Surviving metaplastic breast cancer.

Rosiecat

I was diagnosed with triple negative metaplastic breast cancer in August 2018. My subtype is spindle cell with low grade adenosquamous. My age at diagnosis was 63 years, though as far as I can ascertain, age is irrelevant to survival with metaplastic cancers.

When initially diagnosed, I wanted to understand as much about my cancer as possible and did as much research as I could. My breast surgeon wasn't helpful and told me that I probably knew more than he did. My Oncologist has treated five cases of metaplastic, three have done well and it is too early to call with the others. Following mastectomy, I had to fight before being offered chemotherapy. I know metaplastic tumours are generally considered resistant to chemotherapy, but I also know that it is almost always treated in the same way as triple negative.

My treatment was completed just over a year ago and whilst I know that metaplastic cancer has a reputation for returning quickly and often I would like to know when I'll be able to consider myself relatively safe. Is it five years like triple negative or is it longer or perhaps never? Does anyone have any information?

Gill

Moderators

Dear Rosiecat,

Thank you for posting in the brand new forum for those with Metaplastic Breast Cancer. As mentioned in the forum description above this forum will be moderated by some volunteers of The Metaplastic Breast Cancer Global Alliance. We have notified them that there is a post for them to review. We hope that you will hear back form someone soon. Keep us posted if you experience a delay.

The Mods

MpBCAdmin_Jen

Hi, Gill! Sorry it has taken a little while to get back to you.

As you know, good information about metaplastic breast cancer is hard to find because it's so rare. The Metaplastic Breast Cancer Global Alliance is working to change that. One thing we've done is poll our members to gather different types of information. We polled our Stage 4 members to see how long after treatment they discovered it had metastasized. Check out #11 and #11B in the group member polls on the Metaplastic Breast Cancer Alliance website.

Hope this helps,

Jen

Moderators

Gill -- please see this link that Jen references above: https://www.mpbcalliance.org/group-member-polls/

Rosiecat

Hello mods and Jen from MpBC,

Thank you for raising the topic of metaplastic cancer. It really needs to be more visible on the breast cancer map. As It's so rare, it follows that posts will be fewer than is the norm for other threads. I hope that won't put anyone off.

The results of the Global Alliance poll were very interesting, but as always with MpBC, the group participating was very small. I think I must accept that the stage when women with metaplastic cancer can consider themselves 'safe' is, as yet, unknown. Triple negative cancer is far less likely to recur after five years and as my cancer is TN, I'll go with that. Having a goal is useful I think.

It would be good to hear anything at all from people with mataplastic breast cancer. This thread wasn't intended to concentrate solely on survival rates, it was just a place to begin.

Gill

MpBCAdmin_Jen

Gill,

There are a few metaplastic breast cancer Facebook groups that are fairly active, if you're interested. We started this forum for people who may not be on Facebook. I belong to 3 Facegroups:

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.

We're also going to try to get more of the women from the Facebook groups to start following this forum, too.

Jen

Rosiecat

Hi Jen,

I did know about the Facebook forums, but I'm not really a fan of Facebook. There used to be an active metaplastic forum here, but it gradually ran out of steam, probably as more people became aware of the Facebook groups. It would be good to have people from FB commenting here. Sharing information is so important, even more so when it comes to less well known breast cancers. My surgeon remarked that I probably knew more about metaplastic than he did.

I felt very isolated when first diagnosed and joined the triple negative thread for patients in the UK. I think it probably saved my sanity. I do still feel despair/anger when people assume that all breast cancers are born equal and insist on telling me how easy they are to treat/cure!

Hope we have some more comments here before long.

Gill

Rosiecat

Hello everyone (or anyone at all),

As expected, the thread is very quiet. I know that some patients with metaplastic breast cancer post on other threads from time to time. I also know that there are survivor stories out there. It would be very helpful to hear from people who have reached the five year mark.

Gill

MpBCAdmin_Jen

Hi, Gill!

There are a number of women in the MpBC facebook groups I'm in who have hit the 5-year mark and beyond. I've asked them to respond on this forum, so hopefully you'll hear back from some of them. I just hit my 2-year mark with no evidence of disease (NED) in July.

Jen

Rosiecat

Hi Jen,

Thanks, that would help.

I'm two years from diagnosis on August 24th.

Gill

wrenn

7 years for me and only had BMX. (chemo cut off after first infusion). Good to hear there are many past the 5 year mark.

Joy21

5 years cancer free next month. Triple Negative carcinomasarcoma, 3B. 😊 You can do this!

sherrimims

I am at the three year mark. It helps ease my anxiety over this beast that many women have reached 5+ year mark.

joons_au

I was diagnosed in Nov 2012, had surgery in Nov, then chemo followed by radiation. I am at 7.5 years now.

Moderators

Joy21, sherrimims, joons_au, WELCOME to you all and congratulations on your cancerversaries! We appreciate you sharing to encourage others and inspire us all. We look forward to getting to know each of you!

--The Mods

Rosiecat

Hello everyone,

I guess that coming up to my two year mark caused me to focus on my diagnosis a little too much. There's no doubt that metaplastic is a very tricky cancer, it's rare, has no treatment protocol, doesn't behave like other breast cancers and often doesn't respond to chemotherapy like most other cancers. Sherrimims is right to call it 'this beast'.

Hearing from women who are more than five years out has helped a lot, thank you. I have to remember that Dr Google usually gives the worst case scenario and stop using it whenever anxiety kicks in. As the mods have said, your positive stories really help to encourage others.

Gill

MpBCAdmin_Jen

Gill,

I am glad you are feeling more positive. I've mentioned it before, but you may want to consider joining the facebook groups listed in an earlier post, even if you don't go on facebook for any other reason. There are lots of women who actively support one another, and it's where I get some of the most up-to-date information.

Based on my post asking for 5+ year survivors, I see that a couple of women got on this forum to support you. Thank you, Joy21 and joons_au. A few others commented on my facebook post, including 6 1/2-year, 12-year, and 17-year survivors! I know of at least 20 more who are over 5 years in the group, and others who've dropped out of the group because it's been so long that they simply wish to move on.

Jen

MpBCAdmin_Jen

Gill,

Here's a message for you from someone in the facebook group.

Jen

Rosiecat

Hi Jen,

Please say thanks to Diane. She's right, positivity with metaplastic is hard to find. I'm usually ok and a 'glass half full' sort, its just hitting the two year mark has brought back a lot of unwanted memories. There are upsides with metaplastic, we don't have to take meds and put up with the side effects, recurrence is unusual after five years. I've also noticed that awareness of metaplastic is growing amongst medical professionals which means that diagnosis is improving - or it damn well should be. My cancer showed up as a cyst on the mammogram and I wasn't recalled. Months later when the 'cyst' didn't go away and began to grow rapidly, I went to my doctor who also thought it was a cyst and didn't fast-track my referral. I guess we the patients just have to keep on educating the medics and raising the profiles of this nasty little beast.

Gill