the biggest.We're also going to try to get more of the women from the Facebook groups to start following this forum, too.
Jen
0 -
Hi Jen and pink. Please forgive me for butting in. I often look at recent posts to see if I can be of help to anyone, and I could not help but notice that pink’s diagnosis line says IDC. It made me wonder if perhaps pink misread “metaplastic” as “metastatic” and ended up posting in a forum that does not apply to her. It could get confusing...
0 -
ShetlandPony,
Re-reading her post, it is quite possible pink meant to post in a metastatic forum, not a metaplastic forum. Because metaplastic breast cancer is not very well known, people often ask if we mean metastatic when we say metaplastic. Hopefully pink will find the group and support she's looking for.
Jen
0 -
Hello
new to the group, stage 40 -
Hi, Tigger61! Welcome to the forum. I love your user name.
I don't know if you are on Facebook, but there are a few metaplastic breast cancer Facebook groups that are fairly active, if you're interested. I'm stage 1, but there are a number of stage 4 women in the 3 Facebook groups I belong to.
https://www.facebook.com/groups/metaplasticBCresearch which provides information and support for MpBc women and those who support them.
https://www.facebook.com/groups/metaplasticbc which provides information and support for MpBC women only.
https://www.facebook.com/metaplasticbreastcancerglobal/ which also provides information and support for MpBC women and those who support them but focuses more on research as it is run by the Metaplastic Breast Cancer Global Alliance.
There is overlap between the 3 groups, and there are other MpBC groups out there, but these 3 seem to be the biggest.
If you're not on Facebook and don't want to be, if you have any questions or are looking for information that no one on here can provide, I can act as a go-between between this group and the Facebook groups.
Jen
0 -
Hello Tiger61,
Welcome to the group. I have a profound dislike of Facebook and much prefer the support offered here on the breastcancer.org website. I have posted on the triple negative thread for people in the UK most of the time since my diagnosis two years ago. I'm the only metaplastic poster there, but as I'm also triple negative, I find that much of the information offered is relevant. Most of us on the thread do not live in the UK! So really anyone is welcome. The metaplastic thread, which is quite new, has some very useful research (provided by Jen) specific to metaplastic breast cancer, which is probably what you are looking for if you are newly diagnosed.
I've made my diagnosis available as it's often quite useful to others. There was no space to include my subtype which is spindle cell mixed with adenosquamous. I was never given that information by my breast surgeon and had to ask for my pathology report to find the full diagnosis. If you haven't already done so, it's worth getting hold of your pathology report for future reference if needed. My surgeon knew nothing about metaplastic breast cancer and whilst I had friends and acquaintances with breast cancer, I was on my own with this diagnoses. I felt quite isolated in the beginning and forums like this really helped.
I hope you'll come back soon and tell us more about what's happening and how you are coping.
Very best wishes,
Gill
0 -
My first time here. I was stage III for almost 10 years. 12-4-2020 my daughter’s bday I was DX with a mass in the lining of my uterus. So here I am. I’ve been on Ibrance since December 12 th and the tumor decreased in sizes and I have acites which has gone down too. My next scans are in June. I have no side effects started going to the gym because my son is getting married in September and I need to look hot. Lol. Thanks
0 -
Welcome, 3830341np! We're glad you've joined our community and shared a bit about yourself, we hope this can be a source of support for you.
The Mods
0 -
Hello 3830341np,
I'm sorry to hear that your breast cancer has spread to the lining of your uterus. However, your treatment seems to be going well and you sound as though everything's under control. Good luck with the scans next month. I'm wondering if you have metaplastic cancer or may be here having thought the thread was for for metastatic cancer. Very easy to confuse the two.
Best wishes,
Gill
0 -
It is metastatic. Thanks for the kind words.
0 -
Hi Everyone,
Hi guys
I am 2 years in!I am a Mplastic BC patient. I have MpBC. Well, I had it. And I guess I may still. But so could anyone really. Anyway, I'm not quite out of the woods yet. I am two years in. So three to go. Although if I recall correctly, there is a significant amount of evidence that suggests 18 months as the peak reoccurrence time and a total reoccurrence window closer to 3 years, rather than 5 for MpBC specifically. I'm in the right place, right? Is anyone keeping up on the research? I went deep into it 2 years and 2 months ago, but then I had to get back to my physics. I am a physicist. An astrophysicist actually, an astronomer. In general, I post in the TN thread when I post because well I am triple negative too of course and that thread has more people!
Well here I am, it is summer and Universities are on break for a few weeks and I want to throw my hat in the ring, so you have more people. I don't do Facebook. But I respect everyone's right to do so.
Ever vigilant. Anyone keeping up on things? Because there's so little to do for Plastic and so little news about it I tend to not keep up. I should try and get a news alert or something. Then they'd probably just change the name, which they should actually, with all the metastatic confusion. My surgeon has been my rockstar. She's awesome! A surgeon is a mPlastic patient's best friend! Right? She pushes through all the scans, shortens wait times, reviews all surveillance scans herself. She knows about the subtype and she stays informed.
My MO was pretty pointless. All of them were actually. I had maybe 5. I liked one of them but then she retired! The survivor-ship lady was uninformed too!
The radiation guy was at a different hospital and was just so happy with himself. Kept calling himself the guy with the gun, and basically just always running late for appointments. He liked to draw pictures and he was of the mind that each breast was a separate organ and any reoccurrence in Breast number two would be metastatic. I informed him that no that's not the case. Tried to use the unibrow analogy and of course, just telling him he was wrong, but he was the guy with the gun he said so I just gave up. Why we were arguing about this as I only ever had the one breast affected I don't actually know!
The best was the UCSF specialist I went to for their 2nd opinion tumor clinic and my Surgeon!
Anyway. Hi guys! Just wanted to post because well I hadn't yet! The emotion meter in the lower right corner looks like the guy from Edvard Munch's "the scream". Let me see if I can cheer him up! Happy happy! .Unicorns! Rainbows!
Well, he's still really upset down there in the corner. ❤️❤️❤️❤️❤️ Ok, I figured out how to turn that emotion meter off! I think it was Grammarly or something. Ah well! It said it thought I sounded worried or stressed. I am neither! Thanks again. Thanks for the work it takes to maintain this thread, which seems underpopulated indeed! Although I wouldn't wish admission to this club on anyone!
Anyway, it's another day in paradise for me! I mean there's nothing good about cancer or poor health in general, but I guess I can say that at the very least glad to have been reminded I am mortal after all! I try to find silver linings in everything. It's my superpower. So to close, live on and strong, stay vigilant, and keep the faith!😌
-Frack
0 -
Hi, Frack!
It's been a little over 3 years since my diagnosis, but I haven't been keeping up on the research. I stopped going on Facebook regularly last fall, and I know I am more out of the loop than I used to be because of that. But I think your numbers re: recurrence are correct, though, from what I've seen and heard.
I feel like I've been one of the fortunate ones because 3 years out, the whole cancer thing is becoming more of a dim memory for me. Other than a little numbness in my fingertips and no fingerprints, I have no residual side effects from chemo or radiation. I'm pretty much living my normal life (aside from this whole pandemic year), and life is good.
Thanks for checking in.
Jen0 -
Hi there Jen,
Wow! That explains it. I had to get fingerprinted twice last year (livescan not jail - not jail yet anyway!) as a teacher and the first place had a really hard time with my fingerprints and I did not know why! The second-place said they had this awesome new electronic thing and it did work well. Funny that! I thought it was all the hot sake bottles I carried around working my way through college slinging sushi in my 20's.
I have breast pain still but they think it's maybe the Fat Graft combined with the Radiation. Its created necrosis in the breast fat. little pockets that eventually stop hurting until another pops up. Nothing Advil doesn't help with. I have a handful I guess at any one time. And then my other breast kicks in to keep things evened out. So I do end up going in for a very hard lump with pain every three months or so. And they scan it and they say, please keep coming in, they need to be checked, but this one is good to go. Of course, the real concern would be distal recurrence right? No way to scan for those asymptomatically. So, one more year! Nine months really!
Thanks for responding. It's a good service you do here. It's good to not see too many people. That's how we want it right? This means it's not increasing in occurrence although I can't help thinking that as they catch more cancers early on with mammograms, these fast-growing tumors will become a larger percentage of the parge tumors because they can grow unnoticed between mammograms. I felt mine in the shower, 19 months after my last mammogram. Kaiser is down to every two years for the general public which I am against. Because now with OBGYN paps happening only every 3 years I think women aren't getting the yearly breast exams either.
Anyway, good to meet you. I hope I get a chance to turn three next year without reoccurrence! I will post here if I do for sure. So congratulations on making it out of the MpBC woods! That's a scary valley of death to walk through. Even if only for a little while. Happy 3 year birthday! If there's anything I can do here for service let me know,.
-Frack
0 -
Frack,
I think more people are getting diagnosed with MpBC these days, even though there are not a lot of people on this forum. The MpBC Facebook groups are fairly active with new people added almost daily. I think there is more awareness of this type of breast cancer than there used to be, in part because of advocacy efforts by the Metaplastic Breast Cancer Global Alliance. You may want to check out their website, if you haven't already. The group is run by volunteers who have been diagnosed with MpBC, and they go to conferences and engage with doctors and researchers to raise awareness and interest in this type of cancer.
Jen0 -
Hi Jen,
I have seen their site.
Well, they'd need to find another way to communicate. I do not ever use Facebook, and I never will. It's too polarizing. There are other platforms that are less polarizing. They should look into them.
Thank s again!
0 -
Still nobody here. That is a good thing! Happy holidays to all the TNs and the TN MPBCs, if there are any still on this forum, happy holidays to you too!
0 -
Hi Frack,
I keep a close eye on the thread, but took a break over Christmas. There used to be a very active metaplastic thread on this site, but then everyone seemed to disappear to join the Facebook groups. I didn't as Facebook is way too intrusive - amongst other things that I dislike about it.
Metaplastic is such a lonely diagnosis and I've never met anyone who has it or had a friend/relative diagnosed with it. Not sure about it becoming more common, I read a lot of scientific studies and haven't found any data to back this up.
I usually post on the triple negative thread that was originally started by Sylvia who wanted to hear from people from the UK who had been diagnosed, treated, recovered. Women from all over the world drop in, especially America, Canada and Australia, though the thread has been very quiet over the last year.
Like you, chemo brain is still with me. Think it might be here to stay.
Enjoy the rest of the holiday.
Gill X
0 -
So its just you and me! I never check this site, but I should! I'll leave it open for a day or two in case you have some burning MPBC talk.
Take care,
Frack
0 -
Hi Frack,
Think everyone's cleared off to Facebook. Like you, I'm not on Facebook and have no intention of ever joining it.
I regularly look at the more recent metaplastic research available online. Nothing new, but there seems to be a bit more interest. I'll be on here the minute I come across anything that seems interesting - good or bad.
Stay well,
Gill
0
