Metaplastic Carcinoma
Comments
-
REG,
A friend of mine has been getting treatment for metaplastic. She got a consult with a specialist in that at MD Anderson in Houston, who gave her a treatment plan that is being followed by an oncologist in the area where she lives. (she's not doing the treatment in Houston). She is doing a clinical trial drug + taxol first, then will do ACT. She is doing chemo before surgery.
0 -
Placid44,
thank you for your input. Idon't know why, but both surgeons that we spoke to at Sloane and at North Shore said that my mom would have to have chemo after her surgery. I was surprised to hear that because it seems , through my reading, that chemo has not been proven to help with metaplastic BC. Has anyone had success with chemo and MBC?
thank you,
Regina
0 -
My friend who is metaplastic is halfway through chemo and the tumor is responding well so far.
0 -
please check out our facebook page too!!! There is so much great info there specific to Metaplastic BC (mbc) there is a page for family and a page for patients. Please PM Bena Roberts and she can get back with you.
Maggie
0 -
Good afternoon all!
Just wanted to let everyone out there know I had my first mammogram since I was diagnosed on Sept 30. I kicked cancer in the butt and am feeling great. I will be seen by my
Dr's every three months but am not scheduled for any more tests until next fall. My hair is now about 2 1/2 inches long and very, very curly. The fatigue is minimal now and I am feeling absolutely wonderful. I have to admit I was very nervous to go for the mammogram but have been on cloud nine every since I heard it was clean. " always believe something wonderful is about to happen"0 -
reginaseashell
MY oncologist sent me to Dana Farber and both agreed to have the lumpectomy, chemo and then radiation. They said it would reduce my chances of reoccurrence from 15% to less than 7%. It was my final choice but I really liked the odds. When it comes to MBC we are all praying for anything that will help.
0 -
I am was diagnosed with monophasic spindle cell metaplastic, with ER+. Apparently it is more often TNBC. I was also told a mastectomy would not be beneficial. I have had local radiation and now heading towards chemo, and I'll do the hormone too since ER+ (and slight PR+). What chemo did you have? My doctor is leaning towards TAC.
0 -
Dear kimlin, welcome to the BCO community.
You have joined a terrific group of supportive and knowledgeable people who can offer wisdom, information and their own experiences. People on this forum have a vested interest in keeping up with treatments for this rare form of BC, so their advice will be very useful.
We wish you all the best
The Mods
0 -
Welcome KimlinI had squamous metaplastic..I had a double mast as this is what my surgeon recommended to me..My Onc decided on Dose Dense Taxol followed by Dose Dense AC. I then had 35 radiation treatments. I am now 3 years out! Best wishes to you as you undergo treatment.
Maggie
0 -
Like Maggie, I had squamous MBC, also had a bilateral mastectomy and chemo, AC/Taxol. No rads. I am almost 6 years out now (on Dec 4th)!
0 -
hello,
I dunno if anyone is watching this thread too closely at the moment, but I'll ask my question anyway.
When my wife had her biopsy done a few weeks ago, it said "Invasive ductal carcinoma, not otherwise specified."
After her lumpectomy, we met the oncologist, and he made no mention of anything to do with squamous metaplastia. Now that I'm able to see the new pathology thing from after the surgery, it says "Invasive ductal carcinoma with squamous metaplastia", and in another section "the tumor shows a predominance of high nuclear grade tumor with a foci of squamous metaplastia" Then it says there's a part of the tumor with intermediate grade, no squamous metaplastia and staining for weak positive ER and moderate PR.
So I guess I'm a little bit confused. Is this considered metaplastic? Seems like the oncologist would have mentioned it.
0 -
kmo, as it was explained to me by an oncologist, the cells go through transition before they turn to cancer. Metaplasia, dysplasia and then actual cancer. It's already turned to cancer so that's probably why he did not make a big fuss about it. Another onc said that it is metaplastic.
I just think it's time to separate the types of metaplastic and concentrate on treatments for each.
0 -
My wife doesn't like forums and such but I have to talk to somebody about this.
My wife had estrogen pos breast cancer and was treated with extamestane after 4 rounds of AC. They left the breast intact for 1 1/2 years because the extamestane was working. Anyway it stopped working and she had sentinel lymph nodes removed as well as the breast. A biopsy of the breast revealed, at it's core, a new aggressive form of ER+ BC. She's now taking Tamofloxen (sp?).
Now the bad part. A dissection of the nodes revealed, in half of them (19 total), small amounts of metaplastic squamous and another type cancer cells, all triple negative. Her oncologist is going to do some research to see what to do next. I wished I hadn't looked it up on the internet. I'm destroyed! The only good part is that perhaps it was caught in time.
I guess the standard treatment is AC followed by Taxol. My wife had a violent reaction to the Taxol before so maybe their's a substitute. The doc says her next PET scan should show her clear - I pray.
Mike W.
0 -
Mike,
My friend is Metaplastic. She said there is a website for Metaplastic that's similar to BCO. I don't know the url, but maybe Google it. There is a Metaplastic specialist at MD Anderson in Houston. She devised my friend's treatment plan, but a local doc gave her the treatment. It was tac (taxol first, I think) plus a clinical trial drug
0 -
Thanks Hope. I'm still sort of confused about all this. I don't know why they missed the squamous metaplasia on the initial biopsy if it's so important, and they still can't seem to figure out if it's ER/PR positive or triple negative.
I suppose I should ask her Oncologist about it. But, my wife doesn't want any more information, she just wants to do the treatment. She's also pregnant, so she's focusing on that too. Seems like the treatment is the same no matter what anyway.
He also had an oncotype DX test ran a couple weeks ago, and it came back with a score of 32 on it, although the ER/PR levels were slightly below the cutoff levels for positivity on the test, so I dunno if any of the numbers apply anyway. It seems like we keep getting more questions than answers.
0 -
Hi everyone,
I'm new to this site and I'm hoping people unfortunately diagnosed with "Metaplastic squamous" are still posting. My mother was diagnosed this summer, a couple of weeks ago with this terrible disease. She is stage 1, no lymph nodes affected, no chest wall, or skeletal muscle affected, tumor 1.7cm which led to lumpectomy and they still want to go in aggressively and do 8 rounds of chemo, every 2 weeks with AC/T, then radiation. I thought it was good news it hadn't spread or that the tumor was small but they said due to the grade being a 3, they still recommend this... I'm trying to stay positive and be strong for her but this is all so overwhelming and scary...she is so so afraid and discouraged. Anyhow, I was just looking for support out there...
0 -
Hi nmalette and welcome to Breastcancer.org!
You've definitely found the best place for support here. We're sorry to hear of your mother's diagnosis. We're sure some others will be by shortly to share their experiences with this diagnosis.
Thanks for posting, and please continue to let us know how your mom is doing.
--The Mods
0 -
just wanted to pop in and say hello. I am a four year Metaplastic TN Survivor. 4 years ago today was my first chemo. Mine was also present in lymph nodes so we threw the bus at it and so far so good
Mags
0 -
Thanks for popping in with your story and support, Mags! Congrats on your 4 years and hopefully you and nmalette can connect soon!
--The Mods
0 -
nmalette your mom is very lucky. Because metaplastic breast cancer is so aggressive it is rarely diagnosed before stage 2or 3. The reason the docs want to be so aggressive is because this cancer is. My tumour was the size of a pea when I found it, 3.8 cm at biopsy 5 weeks later and 9.8 cm at beginning of treatment 3-4 weeks after the biopsy. Chemo is horrible, but your mom can get through it with your help. My daughter was invaluable. I've finished chemo and had a mastectomy and lymph node dissection and the next step is Herceptin and radiation. I'm in the 10% of women with metaplastic BC who are HER2 positive.
Anyone else getting Herceptin? I got through chemo with IVs but now my viens are shot and the good ones are in the mastectomy side so I'm getting a port put in on Nov 26th.
Also does/did any of you have bad cording? Between the pain from the intercostobrachial nerve being cut and the cording, I am having a lot of trouble lifting my arm.
0 -
I see that Maria Becker Fowler has recently died from her metaplastic breast cancer. She was a major contributor to the metaplastic breast cancer community.
Good news, wife is NED for now. One day at a time, one day at a time.
Mike
0 -
nmalette there is a closed facebook group called metaplastic breast cancer. You can email one of the organizers to join the group. Lots of information and support.
0 -
Hi, I am a newbie. Diagnosed 5/15 and just had core biopsies that showed Metaplastic BC with squamous cells. Stage 4 bone mets and liver tumor. Four different onchologists said no way to surgery. I wish I had done surgery when it was 3.5cm. Now it is as big as a cantaloupe and rapidly growing. I was hospitalized for severe infection after the core biopsy and get excruciating breast pains. I had doxyrubicin 4 times and taxol 4 times and the tumor continued to grow. I had been told that chemo does not work on metaplastic BC so I stopped all chemo. Waiting to get into Moffit and my Humana is not being very helpful so I will wait for BC/BS blue options in January and maybe I will get in to have a consult. Oncologist wants to do radiation just to say we are doing something before I can get in to Moffit. I cant understand at all why surgery couldn't have been done as I am now stuck with a really huge, infected, painful tumor. And I live in Florida so pain pills are almost impossible to fill, even for a cancer pt. with bone mets. I get so angry when I hear that there are so many amazing break throughs in breast cancer and all I have been given is 30 year old chemos that don't even work for what I have. They have given me neurapathy and the doxyrubicin has probably destroyed my heart. I see the displays in the store selling all of the breast cancer mugs and tee-shirts and it makes me ill. Sorry to sound so grumpy. I'm really not that type, but stage 4 triple negative Metaplastic cancer is not something that brings out the best in someone who still needs to raise a young child.
I had stayed very very hydrated through my chemo and I think that helped a lot. Zolfram was also good but I seldom used it. I tolerated doxyrubicin better than taxol. I slept when my body told me to. If I pushed it I would be nauseated and my white count would nose dive. I stayed away from crowds because my white count was about 1.7 most of the time. I got cockey when my counts got to 4 or 5 and ended up in the hospital with pneumonia because I volunteered at my daughters elementary for their thanksgiving feast serving drinks to the tables. I thought it would be OK because it was outside and my blood counts were up.
Be very careful with your teeth.( I am a hygienist.) Especially if you are on the infusion to strengthen your bones. A dental infection can be horrifying if you are on chemo.
Try to avoid sweets at all costs. When they do pet scan they give you glucose to drink and it goes straight to the cancer because cancer thrives on sugars. I usually have a lot of tumor pain after a sugar binge so I know it is doing something to me.
Has anyone had immunotherapy or any treatment other than chemo or radiation that has worked? Has anyone else had a problem getting surgery? It sounds like surgery has been the one thing to save anyone. Thanks Linda
0 -
My wife had an aggressive estrogen positive breast cancer tumor with triple negative metaplastic keratinized squamous carcinoma in her lymph nodes. She had a radical mastectomy and the tumor and 19 lymph nodes were removed. Some metaplastic was still left in her underarm area. After the operation she had her lifetime amount of AC (no taxol as she was horribly allergic to it); maybe 6 infusions. The chemo was followed by 7 weeks of radiation. They killed it all, she's now NED. From what I gather the squamous cell and spindle cell varieties are one of the few metaplastic types that respond well to chemo and radiation. Maybe your oncologists need to consult MD Anderson as they seem to be at the leading edge of metaplastic cancer research.
0 -
Hi Mommaflorida-
We just want to welcome you to our community here at BCO. Thank you for sharing your story. We're sorry that your options appear to be so limited, hopefully you'll get some information here that can be of value to you!
The Mods
0 -
Thank you so much for suggesting MD Anderson. There is one in Orlando a couple hours from me. I am currently trying to get into Moffit and even changed my insurance to try to get in. I do need to know where the doctors are that treat metaplastic so maybe Anderson will help me. I am still going to seek a surgeon even if it is in stage four I don't think I should have to live with a huge painful tumor. I wish your wife all the best and send prayers your way. It sounds like she has a good support team.
Linda
0 -
Thought it was about time to join the group - diagnosed w/ metaplastic (squamous cell) carcinoma in late December 2015. Just completed 12 rounds of Taxol (plus carboplatin and clinical study drug - veliparib) this week. Tumor not shrinking, but the consistency is changing, so they think it's having some effect. Breast is tender and swollen at the moment, and pain starting to radiate elsewhere (like those pesky lymph nodes...boo), so that's got me down a bit (MRI today will hopefully shed some more light on what's going on in there). I start AC next week and can't wait to crush it! MX scheduled for July 1, followed by radiation (5-7 weeks). I'm a pretty upbeat and optimistic person, but this cancer business can get the best of me some days, especially of late. Anyone else have chemo-induced menopause (I'm 40)? I'm thinking that's not helping my moodiness...
Glad to be among friends!
-JEB
0 -
jebrunner have you joined the metaplastic facebook site? Lots of good info there! AC shrunk my main tumour from 9.8 cm to 1.3 so help may be on the way! Lots of women experience chemo induced menopause. I'm actually going through a mild menopause again because chemo turned my hormones back on 6 years post menopause and I began lactating!!!
Good luck with AC it is rough but worth it.
0 -
I was just told by my oncologist that I have metaplastic squamish cell breast cancer. I have had a local recurrence to the lung, ribs and diaphram. We tried xeloda and I had every possible side affect and then found out it wasnt working. Started Abraxane yesterday. I went back and looked at my original pathology report from first diagnosis and it says right on there that it is metaplastic squamish cell but they never said anything to me about it. I have switched onc now. I am Her2+ so originally they gave me a year on herceptin, never did any scans, pretty much ignored me when I talked about pain in my ribs and then sent me on my way. Now I'm being told that I have this very rare cancer and I'm very confused and scared.
0 -
My mom first had metaplastic with prominent chondroid in Jan 2014. She had a mastectomy and chemo.
In March 2014 it came back and has spread to brain, lungs, skin, and I suspect other places.
She did 2 weeks of whole brain radiation and started Xeloda last week.
She is extremely tired (sleeps 18+ hours a day), has serious shoulder pain, and no appetite.
Does anyone have similar experiences and any thoughts on prognosis?
0
