Phyllodes tumor
I'm new to the site but not new to the disease.
I had my first partial mastectomy in June of 1996 at the age of 26. After finding the lump and it being passed off by the first Dr as a cyst, then a fibroadenoma by the second Dr, I finally got a third opinion. Although reluctant this third Dr agreed to take the lump out. Turned out it was a benign Phyllodes tumor and by the time it was taken out it had tripled in size and was making it way through my chest wall. What was supposed to be a simple lumpectomy turned into a partial mastectomy.
On my follow up visit I was told by this Dr not to worry, they got clean margins and it will NOT grow back, just a fluke. Back then there was NO literature on this type of tumor, I mean none so I had to believe what the Dr had told me. Two years later I found another lump, in the same place. I went back to the Dr who did the original surgery. Once again a core biopsy showed a fibroadenoma and I was told to watch and wait. Seeing as this Dr was a professional in the field of breast cancer and breast issues and worked for a clinic that only dealt with breast issues I waited. Six months later it was still there. They once again did a reluctant surgery and removed yet another Beging Phyllodes tumor. Long story short I just had my Fifth surgery to remove a Phyllodes tumor in the right breast, even though it is in the exact same spot the first one was found not one Dr I have seen will call it a recurrence. This time the Tumor is malignant.
I've been told absolute different opinions now from many, many Dr's in regards to this disease. I have been told that this type of tumor is NOT cancer although it has been proven to spread to lymph nodes and also to metastisize to the lungs and spine. It is NOT cancer although a benign tumor can turn malignant. I have been told that it is NOT cancer because the tumors do not respond to Chemo or radiation, Show me the studies that have been done to prove that, there have not been any. I have been told not to worry, it's not cancer although the life expectancy of someone with metastasis is three years.
Why is this disease being ignored? Because it doesnt effect enough people. So to all of us out there who suffer from this, Don't worry, It probably wont happen to your kids or the Dr you're seeing, you could die from it but who really cares, you're one in a million.
Sorry folks, first time I have vented my frustration for the simple not caring attitude of every Dr I have had. I want a mastectomy, I want radiation but I probably wont get it due to the lack of concern from Dr's and insurance company seeing it as too invasive for such a rare disease.
My thoughts and prayers for all of you dealing BC of any type and if anyone knows of a Dr that would show interest in my case, please free to email me personally.
Thanks for listening,Sue
Comments
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Phyllodes Tumor
Hi Sue,
I am just checking to see how your are doing and if you found the info and a doc? I was diagnosed in 12/2009 after a lumpectomy. In contrast to your nightmare, I have had great treatment. I even knew before surgery that a "rare phyllodes tumor" might be a possibility, 99% chance it would not be... but if so, I would have to have a wider margin taken with another surgery, at minimal. I ended up getting a second opinion at the Mayo Clinic...I just needed to consult with more docs and they are the experts at the rare tumors. The doc's there agreed. They said radiation is still experimental and chemo doesn't work. When the surgeon at mayo told me that she believes these tumors should ALL be considered malignant (even "benign" ones) because they are so unpredictable...this confirmed the decision I had already been leaning toward. She said they are harder to control surgically than invasive BC. They agreed that a mastectomy was be best course of treatment as my chance of having a local recurrence was 20-30%. So, I am recovering from a bilateral mastectomy and am weathering the reconstruction well. I am truly blessed by the great care I have received at The Piper Breast Center in Minneapolis. The team there is wonderful. Mayo clinic was great too but I chose to stay closer to home. There is another discussion board on the rare cancer alliance web site that is for phyllodes survivors.. lots of good info and many ladies who have experienced what you have had to suffer through. I am sure someone would know a doc in your area. Please let me know how you are doing! It is so rare to find any message of our cancer on a cancer web site.. even breast cancer! Any yes, we do have a "cancer" diagnosis... just not the typical breast cancer. Take care!!0 -
New diagnosishmom226 said:Phyllodes Tumor
Hi Sue,
I am just checking to see how your are doing and if you found the info and a doc? I was diagnosed in 12/2009 after a lumpectomy. In contrast to your nightmare, I have had great treatment. I even knew before surgery that a "rare phyllodes tumor" might be a possibility, 99% chance it would not be... but if so, I would have to have a wider margin taken with another surgery, at minimal. I ended up getting a second opinion at the Mayo Clinic...I just needed to consult with more docs and they are the experts at the rare tumors. The doc's there agreed. They said radiation is still experimental and chemo doesn't work. When the surgeon at mayo told me that she believes these tumors should ALL be considered malignant (even "benign" ones) because they are so unpredictable...this confirmed the decision I had already been leaning toward. She said they are harder to control surgically than invasive BC. They agreed that a mastectomy was be best course of treatment as my chance of having a local recurrence was 20-30%. So, I am recovering from a bilateral mastectomy and am weathering the reconstruction well. I am truly blessed by the great care I have received at The Piper Breast Center in Minneapolis. The team there is wonderful. Mayo clinic was great too but I chose to stay closer to home. There is another discussion board on the rare cancer alliance web site that is for phyllodes survivors.. lots of good info and many ladies who have experienced what you have had to suffer through. I am sure someone would know a doc in your area. Please let me know how you are doing! It is so rare to find any message of our cancer on a cancer web site.. even breast cancer! Any yes, we do have a "cancer" diagnosis... just not the typical breast cancer. Take care!!
I have just been diagnosed with benign phyllodes tumor. I am very atypical for this diagnosis. 76 years old, 2 pregnancies, breast fed each for 9 months. I did use hormone replacement therapy until 6 years ago. I believe my age alone puts me at the far end of likely subjects. I am currently dealing with doctors who express no urgency in treating me. As I am a very healthy, active 76, I would like to see a bit more interest. My Primary Care physician didn't even know what Phyllodes Tumor is, but she zeroed in on the "benign" part. She said she would "look it up." Reassuring.
All of the literature I have read emphasizes that the only treatment is removal of the tumor and a "wide" margin to prevent recurrance. I have rather large breasts and will encourage my surgeon to err on the side of too much, rather than too little.
I am still waiting to see the surgeon. It was a one month wait, and will see her on May 5, so do not even know when the surgery will be done. Waiting is the worst part.
It is helpful to communicate with others who are experiencing this situation. I would like to keep in touch with you. I am located in So. California and am wondering about getting a second opinion.
Best wishes for you recovery.0 -
Phyllodes diagnosis
Dear Sue:
I have read your posting and am appalled. I am seeing a bit of that attitude in regard to my own diagnosis. The internet is such a blessing, but I imagine it wasn't available to you when you received your first surgery. The only minor surgery is the kind someone else is having, right? Benign diagnoses seem to remove all the urgency from the treatment plan. I have been waiting to see a surgeon and will finally have my first appointment with her May 5. Then the surgery somewhere down the line. My PC didn't even know what Phyllodes Tumor is. She zeroed in on the "benign" part and said she would look it up.
At my age (76) I am not even in the normal age range of this cancer. I would like to keep in touch with you to hear how you are doing. Best wishes, Marlene.0 -
malignant phyllodes tumorknitwitte said:Phyllodes diagnosis
Dear Sue:
I have read your posting and am appalled. I am seeing a bit of that attitude in regard to my own diagnosis. The internet is such a blessing, but I imagine it wasn't available to you when you received your first surgery. The only minor surgery is the kind someone else is having, right? Benign diagnoses seem to remove all the urgency from the treatment plan. I have been waiting to see a surgeon and will finally have my first appointment with her May 5. Then the surgery somewhere down the line. My PC didn't even know what Phyllodes Tumor is. She zeroed in on the "benign" part and said she would look it up.
At my age (76) I am not even in the normal age range of this cancer. I would like to keep in touch with you to hear how you are doing. Best wishes, Marlene.
I was just diagnosed on Monday with this tumor. I am appalled already at the lack of concern and knowledge in the healthcare community. I live in Texas, a few hours from MD Anderson Cancer Center. They won't see me until September and said the only treatment is surgery. I have not been set up with an oncologist or anyone who recognizes the need to check for mets. I am so overwhelmed with the reality of this diagnosis at age 33. The added stress of advocating and designing my own treatment is only making matters worse. I do have an appointment on Monday with a surgeon, but he has never seen a MPT. I don't know what to do. I am so scared and so tired and so frustrated. If anyone has any information to offer, it would be so appreciated. Thank you.0 -
hi osullybird
iam so sorry i have not what you got but mine came from skim cancer on my leg 18 years ago its basal cell carcianoma that mestastised to my lungs and ribs i have four tumors in mt right lung and lots of mets i have about two years to live but we dont know only god knows when it is are time.mine i 0.1% 300 hundres cases since 1895.it is a very rare care like youre i cannt take radtion chem .ilooked all ove for clinic trails it ticksme off to evern though are is two seprated cancer that are very rare they are working on a hedgehog inhibtor GDC 0449 PUT OUT BY CRUTIS AND GENETECK.the guy that is helping me is mike gray@ curishis #is 1 617 503 6632 maybe he can led u to some one that is having a clinic trail on this may they have a compaassion where u can get a clinic trail for that even if it is rare.reefereal# 1 888 662 6728.maybe they can help u god please you and i will be praying for you and youre familycool49 may this information will help0 -
hi osullybird
iam so sorry i have not what you got but mine came from skim cancer on my leg 18 years ago its basal cell carcianoma that mestastised to my lungs and ribs i have four tumors in mt right lung and lots of mets i have about two years to live but we dont know only god knows when it is are time.mine i 0.1% 300 hundres cases since 1895.it is a very rare care like youre i cannt take radtion chem .ilooked all ove for clinic trails it ticksme off to evern though are is two seprated cancer that are very rare they are working on a hedgehog inhibtor GDC 0449 PUT OUT BY CRUTIS AND GENETECK.the guy that is helping me is mike gray@ curishis #is 1 617 503 6632 maybe he can led u to some one that is having a clinic trail on this may they have a compaassion where u can get a clinic trail for that even if it is rare.reefereal# 1 888 662 6728.maybe they can help u god please you and i will be praying for you and youre familycool49 may this information will help0 -
Tristi w/ malignant phyllodes tumorTristi said:malignant phyllodes tumor
I was just diagnosed on Monday with this tumor. I am appalled already at the lack of concern and knowledge in the healthcare community. I live in Texas, a few hours from MD Anderson Cancer Center. They won't see me until September and said the only treatment is surgery. I have not been set up with an oncologist or anyone who recognizes the need to check for mets. I am so overwhelmed with the reality of this diagnosis at age 33. The added stress of advocating and designing my own treatment is only making matters worse. I do have an appointment on Monday with a surgeon, but he has never seen a MPT. I don't know what to do. I am so scared and so tired and so frustrated. If anyone has any information to offer, it would be so appreciated. Thank you.
Hi- I was diagnosed w/a malignant phyllodes tumor in March of this year. I am 72 and was so shocked! Like you, I learned all I could re treatment and the nature of the rare tumor. I opted for a simple mastectomy and found that the staff of Froedtert Hospital in Milwaukee took me seriously. My surgery has healed well. I am seeing a counselor for help in adjusting to this total surprise as well as a wholistic physician for lifestyle assistance although supplements don't cure cancer. I don't know what the future holds but I'm doing all I can to be a strong advocate for myself. I surely went through a storm of emotions at first..... a terrible time as I tried to learn about something I'd never heard of!
You might consider the Mayo Clinic or Froedtert if your circumstances permit this. Please let me know if you want more details re my disease and I hope to hear how you're doing!!0 -
Phyllodes Tumorhmom226 said:Phyllodes Tumor
Hi Sue,
I am just checking to see how your are doing and if you found the info and a doc? I was diagnosed in 12/2009 after a lumpectomy. In contrast to your nightmare, I have had great treatment. I even knew before surgery that a "rare phyllodes tumor" might be a possibility, 99% chance it would not be... but if so, I would have to have a wider margin taken with another surgery, at minimal. I ended up getting a second opinion at the Mayo Clinic...I just needed to consult with more docs and they are the experts at the rare tumors. The doc's there agreed. They said radiation is still experimental and chemo doesn't work. When the surgeon at mayo told me that she believes these tumors should ALL be considered malignant (even "benign" ones) because they are so unpredictable...this confirmed the decision I had already been leaning toward. She said they are harder to control surgically than invasive BC. They agreed that a mastectomy was be best course of treatment as my chance of having a local recurrence was 20-30%. So, I am recovering from a bilateral mastectomy and am weathering the reconstruction well. I am truly blessed by the great care I have received at The Piper Breast Center in Minneapolis. The team there is wonderful. Mayo clinic was great too but I chose to stay closer to home. There is another discussion board on the rare cancer alliance web site that is for phyllodes survivors.. lots of good info and many ladies who have experienced what you have had to suffer through. I am sure someone would know a doc in your area. Please let me know how you are doing! It is so rare to find any message of our cancer on a cancer web site.. even breast cancer! Any yes, we do have a "cancer" diagnosis... just not the typical breast cancer. Take care!!
Hi Sue,
This is my first day on the CSN site. I was diagnosed with a malignant phyllodes tumor on 8/1/10. My surgeon was very knowledgeable about this cancer and honest about the risks and treatment options. On 8/18/10 I had a simple mastectemy. My pathology results was the best that my surgeon could of asked for. I am scheduled to meet with a radiologist on 9/14/10 to discuss radiation treatment. Like hmom226 I was truly blessed to have a surgeon who did not minimize my disease and provided me with the knowledge and care I needed.
Please keep searching for a doctor who will provide you with the medical care you need and deserve.0 -
Second Phyllodes Tumor Surgeryhope4strength said:Phyllodes Tumor
Hi Sue,
This is my first day on the CSN site. I was diagnosed with a malignant phyllodes tumor on 8/1/10. My surgeon was very knowledgeable about this cancer and honest about the risks and treatment options. On 8/18/10 I had a simple mastectemy. My pathology results was the best that my surgeon could of asked for. I am scheduled to meet with a radiologist on 9/14/10 to discuss radiation treatment. Like hmom226 I was truly blessed to have a surgeon who did not minimize my disease and provided me with the knowledge and care I needed.
Please keep searching for a doctor who will provide you with the medical care you need and deserve.
Hello everyone,
I am presently sitting in VCU/MCV hospital recouperating from my second PT surgery here. In mid 2006 I was clinically diagnosed with a benign breast cyst after mammogram, fine needle aspiration and ultrasound diagnosis. My doctor didn't even bother to call me with her final diagnosis as she was relocating far out of the area. I then was referred to a oncologist who had a stellar reputation and he said he had looked over my path and lab results and confirmed a benign breast cyst and to stop drinking coffee. He said that a study had been out for some time that wherever Starbucks coffee is popular, there is a higher incident of breast cysts. I don't drink coffee anyway and stopped Starbucks coffee after reading the same report, but nonetheless I had a cyst anyway. Ias told to watch the cyst and come back if anything changed.
In mid 2009 I was hit with overwhelming exhaustion, edema, kidney region pain and aching of joints. I also noticed that the breast lump had increased in size and called VCU in Richmond, VA to make an appointment. I was referred to the Massey Cancer Center and after financial screening (I have no insurance) I was given an appointment for September 2009, which was a long way out, timewise. By the time I made the appointment for the initial exam, had a mammogram, CORE NEEDLE biopsy,an MRI and was at my diagnosis appointment at Massey Center, the "cyst" had grown to the size of an orange. Surgery was scheduled for two weeks out. The exhaustion and pain was on a scale of 1-10, an easy 9.
By the time I got to the operating room, it had grown another 20%. I had a total masectomy of the left breast with no complications. Pathology had confirmed the tumor to be indeed, a phyllodes tumor. Surgery took nearly six hours and I went home the next day. I returned for follow-ups and everything proceded very well...until late July of 2010.
I had been noticing some of the early warning signs I had been experiencing, i.e. swelling, pain, exhaustion, had slowly returned and felt a need to make an appointment with my oncologist. By the time the day of the appointment arrived, I noticed a lump just south of the incision line, about the size of a marble had appeared visually, seemingly overnight. The oncologist was astounded that it had appeared so suddenly and ordered a core biopsy right on the spot, radiological diagnostics a few days and a return trip to his office the following Tuesday. By the time I returned to his clinic, the SECOND confirmed phyllodes tumor was the size of a tennis ball, but this time was different in shape and over the days became maroon in color and seemed as though it was about to burst out of my skin. This time it was painful in the adjacent region and my surrounding muscles were stinging.
This most recent surgery was eight days ago, and involved removal of margins nearly down to my ribs, pectoralis major total removal and surrounding skin. I had a large piece of donor skin harvested from my right thigh for the skin graft as there was not enough skin surrounding to close the wound. I am hooked up to the amazing Wound VAC since surgery and am still in Critical Care at VCU in Richmond, VA.
I changed my diet twenty days ago to an allergen free diet. It was under the recommendation of Dr. Elizabeth Dean in South Hill Virginia who I contacted for suggestions on starving the tumor by changing from an acidic body to an alkaline one. This means no gluten, dairy, eggs and many other foods are excluded. Being in the hospital I can follow it pretty tightly which makes me happy and the staff at VCU are very kind, considerate and accomodating. My staff of doctors (there are MANY who attend me all throughout the day) are interested in my thesis about nutrition and I must admit I am noticing many changes on my wellness. I believe that eastern as well as western medicine should play an important role in the management of this disease. I also am taking many herbs and vitamin/mineral supplements which are aiding me considerably.
I am taking a very aggressive approach to the phyllodes tumor because of conflicting information and general lack of information. There is also much false information out there as well as snake oil salespeople. I am nowhere at the end of my conquest and I am well prepared to battle this all my life, but it won't get my spirits down or take me out without a noble fight.
Please contact me if you'd like to keep in touch with my journey with this tumor.0 -
Diagnosed yesterday 9/21/2010
Hi,
Moffitt Cancer Care called me yesterday with the results of my needle core biopsy with the diagnoses of Phyllodes tumor. The nurse that called said that all samples showed benign but it has to be removed. They gave me the websites to research it so that when I met with them for my appointment Sept 30th I could ask questions. I have researched even calling the American Cancer Society as instructed by insurance companies health line. Every site I go to and every authority I talk to tells me how little is known about this. They read off the same few lines. I need help compiling questions even though I have more questions than answers. Here is what I have so far:
Questions:
1. Will excision be by lumpectomy or mastectomy? (Which would be better?)
2. Will reconstruction be necessary?
3. What is the reoccurrence rate?
4. Is this genetic?
5. How much research has been done on this type of tumor?
6. Is there enough data to show any type of definitive results?
7. Is there any type of clinic trials being done?
I am meeting with the head doctor of the womens breast cancer division at Moffitt Cancer Hospital (13th in the US in Cancer Care) so if you have any questions you want answered please post them and if I get answers I will post them. This will help both me with questions to ask and you with any answers that you are trying to get.0 -
Malignant Phyllodes
I had a lump removed several years ago after a routine mammogram. They thought it was a simple benign tumour [fibroadenoma?], which actually turned out to be a benign Phyllodes tumour. I had to go back in for a wide excision, and was told it wouldn't recur. I had no follow up checks at all.
In November 2009 it was back. They decided to "wait and see". I went down with Swine Flu, and the wretched thing went into overdrive and burst out of under my breast. I haemmhorraged and nearly died, and was rushed to hospital. I had 2 more haemmhorrages and my daughters were called out each time to be told I wouldn't last the night. My daughter told them I was a stubborn b**ch and wasn't about to die because they said so. I was in hospital for 4 weeks, then moved to another hospital for 2 weeks. Over 30 surgeons from all over the UK came to have a look and suggest treatment. I was advised that the only hope was a mastectomy, which I had in April. The Tumour weighed almost 1 stone. I was told that I was clear, and it had been borderline. In June I noticed 2 lumps came up over a couple of days. They tried to persuade me it was just lymphoid swellings but I insisted on seeing at least the Senior Breast Care Nurse. By the time I got an appointment at the Breast Cancer Clinic I had 4 lumps down my ribs. She took one look and ushered me in to see the Oncologist. 2 biopsies later I was informed the Phyllodes was back and malignant in a very aggressive form. I had the lumps removed on July the 18th . 2 weeks later at the post op check up I pointed out I had 3 more lumps. They decided against another lumpectomy. On 14th September I started Radiotherapy. 8 down, 7 to go. I was told that I would have the maximum dose my body could take, and it could never be repeated - so what happens if it doesn't work?
To get them to take you seriously you have to fight. Not enough is known about Phyllodes Sarcomas. Chemotherapy is generally considered useless. Radiotherapy hasn't really been studied so I guess that makes me a guinea pig. The only thing left if this doesn't work is Brachytherapy, but they don't wish to discuss that at the moment. I gather it could be up to a month after Radiotherapy before they know if it has worked. At least my bone scan was clear, and the lymph glands they took from under my arm were both clean too.0 -
maryjb,maryjb said:Diagnosed yesterday 9/21/2010
Hi,
Moffitt Cancer Care called me yesterday with the results of my needle core biopsy with the diagnoses of Phyllodes tumor. The nurse that called said that all samples showed benign but it has to be removed. They gave me the websites to research it so that when I met with them for my appointment Sept 30th I could ask questions. I have researched even calling the American Cancer Society as instructed by insurance companies health line. Every site I go to and every authority I talk to tells me how little is known about this. They read off the same few lines. I need help compiling questions even though I have more questions than answers. Here is what I have so far:
Questions:
1. Will excision be by lumpectomy or mastectomy? (Which would be better?)
2. Will reconstruction be necessary?
3. What is the reoccurrence rate?
4. Is this genetic?
5. How much research has been done on this type of tumor?
6. Is there enough data to show any type of definitive results?
7. Is there any type of clinic trials being done?
I am meeting with the head doctor of the womens breast cancer division at Moffitt Cancer Hospital (13th in the US in Cancer Care) so if you have any questions you want answered please post them and if I get answers I will post them. This will help both me with questions to ask and you with any answers that you are trying to get.
Perhaps some of this is helpful for some of your questions...
I joined this site today. I was diagnosed w/phyllodes tumor (also referred to as cystosarcoma phyllodes, among other names) in early September, 2010. I am 59. As with many others, I, too, was initially advised to "watch" a growth on my breast. That went on for more than two years. (My husband was never comfortable with that "treatment plan.") Eventually--almost suddenly--the tumor began to grow. I had another mammogram and then a sonagram followed by an immediate needle biopsy that same day. The needle biopsy suggested that the tumor was benign. Nevertheless, I was immediately (thankfully) referred to an oncology surgeon who specializes in cancers of the breast. A week later, after seeing the doctor, I was in surgery to remove a growth that had ballooned from 10 cms. to 13.5 cms in a matter of days. The pathology report on the removed growth confirmed that it was phyllodes tumor, and, that it actually was malignant.
Another week and I was again in surgery for a mastectomy of the one breast. I'm recovering now from that surgery and I will shortly begin a precautionary regimen of radiation--five and one-half weeks of 5 treatments per week that will target the "tumor bed" in the remaining chest tissue. Apparently, there are only anecdotal studies--not true academic ones involving a control group and other statistically required elements. The anecdotal studies apparently involve too few participants, as well. Anyway, my oncology surgeon and oncology radiologist advise going ahead with radiation even though the pathology reports and CAT scan suggest a more than adequate "clear margin" in my case. I'm inclined to agree, supposing that I will be erring on the side of caution, if nothing else.
I look forward to reconstruction and "symmetry" surgeries upon completion of the radiation regimen. Anyone with useful insights on the relative merits/drawbacks of the various reconstruction methods available? I've been advised by a plastic surgeon, but I'd rather hear about the alternatives from others who have personally experienced reconstruction. Thanks. Io0 -
Malignant Phyllodes Tumor: After Mastectomy
Had a tumor grow from a quarter sized lump to the size of a baseball in a week. Two weeks after my first dr's appointment I had a mastectomy. It was a malignant phyllodes tumor. Now they are testing to see if there are any genetic markers for cancer in my blood. If the results are negative, I will have to go through radiation therapy for 5 weeks. They've told me there will be complications with reconstruction of the breast if I go through radiation therapy. I need to know all my options, if they are letting me know everything, if what they are telling me is the truth and I'm just not being put through random expensive tests for nothing.
Thank you.
Sister101, 18 yrs.0 -
Tumor back after masectomySister101 said:Malignant Phyllodes Tumor: After Mastectomy
Had a tumor grow from a quarter sized lump to the size of a baseball in a week. Two weeks after my first dr's appointment I had a mastectomy. It was a malignant phyllodes tumor. Now they are testing to see if there are any genetic markers for cancer in my blood. If the results are negative, I will have to go through radiation therapy for 5 weeks. They've told me there will be complications with reconstruction of the breast if I go through radiation therapy. I need to know all my options, if they are letting me know everything, if what they are telling me is the truth and I'm just not being put through random expensive tests for nothing.
Thank you.
Sister101, 18 yrs.
I was diagnosed with a benign Phyllodes tumor in my right breast last February after a routine mammogram. I was 36yrs old at the time. My first doctor removed the tumor with a lumpectomy and 1cm margins. They noticed another lump in the U/S and labeled it as a cyst. I never thought anything about it. After surgery I decided to switch doctors and went to a breast surgeon at a larger, more reputable hospital. She reviewed the pathology, mammograms and ultrasounds. The radiologist called me in for a biopsy on the "cyst". The results came back fibroadenoma. I am now due to go back this month for follow-up mammograms and my yearly on my left. I'm worried about the fibroadenoma because in researching I read that there is a slight chance of it becoming a phyllodes. I have thought about having a bilateral masectomy but my surgeon thinks I am nuts because it was benign. After reading the above post about the woman that had it done at the Mayo clinic I am seriously considering calling them to determine if a doctor would do it up there. Did insurance cover the surgery even though the tumor was benign? After masectomy what are the chances of the tumor coming back? There aer all these questions and unfortunately no answers for us trying to deal with this and the aftermath these tumors cause. If anyone has any information on a doctor willing to do a masectomy in the Chicago area please let me know.0 -
Tumor back after masectomySister101 said:Malignant Phyllodes Tumor: After Mastectomy
Had a tumor grow from a quarter sized lump to the size of a baseball in a week. Two weeks after my first dr's appointment I had a mastectomy. It was a malignant phyllodes tumor. Now they are testing to see if there are any genetic markers for cancer in my blood. If the results are negative, I will have to go through radiation therapy for 5 weeks. They've told me there will be complications with reconstruction of the breast if I go through radiation therapy. I need to know all my options, if they are letting me know everything, if what they are telling me is the truth and I'm just not being put through random expensive tests for nothing.
Thank you.
Sister101, 18 yrs.
I was diagnosed with a benign Phyllodes tumor in my right breast last February after a routine mammogram. I was 36yrs old at the time. My first doctor removed the tumor with a lumpectomy and 1cm margins. They noticed another lump in the U/S and labeled it as a cyst. I never thought anything about it. After surgery I decided to switch doctors and went to a breast surgeon at a larger, more reputable hospital. She reviewed the pathology, mammograms and ultrasounds. The radiologist called me in for a biopsy on the "cyst". The results came back fibroadenoma. I am now due to go back this month for follow-up mammograms and my yearly on my left. I'm worried about the fibroadenoma because in researching I read that there is a slight chance of it becoming a phyllodes. I have thought about having a bilateral masectomy but my surgeon thinks I am nuts because it was benign. After reading the above post about the woman that had it done at the Mayo clinic I am seriously considering calling them to determine if a doctor would do it up there. Did insurance cover the surgery even though the tumor was benign? After masectomy what are the chances of the tumor coming back? There aer all these questions and unfortunately no answers for us trying to deal with this and the aftermath these tumors cause. If anyone has any information on a doctor willing to do a masectomy in the Chicago area please let me know.0 -
Tumor back after masectomySister101 said:Malignant Phyllodes Tumor: After Mastectomy
Had a tumor grow from a quarter sized lump to the size of a baseball in a week. Two weeks after my first dr's appointment I had a mastectomy. It was a malignant phyllodes tumor. Now they are testing to see if there are any genetic markers for cancer in my blood. If the results are negative, I will have to go through radiation therapy for 5 weeks. They've told me there will be complications with reconstruction of the breast if I go through radiation therapy. I need to know all my options, if they are letting me know everything, if what they are telling me is the truth and I'm just not being put through random expensive tests for nothing.
Thank you.
Sister101, 18 yrs.
I was diagnosed with a benign Phyllodes tumor in my right breast last February after a routine mammogram. I was 36yrs old at the time. My first doctor removed the tumor with a lumpectomy and 1cm margins. They noticed another lump in the U/S and labeled it as a cyst. I never thought anything about it. After surgery I decided to switch doctors and went to a breast surgeon at a larger, more reputable hospital. She reviewed the pathology, mammograms and ultrasounds. The radiologist called me in for a biopsy on the "cyst". The results came back fibroadenoma. I am now due to go back this month for follow-up mammograms and my yearly on my left. I'm worried about the fibroadenoma because in researching I read that there is a slight chance of it becoming a phyllodes. I have thought about having a bilateral masectomy but my surgeon thinks I am nuts because it was benign. After reading the above post about the woman that had it done at the Mayo clinic I am seriously considering calling them to determine if a doctor would do it up there. Did insurance cover the surgery even though the tumor was benign? After masectomy what are the chances of the tumor coming back? There aer all these questions and unfortunately no answers for us trying to deal with this and the aftermath these tumors cause. If anyone has any information on a doctor willing to do a masectomy in the Chicago area please let me know.0 -
I am 21 years old and inlizflygirl said:Tumor back after masectomy
I was diagnosed with a benign Phyllodes tumor in my right breast last February after a routine mammogram. I was 36yrs old at the time. My first doctor removed the tumor with a lumpectomy and 1cm margins. They noticed another lump in the U/S and labeled it as a cyst. I never thought anything about it. After surgery I decided to switch doctors and went to a breast surgeon at a larger, more reputable hospital. She reviewed the pathology, mammograms and ultrasounds. The radiologist called me in for a biopsy on the "cyst". The results came back fibroadenoma. I am now due to go back this month for follow-up mammograms and my yearly on my left. I'm worried about the fibroadenoma because in researching I read that there is a slight chance of it becoming a phyllodes. I have thought about having a bilateral masectomy but my surgeon thinks I am nuts because it was benign. After reading the above post about the woman that had it done at the Mayo clinic I am seriously considering calling them to determine if a doctor would do it up there. Did insurance cover the surgery even though the tumor was benign? After masectomy what are the chances of the tumor coming back? There aer all these questions and unfortunately no answers for us trying to deal with this and the aftermath these tumors cause. If anyone has any information on a doctor willing to do a masectomy in the Chicago area please let me know.
I am 21 years old and in July had my second phyllodes tumor removed. I had my first phyllodes tumor when I was just 17 in my right breast. They removed this. Then when I was 20 they found the second abnormal lump in my left breast, and they removed it. It turned out to also be a phyllodes tumor. They now check me every 3 months via ultrasound because I am too young for a mammogram to show anything. Last check up they found another abnormal lump and told me theyll check it again in 3 months, and if it has grown remove it. If it is another phyllodes tumor I am wondering what my other options are because I feel as if having these one after the other at such a young age are increasing my chance of cancer as well as slowly deforming my breasts. Do some doctors perform masectomies for these even though so far they have all been benign? I am also wondering if that is being too drastic since they are not cancerous yet.0 -
My mom (49) discovered akatejo123 said:I am 21 years old and in
I am 21 years old and in July had my second phyllodes tumor removed. I had my first phyllodes tumor when I was just 17 in my right breast. They removed this. Then when I was 20 they found the second abnormal lump in my left breast, and they removed it. It turned out to also be a phyllodes tumor. They now check me every 3 months via ultrasound because I am too young for a mammogram to show anything. Last check up they found another abnormal lump and told me theyll check it again in 3 months, and if it has grown remove it. If it is another phyllodes tumor I am wondering what my other options are because I feel as if having these one after the other at such a young age are increasing my chance of cancer as well as slowly deforming my breasts. Do some doctors perform masectomies for these even though so far they have all been benign? I am also wondering if that is being too drastic since they are not cancerous yet.
My mom (49) discovered a lump in May 2010 however she did not get it looked at until Jan 2011, last week she had a lumpectomy and today she went in and they told her that it was cancerous, there is no information online about this. Is there anywhere/websites, that I can look to find out anything? I live in Salt Lake City and am going to call the Huntsman center tomorrow.0 -
Feeling Conflicteddragon1945 said:Malignant Phyllodes
I had a lump removed several years ago after a routine mammogram. They thought it was a simple benign tumour [fibroadenoma?], which actually turned out to be a benign Phyllodes tumour. I had to go back in for a wide excision, and was told it wouldn't recur. I had no follow up checks at all.
In November 2009 it was back. They decided to "wait and see". I went down with Swine Flu, and the wretched thing went into overdrive and burst out of under my breast. I haemmhorraged and nearly died, and was rushed to hospital. I had 2 more haemmhorrages and my daughters were called out each time to be told I wouldn't last the night. My daughter told them I was a stubborn b**ch and wasn't about to die because they said so. I was in hospital for 4 weeks, then moved to another hospital for 2 weeks. Over 30 surgeons from all over the UK came to have a look and suggest treatment. I was advised that the only hope was a mastectomy, which I had in April. The Tumour weighed almost 1 stone. I was told that I was clear, and it had been borderline. In June I noticed 2 lumps came up over a couple of days. They tried to persuade me it was just lymphoid swellings but I insisted on seeing at least the Senior Breast Care Nurse. By the time I got an appointment at the Breast Cancer Clinic I had 4 lumps down my ribs. She took one look and ushered me in to see the Oncologist. 2 biopsies later I was informed the Phyllodes was back and malignant in a very aggressive form. I had the lumps removed on July the 18th . 2 weeks later at the post op check up I pointed out I had 3 more lumps. They decided against another lumpectomy. On 14th September I started Radiotherapy. 8 down, 7 to go. I was told that I would have the maximum dose my body could take, and it could never be repeated - so what happens if it doesn't work?
To get them to take you seriously you have to fight. Not enough is known about Phyllodes Sarcomas. Chemotherapy is generally considered useless. Radiotherapy hasn't really been studied so I guess that makes me a guinea pig. The only thing left if this doesn't work is Brachytherapy, but they don't wish to discuss that at the moment. I gather it could be up to a month after Radiotherapy before they know if it has worked. At least my bone scan was clear, and the lymph glands they took from under my arm were both clean too.
I am so grateful for this forum. I have had a recurring PT since 2007. Actually it probably started well before then, as I had a lump since 2001 but was told it was a fibroadnoma. I had 3 lumps removed from the same site: one in 2007 (benign), one in 2009 (benign), and most recently in January 2011 (borderline, later called "benign" by a 2nd opinion). Each time the tumor was bigger and bigger; the last one grew pretty quickly. No margins were ever taken until this year, when it was diagnosed borderline. When he took the margins, he found residual evidence of the tumor, as well as Fibroepithelial cells (which are the germ cells of phyllodes). Thus, the margins were NOT clear. The doctor told me I could opt for a simple mastectomy or continue to monitor the situation every 6 mos. He told me that there was no need for alarm. I sought a 2nd opinion from a respected Cancer Hospital. I was told basically the same thing. I feel incredibly conflicted because I don't want to have major surgery if I don't have to, but I also don't want to foolishly take chances on my health and life. I have been told the chances my my dying from this is "very low," which makes me want to go on monitor status, but there is part of me that is frightened by it going out of control. As of now, I am scheduled for a mastectomy in another month, but I continue to waver back and forth.0 -
Feeling Conflictedtwomoms said:My mom (49) discovered a
My mom (49) discovered a lump in May 2010 however she did not get it looked at until Jan 2011, last week she had a lumpectomy and today she went in and they told her that it was cancerous, there is no information online about this. Is there anywhere/websites, that I can look to find out anything? I live in Salt Lake City and am going to call the Huntsman center tomorrow.
I am so grateful for this forum. I have had a recurring PT since 2007. Actually it probably started well before then, as I had a lump since 2001 but was told it was a fibroadnoma. I had 3 lumps removed from the same site: one in 2007 (benign), one in 2009 (benign), and most recently in January 2011 (borderline, later called "benign" by a 2nd opinion). Each time the tumor was bigger and bigger; the last one grew pretty quickly. No margins were ever taken until this year, when it was diagnosed borderline. When he took the margins, he found residual evidence of the tumor, as well as Fibroepithelial cells (which are the germ cells of phyllodes). Thus, the margins were NOT clear. The doctor told me I could opt for a simple mastectomy or continue to monitor the situation every 6 mos. He told me that there was no need for alarm. I sought a 2nd opinion from a respected Cancer Hospital. I was told basically the same thing. I feel incredibly conflicted because I don't want to have major surgery if I don't have to, but I also don't want to foolishly take chances on my health and life. I have been told the chances my my dying from this is "very low," which makes me want to go on monitor status, but there is part of me that is frightened by it going out of control. As of now, I am scheduled for a mastectomy in another month, but I continue to waver back and forth.0
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