metaplastic carcinoma

mission-4-mom

metaplastic carcinoma

mission-4-mom

Hi everyone, my mom was diagnosed finally after two 1/2 years of abnormal mamograms and ultrasounds but always coming back with benign biopsy. until this november 07 after fourth bx finally got told the day before thanksgiving that it was for sure malignant, but the doctor at uams sent her bx to vanderbilt university for diagnosis. when that report came back, we were told she had metaplastic carcinoma, very rare, very little known about it apparently. Mom had a lumpectomy on Dec 7th. When we returned for follow up and treatment reccomendations the doc told us that her tumor was very small 0.5cm and that she only needed 6 wks of whole breast radiation. Mom was overjoyed, because she feared chemo so much. I later found out that this surgeon was not an Oncologist, and after talking to several people made her an appt with two seperate Oncologists in our area. They both say she definitely needs chemo. They say that the first doc has the size wrong and that she did not account for over two years worth of biopsies being done, each time removing part of the mass. and that the original ultrasound estimated size to be 2cm. I am so confused, I have my moms path report and it has so many numbers on it, but at the bottom under final it says tumor size 0.5cm invasive component, which is what the doctors at the first hospital went by. Does anyone have experience with metaplastic carcinoma. moms is mixed type-mesenchymal and epithelial components. The Oncologist in our town wants to give her 4 doses of adriamycin and cytoxin (sp?) 3 weeks apart and put in a triple lumen catheter in her chest for treatments. I just keep thinking the first doc said no chemo, she said "the team" reviewed moms case and made that decision. would there not be an Oncologist on the team? I dont want her to go through something if it is not absolutely neccessary. but who do you trust? How does this sound to anyone else? 

snowyday

Hi Mission4mom:  I would call the hospital and ask who exactly is on the "team" and what are their credentials.  I think that I would go with what the onc says and do the chemo, it's a pain but kills cancer cells the best.  Good luck for your mom. Pearl49

Babyface

Hi there,

    Dont know quite where to begin, and dont know how much info you wont so I'll start off slow, and check this board in a day or two to see if you need more info. I was diagnosed in Aug/04, with what my original biopsy showed was a run of the mill IDC. After my surgery, and final biopsy my pathology was metaplastic BC with all sorts of variations(btw, grade 3 of course(think all metaplastics are )2.3 cms, er/pr neg, node neg, her2neu neg). On my second opinion it came back as carcinosarcoma. I took Shirl's advice on this board and sent it to Dr. Rosen(who wrote the book on breast pathology) and he confirmed the original path.

   Let me start by saying that as far as I know at any given time there are probably only between 300- 600 women with metaplastic BC . This is not something that pathologists see often, some never, so I strongly suggest a 2nd opinion on the pathology. The pathology can effect treatment decisions esp now when some institutions are doing more targeted therapy, and there is little if any evidence to show that standard chemo does much for metaplastic BC. That DOES not mean your mom shouldnt do chemo...I did, but the problem is that because we are so few in numbers, no one really has done studies to look at the effects of chemo in metaplastic cases.  I was orignally going to do 4 AC's(same as your moms) then 4 Taxols, but I had a very bad reaction to the AC(dont panic...most dont and Im the poster child for unusual side effects)so I ended up pulled off the chemo. I also did rads of course since I too had a lumpectomy...Im presuming that your mom will also be having rads since that is standard with a lumpectomy?

  There are many studies which do say that metaplastic BC is pretty darn aggressive, so you do want to hit it hard. The good news is that the risk of recurrence does seem to drop after the first few years so that it really becomes no worse than run of the mill bc after that.

  In the old adage if I knew then what I know now....I can tell you that although I have a good medical team I have spent some time getting 2nd opinions on various things at the Mayo clinic and elsewhere because of my unusual diagnosis. In my research I have recently become aware of 2 Dr.'s who are doing some work specifically on metaplastic BC. Dont know where you are but here is some info on them(I tend to follow this stuff since knock on wood , never know if I may need to know at some point). With most of these specialists you are able to send your records for a telephone consult second opinion. Not sure about MD Anderson though.

   First Dr. Christopher Pezzi, Abington Memorial Hospital, Pennsylvania, Surgical Oncology. Here is a link to a study he was principle author of recently on metaplastic BC

 http://www.annalssurgicaloncology.org/cgi/content/abstract/14/1/166

 There is also at MD Anderson in Texas, Dr. Bryan Hennesey...who by his web page as you will see has an avid interest in metapastic BC...Might be worth a consult...

http://utm-ext01a.mdacc.tmc.edu/dept/pub/resrepv2.nsf/all+departments/41E218AD0706A8538625734E0077230E

 I almost forgot to add....you didnt give your moms age which with chemo does make a difference. If she's 40, 50 , 60, or even older in great health chemo is definitely something I would think you'll find most onc's would be looking at with metaplastic. If on the other hand she is in poor health or quite elderly that might change the decision making process. Hopefully this will get you started....I have about 50 or 60 cases on metaplastic BC, on my puter so if you need something specific , or just to chat feel free to ask

Hoping_For_A_Miracle

Hello,

I too have just been diagnosed with Invasive Metaplastic Carcinoma, High Grade. I have just had my partial mastectomy and found out on Wednesday at my follow-up to my surgery. I was really hoping to be told I had the "standard" type of breast cancer, instead I'm told this - for which there is very little information about. I went to the library yesterday to see if there was anything in print about it and came home very depressed with the couple of paragraphs I could find - didn't feel very hopeful. My husband came across your blog, and we both got a bit of a boost knowing that we aren't alone. I have now been referred onto our Cancer Clinic, and will let you know what type of treatment I have recommended for me (I will definately be pushing for chemo now - the book said it was radiation only - I would like to fight this with every option there is available whether it has been proven to work or not - so we will see what my oncologist will say/recommend). My report also included a paragraph at the bottom saying my tumor showed "malignant epitheliod cells along with prominent spindle cell component and prominent cartilage formation" did anyone else's include this as well? Thank you for the hope back!

TenderIsOurMight

I wish you and yours all well with this unusual type of breast cancer. Babyface, you are a wonderful resource of experience, knowledge and support!



Just noticed Hoping for a Miracle mentions a paragraph at the bottom with "prominent spindle cell component" and it caught my attention.



The presence of spindle tumor cells may be useful clues in diagnosing spindle cell carcinoma of the breast with a neuroendocrine (nerve cell-hormonal) component.



I mention this because there is much clinical interest of late in neuroendocrine components of tumors and whether they too may respond to newer biologic therapy such as bevacizumab (Avastin)which may inhibit tumor blood vessel growth (angiogenesis) as well as to tumor cell response to growth factors, which may be inhibited by the protein tyrosine kinase inhibitor family.



Biologic therapy is truly the latest addition to cancer patients armamentarium of treatments, and undergoing active investigation in clinical trials.



Unusual names to these drugs, yet wished to mention them as they differ from chemotherapy and often are used concomitant with chemotherapy.



Good luck to all of you. Welcome to you who are new. I think you'll relish the support from this site.

Tender

Babyface

Hello,

  Dont feel like you're alone Hoping. Although this is a rare bc there are a few metaplastic ladies on the boards. One, that Im aware of , Bridget, started a metaplastic support group but Im not sure where that all is now. Im sure when she sees this she will respond too

   I have to be honest , I have not heard of radiation only for metaplastic. In all the studies I looked at(far too many), they all seem to indicate chemo unless the tumor is really, really small, but hey Im not a Dr. and if thats what your oncologist is saying then I would want to know why, and then perhaps get a second opinion.

Here are a few of the "case studies" reported on MBC. You'll note that the results are all over the board, which imho is an indication that they still dont really have a handle on these things yet So when you hear that MBC, has a poorer prognosis, remind yourself that for every case that says that, you'll find one that says it doesnt, and another that will actually say, that because of the new targeted therapies, mbc might actually have more to fight it with than ordinary BC. Anyway here are the links in no particular order:

http://www.ncbi.nlm.nih.gov/pubmed/15868445?dopt=Abstract

http://www.ncbi.nlm.nih.gov/pubmed/2227922?dopt=Abstract

http://www.ncbi.nlm.nih.gov/pubmed/2776108?dopt=Abstract

http://www.ncbi.nlm.nih.gov/pubmed/10370783?dopt=Abstract

http://www.ncbi.nlm.nih.gov/pubmed/10440759?dopt=Abstract

http://meeting.ascopubs.org/cgi/content/abstract/23/16_suppl/848

That ought to get you started...Lots more where they came from.

Just so you know Im not on here that often anymore, , which is a good thing from my point of view, in other words Im not focusing as often on BC and getting on with living, but that also means if you post I may not see it for a bit. If you'd like to talk send me a pm, and I'll give you my email and my phone number so you can reach me at any time. I am going away on holidays though from Feb 13th to Mar 8 so dont try and find me then....I'll be working on my tan....have to get that radiated boob matched up again

Hoping_For_A_Miracle

Hi Babyface

Thank you for all your information - it is very much appreciated (I will read your links tonight after I get home from work).

I haven't actually talked to my oncologist yet (still waiting for my first appointment at the cancer clinic) - the radiation only issue was what I had found in a book and kind of freaked me out.

So far I have only had the partial mastectomy (just over 2 weeks ago) - still healing from that (did you get rib pain after your surgery?).

Everything I have been reading so far has indicated that they should treat it the same as any other invasive cancer - so I am assuming I will get chemo as well (hard to imagine that I am hoping for that hey - boy what a twist our lives can take in a moment!).

I would love to be able to e-mail you and have a chance to talk and ask you about different things I am about to go through. Having a ready source of understanding from someone who has been in my exact shoes at one time would mean the world to me.

My e-mail is: maiermob@shaw.ca and my name is Sheila.

I won't expect to hear from you until after your holiday (ahhh...now that is a thought that makes me envious....sigh....) Have a great trip and thank you for putting yourself out there to help those of us who are going through something that must have been very hard for you the first time.

Sincerely,

Sheila

Babyface

Ive sent you an email

LookingUpwards

Thanks for all the input I have read. It is hard to find meaningful information on this.

I was dx with metaplastic carcinoma in Nov 2007. The tumor was 5 cm, triple negative and grade 3. I had a mastectomy due to the size of the tumor. My axillary lymph nodes were negative however my onc wanted a PEt scan.  Unfortunately it showed my internal mammary lymph nodes were involved as well as a tumor on my liver. So far I have had 4 cycles of AC and will start 4 cycles of Taxol this week. All 2 week dose dense cycles. I also had a radio frequency ablation to my liver last week (they tried to burn off the tumor). After all the chemo they want me to have rads to my chest. 

the best I can tell I have good Onc. He has called several different drs and presented my case a  BC conference at the hosptial.  He says this is a very aggressive tumor and has to be treated very aggressively.   He said its rare for it to metastize directly to the liver. Usually it goes to the bones or lungs first.

I am not sure where all this goes but continue to look to God for strength.  The frustrating part is that when I talk to people they only know about the common "garden variety" early stage bc so I feel like they do not understand. 

Hopefully I haven't rambled too much but it is nice to know I am not the only one who has this kind of BC.

I will keep you all in my prayers. 

Hoping_For_A_Miracle

Hello LookingUpwards,

I will be going for my first visit with my oncologist on February 20th where I am hoping to find out what my next step is going to be in fighting this very aggressive cancer (because I was diagnosed just before Christmas, everything seems to be taking forever to get going...). I am hoping that he is going to know what to do (as from what I have seen posted on the web - there isn't much for them to plan from and seems to be trial and error in most cases).

Can I ask for your doctors name as well as where you are being treated (in case my doctor wants to contact other doctors who have treated others with the same type of cancer)? Also can you give me the components of your particular tumor (mine is composed of spindle cells and cartlidge).

I found a blog on the internet and have put together about 5 pages of treatments of other patients (alot of them are from 2005 so treatment has probably changed) which I am hoping my doctor will be interested in reading - alot of the stuff freaked me out and was hard to type out - but I want him to know the good and the bad - I have now erased those images from my mind and am trying to continue to stay positive.

I have also joined the "Rare Cancer Alliance Support Group" http://survivor-support.rare-cancer.org/forum/ and have posted there under "GonnaBeatThis". If you would like to get in touch with me to talk and support each other, let me know and I would be happy to. Babyface has been a great support to me and I can tell you that even if no one can help me, just having another person to talk to who is going through (or has gone through) exactly what I am going through was a huge weight off of my shoulders.

When I find out my next steps, I will post them here (I am hoping mine hasn't spread - but because it is so fast growing - who knows - guess I will find out that news soon as well).

Take care and good luck!

Hoping_For_A_Miracle

Hello,

I saw my oncologist yesterday, and my next plan of treatment is to be put on the standard breast cancer chemo (FEC - FLUOROURACIL, EPIRUBICIN AND CYCLOPHOSPHAMIDE). I will have 6 cycles (with each cycle lasting 3 weeks - as long as I have no reactions and all goes well, should be done in about 18 weeks).

Because I only had a partial mastectomy and one of the sides of my tumor was close to the skin and only had 1mm clearance - my oncologist is not comfortable with this small amount of clear tissue, so when my chemo treatment is over I will have to go in for more surgery - either the surgeon will take off more skin and tissue from the area already taken or they will take off the whole breast. My oncologist is concerned because of the unpredictability of where and how this particular type of cancer spreads (and if he is concerned, I'm concerned and am okay with whatever surgical decision all the doctors agree on).

While he of course can't give any outcome predictions (because they aren't known) - he wasn't all doom and gloom either, and I felt much better after my visit than I did before.

As he said, as long as we do everything medically possible to help cure ourselves - then we have done all we can and the rest is up to a much higher power!

barna1

I was diagnosed with metaplastic spindle cell in February and after various appointments that provided limited info and no definite course of treatment, I got a second opinion which recommended  chemo, adriamycin, cytoxin and taxol . Due to other health issues, I declined taxol and haven't started on the others and am not sure I will. I was wondering if you received taxol after you had a problem with the adriamycin. I too am a poster child for weird reactions which is why I haven't agreed to treatment yet. My tumor was 1.3 cm when removed and triple negative. It's so hard to know what to do since there is so little info on this and so little agreement on the part of the medical community. I would appreciate any input you have to offer.Thanks  

barna1

Hi-My diagnosis is similar to yours-had lumpectomy in February-just started chemo this week - got lots of different opinions about tx. options but all different. Am currently on AC-taxol or taxotere comes next then 6 weeks of radiation. How are you doing at this point and what treatments have you had so far?I wish there was more specific info about this and more proven treatments. Hang in there!  

mypinkboa

I was  diagnosed with ER+ stage 0 DCIS on 2/19/08, and opted for a double mastectomy w/immediate reconstruction because of my age (30) Sx: 3/25/08.  Post-op path report indicated a triple-neg 1.3 cm, stage 1, grade 3 tumor Dx as Invasive Metaplastic Carcinoma.  Because of the rare Dx, my onco sent slides to Dr. Rosen.  He re-classified as IDC with squamous cell metaplasia, but is still considered to be Invasive Metaplastic Carcinoma.  IMC was 0.3 cm from deep margin.  I began chemo on 5/1.  Taxotere and Cytoxan x 4, 3 wks apart.  After a lot of researching, I convinced my Dr. to up the T/C to 6 treatments, and I am seriously considering doing dose dense on the final 3.  My onco and Dr. Rosen do not feel that rads are indicated.  I am starting to research long term treatment, and am wondering if Avastin may be an option.  Has anyone found any data on long term treatment of IMC?  Does anyone know of any clinical trials for IMC patients?  And if it's alright to ask, how old is everyone on this board?

Linnie

Hi Mypinkboa,

 I was diagnosed with Metaplastic Carcinoma February 2008 with a right breast mastectomy the first of March.  I am going through ACT chemo dose dense and am part of a clinical trial through University of Colorado Medical Center , Eastern Cooperative Oncology Group via the National Cancer Institute.  It's a three arm blinded trial with Avastin in conjunction with ACT.  One arm receives placebo, one arm Avastin throughout the ACT where the study is then unblinded.  The third arm receives ongoing treatment with Avastin.   

The study title is:  A Double-Blind Phase III Trial of Doxorubicin and Cyclophosphamide followed by Paclitaxel with Bevacizumap or Placebo in Patients with Lymph NOde Positive and High Risk Lymph Node Negative Breast Cancer   E5103

I am fairly certain along with my Onc and head of research at St. Mary's Hospital in Grand Junction that I am receiving the Avastin as I have almost every side effect including red urine after treatment.

 My heart goes out to all of us diagnosed with this rare disease.  I go in and out of denial.  Today I am reading about more case studies which really depresses me.  I'm not ready to die and have two daughters 19 and 15.

 I am a 46 year old white female with an occurence of DCIS Insitu non-aggessive BC two years ago with radiation treatment.

 Linnie

Lucky

Hi

I was dx with metaplastic carcinoma July of 07...I had an immediate lumpectomy to remove the 5.5 cm mass.  Luckily my surgeon was able to report that tests proved I had clear parameters. But since the mass was so large and so close to my chest wall we decided on the following tx. Once I healed from the lumpectomy ( only had to be off work for 2 weeks)  I started chemo tx of Adromiacin/Cytoxan....which I tolerated fairly well and was able to continue to work full time.  I did get a 2nd opinion from a team of breast cancer doctors at Ohio State and they agreed on the same tx.  I then started a round of Taxol....which most folks apparently tolerate well....but I was only able to take 10 of the scheduled 12 tx due to having an allergic reaction. My last chemo tx was Feb...I just had bilateral mastectomies  May 12th.  Returned to work June 18th.  I have learned that although Metaplastic cancer is somewhat rare, more and more women are being diagnosed.  The doctors I have dealt with have treated several women with this type of cancer and I live in a somewhat medium size town. My oncologist and surgeon disagreed on the need for the mastectomies....surgeon felt that the lumpectomy and chemo TX was sufficient and agreed that with radiation I had just as good of a chance of beating this than if I decided to have my breast removed. My oncolgist literally BEGGED me to have my breats removed.  Luckily we decided to have both breast removed and found that my right breast had precancerous cells.  I am now 1/2 way through my 33 radiation treatments.  To wrap up this long story both my oncologist and surgeon feel that the chances of the cancer returning is now less than 2%.  I have continued to work full time through all the treatments with the exception of the surgeries....2 weeks for lumpectomy and only 4 for the removal of my breast.  I will consider reconstuction next summer once I feel that I am phyically in better shape and can handle that drama.  So, as aggressive and as large as that mass was in my left breast, I feel that my chances are very good of beating this.  Good luck to all of you dealing with this same issue! I just found this site and am looking forward to getting and giving more feedback!!

LookingUpwards

Dear ones,

Haven't posted for a while. Lots has happened since Feb. when I last wrote.

I did reasonably well on my AC and T regimem until my third cycle of Taxol.  All my counts droped to critcal ranges (red, white and platets) and spent 3 weeks in the hospital with IV antibotics and blood and platlet transfusions.  they did a bone marrow biopsy and found I did not have leukemia or something else but that I was aplastic - my bone marrow was not producing blood cells.  My doctors do not know what happen.  My onc has talked to numerous other doctors and also contacted Mofftit Cancer Hospital and none of the doctors have heard of this happening on Taxol.  It took six weeks for my marrow to start making blood again.  We stopped chemo and I did not have my 4th Taxol treatment.  Has anyone ever had this problem with taxol?

I was to have rads when I completed chemo but because of my bone marrow problem the dr. whould not take a chance on it.  He gave me time to recoperate instead.  I had a pet scan the first week in July and unfortunately I now have multiple liver lesions and more spots in my parasternal lymph nodes.  My onc says that it is not curable at this point but they will try to stablize the disease. Today I started on Avastin and Xeloda. Becasue of my bone marrow problem he is giving me low doses and said he would watch me very closely.  He said because of the metaplastic tumor it would exclude me from most of the clinical trials.  Has anyone else had good luck with treatment for the liver mets?

 I beleive in God and know he is in control - so I keep looking upwards.  You are all in my prayers as I know what you are going through.

Looking upwards

dx Oct 07, metaplastic tumor, stage iv, grade 3, liver mets & parasternal lymph node mets, triple negative, July 08 - more liver and parasternal lymph node mets.

Babyface

Hi all,

I hope you're all doing well. Havent been here for a bit since I ve been a bit busy with work, and dealing with this stupid GD infection in my jaw.

Hoping, I hope you're doing well(no pun intended...well maybe just a little...havent chatted with you in a while. 

 Having read some of these posts I cant help but wonder if there isn't something in the make-up of those who have had metaplastic bc that makes us more prone to this unusual form of bc. Barna said she was the poster child for weird reactions, which had me in stitches because that is always my favourite line.Someone else mentioned an unusual reaction to chemo. Well, let's see : I had metaplastic BC, which everyone on my medical team was convinced had spread to the nodes because of the significant swelling I had(no nodes . My drain fell out 4 days after surgery. I had a 1 in 10,000 grade 3 (4 being death)allergic reaction to the AC(or a component of it) and had to stop chemo and do a month of prednisone(never made it to the Taxol) after my skin on my hands, feet and arms along with all my nails fell off and I swelled like a balloon after my 4 th AC .My rad Dr. was convinced I had Lupus when he saw my skin reaction to rads( I didnt thank god ). My pic popped in my arm, and last but not least I ended up with one hell of a dental issue after my chemo which led to osteomyelitis in my upper jaw which they havent been able to get under control(after 6 surgeries) for almost 3 years and Im about to do IV antibiotics and hyperbaric oxygen. Yep I know all about weird reactions....lol. But hey, knock on wood, it's been almost 4 years since my diagnosis, and no BC

 Looking upwards, I was quite surprised to hear that your doc said you'd be excluded from most trials becausee of MBC .The reason I say that is back when I was first diagnosed I had looked into many many (far too many trials both for diagnosis level chemo, and metastatic...panic mode) and found that most trials were open to those with MBC. Have to be honest, that was almost 4 years ago and things may have changed but I would double check that if you are interested in a trial. You can read most of the trial stats on the National listing website. Hope it goes well for you