Pyllodes tumor question

silverchick
silverchick Member Posts: 1
in Breast Cancer #1

I am 44 and have been getting regular ultrasound follow-ups for a fibroadenoma left breast on the diagnonal from the armpit to the nipple. I went to a high risk breast facility and they said it is a classic fibroadenoma meaning the ultrasound features were classic and revealed no clues that it might not be a fibroadenoma. It is the shape and size of a slightly larger vitamin E capsule. Ove three years it has not grown at all so they said no need to biopsy. I asked well when do you biopsy and they said if it appeared suddenly. To me it did but I also was working out and lost some weight and developed my pec muscles so I thought maybe it was there all along. What is more disconcerting to me is that below this adenoma, there is a larger, smooth area that feels about 2 cm wide by 1.5 cm high but thinner like 1 /2 an inch. No one can feel it. There is similar feeling tissue in the other breast but much smaller and it seems less large after my period. The doctor said that it is connective tissue that is fibrous hence the term fibrocystic that is common around an adenoma. It has not gotten any larger, but I feel it move against my rib cage, meaning it is not fixed. Now no one can find it on ultrasound. I am thinking of having the adenoma (sm one) removed but my doctor says they don't do that if it is stable and not growing. My gyno who said it was a fibroadenoma now says it could be a phyllodes. I told my breast doc and he said no that is so rare. QUESTION: do phyllodes tumors always grow ? or do they stabilize at 2-3". Whatever I have has not grown over three years. Obviously, I need to go to a facility that has more experience w phyllodes like John hopkins and if anyone else knows a good facility in the NE- I am in New York, that would be great. Since no one can feel the area that I feel below the adenoma and near the rib cage nor can they find it on ultra sound then maybe I need an MRI. I appreciate if any one has information to share about their experience of symtoms and getting diagnosed because that is the stage that I am at. Did you get diagnosed w an MRI, US, etc. could you feel it, how did it feel? Where do these tend to be located in the breast? deep in the breast? Did you do just a core biopsy or is full excision the way to go? I read that this type of tumor if malignant bypasses the lymph nodes and goes straight through the circulatory system. The doc did a lymph exam and said the lymph nodes felf normal. Thanks for reading this and to anyone who takes the time to answer. Thank-you for sharing and best of luck to everyone. 

Comments

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #2
    From - John Hopkins medicine - website

    Phyllodes Tumors


    Most Phyllodes tumors are benign, but 10 percent are malignant (cancerous). Cancerous Phyllodes tumors are an unusual presentation of breast cancer. These tumors are a form of sarcoma because they grow in the connective tissue of the breast, not in the ducts. This cancer is so rare that a confirmation by a second pathologist is required.

    What are the symptoms of Phyllodes tumors?

    These tumors will usually present as a smooth lump felt beneath the skin. The breast may become red or warm to the touch. These tumors can grow very fast, so it is important to have them evaluated as soon as possible. Symptoms can also mimic those of other types of breast cancer.

    How are Phyllodes tumors diagnosed?

    Same Day Results

    At our Breast Center, most women can learn within 24 hours of being seen by our team of breast cancer specialists whether they have breast cancer. We follow strict guidelines for biopsies and pathology reports. Our patients will receive the probability of cancer immediately following their biopsy procedure, and a pathology confirmation usually within 24 hours.

    Learn more about the steps of diagnosis, including:

    What is the treatment for Phyllodes tumors?

    While the tumors are most often benign, it is still critical to remove the entire tumor. Even if one cell is left behind, it will grow back. Treatment involves excision of both the tumor and a wide margin of healthy tissue surrounding the tumor. For malignant (cancerous) tumors, depending on the stage and growth of the breast cancer, your physician may recommend a combination of any of the following:

    What is the prognosis for Phyllodes tumors?

    For women with a malignant Phyllodes tumor, the prognosis depends on size, prognostic factors and other information obtained from the pathology results. Your oncologist will review this information with you.

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #3
    VickiSam said:

    From - John Hopkins medicine - website

    Phyllodes Tumors


    Most Phyllodes tumors are benign, but 10 percent are malignant (cancerous). Cancerous Phyllodes tumors are an unusual presentation of breast cancer. These tumors are a form of sarcoma because they grow in the connective tissue of the breast, not in the ducts. This cancer is so rare that a confirmation by a second pathologist is required.

    What are the symptoms of Phyllodes tumors?

    These tumors will usually present as a smooth lump felt beneath the skin. The breast may become red or warm to the touch. These tumors can grow very fast, so it is important to have them evaluated as soon as possible. Symptoms can also mimic those of other types of breast cancer.

    How are Phyllodes tumors diagnosed?

    Same Day Results

    At our Breast Center, most women can learn within 24 hours of being seen by our team of breast cancer specialists whether they have breast cancer. We follow strict guidelines for biopsies and pathology reports. Our patients will receive the probability of cancer immediately following their biopsy procedure, and a pathology confirmation usually within 24 hours.

    Learn more about the steps of diagnosis, including:

    What is the treatment for Phyllodes tumors?

    While the tumors are most often benign, it is still critical to remove the entire tumor. Even if one cell is left behind, it will grow back. Treatment involves excision of both the tumor and a wide margin of healthy tissue surrounding the tumor. For malignant (cancerous) tumors, depending on the stage and growth of the breast cancer, your physician may recommend a combination of any of the following:

    What is the prognosis for Phyllodes tumors?

    For women with a malignant Phyllodes tumor, the prognosis depends on size, prognostic factors and other information obtained from the pathology results. Your oncologist will review this information with you.

    From: American Cancer Society

    Phyllodes tumors

    Phyllodes (also spelled phylloides) tumors are rare breast tumors that, like fibroadenomas, contain 2 types of breast tissue: stromal (connective) tissue and glandular (lobule and duct) tissue. They are most common in women in their 30s and 40s, but they may be found in women of any age.

    The tumors are usually felt as a painless lump, but some may be painful. They may grow quickly and stretch the skin. They are often hard to tell from fibroadenomas on imaging tests, or even with fine needle or core needle biopsies.

    When seen under a microscope, the main difference between phyllodes tumors and fibroadenomas is that phyllodes tumors have an overgrowth of connective tissue. The cells that make up the connective tissue part can look abnormal under the microscope. Depending on how the cells look, phyllodes tumors may be classified as benign (non-cancerous), malignant (cancerous), or borderline (looking more abnormal than benign tumors, but not quite malignant). These types of tumors can behave differently.

    Phyllodes tumors are usually benign but in rare cases may be cancerous. Less than 5% of these tumors spread to other areas, such as the lungs, or come back (recur) in distant areas after treatment. In the past, both benign and malignant phyllodes tumors were referred to as cystosarcoma phyllodes.

    Phyllodes tumors (even benign ones) can sometimes come back in the same place if they are removed without taking some of the normal tissue around them. For this reason, they are treated by removing the mass and a 1 to 2 cm (about ½ to ¾ inch) area of normal breast tissue from around the tumor.

    Malignant phyllodes tumors are treated by removing them along with a wider margin of normal tissue, or by mastectomy (removing the entire breast) if needed. Malignant phyllodes tumors are different from the more common types of breast cancer. They do not respond to hormone therapy and are less likely than most breast cancers to respond to radiation therapy or the chemotherapy drugs normally used for breast cancer. Phyllodes tumors that have spread to distant areas are often treated more like sarcomas (soft-tissue cancers) than breast cancers.

    Because these tumors can recur, close follow-up with frequent breast exams and imaging tests are usually recommended after treatment.


    Last Medical Review: 08/24/2012
    Last Revised: 08/24/2012

  • New Flower
    New Flower Member Posts: 4,294
    #4
    Second opinion

    HHi welcome to the board. Phylloid is a rare form. I think they have a group on Face Book

    you need to seek a second opinion if you are not comfortable with answers from you doctors

    What is about Slaon-Kettering center? Please keep looking for the answers if you have concerns about your conditions 

    hugs

  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #5
    All I can say is if you have

    All I can say is if you have the smallest of doubts, I would do as you are, find a place for second opinion.  I would feel happier if just totally removed and analyzed.  I feel my Oncologist would feel the same way as he is very proactive.  Good luck, sorry I cannot recommend anyone for you, but sure others will.

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #6
    breastcancer.org

    Hi, I wanted to let  you know of another website called breastcancer.org. I use that site as well as this one.

    Their forum is set up differently as it only covers breast cancer, so they have forums for different aspects of bc.

    One forum is called "Less Common Types of Breast Cancer." I think you may find some more women/men that have experienced Phyllodes Breast Tumors." I think you  may have more luck with repsonses at that site. 

  • heaven1021
    heaven1021 Member Posts: 7
    #7
    Phyllodes

    Hi Silverchick,

    I was diagnosed with a Phyllodes tumor.  It appeared all of a sudden out of no where.  I had just had a mamogram 5 months earlier, my dr assumed it was a cyst and before doing anything he sent me for a CT scan and they didn't know what it was, so I had a biopsy done which it came back as benign.  I had to have it removed with wide margins because it began to grow at a rapid pace.  Once it was removed it was sent to San Francisco for further study because the local pathologist couldn't name it, and it was then discovered it was a malignant phyllode tumor.  I had to have a second surgery for even wider margins along with radiation therapy.  It has been 2 years and have not returned.  There is still a possibility it can return.  This tumor mimicks a firbrodadenoma. There is a website I am currently a member of of facebook. Send me a message and and we can talk more about it.  Please do get a second opinion.

     

  • bhabich
    bhabich Member Posts: 1
    #8
    heaven1021 said:

    Phyllodes

    Hi Silverchick,

    I was diagnosed with a Phyllodes tumor.  It appeared all of a sudden out of no where.  I had just had a mamogram 5 months earlier, my dr assumed it was a cyst and before doing anything he sent me for a CT scan and they didn't know what it was, so I had a biopsy done which it came back as benign.  I had to have it removed with wide margins because it began to grow at a rapid pace.  Once it was removed it was sent to San Francisco for further study because the local pathologist couldn't name it, and it was then discovered it was a malignant phyllode tumor.  I had to have a second surgery for even wider margins along with radiation therapy.  It has been 2 years and have not returned.  There is still a possibility it can return.  This tumor mimicks a firbrodadenoma. There is a website I am currently a member of of facebook. Send me a message and and we can talk more about it.  Please do get a second opinion.

     

    I have gone to the Phyllodes

    I have gone to the Phyllodes Support Group facebook page.  I have requested to become a member, but am not sure how I know whether or not they have accepted me.  The page isn't listed under my groups.

    ANYWAYS...I have recently had a stereotactic core needle biopsy.  They told me that pathology results came back as a possible phyllodes tumor.  I am scheduled for a surgical consult on Monday.  I am looking for some questions to ask during this consult.  I have never had a surgical consult before.  When they first called me back from the biopsy, they were wanting to schdule surgery for the removal.  Howver, I was dealing with a general surgeon and because they are stating this is such a rare type of tumor, I requested a breast surgeon. That's when I was set up with this consultation.

    I am nervous, confused, trying real hard to stay positive.  I have the mindset that since they are saying it's benign at this point, I am assuming it's benign.  But they also told me they couldn't really know for sure whether or not it's benign until they take it out and look at it closer. 

    So, really I guess I'm looking for help as to what to ask during this appointment and I'm also hoping for some support.  I've never been more nervous about my health than I have over the last month dealing with all these different appointments.  I thought I was just going in for my annual mammy, to get it checked off my to-do list.  I never imagined I would get a call back and go through so much psychologically. 

    I have wonderful support from my fiancee and family, however, they don't truly know and understand what is all going on in my head.

    Thanks in advance for any help I can get.

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