Metaplastic tumour - anyone else out there?

HelenV

Hi everyone, 
5 years ago I had a very small triple negative lump removed (<4mm) lymph nodes and margins clear and the lumpectomy was followed by radiation.  Fast forward to my annual scans last November and they showed a new lump in approx the same position as the last.  A core biopsy showed a lump that did appear cancerous but not triple negative.  In fact it showed ER+ which turns out was not correct.  A mastectomy (right side) followed in December and pathology showed a Squamous cell carcinoma.  A PET scan, oncology consults and retesting of the pathology and a comparision to the lump from 5 years ago followed.  The verdict is now that I had a metaplastic squamous cell carcinoma that was orginally a triple negative lump.  I'm about to start chemo - AC followed by paclitaxel.
It's a pretty lonely journey when no one else seems to have the same experience and the only things that pop on a search for metaplastic breast cancer are really, really scary and depressing.  Has anyone else out there had a metaplastic tumour?  

iserbrown

Hi @HelenV

Goodness what a shock after 5 years and a lot to take in.  I haven't heard of your type and it appears to be rare.

Hopefully someone here may know but if not we are here to support.

As to the chemo regime, lots on here have had similar and can share info

https://www.bcna.org.au/understanding-breast-cancer/treatment/chemotherapy/

Take care and best wishes 

arpie

So sorry to hear this diagnosis, @HelenV ..... I hope someone else can jump on & help you with info xx

Has your Onc mentioned the possibility of Immunotherapy?  Advances are being made every day on many cancers - even tricky ones, in combination with chemo.  If it hasn't been mentioned, maybe quiz them over it?

Take care & all the best for your ongoing treatment xx

Afraser

Hi @HelenV

I didn’t have your diagnosis but did have your chemo regime - lots do. Most find the A/C hardest and the paclitaxel relatively easy - I was the other way round, no way really of knowing till you start. But I worked throughout and I am no stoic, had a few side effects but no nausea, no fatigue. Nine years on, so far, all good! Very best wishes for your treatment and recovery. 

HelenV

@arpie she discussed immunotherapy with me but there is not much data on its effectiveness when given after surgery for these metaplastic ones plus it’s not covered on Medicare in this case so I’d be paying $60K and no way of knowing if it would make any difference. 

arpie

That's a Bummer @HelenV   ... this time last year, we were researching the same immunotherapy questions for my husband, who is stage 4 .... and our Onc contacted different companies on compassionate grounds, to see if he 'suited' - and some of them were willing to subsidise it a bit (but not fully).... but sadly, by the time we got the genome results from the USA, he had the wrong requirements or the treatments were not available in Aust yet, so sadly, none of the treatments recommended would suit him. 

Keep agitating, if you have the energy xx .... advancements are being made all the time. xx

Take care xx

Keeping_positive1

Hi there @HelenV sorry you find yourself having to go through this again.  There is a member I believe mentioned a metaplastic diagnosis, maybe she can stop by and give you some information @Michelle_R 

Look after yourself, I had the AC chemo and paclitaxel with Herceptin regime, but my diagnosis was different than yours.  My main concern was the brain fog.  Wishing you best with your treatment.  xo

Fufan

@HelenV  Yes, I have it.  Diagnosed 14 December 2021 with triple negative metaplastic bc.  I've had a mastectomy and am also about to start chemo: TC.  I don't know how much I can help you, as we are at the same stage of our journey, but at least we can support each other.

HelenV

Wow! @Fufan They keep telling me how very unusual it is and here there are two of us at the same time.  I am in Sydney with my treatment at Concord. Did you know it was metaplastic before the mastectomy?

Fufan

@HelenV
No. My diagnosis took 7 months.  My surgeon first did a lumpectomy, thought everything was ok, but the pathology came back with undifferentiated pleomorphic sarcoma, ie not a breast cancer. It was too big to save the breast, so she did a mastectomy (didn’t touch the lymph nodes because those sarcomas don’t go there).  The pathology from that gave me my present diagnosis.  My chemo will be at North Gosford Private Hospital. Due to start on 17 February but might have to be delayed because, after a month, my mastectomy wound has not completely healed. Has anyone talked to you about genetic testing?  I have a daughter and two granddaughters. 

HelenV

@Fufan I had the genetic test first time around and I am not carrying the gene.  They offered it to me as I had a triple neg lump and a shortage of female blood relatives the generation above mine - at my parents generation mum was the only female and my Grandmother had breast cancer. 

7 months is a long time to wait for answers.  I hope your wound heals and they can get you started on the chemo so you can begin to get this over with.

Fufan

@HelenV
There were suggestions of breast cancer in both my mother and her mother, but the details weren’t made clear to me.  
Let's hope we can both get this over with but, as you said at the beginning, the literature is not encouraging. 

I'm still trying to start a private chat with you, but no luck so far…

arpie

@Fufan, click on HelenV's name (in the post above yours) and then when the page opens, click on the envelope/Message to the left of the 'face' - that will open the private message for you to contact her.  Good luck xx

Fufan

@arpie
The problem was our names were not in the drop-down list.  They are now thanks.