Topic: Welcome to our Metaplastic Breast Cancer Forum! Say Hi Below...

Forum: Metaplastic Breast Cancer (MpBC) — Join others to talk about Metaplastic Breast Cancer, or MpBC, a sub-type of breast cancer. This forum will be moderated by volunteers of The Metaplastic Breast Cancer Global Alliance.

Posted on: May 8, 2020 04:54PM

Posted on: May 8, 2020 04:54PM

MpBCAdmin_Laura wrote:

MpBCAdmin_Laura here.... this is my first post Happy

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May 9, 2021 09:33PM 3830341np wrote:

It is metastatic. Thanks for the kind words.

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May 18, 2021 07:09PM FrackingHateCancerMPBC wrote:

Hi Everyone,

Hi guys Smile I am 2 years in!SmileSmileI 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!

Smile 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! SmileSmileSmileSmileSmileSmileSmile.

Unicorns! Rainbows!Smile 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

Dx 2/19: Plastic TN (MpBC) | 3.9 cm | Neg Nodes | BRCA Neg | Stage 2 | Grade 3 | 16 days Dx to LUMP | ACT halted | LUMP | Reconstruct/Dent Repair was Fat Graft | RADS | living well & vigilant | Definite Chemo Brain 🔭🌋👑.
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May 18, 2021 07:57PM MpBCAdmin_Jen wrote:

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.


Jen

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May 18, 2021 09:07PM FrackingHateCancerMPBC wrote:

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

Dx 2/19: Plastic TN (MpBC) | 3.9 cm | Neg Nodes | BRCA Neg | Stage 2 | Grade 3 | 16 days Dx to LUMP | ACT halted | LUMP | Reconstruct/Dent Repair was Fat Graft | RADS | living well & vigilant | Definite Chemo Brain 🔭🌋👑.
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May 19, 2021 11:38AM MpBCAdmin_Jen wrote:

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.


https://www.mpbcalliance.org/


Jen


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Dec 26, 2021 05:20PM FrackingHateCancerMPBC wrote:

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!

Dx 2/19: Plastic TN (MpBC) | 3.9 cm | Neg Nodes | BRCA Neg | Stage 2 | Grade 3 | 16 days Dx to LUMP | ACT halted | LUMP | Reconstruct/Dent Repair was Fat Graft | RADS | living well & vigilant | Definite Chemo Brain 🔭🌋👑.
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Dec 28, 2021 07:48PM FrackingHateCancerMPBC wrote:

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!

Dx 2/19: Plastic TN (MpBC) | 3.9 cm | Neg Nodes | BRCA Neg | Stage 2 | Grade 3 | 16 days Dx to LUMP | ACT halted | LUMP | Reconstruct/Dent Repair was Fat Graft | RADS | living well & vigilant | Definite Chemo Brain 🔭🌋👑.
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Dec 30, 2021 07:53AM rosiecat wrote:

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

Surgery 9/17/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)

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