Has anyone here been dx with phyllodes tumor?

2

Comments

  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #22
    cheyennedawn said:

    Thanks Marietta
    I just saw this post, I hope your sisters surgery went well today. Keep me posted on how she is doing. This is such a scary and confusing journey, all we can do is do the best that we can, and trust our decisions. I think you did make the best decision. And, I believe that I made the best decision for me. But, I am not happy with my follow up care, so I am dealing with that. Just don't give up in your quest for answers! Tell your sister to hang in there. This will get better. She is very lucky to have a sister like you, who is there for her.

    Take care,
    Cheyenne

    *bump*

    *bump*
  • cheyennedawn
    cheyennedawn Member Posts: 70
    #23
    Dawne.Hope said:

    *bump*

    *bump*

    thanks dawne.hope

    thanks dawne.hope
  • Unknown
    Unknown
    #24
    This comment has been removed by the Moderator
  • pgsmpsn
    pgsmpsn Member Posts: 1
    #25
    cheyennedawn said:

    thanks dawne.hope

    thanks dawne.hope

    I've had it too
    I've since turned 29 (yesterday) but was dx with Phyllodes in May and had my surgery in June. At the time of my lumpectomy, it was 6x6 cm and had attached to my chest wall. My doc wasnt able to take a clear margin from my chest wall, but the other sides were clear. I have a 4 inch scar above my nipple that is now forming horrible scar tissue, and another lump is forming where the other was removed....like a seed forming from a root.
    BC is so prominent in my family, this is such a frightening experience for all of us. My 5 year old still asks if my scar is there...
    I have an U/S on monday to take more pics of the tissue and the new lump I found. The doc I have is so certain of her work, that she refuses to consider it growing back, and has reassured me the lump I feel is just fluid filling the area she scooped out. I'm terrified.
    Does anyone know of any Phyllodes docs in AZ? I'm limited with my insurance but would got to anyone at this point.
    Paige
  • cheyennedawn
    cheyennedawn Member Posts: 70
    #26
    pgsmpsn said:

    I've had it too
    I've since turned 29 (yesterday) but was dx with Phyllodes in May and had my surgery in June. At the time of my lumpectomy, it was 6x6 cm and had attached to my chest wall. My doc wasnt able to take a clear margin from my chest wall, but the other sides were clear. I have a 4 inch scar above my nipple that is now forming horrible scar tissue, and another lump is forming where the other was removed....like a seed forming from a root.
    BC is so prominent in my family, this is such a frightening experience for all of us. My 5 year old still asks if my scar is there...
    I have an U/S on monday to take more pics of the tissue and the new lump I found. The doc I have is so certain of her work, that she refuses to consider it growing back, and has reassured me the lump I feel is just fluid filling the area she scooped out. I'm terrified.
    Does anyone know of any Phyllodes docs in AZ? I'm limited with my insurance but would got to anyone at this point.
    Paige

    Welcome Paige
    Im sorry that you have had to go through all that. If you have any doubts, get a second, or even third opinion. It doesn't matter if your doctor is certain, if you have doubts, then you need to follow up on them. And, hopefully, it will just turn out to be just fluid filling the area, but you have to be absolutely sure of that. I live in North Carolina, so I am not familiar with docs in your area, but maybe you could get in to see an oncologist, or at the very least your primary care physician. That is were I went for my second opinion. My surgeon would not listen to me either, I was not happy with my follow up care, he was sure that he got the whole tumor, and that there was no chance that it had spread. I wasn't sure, and so my PCP sent me for a chest CT scan and MRI...everything turned out well, thank GOD, but I wasn't convinced til then. I wish you well, and a speedy recovery in all of this, and pray that you will get the answers you need. Please keep us informed on what is going on with you. This is a wonderful site, you will get lots of support and advice here. But, as I'm sure you are finding out, there is not a lot of info on the phyllodes tumors. This is a very rare disease. But, very treatable.
  • Sherri125
    Sherri125 Member Posts: 2
    #27
    cheyennedawn said:

    Welcome Paige
    Im sorry that you have had to go through all that. If you have any doubts, get a second, or even third opinion. It doesn't matter if your doctor is certain, if you have doubts, then you need to follow up on them. And, hopefully, it will just turn out to be just fluid filling the area, but you have to be absolutely sure of that. I live in North Carolina, so I am not familiar with docs in your area, but maybe you could get in to see an oncologist, or at the very least your primary care physician. That is were I went for my second opinion. My surgeon would not listen to me either, I was not happy with my follow up care, he was sure that he got the whole tumor, and that there was no chance that it had spread. I wasn't sure, and so my PCP sent me for a chest CT scan and MRI...everything turned out well, thank GOD, but I wasn't convinced til then. I wish you well, and a speedy recovery in all of this, and pray that you will get the answers you need. Please keep us informed on what is going on with you. This is a wonderful site, you will get lots of support and advice here. But, as I'm sure you are finding out, there is not a lot of info on the phyllodes tumors. This is a very rare disease. But, very treatable.

    Hello Cheyennedawn! I'm also
    Hello Cheyennedawn! I'm also a Phyllode's patient. I discovered a small lump on the right side and even though I was previously diagnosed with fibrocystic breast changes, this particular lump seemed to feel a bit more firm to me. I waited for a month, to see if it would disappear with my hormonal cycle (I had a supracervical hysterectomy but still have cervix and ovaries so I still have the monthly hormonal thing) like usual, only this lump didn't go away. It was only the size of a pea, but nonetheless I was still concerned. I went to my PCM and she also confirmed that she could feel what I was talking about as well. She thought it was nothing since she thought it was moveable, but she still referred me to radiology. The mammogram they took showed nothing but I have dense tissue which makes reading mammograms a bit difficult. My PCM also referred me for an ultrasound, and that is what picked up a 1cm tumor. I had a core needle biopsy, and had a huge hematoma develop and had to wait 3 weeks for my body to absorb some of that blood, but while waiting my core biopsy results came back as a benign phyllodes. Then I was referred to an oncological surgeon. I just had the rest of my tumor removed wide local excision and the tumor appeared to grow to 3 cm in 3 weeks time. I am about to go for my first post-op mammogram following the surgery and then apparently my doc wants to follow me at 3 month rechecks for awhile. I think you hit the nail on the head. You have to advocate for yourself. Since being diagnosed, I have alot of doctors, residents, medical students sitting in on my appointments with my onc surgeon. Apparently, at my hospital I am the 2nd case of Phyllodes of any ilk they have ever seen. It seems strange, but prior to this diagnosis, I usually only saw one doctor and maybe a nurse chaperone. Now, 2 techs take me to get my vitals, and usually 2 student doctors examine me, and then my onc surgeon comes in to talk story. Has anyone else experienced this in your appointments?
  • Sherri125
    Sherri125 Member Posts: 2
    #28
    pgsmpsn said:

    I've had it too
    I've since turned 29 (yesterday) but was dx with Phyllodes in May and had my surgery in June. At the time of my lumpectomy, it was 6x6 cm and had attached to my chest wall. My doc wasnt able to take a clear margin from my chest wall, but the other sides were clear. I have a 4 inch scar above my nipple that is now forming horrible scar tissue, and another lump is forming where the other was removed....like a seed forming from a root.
    BC is so prominent in my family, this is such a frightening experience for all of us. My 5 year old still asks if my scar is there...
    I have an U/S on monday to take more pics of the tissue and the new lump I found. The doc I have is so certain of her work, that she refuses to consider it growing back, and has reassured me the lump I feel is just fluid filling the area she scooped out. I'm terrified.
    Does anyone know of any Phyllodes docs in AZ? I'm limited with my insurance but would got to anyone at this point.
    Paige

    Hi Paige! I'm so sorry to
    Hi Paige! I'm so sorry to hear that you are going through this. I was also diagnosed with Phyllodes (mine was benign) and I have a Y shaped (also near 4 inches maybe more) incision that's about 2 inches above the nipple. My onc surgeon also removed tissue from where radiology performed the core needle biopsy. They were concerned that some tumor cell seeding could take place so they removed it during my wide local excision. I am having horrible scar tissue forming as well. At least, my onc surgeon thinks it's scar tissue. I'm going in next week for a post surgery (first baseline) mammogram. I'm hoping that the mammogram and ultrasound will confirm that it's just scar tissue and not the phyllodes trying to grow from any residual cells that may have happened during the core needle biopsy. I had a huge hematoma happen during that core biopsy and am concerned what I feel now is the phyllodes recurring. I'm sorry, I don't know of any Phyllodes docs in the Arizona area. There is a board called Rare Cancer Alliance Support that has a Phyllodes Tumor board. The address is http://www.rare-cancer.org/forum/index.php
  • mmoore61
    mmoore61 Member Posts: 1
    #29
    Sherri125 said:

    Hi Paige! I'm so sorry to
    Hi Paige! I'm so sorry to hear that you are going through this. I was also diagnosed with Phyllodes (mine was benign) and I have a Y shaped (also near 4 inches maybe more) incision that's about 2 inches above the nipple. My onc surgeon also removed tissue from where radiology performed the core needle biopsy. They were concerned that some tumor cell seeding could take place so they removed it during my wide local excision. I am having horrible scar tissue forming as well. At least, my onc surgeon thinks it's scar tissue. I'm going in next week for a post surgery (first baseline) mammogram. I'm hoping that the mammogram and ultrasound will confirm that it's just scar tissue and not the phyllodes trying to grow from any residual cells that may have happened during the core needle biopsy. I had a huge hematoma happen during that core biopsy and am concerned what I feel now is the phyllodes recurring. I'm sorry, I don't know of any Phyllodes docs in the Arizona area. There is a board called Rare Cancer Alliance Support that has a Phyllodes Tumor board. The address is http://www.rare-cancer.org/forum/index.php

    Hello
    Hi my name is Mallory i am 21 years old and 5 months pregnant i was told that i may phyllodes tumor in my right breast. my surgery is scheduled for May 26th they said they will need to take out about 5 inches or more of tissue i'm not scared at this point more anxious to just get the tumor out. i just want to be healthy for my new baby i am married and two daughters ages 2 and 1. just thought it would be nice to talk to others in the same boat.
  • tigerfish
    tigerfish Member Posts: 1
    #30
    denise OMG
    denise:
    now i am really afraid b/c we have similar case.
    I discovered I had a hard lump end of March and did mamogram, ultra sound and needle biospy and had surgery may 4th
    and after surgery the pathology discovered it is contain a bit of phyllodes, so that explained why the lump grow so fast. my dr was just as shocked as I, so he advice me to have a second surgery which is exactly 2 weeks later. this time he removed even more fat tissue and 1-2 lynph node and all clear. so now he wants me to see a oncologist.
    so is that all necessary?
    does it mean in 6 months this can all grow back????????????????????

    I am scared

    Daisy
  • GregStahl
    GregStahl Member Posts: 188
    #31
    Try the M.D. Anderson website
    for information on this.....
  • jadore35
    jadore35 Member Posts: 1
    #32
    mmoore61 said:

    Hello
    Hi my name is Mallory i am 21 years old and 5 months pregnant i was told that i may phyllodes tumor in my right breast. my surgery is scheduled for May 26th they said they will need to take out about 5 inches or more of tissue i'm not scared at this point more anxious to just get the tumor out. i just want to be healthy for my new baby i am married and two daughters ages 2 and 1. just thought it would be nice to talk to others in the same boat.

    hi
    Hi Mollary... I'm in similiar situation has yu with phyllodes tumor... I've noticed a lump in my right breast for over 6 months when i visit the Dr they told me it harmone and menstrual cycle i monitored the lump for 3 months until may 4 i notice the side of my right breast where the lump is was swollen and hot... I visited my Dr the following day but was told it was a cyst and was recommended to see breast Dr at the hospital.. I went the foklowing week i had an ultrasound/ core needlde biopsy and mamaogram.. The ultrasoubnd showed a 5 cm phyllodes/fibrodenoma tumor... But aftere going to see the Dr for the result i wastold it was phyllodes tumor and i need a exision to remove it... Its been 3 weeks now and still await the operation... But i'm feeling tired chest pain and shoulder pain in the right breast. Did you have any of these symptoms? I found it frustrated not having much to read on this type of tumor.. Its rare and i believe they should spend more money finding cure and how to control it seeing that radiation dont really work well. I'm 35 yrs and have no kids so i'm very upset with my Dr for not checking me when i first visited him 6 months ago. Love jadore Xoxo
  • emilyjane91
    emilyjane91 Member Posts: 3
    #33
    phyllodes tumour
    I have recently been diagnosed with a malignant phyllodes tumour at only 19 years old, I was told a year ago after having a biopsy on a lump in my right breast that it was a fibrodenoma too and that it would disperse by itself, but it didn't and grew bigger quite fast. I returned to the hospital and had the lump removed only to be told a fortnight later that it was a malignant phyllodes tumour. Very confusing as a year previous to this they were telling me it was something different and benign but now malignant. It is so confusing as I have been told chemotherapy and radiotherapy do not work for this type of tumour and doctors I have seen haven't been sure on what the best treatment for this tumour is as it is so rare. I have had more surgery to remove the surrounding tissue leaving clear margins. I am now awaiting results to find out the outcome of surgery and what happens next. I have been told radiation works in some cases, so may be given it when I go back to see results. I know how frustrated you must feel about the situation because I am in the same boat. I have been given all sorts of information from all sorts of specialists. But I have always been told it is cancer, borderline and malignant means cancer but it is so different to any other form
  • Kellz
    Kellz Member Posts: 1
    #34
    emilyjane91 said:

    phyllodes tumour
    I have recently been diagnosed with a malignant phyllodes tumour at only 19 years old, I was told a year ago after having a biopsy on a lump in my right breast that it was a fibrodenoma too and that it would disperse by itself, but it didn't and grew bigger quite fast. I returned to the hospital and had the lump removed only to be told a fortnight later that it was a malignant phyllodes tumour. Very confusing as a year previous to this they were telling me it was something different and benign but now malignant. It is so confusing as I have been told chemotherapy and radiotherapy do not work for this type of tumour and doctors I have seen haven't been sure on what the best treatment for this tumour is as it is so rare. I have had more surgery to remove the surrounding tissue leaving clear margins. I am now awaiting results to find out the outcome of surgery and what happens next. I have been told radiation works in some cases, so may be given it when I go back to see results. I know how frustrated you must feel about the situation because I am in the same boat. I have been given all sorts of information from all sorts of specialists. But I have always been told it is cancer, borderline and malignant means cancer but it is so different to any other form

    Need suggestions


    I haven't been diagnosed with a phyllodes tumor yet but my surgeon said it is possible. I am scheduled for a lumpectomy on the 25th. I feel like a lumpectomy may not be the right choice. My lump is 4x4 cm (and I feel like it's getting bigger) and I'm barely a "B" cup. Should I go ahead and do a mastectomy even though it may not be a phyllodes tumor? Or should I just stick with my surgeon and do the lumpectomy? Just from reading all the stories of multiple surgeries and ending with having to do a mastectomy anyway, I was just curious. I'm only 26 yrs old with no family history of any breast cancer. So I know little to nothing about breast cancer. I don't know what questions to ask, how to feel, what to do....
  • Melendm
    Melendm Member Posts: 1
    #35
    Kellz said:

    Need suggestions


    I haven't been diagnosed with a phyllodes tumor yet but my surgeon said it is possible. I am scheduled for a lumpectomy on the 25th. I feel like a lumpectomy may not be the right choice. My lump is 4x4 cm (and I feel like it's getting bigger) and I'm barely a "B" cup. Should I go ahead and do a mastectomy even though it may not be a phyllodes tumor? Or should I just stick with my surgeon and do the lumpectomy? Just from reading all the stories of multiple surgeries and ending with having to do a mastectomy anyway, I was just curious. I'm only 26 yrs old with no family history of any breast cancer. So I know little to nothing about breast cancer. I don't know what questions to ask, how to feel, what to do....

    Hi, everyone. I'm new to this site, and I want to share something. Please visit www.rare-cancer.org ....lots of info from blogs and research on phyllodes tumors. I was dx'd in 2005, had a WLE, had a recurrence 3years later...currently not being treated. Please take care of yourselves, get a second opinion, do your research.

    Kellz: I would suggest a wide local excision (WLE) for now, unless your PT is malignant. A mastectomy is so major and life-changing, and unnecessary unless the diagnosis is confirmed. I'm sorry that all of you are going through this. I'm glad I'm not going through it alone. I hope that we can all help each other with this. :0)
  • SDRAKE0021
    SDRAKE0021 Member Posts: 1
    #36
    Hey I'm 18 and I've been dx
    Hey I'm 18 and I've been dx with Phyllodes tumor!

    Here is my background information:
    1. I found the "knot" on 8/14/2011
    2. Went for my first ultrasound on 8/18/2011, it was 1.4 cm big. One month later I went for my second ultrasound on 9/22/2011, and it was 3.4 cm big. My tumor felt very smooth and mobile.
    3. I went for my biopsy on 11/15/11, the x-ray guy who was performing my biopsy had a very hard time getting the needle through my tumor (which at the time we thought it was a regular cyst, and he couldn't believe how encapsulated it was.) Once they have started the biopsy it was supposed to take roughly around 5-10 minutes and it took him 45 minutes to get three samples.
    4. One to two days after my biopsy I noticed that there is a very large "ball" feeling thing to the top of my original tumor, but dismissed this assuming that it was a bruise.
    5. I had my surgery done on Thursday December 8th, 2011. The surgery took longer than expected because from where the biopsy was so forceful to get the needle through it actually distorted my tumor and he had to "hunt" down all of the pieces and also during this surgery he found another "cyst" (actually tumor) above my original cyst/tumor which is that "bruise" that I found one to two days after my biopsy.
    6. A little over two weeks I went back for my two week check- up on Tuesday December the 27th, 2011 and that is when he told me about Phyllodes Tumor. He told me so much information and I've been doing research online and I've never came across this information that he told me in the office. He said that the reason why my tumors keep forming (I've found three more tumor including the one he found) is because my breast tissue is so firm and dense that it kinda resembles Swiss cheese. So the holes of Swiss cheese are actually tiny pockets which is where the tumors form. I don't know how accurate that is and how helpful all of this information is since there isn't much research done on this rare type of breast tumor. I am sad to say that I don't know where my samples are that they took from me, and I don't even know where to send it too anyways. I will try to find more information and call him regarding my samples and see if he can send them off somewhere for research.
    7. My doctor told me that I will have to have mammograms done once every year for the next several years of my life and that if I notice any of my current tumors start to grow then I will have to get a mammogram done immediately.

    Now I've read on some sites saying if it is benign it is still considered cancer because of the chance it has turning into cancer and some doesnt say that at all! so is it cancer or not if its benign?
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #37
    SDRAKE0021 said:

    Hey I'm 18 and I've been dx
    Hey I'm 18 and I've been dx with Phyllodes tumor!

    Here is my background information:
    1. I found the "knot" on 8/14/2011
    2. Went for my first ultrasound on 8/18/2011, it was 1.4 cm big. One month later I went for my second ultrasound on 9/22/2011, and it was 3.4 cm big. My tumor felt very smooth and mobile.
    3. I went for my biopsy on 11/15/11, the x-ray guy who was performing my biopsy had a very hard time getting the needle through my tumor (which at the time we thought it was a regular cyst, and he couldn't believe how encapsulated it was.) Once they have started the biopsy it was supposed to take roughly around 5-10 minutes and it took him 45 minutes to get three samples.
    4. One to two days after my biopsy I noticed that there is a very large "ball" feeling thing to the top of my original tumor, but dismissed this assuming that it was a bruise.
    5. I had my surgery done on Thursday December 8th, 2011. The surgery took longer than expected because from where the biopsy was so forceful to get the needle through it actually distorted my tumor and he had to "hunt" down all of the pieces and also during this surgery he found another "cyst" (actually tumor) above my original cyst/tumor which is that "bruise" that I found one to two days after my biopsy.
    6. A little over two weeks I went back for my two week check- up on Tuesday December the 27th, 2011 and that is when he told me about Phyllodes Tumor. He told me so much information and I've been doing research online and I've never came across this information that he told me in the office. He said that the reason why my tumors keep forming (I've found three more tumor including the one he found) is because my breast tissue is so firm and dense that it kinda resembles Swiss cheese. So the holes of Swiss cheese are actually tiny pockets which is where the tumors form. I don't know how accurate that is and how helpful all of this information is since there isn't much research done on this rare type of breast tumor. I am sad to say that I don't know where my samples are that they took from me, and I don't even know where to send it too anyways. I will try to find more information and call him regarding my samples and see if he can send them off somewhere for research.
    7. My doctor told me that I will have to have mammograms done once every year for the next several years of my life and that if I notice any of my current tumors start to grow then I will have to get a mammogram done immediately.

    Now I've read on some sites saying if it is benign it is still considered cancer because of the chance it has turning into cancer and some doesnt say that at all! so is it cancer or not if its benign?

    Hi,
    I went to the American
    Hi,
    I went to the American Cancer Society webpage and found this information for you.
    If you read it, it would appear that some phyllodes tumors can be cancer, some are benign.Your pathology report will indicate whether or not yours are cancerous.

    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 (slightly older than for fibroadenomas), but they may be found at 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 1/2 to 3/4 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 do not respond to hormone therapy and are less likely than most breast cancers to respond to chemotherapy or radiation therapy. 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.
  • sandy1234
    sandy1234 Member Posts: 2
    #38
    emilyjane91 said:

    phyllodes tumour
    I have recently been diagnosed with a malignant phyllodes tumour at only 19 years old, I was told a year ago after having a biopsy on a lump in my right breast that it was a fibrodenoma too and that it would disperse by itself, but it didn't and grew bigger quite fast. I returned to the hospital and had the lump removed only to be told a fortnight later that it was a malignant phyllodes tumour. Very confusing as a year previous to this they were telling me it was something different and benign but now malignant. It is so confusing as I have been told chemotherapy and radiotherapy do not work for this type of tumour and doctors I have seen haven't been sure on what the best treatment for this tumour is as it is so rare. I have had more surgery to remove the surrounding tissue leaving clear margins. I am now awaiting results to find out the outcome of surgery and what happens next. I have been told radiation works in some cases, so may be given it when I go back to see results. I know how frustrated you must feel about the situation because I am in the same boat. I have been given all sorts of information from all sorts of specialists. But I have always been told it is cancer, borderline and malignant means cancer but it is so different to any other form

    Please help us
    My 19 year old daughter has just been diagnosed with malignant phyllodes today and is having more surgery on Saturday. We are all really scared. Could you possible help us. How are you feeling now. Good I hope. I hope you don't mind me asking x
  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
    #39
    sandy1234 said:

    Please help us
    My 19 year old daughter has just been diagnosed with malignant phyllodes today and is having more surgery on Saturday. We are all really scared. Could you possible help us. How are you feeling now. Good I hope. I hope you don't mind me asking x

    Phyllodes breast tumor
    Sandy, I am so sorry to hear that your daughter has a malignant phyllodes tumor. There is a young woman (20 years old-college student) who posts here fairly regularly who might be able to give you some insight on this type of tumor. Her screen name is Hootiegirl. We also know her as Kat. Perhaps you can send her a private message. Also recently stacy_harp was diagnosed with a phyllodes tumor. Hopefully you can reach these ladies via a new thread or private message. Good luck to you and your daughter.

    IRENE
  • heaven1021
    heaven1021 Member Posts: 7
    #40
    denisegreen said:

    Phyllodes Diagnosis
    Hey Cheyenne:

    I have not started radiation yet. We are still in the process of tissue expansion, I have about 3 or 4 more weeks before that is completed. I am currently scheduled to begin radiation around the 2nd of November or possible a few weeks earlier depending on the tissue expansion. I was told that most of the time these tumors are benign and when they are malignant that it is more of a concern because of how they spread and how aggressive they can be. I know that when my surgeon first told me that he was sending me to the oncologist that it really freaked me out. But now that I know what the radiation treatments will be and the possible side affects I feel better knowing that I am having this treatment and will be doing everything that is possible at this time to keep it from spreading further. All the research I have done and friends of mine have done on the subject have yielded the same information that you have obtained. There just is not much out there on this cancer. But it is good to talk to someone else with this diagnosis and confirming the same information that I am being told, just wish there was more. If I hear of anything new out there, I will let you know. You may also want to tell your doctors that my oncologist consulted with a specialist in New York who works with rare cancers before we decided to treat with radiation. I hope all goes well with you and hopefully you will not have a reoccurence!!!!

    Keep moving forward and all will be well!!!!!
    Denise

    Phyllodes Radiation
    Hey Denise:

    I see it's been quite sometime since you've posted. I too had a malignant phyllodes tumor removed in Feb this year. I had a lumpectomy and a wide excison along with 6 weeks of radiation. I'm just wondering have you had any reccurence since your treatment? I'm feeling great how are you doing?

    Heaven1021
  • LisaL79
    LisaL79 Member Posts: 1
    edited August 2016 #41
    Phyllodes Tumor

    Hello. 6 mo ago I was sent to get a diagnostic mammogram and US, I was diagnosed with 8mm phyllodes tumor attached to the chest wall. Today I had my 6 mo follow up and Im not sure how I feel about it as they said it is "stable" according to the radiologist and I should follow up w/ in 6 mo. i asked if it had grown at all and they said just by 1.2 mm and that it shouldn't be of concern... but I remember my Breast surgeon I was referred to telling me that if it grows even by the smallest growth that she would want to remove since attached to chest wall.. cant help but be concerened.. even the radiologist seems to think ok. :-/ any suggestions, anyone else who has experienced this? Thanks- Lisa

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