Metaplastic carcinoma breast cancer

[Jazzy2019]

Hi Ladies

I am new on this site.

Does anyone have an element of metaplastic carcinoma in their breast cancer. I am also strongly ER+.

Would love to hear from anyone with the same breast cancer and what treatments have worked for them.

Jazzy x

[breezie]

Hi Jazzy

Welcome to the group. I’m sorry we all find ourselves needing each other’s support but you’ll find a lot of knowledgeable and friendly people here.

I can’t actually help with your question about metaplastic carcinoma but just wanted to say hi 👋 and wish you the best. Hopefully someone else will know something about it and post soon.

Sue

[hdhonda]

Dear Jazzy,

Metaplastic carcinoma breast cancer is one I haven't heard of. I suspect there may be some here with it though. The folks on this board are in different time zones. Another thought would be to search for message boards with your particular type. You can do more than one message board. And a most hardy welcome to you. Come back often. Blessings Hannah

[Hidden]

Hi Jazzy,

Along with the others, I'll welcome you to the community....I think you'll find a wonderful, supportive group of people here.

You did send me googling, and I see that your type of BC is very rare, which I'm sure comes with its own challenges (I'm so sorry).

Do you have access to doctors who specialize in this? Even periodic access? e.g. I go to a local onc, for convenience among other reasons, but also check in with someone at a Comprehensive Cancer Center who specializes in clinical trials...Insurance seems to always pay for this and, while I have certainly seen this secondary onc in-person, phone calls and teledocs work fine too...

My very best to you and, again, welcome to the group. I'm hoping that someone with your type of MBC responds to help with the information specific to your medical situation, but the rest of us will be here to try to help with everything else...

Lynn

[Hidden]

Hi Jazzy,

Welcome! I have not heard of metaplastic carcinoma before, so I am unable to answer your question. I’m hoping that someone else on here is more knowledgeable, perhaps with the same diagnosis as you.

But please continue to reach out. As Hannah mentioned, we’re from different time zones and also from different countries, so you will always find someone who is awake and able to answer you!

Take care,

Sophie

[Jazzy2019 in reply to Hidden]

Thank you everyone. I'm very grateful for your responses.

I'm in the UK.

My onc has a few patients with this type but they are triple negative.

Hopefully I might hear from someone who has same diagnosis.

Thank you Ladies. Sending love back x

[Hidden in reply to Jazzy2019]

You’re welcome, Jazzy. I’m in the UK too. Reach out to me anytime.

Sophie

[Buninga]

Hi there. I only joined the group at about Christmas time. Just saw your post. Wanted to share that I was diagnosed with triple negative metaplastic breast cancer in 2010. Wasn’t given much hope and all they could offer me at the time was dense dose chemo every other week for 4 mo. I opted for a mastectomy after that to avoid the need for radiation. I sailed through treatment. And was quite well throughout. Although I paired treatment with alternatives.

My second bout of breast cancer in my other breast was 4 years ago. But it was estrogen positive and no links to triple neg MBC. Opted to balance out the chest and had another mastectomy. Radiation was suggested but not forced. I decided against it. What was there to radiate?

Then this winter the estrogen positive bc strain metastasized to nodes behind my sternum where I have a cozy tumour snuggled in there not reachable by surgery or radiation. I’m on targeted therapy - Kisqali and Letrozole. Kisqali 3 weeks on and 1 week off. So far no real side effects. I still hike every morning and work part time. So far so good. I am tested every 2 weeks (ECG and blood work to make sure my liver and wbc are ok).

Sorry this is so long!! I just want to encourage you in your metaplastic breast cancer journey. Keep walking and eat well and do good self care. Don’t be discouraged. I know many from my mbc group back in 2010 who did well. One who headed up a chapter lives in Germany - Bena Roberts. She was an amazing support to us mbc folks with an online blog at the time. She’s since gone in to do other things. But still has a presence online.

Good luck!!

[Jazzy2019 in reply to Buninga]

Thank you so much for replying. It was very much welcomed today when i have been feeling a bit down.

I was diagnosed August 2019 with bc stage 2. I went to gp as found small lump in right armpit. Then after tests they found primary source tiny lesion in right breast following mri. Had lumpectomy and node clearance. The bc in breast was triple negative. The one in armpit was ER+. By the time of surgery the lump in armpit grew from 3cm to 9cm in 4 weeks. So wasn't straightforward surgery. Only 2 lympnodes positive out of 21. Clear margins. I recovered well and went back to work.

5 weeks later, lump popped out on armpit (where incision is) and was growing rapidly no one knew what it was until I saw oncologist as was waiting for chemo and radiotherapy. She knew it was a reoccurrence straightaway and my world came crashing down again.

Had few sessions of carbon platin chemo (then had reaction) and radiotherapy x10. Prostap injections.

A&e few times due to tumour breaking down, blood all down my back.

Feb 2020 my armpit had closed back up and there were 2 x 1cm lesions near there and side of breast which couldn't see. Was looking great. Went onto verzenio and letrizole slowed it down but out it popped again.

Since then FEC chemo, abraxane.

They all worked initially but after 3 sessions nope . I had 5 sessions of abraxane and it looks worse to look at. No spread anywhere else.

So I'm dressing and cleaning armpit and waiting for next treatment. I have other tiny bumps come up on skin near that area. Oncologist mentioned this week this other tablet chemo otherwise after clinical trials.

I was really upset.

I'm having ct scan this week to see where I'm at.

Onc said part of it responds and its the metaplastic bit doesn't. My breasts are clear. It's just in right arm pit. If it was in breast only I would have considered mastectomy.

Sorry this is so long.

I'm 39 with 2 children . 7 and 9. They know about it and pray for their mummy.

Xx

[Buninga in reply to Jazzy2019]

I’m sorry to hear you’re on this journey. And yes, the sad thing about mbc is the speed at which it grows. I’d have to look back at my health binder to see what the chemo cocktail was that I received. I was stage 3 and did 8 rounds of chemo. I was also big on self care. Made certain I did a solid walk every day to calm my mind. Especially since cancer can really play havoc up there. 🤯🤯 ... Please reach out any time. And don’t apologize for being wordy. Good luck on your ct scan and keep me posted. Breath deep.

[Jazzy2019 in reply to Buninga]

Thank you so much.

[Buninga]

Oh... and I live in British Columbia Canada.

[Jazzy2019 in reply to Buninga]

Hi Buninga

Hope your good.

So I got my Ct scan results. 2 tumours in right armpit only, some nodules near the side of the breast but breasts are clear. Few skin bumps around the armpit and a nodule on the chest nearer to the armpit part. One of the tumours o can see as previously posted.

Started new treatment today. Chemo tabs (xeloda). Also met with plastic surgeons following from MDT meeting oncologist had.

They are thinking of carrying out surgery again and get it all out and use skin from my stomach or side to skin graft and ensure armpit can be closed again and the skin bumps can be repaired with the new skin.

They are also thinking mastectomy of right breast only.

Alot to think about. They are going to think bout it more as they seen me first time and want to weigh everything up and ensure all clear following surgery otherwise whats the point.

Feel bit deflated at the moment and really welcome a chat if your up for it.

Thank you

Jazzy

[Buninga]

Well let me pump u up “deflated jazzy”. First a cyber hug. Thankfully your CT scan report is now behind you. Now you juggle thoughts. What to do ...what to do. I suspect they put you on the drug to halt any further growth while they sort things out?. ... To remove what’s under your armpit will be uncomfortable for a while. But the body has a remarkable way of recovering after surgery. ... And to remove a breast is your decision. I opted for it as it served its purpose. ...It sounds to me like you have a conscientious team on your case. ... Let me know how I can help. You take care.

[Jazzy2019 in reply to Buninga]

Thank you for responding. Seeing your email first thing made me laugh (after reading the pumped up bit! Lol).

I'll know more tomorrow evening after the big meeting as the surgeon said they will give me call.

L

If I can ask you please When you first opted for mastectomy following first diagnosis had the metaplastic type spread to your lymphnodes in armpit? Or was it just in breast?

The issue that concerns the team is that if there is a reoccurrence few weeks after surgery, it begs the question was it worth it? Particularly with this type although armpit one is ER +.

Jazzy

[Buninga in reply to Jazzy2019]

Aaak!!! I wrote a long response and wasn’t finished and it disappeared!!

[Buninga]

I’m heading into a zoom meeting. I’ll get back to you after that. So sorry!! Gosh I love technology until it disappoints!!!

[Jazzy2019 in reply to Buninga]

Oh no! Yep technology is great when it works!

No worries

Take care x

[Jazzy2019 in reply to Buninga]

Hi Buninga

Hope your well.

I have now had confirmation that surgery will be on 17 March. Scared and relieved I suppose. Mixed feelings.

Speak soon

Jazzy x

[Buninga in reply to Jazzy2019]

Hello there. How are you feeling? So many decisions for you. I’m thankful they’re moving quickly on this. And I know how unsettling this must feel. I first had a lumpectomy and then went for a mastectomy. Just wanted to remove further risk. The body has a miraculous way of healing after surgery. Will you be given chemo after surgery? Sending you good wishes. Ask me anything. Xox Buninga

[Jazzy2019 in reply to Buninga]

Hi Buninga

Thanks for replying. Dont know what will happen following chemo. So far its been resistance to chemo and radiotherapy.

They are worried at the possibility of reoccurrence in armpit.

It will be second surgery in armpit.

I'm praying that I will be fully healthy post surgery for many years to come and it will be worth it.

Thank you for your good wishes. Take care.

Jazzy x

[Jazzy2019 in reply to Buninga]

Following surgery* not chemo

[Jazzy2019 in reply to Buninga]

I just wish it hadn't spread to armpit and didn't have to go through this. I'm trying to stay strong.

[Buninga]

Oh this is so tough for you. 🙁 And the armpit is such an uncomfortable place for healing. And the worry comes out in the nighttimes and when there’s a quiet moment. I feel for you. ... Take big breaths and do what you can for self care before surgery. Xox

[Jazzy2019 in reply to Buninga]

Thank you so much. I'll keep you posted. X

[Jazzy2019 in reply to Buninga]

Hi Buninga

How are you doing!

I'm recovering well from surgery, been over 4 weeks now.

Still healing so am still getting bandages done to one small area. But I am doing really well!

I hadn't yet had my results following surgery. I am due to see the surgeon on 30 April. But received a letter today confirming the outcome of a MDT meeting last week and saying the lesion removed was triple negative! I'm well confused! ER is 3. So has changed!

Not sure what thus means moving forward but I'm taking it as good news I think!

I'm doing alot of self care and have started my vegi patch again in the garden and my greenhouse. Got lots of veg and fruit cokinv along nicely.

Hope your well and good!

Sending love xx

[Buninga]

Did you get my reply? Let me know sometime. I’m challenged with navigating this site. :/

[Jazzy2019 in reply to Buninga]

Hey no I just got this reply that I'm replying to x

[Buninga]

Hmmm I wonder what I’m doing wrong. 🤷🏼‍♀️ I’ll try again. I even attached a picture. ...Glad you are on the mend!! Let me know what treatment plan they propose on the 30th. K? Keep gardening and enjoying spring! My tulips :). Xox

[Jazzy2019 in reply to Buninga]

Yes got the pic with this reply. They are sooo beautiful. I love them.

Dont understand the letter at all. No mention of 'meta.....'! So I'm just going with the flow and accepting it as good news!

Got appt with oncologist on 10th May due to Bank Holiday in between.

Getting my kitchen redone too! Been busy redesigning it! So keeping myself happy with lots of projects!

Got turnips, squash, scarlett runner beans, French beans, yellow and green courgettes, cauliflower, okra, tomatoes, aubergines, salad onions, sweet peppers, carrots, spring onions, strawberries growing! All little seedlings at the moment!

Potatoes and coriander too!

I will keep you posted!

Take care.

Xx

[Buninga]

Wow!! You are farther ahead in your garden than I am!! Good for you!! I can’t wait to get my veggies planted!! Enjoy!! Xoxo

[Jazzy2019 in reply to Buninga]

You too!

[Jazzy2019 in reply to Buninga]

Hi Buninga

How are you doing? How's the gardening getting along! Hope you are doing good.

Well I got my results back from the surgery. The lesion they removed from the armpit turned out to be triple negative of no special type, no DCIS, no vascular invasion. Got clear margins too! They also said it was in the breast tissue not the lumphnode as previously though. Hence no spread all this time.

I was completed floored upon hearing this. No mention of metaplastic!

I couldn't understand. They said treatment can sometimes alter the receptors as it was estrogen positive. Dont know what happened to the meta...

I cried alot during the consultation. Happy tears.

I'm still healing well. Got a very tiny area that us bring bandaged.

There has been a tiny skin bump come up side of my chest near a scar. Looks like a spot but hurts when pressed. I've been in good spirits since the surgery but did get upset today when checking out the spot. As I did have some skin lesions removed during surgery too.

Despite best efforts I guess its natural to feel bit scared........

[Buninga in reply to Jazzy2019]

Hello!! Lovely hearing from you and especially your results. What a relief! This is indeed good news!! No DCIS, no vasc., clear margins ... all awesome news!! Now tuck any of those remaining straggling fears into a box and bury them or throw them into the sea. . ... As for the spot, I have one on my scar as well. And it healed and it has a black spot in the centre. They called it something 🤷🏼‍♀️but said not to worry. It was just how it healed. My dermatologist said the same. And that was 5 years ago.

Everything is fine here. The garden has been a huge project. Still need to get veggies in as we’re starting from scratch. Flower beds are coming together. We have a quarter acre and I am redoing the entire place. Well with my husbands big help of course! And I was working all last week. I work one week a month but full on. I do food styling for magazines.

My husband and I have a date every morning and go for an hour walk before he starts work. We try and do that at least 5x a week. The dog thanks us for this. 😄

I take ugly pills 3 weeks a month. 🙄 600mg Ribociclib along with letrozole. This is my week off so I’m going to take full advantage of getting things done.

Please continue to keep me posted... and of course you will always be a bit scared. The boogeyman in the closet. 😕 But this will lessen over time. And you will grow stronger and more confident every day. You have a lot of living to do. 😊 Your children and husband all need you.

Message me anytime. I’m always here to give you a pep talk. 💃💃

[Jazzy2019 in reply to Buninga]

Aww so lovely to receive your reply. Beaming with positivity i love it. I'm waiting for the weather here to calm down a it sunny one min and Hailstones the next! So everything is in the greenhouse at the mo.

Quarter of acre! Wonderful!

Thanks for the pep talk, yeah the spot hurts when pressed or touched. But I'm still healing so yes got to trust my body.

Spoke to my oncologist today and she told me that one of the margins was really close. Got 5mm all the way part of this bit where there was only 0.2mm margin clearance. She said reoccurrence is very likely due to this. I also found out today my PDL1 test came back negative so no immunotherapy.

She mentioned chemo tablets as a preventive. I said can't think as yet as I'm still healing. Once healed I will consider then.

So I was down after speaking to her as my surgeon was happy with the clear margins and I didn't know any different until today. So took me most of today to compose myself.

I thought to myself so what, there were clear margins before and look what happened. I'm in a better and healthier position now. Just because the onc said or thinks what she does, does not mean I believe it.

The skin spot is at the back of my mind but I'm seeing surgeon again in 2 weeks so will see what she says.

No one knows what will happen. pathology reports can be wrong. I trust the surgeon who did my surgery and took out everything she needed to. And she was happy with thst. I am too.

Oh yes plenty to live for. I'm having my kitchen redone so I've been designing thst. Planning a few staycations too!

Xxx

[Jazzy2019 in reply to Jazzy2019]

Also, no one has an answer as to what happened to the metsplastic bit.

I asked if there is anyone like me, with the before and after pathology reports like mine. Nope just me!

For me its my miracle these results are.

[Buninga]

Keep me posted. 🤗

[Jazzy2019 in reply to Buninga]

Hi Buninga

How you doing? How's your gardening getting on?

Hope you are doing well.

I went to see oncologist yesterday and surgeon today. The skin spot I mentioned I have other bumps around the surgical scars under and around armpit and chest. Quite hard.

Well it was the obvious. Reoccurrence in skin. They are not going to do a skin punch biopsy as there are a quite a few!

Have been upset and teary since yesterday.

Starting chemo tabs tomorrow xeolda (might have mispelt). Waiting for CT scan date and then results. Will see them again in 2 weeks time.

Jazzy

[Buninga]

Ohh crap. Well the drug will definitely keep it from growing further. Breast cancer treatments and meds are so amazing these days. What I’m on today wasn’t available 4 years ago! Sometimes the side effects can be annoying but over time it gets easier. ... Do you think they can remove them? And are they sure it’s not metaplastic? Sounds a bit to me that it is.

[Jazzy2019 in reply to Buninga]

I'm not sure if they can be. I had some removed during mastectomy. No skin biopsy so not sure how they would know the type.

Let's hope so, starting tabs today!

[Buninga in reply to Jazzy2019]

Why no skin biopsy?

[Jazzy2019 in reply to Buninga]

I think they think they have a specimen from what they removed on 17 March.

[Buninga]

Keep me posted. I know here in Canada they store my biopsies. I’m not sure where.

[Jazzy2019 in reply to Buninga]

Hiya Buninga

How are you doing? Hope your doing good and your garden is getting on really well.

I've had my Ct scan results today. The skin lesions in armpit and chest wall are superficial onco says but they are very hard.

The Ct also showed metastasis in lungs and liver now. Small specs.

Was not expecting this today at all.

They mentioned palliative care. Really upset me.

Starting iv chemo this Wednesday.

[Buninga]

Oh jazzy this not news I hoped to hear from you. Please don’t let palliative scare you too much. It’s all about maintenance. Chemo is all about not letting the cancer grow further. I recall I was blasted hard with chemo 11 years ago and it worked for me. Which was considered something of a rarity. The cancer I have now is unrelated and not curable. Stage 4. But the drugs I’m on, which are new, are keeping me in a holding pattern. ... Let me know what kind of a chemo program you’re going to be on. Every 2 weeks? Three weeks? Injection or pills?

[Jazzy2019 in reply to Buninga]

I'm starting IV chemo this Wednesday called eurbelin (pronounced rubelin) not sure of spelling. Every 3 weeks

[Jazzy2019 in reply to Buninga]

They also mentioned another dose of radiation to armpit

[Buninga in reply to Jazzy2019]

Check out creams you might need to prevent blisters.

[Buninga]

Drink lots and lots of fluids and walk as often as you can. You want to move chemo drugs through and out of your system. You can do this. I’m in the bleachers cheering you on!

[Jazzy2019 in reply to Buninga]

Thank you. The onc and breast care nurse had really sad eyes thinking oh poor you, your not going to be around long.

I reminded the onco of my promise that I will still b around 20 years later.

She looked really puzzled obviously.

[Buninga]

I can’t believe a nurse would say that?? They’re in the business of hope. Not discouragement. Read up all you can on your cancer and do everything you can. You’ve got lots of living to do!! I know people who have had stage 4 cancer for years. (Www.butdoctorihatepink.com) she is one example. But there are so many.

[Jazzy2019 in reply to Buninga]

Sori, I should have worded it better. The nurse didn't say that. Her sad eyes did, she felt reslly sorry for me. I could read her like a book

[Buninga in reply to Jazzy2019]

That’s why I hate telling people I have cancer. I can’t handle their emotions. Because they look at you that way. 🙄

[Buninga]

My odds weren’t great in 2010 either. I had chemo every 2 weeks for 4 months. Day 1 Monday I had chemo. Day 4, 7, and 10 I had Vit C IV. And then Day 14 chemo. My naturopath says chemo only stays in the body for 3 days which is if you walk walk walk and drink lots of fluids to flush it thru. Vit C IV wasn’t recommended as it can contradict chemo. So that’s why I waited for 3 days before doing it and stopping 3 days before my next chemo injection.

[Buninga]

I declined rads after because I had a mastectomy and only a couple lymph nodes were infected but removed. So I opted not to have any. But your case is different. As we all are. Be informed and read everything you can. And walk. And hydrate.

[Buninga]

I’ve talked your eyes off. I’m sorry. You can do this and don’t hesitate to write me when you need a shot of positive reinforcement. 😄

[Jazzy2019 in reply to Buninga]

No you have been great and I'm really grateful for each message. Thank you. I do feel alot better.