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Topic: Metaplastic Breast Cancer Articles and Case Studies

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 some volunteers of The Metaplastic Breast Cancer Global Alliance.

Posted on: May 19, 2020 01:29PM

MpBCAdmin_Jen wrote:

If you are looking for scientific articles or case studies on metaplastic breast cancer, check out the collection of articles on the Metaplastic Breast Cancer Global Alliance’s website. It’s a great place to find links to some of the latest research results and case studies.

https://www.mpbcalliance.org/metaplastic-breast-cancer-publications/

Jen

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May 20, 2020 05:22AM Rosiecat wrote:

Hi Jen,

Some very useful information there. I'm working my way through it.

Gill

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 20, 2020 06:57AM MpBCAdmin_Jen wrote:

Gill,

I'm glad you are finding it useful. I know when I was first diagnosed, the web searches I did turned up information that was either outdated or simply frightening. It's nice having so much info in one place. I don't have a medical background, so I can't easily understand everything in some of these articles, but I usually can grasp the main points. I've even printed out some of these articles to share with my oncologist.

Jen

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May 20, 2020 12:30PM Peregrinelady wrote:

Thank you. My SIL’s sister was just diagnosed with metaplastic and I have shared the link with them.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/19/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 8/1/2016 Arimidex (anastrozole) Hormonal Therapy 7/20/2020 Femara (letrozole)
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May 20, 2020 12:48PM - edited May 20, 2020 12:50PM by MpBCAdmin_Jen

You're welcome! Please feel free to ask any questions you or she may have. I was diagnosed a little over two years ago, and I'll be two years cancer-free this summer!

Here's another page that contains some good information. Check out the links at the bottom of that page, too. The Metaplastic Breast Cancer Global Alliance is trying to pull together as much information and as many people as they can to help women diagnosed with this rare type of breast cancer.

https://www.mpbcalliance.org/metaplastic-breast-cancer/

Jen




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May 20, 2020 04:57PM Rosiecat wrote:

Hi Jen,

Congratulations on being very nearly two and a half years out. I'll be two years out in August. I know that metaplastic breast cancer is renowned for being resistant to chemotherapy which is why surgery is the priority, nevertheless, I had a mastectomy followed by FEC-T and just hoped that I might get at least some benefit from the chemo.

Would you mind sharing the treatment path you chose?

Peregrinelady, like Jen, I would be happy to answer any questions your SIL's sister might have. Has she asked for a copy of her pathology report? I found it very useful. I only discovered my subtype by reading the report, the surgeon didn't explain anything and didn't answer my questions. My subtype turned out to be spindle cell and low grade adenosquamous.

Gill


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 20, 2020 06:25PM MpBCAdmin_Jen wrote:

Gill,

I did TC (cytoxan and taxotere) first, followed by a lumpectomy. Then I did 6 months of oral chemo (xeloda) followed by radiation. My total treatment took a little over a year to complete. But I bounced back quickly and have few lasting side effects. The very tips of my fingers are a tiny bit numb, and I have no fingerprints. They disappeared while I was on xeloda. Also, my hair is darker than it used to be. Other than that, I am doing great!

My initial pathology report listed spindle cell and matrix-producing subtypes. Chemo shrunk my tumor and made it squishier. The pathology report after surgery showed only matrix-producing cells, so I'm guessing that chemo killed the spindle cells. Hopefully since you had the same 2 chemo drugs I did (TC), you got some benefit from chemo, too. I believe xeloda and fluorouracil are basically the same, too.

I guess I should update my profile to add all that info. Lol

Jen

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May 21, 2020 12:08AM Peregrinelady wrote:

Thank you! I will reach out if they have any questions.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/19/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 8/1/2016 Arimidex (anastrozole) Hormonal Therapy 7/20/2020 Femara (letrozole)
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May 23, 2020 11:03AM Rosiecat wrote:

Hello Jen,

I was interested to learn that you had chemotherapy before surgery. I was told by my original surgeon that the cancer could keep on growing if I took that root and surgery was usually done first. In the UK, mastectomy is followed by chemotherapy, but radiotherapy isn't often given. Radiotherapy is offered after lumpectomy. I was offered lumpectomy followed by radiotherapy, chemotherapy was refused and I had to travel to a cancer centre for a second opinion. The consultant there told me that metaplastic should be treated with aggressive chemotherapy. I had quite a fight before I was allowed to have it though. While reading through the metaplastic breast cancer publications you posted, I noticed that women who were offered radiotherapy after chemo stood a 30% better chance of surviving. Too late now!

Gill

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 23, 2020 11:21AM wrenn wrote:

Thank you for this thread. I had looked for information when I was diagnosed 7 years ago.

Mine was sarcomatous (metaplastic). I had a double mastectomy on August 16th and because of complications I wasn't able to start chemo until Nov. 25th which was quite a long time. I had one dose of cytoxan/taxotere and was then cut off after developing diverticulitis. I worried about not having chemo but am also relieved since I developed neuropathy from just that one dose.

I feel very lucky to not have had a recurrence.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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May 23, 2020 02:42PM Rosiecat wrote:

Wrenn, it's really good to know that there are long term survivors out there. From what I've been able to gather, surgery seems to be the most effective treatment for metaplastic. I fought to he allowed chemo, but found it very hard going. I had sepsis after every infusion except the first and finally c difficile which has left me with colitis. I noticed that you weren't offered radiotherapy.

August will mark two years since my diagnosis. Very worried about the next 2 - 3 years, as I know a recurrence is fairly common at that stage. Hope I'm as lucky as you.


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 23, 2020 03:30PM wrenn wrote:

Rosiecat I hope you are one of the lucky ones too. I actually feel like a dodged a bullet when chemo was cut off after reading that it isn't always working for metaplastic. Regarding radiation I was told that I would only get radiation if I had opted for lumpectomy instead of mastectomy.

Best to all.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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May 23, 2020 06:20PM - edited May 23, 2020 06:25PM by MpBCAdmin_Jen

Gill and Wrenn,

I belong to a couple of fairly active MpBC groups on facebook. In one of the groups, one of the moderators asked how long everyone has been NED (no evidence of disease). More than 100 women responded. About 3/4of us had been cancer-free for less than 5 years. Another 30 had been cancer-free for between 5 and 10 years. Five more women said they'd been NED between 10 and 15 years. There also was one woman who's been cancer-free for 16 years, one for 18 years, and one for 20 years! It certainly gives you hope.

Jen


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May 23, 2020 09:41PM wrenn wrote:

I think many people further out tend to post online less about how they are doing so the numbers might be even better.

:-). I no longer worry that every twitch is mets but I don't want to test the gods by assuming I am done with cancer.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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May 24, 2020 04:56AM Rosiecat wrote:

I needed to hear something like that Jen. I think being in coronavirus lock down has resulted in my thoughts focusing on cancer far more than usual. I'm usually optimistic, glass half full, but really miss normality, meeting friends for coffee, just casual conversations, shopping and so on.

I think your right Wrenn, many people do move on after a few years of being cancer free. It's also important to remember that as far as scientific studies go, metaplastic breast cancer is so rare that to achieve a larger cohort, women who are at stage IV or who have comorbidities are often included. The consultant I saw for a second opinion put my chances at 50-50 without chemotherapy. I think that was a tad pessimistic, especially considering that the pathology showed my tumour to be grade 2 when most are grade 3.

Wrenn, diverticulitis and neuropathy after just one dose, I would have stopped too. With hindsight, wish I'd stopped Taxotere after the first dose.

Keep well everyone.

Gill



Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 29, 2020 08:00PM Hope999 wrote:

Thank you for this, I hope to read it thoroughly later. Nice to see there's a dedicated board for metaplastic now because when I was diagnosed there was limited, scary data.

I'm curious to see if there are any studies about diet and its relation to Mpbc. I eat so much junk it's not funny and it started after chemo.

Triple Negative, Metaplastic, Multifocal, 4 tumors including 1 intracystic. Dx 4/13/2012, IDC, 6cm+, Grade 3, ER-/PR-, HER2- Chemotherapy 6/24/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 30, 2020 04:45AM Rosiecat wrote:

I don't think there's anything regarding diet that specifically relates to metaplastic cancer. The Mediterranean rainbow diet seems to be the way to go for all cancer patients, plenty of antioxidants. Sugar feeds cancer which is bad news for chocoholics like me. Since finishing chemo, I've gone for chocolate made with 70-80% cocoa, this is full of antioxidants and supposedly good for lowering blood pressure, and helping to prevent heart disease.

The stats for metaplastic breast cancer are really scary so I was very happy to see that you're eight years out. My diagnosis was August 2018 and I have a long way to go, but you and Wrenn have given me hope.

Gill x

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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May 30, 2020 07:23AM MpBCAdmin_Jen wrote:

I had a healthy, mostly plant-based diet before I was diagnosed. Virtually no sugar and very few carbs. While on chemo, however, carbs were one of the things I actually felt like eating and that didn’t taste weird. Other things gave me heartburn or tasted like metal. I actually gained weight while on chemo. Now I’m back to my old healthier diet, but like Gill, I indulge in 85% dark chocolate. It‘s health food, right? 😉

Jen


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May 30, 2020 01:23PM Hope999 wrote:

Thank you Rosie, I've had no problems since treatment and my surgeon just gave me another good report so there's hope for us all. My weakness is salty snacks and diet Coke, which I never drank before. I'm trying to shed the 30 extra pounds now, lol.

Triple Negative, Metaplastic, Multifocal, 4 tumors including 1 intracystic. Dx 4/13/2012, IDC, 6cm+, Grade 3, ER-/PR-, HER2- Chemotherapy 6/24/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 30, 2020 01:28PM Hope999 wrote:

Jen, yes dark chocolate is healthier! lol

Triple Negative, Metaplastic, Multifocal, 4 tumors including 1 intracystic. Dx 4/13/2012, IDC, 6cm+, Grade 3, ER-/PR-, HER2- Chemotherapy 6/24/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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