Invasive Metaplastic Breast Carcinoma

My name is Cherie and I have been diagnosed with metaplastic carcinoma.

After a lumpectomy on September 7th of a supposedly benign tumor, my surgeon said, “We have no idea what this is” and sent a sample to  Vanderbilt University. The tumor was, in fact, not benign, but a malignant. The pathology report included a diagnosis of metaplastic breast cancer. I searched for a pathologist to verify the diagnosis, and Dr. Paul Rosen in New York agreed to analyze a sample. He confirmed the diagnosis, and I have been pursuing treatment options since receiving his confirmation at the beginning of October.

So far, I have had a PET scan and met with an oncologist and a plastic surgeon. The PET scan indicates that the cancer might have spread to my lungs. The oncologist recommends a radical mastectomy, followed by 24 weeks of chemotherapy, approximately 3 times per week, and 7 weeks of daily radiation. Surgery hasn’t been scheduled, and no plan for pursuing these treatments has been made. Despite this, I am being proactive about learning what I can and being vigilant about getting responses and information from the medical community.

I have an appointment with a team of 3 doctors on October 28th. I’ll be meeting with an oncologist, a surgeon, and a radiologist at that time.

I hope these doctors recommend a treatment plan that we can implement soon, which could be completely different from the one I outlined above, and give me a prognosis. So far, doctors have told me very little, and I only know as much as I do about this disease because of the information I’ve found on my own.

I will continue to share any information I learn, in the hopes that it will benefit others. I live alone and am disabled . I have 2 daughters, both of whom live in different towns and are trying to help me.   No doctors want to talk to me because they are trying to study this disease because they have no information and are researching it. It feels like they are intimidated by it. I’ve had the lump 4-5 years and have been misdiagnosed, so I know I am limited with time.

I'm so sorry to hear about your situation.  I was diagnosed with metaplastic carcinoma last March (lump 5 cm) but scans were clear, as well as my lymph nodes so we believe it had not spread.  I have since had 6 chemo treatments of TAC (which reduced my lump to 1.8 cm), a bilateral mastectomy, and have now completed 24 out of 33 radiation treatments.  Finding out information about metaplastic carcinoma is almost impossible, but through this message board I have learned that I am not alone.  There are several of us battling this rare cancer and I have been keeping in touch with them.

I hope that you continue to stay in touch and pass on whatever information you learn.  I wish you the best as you battle this and hope that you feel free to contact me to share feelings, ask questions, or whatever!

I'll be pulling for you!

Chris

Hi Cherie,

In addition to seeking out treatment recommendations from the drs you've already seen, I hope that you will consider complementary and/or alternative therapies.  There are many natural substances, including herbs, foods, and supplements that can combat cancer, either in combination with chemo, radiation and surgery, or by themselves. Things like IV vitamin C, curcumin, and paw paw, to mention a few.

If you can get access to a naturopathic oncologist that would be wonderful. If not, seek a consult with a holistic practitioner - a naturopath, osteopath, homeopath, or someone who practices ayurvedic or traditional chinese medicine. 

The home page on Cancer Compass includes contact information for Cancer Treatment Centers of America, the organization that sponsors  this board. You could contact them and ask for information on holistic practitioners in your area that might have knowledge of treating this cancer.  You might also ask if CTCA has anyone who has treated it and could at least give you advise.

Regardless of what treatment you choose, I hope you will seriously consider starting on a formal cancer diet. Excellent references for these can be found at www.cancertutor.com, as well as a wealth of information on alternative therapies.

Another good site for information on complementary and alternative therapies is www.lefcancer.org

Also, regardless of what therapy(s) you choose, there is something you can do right now to start fighting the cancer.  There are five supplements that major proponents of alternative therapies agree are absolutely essential to fighting cancer.  These are common inexpensive supplements easily found at health food stores, herb shops, and online:

selenium 200 mcg/day (can take up to 400mcg.day for several weeks to get yourself jump started)

magnesium 200 - 250 mg/day (max 350 mg/day)

zinc 50 mg/day (could take up to 100 mg/day for the first several weeks)

manganese 10 - 15 mg/day

calcium 1200 mg/day

you also need adequate vitamin D-3 to be able to absorb and utilize the calcium - 1000 iu - 2000iu /day is usually adequate for most people - 10,000 iu is max (our bodies manufacture vitamin d-3 if we get adequate sunlight - 15 - 20 minutes/day, but I do not believe in leaving this to chance)

Since you are disabled and do not have family living in the immediate vicinity, I recommend you seek the assistance of a cancer support group.  From what I understand support groups specifically for rare types of cancer are few and far in between, but groups that offer support for breast cancer can be found, and certainly groups that offer support for all cancer patients are easily located.  Your dr may be able to give you good contact information, or call the patient advocate's office at the local hospital and ask if they can direct you to someone.  The American Cancer Society also may have information on local support groups. 

Getting plugged into a support group can make a lot of difference. Many times there are volunteers who are willing to help people get to and from chemo, to provide food and other services, and they are great people willing to lend an ear and advice when things are rough.

If you would like to get a quick idea about some other simple things you can do to start beating this cancer while you wait, you are welcome to look at my blog.  I designed my own herbal regimen for estrogen-receptor positive metastatic breast cancer - it has kept me in remission. I do not recommend it as prescription for anyone, but rather have published it as an example for others of the common foods, herbs and supplements that can be effective in fighting this dread disease, as well as boosting the immune system and improving over-all wellness.  I have tried to emphasize those things that should be safe and hopefully effective for most people.  You are also welcome to look at anything else on my blog that interests you:

http://motherearthtreasurechest.blogspot.com/2008/09/my-pers

Please feel free to contact me through the link on my blog if you have questions or need someone with whom to talk.

I am wishing you the best.

Sincerely,

Tre

Hi Cherie,

I had a little bit of time before going to bed, so I started looking at invasive metaplastic breast cancer online. I found this article at Dr Susan Love's Research site - she is one of the foremost researchers on breast cancer in the country (a breast cancer survivor herself, she is dedicated to eradicating breast cancer within her lifetime.)  I am going to copy in the article so you can easily read it, but I want to point out that it mentions that invasive metaplastic breast cancer is treated in the same way as other invasive breast cancers, and many times in the same way as non-invasive breast cancers.  If your drs are having such a hard time deciding what to do, it sounds to me like you should find a way to get to a major cancer treatment center - perhaps like a university hospital?

Also, before I copy in the article, I want to mention a few groups that perhaps aren't routinely considered as references for support, but you might check with that might know more about this rare type of cancer, or who can maybe point you to a support group in your area.  Unfortunately I do not have contact information for most of these groups, but I am sure you can find it online:

Reach for Recovery (they deal with mastectomy patients post-operatively, but my Reach for Recovery representative was able to point me to several good support groups in my local area)

Y-ME - a volunteer group consisting of breast cancer survivors

Susan G Komen Foundation (I see there is at least one article about your rare type of cancer on their site - I will try to look at it soon)

National Breast Cancer Coalition:   www.stopbreastcancer.org

Ok, here is the article I found on Susan Love's site, plus the URL for it:

http://www.dslrf.org/breastcancer/content.asp?CATID=68&L

Metaplastic Breast Cancer

I was just diagnosed with metaplastic breast cancer. What does this mean?

Metaplastic
breast cancer was officially recognized in 2000 as a distinct type of
breast cancer. It is a rare type of cancer, representing less than one
percent of all invasive breast cancers.


Breast cancer cells typically look like either the ductal or lobular
cells from which breast cancers arise. In contrast, metaplastic breast
cancers contain several different types of cells not usually seen in
breast tumors.


Metaplastic breast cancer is staged the same and treated the
same as other forms of invasive ductal breast cancer, and the prognosis
is the same as well. As with other tumor types, metaplastic tumors are
tested to see whether they are hormone sensitive (ER or PR positive) or
HER2-positive. Those that are hormone sensitive can be treated with
hormone therapies like tamoxifen or an aromatase inhibitor, while those that are HER2-positive can be treated with Herceptin.



A recent analysis
of close to 900 cases of metaplastic breast cancer reported to the
National Cancer Database between 2001 and 2003 found that women with
metaplastic breast cancer tended to have larger tumors than women with
typical invasive cancers. However, they were less likely to have had
the tumors spread to the lymph nodes. Metaplastic tumors also tended to
have a higher grade and to be ER/PR-negative. As a result, women with
metaplastic breast cancer appeared to be more likely than women with
typical invasive breast cancer to have a mastectomy and chemotherapy.



References:
Pezzi, CM, Patel-Parekh L, Cole K, et al.
Characteristics and Treatment of Metaplastic Breast Cancer: Analysis of
892 Cases from the National Cancer Data Base.
Annals of Surgical Oncology 14:166-173 (2007).

Hi Cherie,

I found some more stuff online for you, included below.  In looking thru articles I have seen that women are being treated with the same drugs as for other invasive carcinomas, but because this is a more aggressive cancer, the treatment needs to also be more aggressive.  Expect that your doctors will be recommending maximum doses, as well as maximum radiation.  If they DO NOT seem to be approaching this cancer aggressively, I would recommend you get a 2nd opinion, from a major cancer treatment center if possible.

I wish you well - please let us know how things go.

Sincerely,

Tre

http://metaplasticbreastcancer.org/  (This site has stories from survivors - Marcia's story has a lot of good info on getting thru chemo, finding help, etc:  http://metaplasticbreastcancer.org/?p=21#more-21 )

talks about metaplastic breast cancer and gives phone #'s for Y-ME:
http://www.y-me.org/information/types_of_breast_cancer/metap

discussion page on this type BC, lots of links and some names of docs
http://community.breastcancer.org/topic/72/conversation/6986

Susan G. Komen Foundation site about getting support
http://cms.komen.org/Komen/AboutBreastCancer/Support/3-7-4-1
(has recommendations and a phone # for Komen breast care helpline which works to help women find support locally)

The following is an excerpt from a Cancer Compass message thread about metaplastic breast cancer in 2004.  The thread is 7 pages long - I skimmed through for info that might help you, and found this - might be worth asking about:

"If the tumor can been removed surgically from the breast and has not metastasized, all the literature we have found says that conventional chemotherapy (such as adriamycin-cytoxin then taxotere), plus radiation, has a good chance to prevent recurrence. If it does reappear in the lungs, consider early surgery, which is risky but may be completely curative if done early enough.

There is new evidence the p-63 gene is active in metaplastic cancers. This gene is also active in non-small cell lung cancer ("NSCLC") and certain other cancers. NSCLC is the most common form of lung cancer from smoking. The latest thinking seems to be that drugs for NSCLC, such as Iressa is hoped to be, may also work for metaplastic breast cancer that has metastasized.

One promising new treatment combination is Avastin with Tarceva. Another promising combination seems to be Avastin plus Abraxane.

This is pretty technical, but here is a web site with references on what is known about p-63 to date:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=gene&cm "