Metaplastic Carcinoma
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Dear leafy, Welcome to the community. We are sorry to hear about your mom but glad that you reached out to learn more and to hopefully gain support for her and you. You also may want to check out the forum for Family Members and Caregivers supporting someone with metastatic breast cancer. We hope that you might gain support from others as to how to care for you mom and yourself. The mods
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Thank you for the kind welcome. I just posted to that forum.
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I was diagnosed May 6th 2016 with Metaplastic Carcinoma and am Triple Negative. I would love to talk to someone who has been through this type of cancer. I am two treatments into my 4 months of chemo.
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I have it was just diagnosed with it in May 2016
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Hi Tamis, and welcome to Breastcancer.org!
We're sorry you have to be here, but really glad you found us. You're sure to meet many others soon who can help!
Please continue to check back in often, ask questions, and get support. We're all here for you.
--The Mods
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Hello- I am newly diagnosed and am still in shock-feeling extremely overwhelmed. I visit my cancer team tomorrow. My family is the BRCA1 gene carrier and my sister recently went through breast cancer (triple negative invasive ductal carcinoma with BRCA1). I guess I figured it was a matter of time before I ended up with breast cancer, but the last thing I was expecting MpBC.
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Hi, I was diagnosed in April 2014 and it has now spread to lungs, ribs and chest wall. Metaplastic squamish cell and her2 positive which I guess is pretty rare. Xeloda didn't work for me and I'm now on my third cycle of Abraxane. I will have a ct scan and maybe pet after this round. Hoping it is stable. If anyone else has this diagnosis I would like to hear how they are doing. I also had Foundation One testing some and mutated pten pen and tp53 genes which normally would suppress tumor growth. Thanks for reading!
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My wife, as you can see below, had 2 types of cancers. Her metaplastic keratinized squamous carcinoma was triple negative. Strange yours is HER2+. AC did the trick for her plus radiation. If you get the right chemo this stuff can go away just as fast as it appeared. Man I must have fat fingers because I hit every adjacent key a dozen times just to type the above.
My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.
My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.
A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has two cancers, one ER+ PR+ HER2- and another triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.
After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign. Happy dance, she's NED and back on tamoxifen.
Prayers and fingers crossed.
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Hi everyone I was wondering when you found out your tumor was metaplastic? I had a core needle biopsy in November 2015 with no mention of it being metaplastic. I then had 20 weeks of chemo. After my mastectomy in May I found out my tumor was metaplastic with matrix formation. 25% of the tumor was left after chemo. Anyway I feel like that is info one needs before they start treatment!
Themomoo I also had a mutation on the PTEN gene, though it was termed a variant of unknown significance.
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I was doing herceptin treatments every three weeks and started having pain in my ribs. My doctors kept saying the pain was from my reconstructive surgery. They did an xray and said everything was fine. I complained of pain for months before they did a pet scan and that's when I found out it had spread. They then admitted that they missed it in the xray and the tumor had doubled in size. Anyway, I changed doctors and that's when I found out it was metaplastic. And then come to find out, it was right there on the original biopsy which should have made them more vigilant about listening to me about the pain. The cancer was spreading while I was still on Herceptin. I guess it is resistant to treatment. I actually think it is better to be triple negative with this cancer. What I have been told is that they really don't know what will work for me.
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Here is the link to a Phase 1 trial of the first ever treatment of the rare 1% metaplastic triple negative breast cancer. It seems a heart medication (L-NMMA which is already in use) and used in conjunction with regular chemo has a significant effect on this type of BC. My wife had this type in her lymph nodes. It might come back someday.
https://www.sciencedaily.com/releases/2017/01/170106111111.htm
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New to this site and was wondering if anyone is still active on here? I have Metaplastic Carcinoma Breast Cancer, that I found when I was 25 during March of 2016. If anyone knows of any advancements in regards to treatments or has any information that they think may be helpful I'd greatly appreciate it. I've tried to research as much as possible but with the rarity of this diagnosis there's not much info that I've come across. Thanks and I hope everyone is doing well.
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Hi ColoradoKiki-
We're so sorry you find yourself here, and we're sorry there isn't more information out there that deals with metaplastic carcinoma. It's such a rare disease, and research hasn't caught up to it yet. We're bumping this in the hopes that someone in the community sees it and has some insight or advice to share with you.
The Mods
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I too have Metaplastic Spindle Cell Triple Negative breast cancer. Information is very sparse on this cancer. I was recently diagnosed with a chest wall recurrence of the same cancer. Due to my tumor being wrapped around the brachial plexus nerve the only way to remove tumor is to remove parts of ribs #2-5 and amputate my arm at the shoulder. Surgery is scheduled for March 20th.
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DiV, maybe, just maybe this study could help you:
https://www.sciencedaily.com/releases/2017/01/170106111111.htm
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DiV, I'm so sorry to hear what you're going through. I'm praying for you and hope your surgery is successful. If you don't mind me asking how did you find out about the reoccurrence? That's part of this diagnosis the leaves me uneasy is knowing the risk of reoccurrence is high. I'm glad you responded as it's hard for other people to relate, although I hate knowing there are other people faced with this horrible diagnosis.
Mike3121, do you know how to find that particular trial? I'm interested in seeing if I'd qualify, especially since where I live there isn't really any specialists who have experience with this particular diagnosis.
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I check out there web site. Sometimes the people running these trials allow another oncology department to run it there but adhere to various requirements and reporting. ColoradoKik and Div, check out this link for details.
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ColoradoKiKi, I found out when i thought i hurt my rotator cuff or pulled a muscle at work. Went to orthopedic doctor who ordered an mri. Mri revealed the mass which was wrapped around my brachial plexus nerve and limited my arm movement. So sorry to hear about your diagnosis but glad you found us here.
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Mike3121, I'll definitely look into that, I seen a number on the link so maybe that'll be a good place to start, thank you for all the information I really appreciate it. I seen in some of your earlier posts that your wife battled through this, how is she doing? I hope she's well. I'm married and would love to hear from your experience what helped you cope with everything, I'm sure it'd be nice for my husband to hear your perspective, support is scarce for us ladies but even more so for our spouses.
DiV, that's horrible to know it came back and in such an unusual location, is it painful? I wish there was a way you didn't have to sacrifice your arm or ribs to this stupid cancer, you inspire me to continue pushing forward and I will keep you in my thoughts. I'm happy to have found you here although I wish it was under better circumstances. Stay strong and beautiful!
I'm going to be starting dose dense AC chemo followed by Taxol and I seen in both of your signatures that that's a treatment you've been through is there any advice I should know before I start and how was your experience? How were the side effects and was there anything that helped? I'm grateful for both of your responses, I hope you both have a wonderful day!
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ColoradoKiKi hi, in response to ac and taxol. With ac i had a little queasy stomach but did not get sick they will give you medication for nausea if not ask. With the taxol i had a little neuropathy in my feet and hands but that went away too. I would get tired from the ac and need naps but other than that i didn't have any problems. Can you fill in your diagnosis so we all know a little bit more? You said you have Metaplastic. Do you know the whole name of your cancer?
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ColoradoKiKi, My wife's estrogen positive turned triple negative and the last PET scan shows many very small mets to her spine. She starts on Xelodia this Friday. From what I gather Xelodia can be very effective for many people and it works against estrogen positive and triple negative. My wife tolerated AC and it, for a time, wiped out all the cancer. She had an awful reaction to the taxol while in the infusion room. Passed out, stopped breathing, what a mess.
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Mike3121 I'm so sorry to hear about your wife's reaction to taxol and the mets to her spine. Praying for her. My surgery is scheduled for March 20th. Getting more nervous as surgery approaches.
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DiV, it sounds all though you were a champ through chemo, you are so strong! I'm praying I can make it through okay, I'm not expecting it to be easy but I hate to depend on people so this is definitely going to take me out of my comfort zone. I'm sorry to know your nervous about your upcoming surgery, I pray you find some silver lining to this all, I wish there was a way to help you but I will continue to keep you in my thoughts.
My diagnosis is Metaplastic Carcinoma Breast Cancer poorly differentiated with predominantly squamous differentiation, it's a grade 3 with slight estrogen receptors(which is extremely odd), progesterone negative and HER negative this is usually TNBC but since the ER isn't significant it's still being treated the same. No one has specifically told me my stage but in the paperwork from the surgeon's office he classified me as a clinical stage T4N0. Due to medical negligence I am barely going to start treatment even though I should have had this diagnosed since March 20, 2016. Guess when your 25 and find the lump yourself even with multiple substantial symptoms that should be of alarm they still fail to make it a priority.
Mike2131, I'm very sorry to hear the news from your wife's last PET scan and that she'll once again be going through chemo, but at least it sounds like what they're going to be using will be a good defense, I wish the both of you the best through your continued battle, she's a real warrior and you seem to be a great support for her. That is so scary what happened with the taxol, I'll be praying this goes much smoother, hopefully with no health scares, that has to be the worst going through something that unexpected.
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Hi everyone!
Coloradokik how are you doing? Have you started your treatment plan yet? Hope all is going well for you. Your in my thoughts and prayers.
Mike2131 I'm so sorry to hear that your wife has to go through this again. Know that i'm in her pocket and praying for her.
My surgery went well. I think it's cause i went in with a positive attitude and did what i had to do. I'm recovering well. The phantom pain is a pain in the ass but i try to stay busy so i don't think about the pain. I get ct scan on the 23rd. I'll get a ct scan every 3 months.
Stay positive everyone. Get out and enjoy the summer!
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I was diagnosed stage 4 spindle cell metaplastic triple negative breast cancer recently. Is there anyone else out there?
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Hi Bettybites! I also have metaplastic spindle cell. My oncologist says I'm stage 3 cause i have recurrence to the chest wall. I just had to have my arm amputated March 20th due to tumor wrapping around brachial plexus nerve.
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Can anyone tell me what the comment section on my path report means? What would be my sub-group?
I was just diagnosed with Metaplastic carcinoma of the breast. I'm not sure of all the subdivisions of this disease. On my path report it states:
Histologic Type: Metaplastic carcinoma - see comment.
COMMENT: The malignant tumor is predominantly composed of squamous cell carcinoma with a minor component of spindle cell mesenchymal malignancy.
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Hi All,
I am hoping this is the right thread. I just got additional information back from my post-surgical pathology report, and I have a heterogenous tumor.
Approximately 15% is metaplastic with the rest being ER-/PR-/HER2+ IDC. We are running the FISH test again (positive result was from my initial biopsy pre-surgery) with the assumption that parts of the tumor are triple negative.
I'm scheduled to start ACT plus herceptin in a couple of weeks. ACTH should cover the majority of the tumor, but I'm worried about the metaplastic cells.
What's worked for folks? Anyone else have this type of heterogeneity?
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hi just thought I'd see how your doing now, my daughter who's just turned 24 has also just found out she has mpbc, sending lov
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Hello All,
I have not been out here for some time. I had DCIS back in 2008, everything went great until this past summer when I found another lump. It was diagnosed after the ultrasound guided biopsies as just a cyst. So I had surgery to remove it. Then the pathologist came back with a Metaplastic Carcinoma of the breast. Really!?! Then I find out it is best to leave the tumor so that they can see if the tumor even responds to the chemo because this type of cancer is notorious for not responding to any chemo. Well, too late for that! So now, after being told that my weakly positive status for the ER/PR and negative for Her 2, I will be treated as if I were a Triple Negative type. So that meant AC Dose Dense for 4 treatments every two weeks and now I'm doing Taxol at #5 of 12. I just wanted to get out here to see how others are doing with this treatment. I made it through the AC without any problems. And thus far I am doing OK on the Taxol. Round #5 had to be postponed for a week due to my low blood counts, so I am hoping that tomorrow's trip to get #6 will actually happen and I will be half way through this part.
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