Phyllodes Tumor - Newly Diagnosed - Lots of Questions
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Hi De,
Thank you so very much for replying to my message. But also, thank you for being such a great force of support and encouragement for this group!
Carrie kindly sent me a private message to let me know you wrote. (Thanks Carrie!)
I appreciate the info on a more positive note on MPT, I was concerned about how much time I have to take care of some pratical issues, my biggest sorrow would be to not have more time to share my journey w my beloved husband. Believe or not.
But, I also believe that nothing happens without a purpose to enrich and elevate our lives. So surrender to what is somehow has brought me peace.
I had a CT scan last Tues, and and happy to say that it hasn't spread. That, for me, was my first victory, hopefully the fist of many. (More peace
Me and Doc. talked about choices of how she will aprouch my lumpactomy. I decided not to have reconstruction surgery, and chose to use prosthetics instead.
She still believe the is a minute chance that the pathology might come back as benign. I doubt as erros are more common the other way around, but hope is a good thing.
After that, we'll talk about getting an Oncologist and supportive alternative treatments, as I'm a tree hugger by nature.
Wishing you all, the best state of mind and heart to continue your journey with clarify and hope.
Love and light, A
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Hello All! I'm new to this site and am posting for the first time to ask for clarification. After reading some of your posts I could tell that there are many experts here that can help me understand my diagnosis.
Several years ago, at the age of 39, I found an enormous lump in my right breast. (I was doing a quick self breast exam just so I could answer yes when my gyn asked if I had been doing them since my last yearly visit..imagine my surprise to find a golf ball there!!!). I went to my appt., gyn tried to aspirate , got nothing. My US showed a mass and I was referred to a breast surgeon. He said it was most likely a fibroid but due to the size it had to be removed. I had the mass surgically removed and was called the following day and told my pathology was benign. What a relief!!!!
At the follow up appt. with my surgeon the following week he said something like "Oh by the way, it was benign but you had a Phyllodes not a fibroid...but it's all good so nothing to worry about". He was in a big rush and had no time to answer questions. I was so grateful that my results were benign that I just accepted it and went on. He said it was nothing, right? I did not know to ask about how wide of a margin was obtained and that worried me after I learned more.
Much later I mentioned the "Phyllodes" to someone and they told me that it was a rare cancer even if it was benign because it advanced so quickly. I was always taught that benign meant not cancer. Which is it?
My friend wants me to walk the BC survivor walk with her Saturday but I cannot do that unless I truly survived cancer. I'll suport her on from the sidelines! Can someone tell me if it was breast cancer or wasn't. I've found no recurrence since and it's been about 7-8 years ago.
Thanks for any help.
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Dear lodo, Welcome to the community. Here is a link to information about Phyllodes Tumors on our website. We hope that some of this information may be useful. The Mods
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Hi Lodo,
Rest easy,you did NOT have cancer. Only about 1% of all phyllodes tumors are maglignant. Benign is benign. Since it's been so many years out for you things should be fine. I highly recommend reading the info the mods sent a link for. Phyllodes is a completely different animal from other breast tumours.
De
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Hi everyone,
This is just an update on my case.
I had my partial mastectomy or lumpactomy on Oct. 8th/15, everything went smoothly.
During surgery my dr. found a second lump. The big one was confirmed malignant phyllodes and the second as benign fibroid. After final biopsy, the margins were found clear or cancer free.
After 3 more consultations w hemo and a radio oncologists, they decided that no further treatment was recommended. Even the preventive radiation was scratched out since, as it seems, new studies are reveling no substantial benifit. I'm not sure if im entirely sure of what that means or if I'm relieved yet. But I'm officially cancer free.
I'm now working on supportive alternative treatments, starting with acupuncture, cleansing, meditation and strengthening my already organic/vegetarian/fish diet (before, I was vegan for 14 years, and macrobiotic for 10 before that)...go figure.
So now I'm starting to believe that focusing on soul searching/emotional balance might be more of great help than diet alone...
Please, share your thoughts/ideas and experiences, as I start this journey on the unknown.
Much love, light and health to all of you facing this diagnosis.
A
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Athulita,
So glad to see your post and hear all went well. I would like to know more about the recent data showing no benefit to radiation treatment.
De
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Hi De
I was quoting my radio-oncologist, those were her words. After that, she brought my case to a tumor board who agreed w the course of non-treatment. What I found intriguing was that she mention 2 things,
1- that my surgeon (who said the same to me), mention that she did not agree, because in case of recurrence she wouldn't be able to repeat a lumpectomy and will have to perform a full mastectomy.
2- that she called the UK cancer institute, and they do recommended "preventive" radiation, but it was up to me to decide. My Hemo-oncologist showed the cancer society (maybe be other name) website which the hospital/doctors work under, and they stated the same non-treatment for clear margin Phyllods.
Have you heard anything different, what is your State?
Thanks, A
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Athulita,
Thanks for getting back to me with that info. The. hardest thing for me on this journey has been that this is so rare there's just not enough data to make a decision on. I wish someone would start collecting data on treatment option outcomes. When I was first diagnosed in 1995 the largest study I could find included 172 patients from the 1950s to 1970s from all over the world. It was impossible to figure out what treatment the three women who died of phyllodes had done or not done.
After 4 local recurrences, I opted for a modified radical mastectomy. Tumour board recommend radiation. My tumours always contained DCIS and LCIS in addition to borderline or malignant phyllodes. My radiation Dr said there was a Canadian study showing radiation treatment lowered recurrence of phyllodes. I wanted to see it myself as everything I had read said both radiation and chemo were of no benefit. He never did get around to showing it to me. I got a second opinion from a military radiation Dr ( because they don't make any more money based on number of patients treated) he also advised radiation based on recent study from Canada (this was 2004) I also had " lateral extension to one lymph node" so they were concerned about stopping any spred. I still want to see the Canadian study. I live in Washington state btw.
De
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Last month I had my routine screening mammogram and was offered the 3D mammogram. I was told that there were a couple of abnormalities and would need a diagnostic mammogram, which led immediately to an Ultrasound. After that I was scheduled for a needle biopsy which showed I have Phyllodes and earlier this week went through a lumpectomy on Monday. I am now waiting to hear if the breast surgeon was able to remove enough tissue to give clear edges. I have already faced two other chronic illnesses (Hepatitis C and Salivary Gland Cancer--that was at the back of the gland behind my ear). I am now telling people that even if they have to pay for the 3D to get it because the Breast Surgeon couldn't feel the tumor although she knew where it was located.
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Hi Cheery-
We want to welcome you to our community here at BCO. We're sorry for the circumstances that have brought you here, but we're glad you've joined us, and hope this becomes a place of support when you need it most. We're joining you in hoping that the surgeon was able to get clean margins, please let us know when you get the results back!
The Mods
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Cheery,
Welcome to the phyllodes forum. So sorry you needed to come here, but you will find lots of support and information here while you wait for final results. I would encourage you to read all the articles available on phyllodes here at breastcancer.org. Perhaps the mods could post a link for you?
De
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Cheery,
Here is a link to the Breastcancer.org page on: Phyllodes Tumor: Treatment and Follow up Care
Come back often and let us know how things are progressing for you.
Healing thoughts to you.
The mods.
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Hello. For those diagnosed with malignant phyllodes tumor, was the size of the tumor, how fast the tumor was enlarging and age at diagnosis predictors of it being malignant? It really is so hard trying to understand more abobut this disease because of little research done. My mom has been found to have a suspicious lump a few days ago, and the mammo looks most likely a Phyllodes. dealing with this knowing its a few days before christmas really is hard, but finding this site and thread will truly be of a big help.
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Sushi, even if your mom has a phyllodes tumor, most of them are not malignant. Stay calm until the pathology comes in. It may very well be benign
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Hi, Melissa thank you for the reply. Its just that things came really fast with her telling us about the mass just a couple of days ago and reading about the results of the mammo and ultrasound. Reading birads4c was just so surreal. But yes I am trying to be calm and Im still keeping my faith. I, as well as the rest of the family, are trying our best to think positively still.
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Hi,
To answer your questions, no, size, rate of growth, and age at onset, are NOT predictions of malignancy. Only 1% of all phyllodes tumors are malignant. The odds of everything being OK are definitely in your favor. I echo Melissa, try to stay calm. We are all here to support you if you need us.
De
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Thank you for your encouraging words. Still keeping the faith. I hope things turn out well
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I recently had a Bilateral Mastectomy for Malignant Phyllodes tumor with Liposarcoma components. The Tumor was 6 cm and wasn't on my mammogram last year. I found it myself. I am 55 years old. The most recent data suggests that 10 percent are frankly Malignant, others are Borderline or benign. The Tumors are staged according to mitotic index(rate of cell division, size, and the presence of abnormal stroma (mine being Liposarcoma. The current categories are: benign, borderline & Malignant. All have potential for local recurrence and malignancy, thus should be removed with a wide margin of 1-2cm. Please feel free to join the Phylloids Facebook group as the members are well educated and supportive. There is little research on Phyllodes and Chemotherapy is ineffective. I hope this clears up any questions. Love & Peace, MPT Lady.
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Hello. Is this thread still a good place to come and get Phyllodes information?
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Hi everyone,
I hope this find you well. I was away for while dealing with implementing life style changes and such, it seems that is a on going process that will never end. One of my friends has also being diagnosed w breast cancer, hers was invasive duct carcinoma (if i"m not mistaken) and she just finish her Chemo Cycle, doing well waiting for reconstructive surgery and Radiation.
Meanwhile I found another lump, at the exactly same spot at the original one. Had biopsy yesterday and will have result by next Tues. My Dr. said either way (if it will be benign or not) I will have to go through another surgery, unsure what kind (another lumpectomy or Mastectomy).
She really wanted me to go through radiation last time, and will consult w my oncologist (she is a Breast Specialist) about a possible radiation treatment in case it's a recurrence.
Last year, when I was diagnosed neither chemo or radiation were suggested as the protocol for Phyllodes has changed apperantly, but now, due to its rarity, I'm not sure what to expect.
First time I found a little lump in July, was diagnosed in August had surgery in October, it seems to have grown quite a bit, now it seems to be growing in a faster paste, in just a month has grown the same as last time period.
I'm hopeful it will not be malignant as before, she found 2 tumors, 1 being malignant but not the other.
I hope you all are dealing with this with courage and strength. And I'll keep you posted about what happens.
Big hugs, A
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Hi Athulita,
Sorry to learn of your recurrence. I thought I'd answer this and your PM to me on the public board for the benefit of any other phyllodes patients seeking information.
First my history. Found first lump in 1994 at age 41. Had wide lumpectomy and silicon implants removed. Two motnths later,another lumpectomy to get clear margins. First diagnosis, borderline phyllodes with DCIS and LCIS.
Second reoccurrence 1996 another wide excision lumpectomy. Same borderline phyllodes tumor with DCIS and LCIS
1998 and 2000 lumpectomies for lumps that turned out to be abnormal scar tissue at previous lumpectomy sites.
Third reoccurrence,2003. Wide lumpectomy.Malignant phyllodes with DCIS and LCIS
Fourth reoccurrence, 6 months later, 2004 malignant phyllodes again. Had a modified radical mastectomy and sentinel lymph node dissection. Margins not clear so I had to have a re-excision of the mastectomy bed 8 weeks later. Followed by 39 radiation treatments. A year later decided to have other breast removed for symmetry.
You mentioned in your PM that the protocol regarding radiation and chemo has changed. Tell us about that. You also said you had notice that people start out benign and later become malignant. I have not seen that. In fact doctors have told me that rarely happens. However, it certainly happens that a woman can have so many reoccurences of benign phyllodes that she will end up with a mastectomy. The general public can't believe a woman can lose her breast to a non cancerous tumor.
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Hi De,
Thanks again for being so available to answer questions and support us on this board.
I'm sorry to hear about all you had to go through, but on the same note I'm happy to hear you are well and thriving.
I'm not sure anymore, but I could swear I read about at least one case where non-malignant recurred as malignant later... but I might be mistaken. Sorry about that.
As for my docs. it seems they were not interested in further analyze the tumor or else, meaning, I have no idea about any studies made, or blood tests, besides the biopsies before and after surgery that confirmed malignancy. Is there anything I should ask about it this time?
What I know so far, is that this time the results came back positive again and my lumpectomy it's scheduled for June 17th.
I had an ultra-sound back in Feb which revealed 2 spots which they believed were trapped fluid from surgery.
But in end of March I felt a small hard lump at the same spot of the 1st one, and of course, couldn't believe it as it hasn't being 1 year yet...I waited to see if it would change (as you know Phyllodes grows fast), maybe a mistake, but the fact is by April I thought it has doubled, made an appointment and asked to have a biopsy right away, which she agreed. That day she ordered a new ultra-sound and mammogram before results, which showed it is sitting on the muscle this time.
She had said I would have to remove either way, but by being malignant again, I was told she will have to remove part of the muscle to make sure I have enough margins taken out for a better chance to be clear.
No lymph has been affected, but I still have a CT scan to go (chest and pelvis), to check if it has spread (rare but possible)
About the Oncologist. On my first visit she showed me a webpage for the our County Medical Association and their recommended therapy for Phyllodes or the lack of it, before my case was presented to the Medical Board for rare cases/cancer... in it, was stated that "records showed" in the past that no benefit was observed in patients who had gone through Chemo, or Radiation compared to ones who didn't. Furthermore, there was trials where "localized radiation" had not shown any difference either...
This time my Breast Specialist already contact her, and will further discuss my case, depending on results of the margins, but she said that chances are I will have to go through radiation, but I'd have to wait for an appointment with Oncologist to discuss the course of treatment. I really hope that somehow I can skip it again... but we shall see.
It seems to be the nature of Phyllode to recur.
I feel in good spirits and positive that it shall be just another curve ball and that I will, as well as all of us dealing with this, that we can move on and have relatively normal lives and count our blessing along the way.
Much love to you, and everyone,
Thanks for listening,
A
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Hi Athulita,
I meant to reply sooner to you. I have lots of sick friends all of a sudden that need help and haven't been able to get back to you.
Have you had surgery yet? Are they planning on taking some muscle too as you said tumour is on or into muscle.
Ask your surgeon what the miototic rate is in the tumour. That will tell how aggressive it is and if it is becoming more aggressive since last time.
I wish I could tell you this will end someday, but unfortunately the threat of recurrence is always there with phyllodes.
Best wishes to you.
De
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okay so I am 29 and in January I noticed a lump went through the steps of ultra sound, biopsy , and the results it's a phyllodeTumor. I had it removed in Feb. Now it's June and I recently saw my doctor again for another lump in the same breast. While I was there getting lump number two checked out they also looked at where my phyllodes was removed and it's back! In less than 5 months of having it removed it came back ! I go next week to have lump number 2 biopsied. My questions is how long have you all been fighting with phyllode tumors ? Anyone decided to have a mastectomy and reconstruction? Anyone ever had more than one phyllode in the same breast ?
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Hello Ajmcgarrh,
Welcome to the phyllodes thread, but so sorry you needed to come here. I started fighting phyllodes 21 years ago at age 41. The same tumor came back 4 times. The last time it reoccurred in 6 months. Finally had a mastectomy and radiation, no reconstruction. That was 11 years ago. Phyllodes are extremely tenacious!!! I think of them as being like a dandelion weed. If even a single cell is left behind it will regrow. Please read the information pages about phyllodes here on BCO. Hopefully you will be successful in permanently removing your tumor.
De
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Hi aj and welcome to Breastcancer.org! You're sure to get lots of support and answers here, as you can already see from ddfair's post!
As she mentioned, you may want to check out the main Breastcancer.org site's pages on Phyllodes Tumors of the Breast.
We hope this helps! Please keep us posted on how your biopsy goes.
--The Mods
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hi ddfair !
Just curious but when your tumor would come back would you always just have it removed ? Before you decided to do the mastectomy.
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Yes, each time the tumor came back I'd have a wide excision lumpectomy. Til there wasn't enough breast left to get clear margins.I chose not to have reconstruction because I still fear a recurrence.
De
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Hi DD, is there a reason you waited so long before having the mastectomy ? Since you had been dealing with them for so long? Why wait until you didn't have any clear margin? Thats the issue I'm playing over and over is do I just live with these in hopes that they will never return? Or do you take extreme measures to end them. I have had one removed and come back in less than 6 months and possible a 2nd in the same breast. I don't want to look like a pin cushion because of always having them cut out.
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Hello Again,
The choice between mastectomy and lumpectomy is very personal,individual, and dificult. At first I chose lumpectomy because I was young. My insurance didn't cover prosthetic forms or bras.They are quite expensive out of pocket. My breasts were a big part of sexual pleasure too. But the biggest reason was not trusting the military hospital to do a good job with pain relief. When I had the first lumpectomy with bilateral breast implant removal it was sheer torture. The paralyzing drug worked, but not the pain relief drugs. I heard and felt EVERYTHING! I can't even convey how horrible it was. I was prepared to simply die of phyllodes rather than ever let them cut me again. They finally agreed to allow a surgical nurse friend to scrub in for the clear margins reexcision. She was my advocate to insure the anesthesia was adequate. Later we had private insurance and got care at civilian hospitals. That was much better! However, that insurance didn't want to pay for a mastectomy until the doctors could show that lumpectomies weren't curing the problem.
I've been happy with bilateral mastectomy. No more mammograms, no more bras. But I'm older now. Only you can decide what you can live with.
De
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