Malignant Phyllodes tumors

tona1994

My survival journey began early July 2016 when I discovered a small lump. The concern about the lump was exasperated by the fact I lost my insurance coverage when I was let go from my job during a mass lay off. However, I was able to find that Mary Bird Perkins Cancer Center was conducting a free breast cancer clinic so I went. They immediately sent me for 3D imaging and a sonogram that the radiologist diagnosed as a benign fibroid to follow-up with in 6 months. I was relieved, however by the end of August the tumor had grown substantially. So I called the patient counselor at Mary Bird she informed me that the report said to follow-up in 6 months so there was nothing they could do. Of course, as the lump grew I became more concerned then a friend told me about the free or sliding scale care clinic at Chabert Hospital. Skeptically, I called and sure enough they would see me but not until Nov 2nd. The lump continued to grow so that it actually was becoming visible. My friend convinced me to go to the ER for faster care in October. They did another sonogram which the radiologist could not identify but did confirm the lump had doubled so he referred me to surgery for biopsy but the earliest appointment was Dec. 7th. By that appointment the lump had more than tripled in size, was heavy and uncomfortable to say the least. The surgeon reviewed the past tests, did a biopsy right then and scheduled my surgery for removal on

Dec. 22nd the earliest surgery date. She explained the results of the biopsy would determine the extent of the surgery and I would know within 5 days the results. However, the pathologist at the hospital could not identify the tissue and had to send it to Tulane. So I did not get the results until the 19th which revealed a rare malignant phyllodes tumor of which none in the hospital were familiar with. It would not require lymphnodes removed but it would require a large clear area removed around the tumor and recurrence of these tumors are often probable based on mitosis rate 5 being low 20 or more very high. However, unless it mastitis they don't usually spread to other areas which is some comfort. I had the surgery feeling very blessed the tumor was gone and the margins removed where cleared. Two weeks later I went to my follow up appointment healing great. However, the doctor now would not be sending me to oncology for radiation now even though my mitosis rate was 30, since I have no insurance they will just closely monitor me every six months. Wow, I just got diagnosed with cancer with high recurrence probability but can't see an oncologist??? I'm freaking out a little bit here! Can someone please advise your thoughts. I will have insurance coverage February 1st and be trying to get in with an oncologist then. I have so many concerns and questions. They say these do not usually spread to other tissues but what about my other boob? I don't have much breast tissue left to continuously keep having surgeries

Moderators

Hi tona1994, and welcome to Breastcancer.org.

We're so sorry you have to be here, but really glad you found us. We're sure someone will be by soon with some answers or advice to help.

In the meantime you may be interested in checking out the main Breastcancer.org site's pages on Phyllodes Tumors of the Breast, which discusses some treatment options for malignant tumors, as well as follow-up care.

We hope this helps. Please keep us posted on how your appointment goes in February and the treatment regimen you elect.

--The Mods

ddfair

Hi Tona,

First of all I'm sorry you have been through so much before finding this site. But there is a wealth of information and support for you here. Next, take a breath. Have a good cry as often as needed. You are going to get through this. We are here for you. We get it.

Okay, here's my advise. Start getting recommendations on surgeons and oncologists in your area that have experience with phyllodes if possible. Go ahead and make an appointment now for a time after your insurance will be active. If you wait til you have insurance they will be booked out several weeks already. You need to get in as soon as your insurance is in effect.

Start writing down questions now as you think of them. Get a notebook for questions, info you find, important things about the treatment you had so far, etc. It's very handy to have it all in one place.

Your tumor should have been reviewed by the hospital tumor board. That would include their recommendations for future treatment and follow up. Your mitosis rate is very high. I would want to see an oncologist and radiation doctor. Some doctors say phyllodes is not a true breast cancer. Instead it is a rare sarcoma that only occurs in breast tissue. Therefore radiation and chemo are not effective. Also, I've never heard of anyone having phyllodes in both breasts. Your diagnosis does put you at higher risks for abnormalities in the other breast, just like any other breast cancer patient.

Phyllodes tumors do tend to reoccur. However, you said the surgeon got clear margins so that's a good thing. Also, I want to put your worries to rest about not having enough breast tissue left for any future lumpectomies. I was a barely A cup and still had 6 lumpectomies before finally having a mastectomy. You still have choices.

Hope this was helpful for you. Please keep us informed about your treatment. Feel free to ask anything.

De

tona1994

Thank you so much De for your reply. The clinic I'm going to takes a while to get into they scheduled me back in six months. I did call an oncology office but they said the surgeon has to refer me and send over my records. Do you have a suggestion how to expedite that?

ddfair

Tona,

I don't know how to expedite getting a referral from the surgeon. But I would sure start bugging them. Have your doctors done a tumor board yet? I would want copies of that. Sounds like you are going to have to be the squeaky wheel. Wish I had better answers for you.

De

tona1994

No my surgeon didn't do anything but give me a copy of the pathology report. From what I can tell it was malignant, they took 1cm margin that was clear and the tumor is G2. That is all I know for now. The doctors and pathologist at the hospital have never heard of PTs until me. They read what knowledge they have from the internet. My pathology had to be sent out to be identified. So as you can imagine I hand zero confidence in the advice to "wait six months for a clinical exam and sonogram and if they find recurrence might try radiation instead of surgery cause they respond very well to radiation." YEAH the exact opposite of anything I've read!! I am going to MD Anderson if they'll take me, already emailed my appointment request.

ddfair

Tona,

If you can get in to MD Anderson that would be great. It seems odd that your doctors had never heard of phyllodes. It is very rare so I can understand never having seen one, but they should have at least heard of them.

I do have to say that following you every 6 months is the standard of care. If you find a lump yourself before the 6 months get right in. If you have no new lumps after 2 years they will start seeing you only once a year. But you should be examined by a breast surgeon for these follow up exams not a GP.

I don't know what G2 on the tumor means. Can you explain that? There are new tests and measurements since I was last diagnosed in 2004.

De

tona1994

Omg, I was just going over my path report with my mom and after looking at it I realized it says the margin was 1mm NOT cm!! The surgeon mentioned that the margin was not as wide as ideal but I looked at the report and truly thought it said 1cm. I am so upset right now and he said not to come back for 6 months well I won't be back. I'm going to MD Anderson! I'm hoping it's a typo, but if the margin taken was clear, would they need to go farther?

ddfair

Tona,

Uh-oh, this is not good. Wide excision lumpectomy is the standard treatment for phyllodes tumors. If. the surgeon didn't get at least 1cm of clear margins all the way around you're going to need a reexcision and soon. My first time lumpectomy the surgeon was certain the tumor was a fibriodoma so he didn't take wide enough margins. Long story, but the outcome was I had to have a reexcision. I'm so glad you are going to MD Anderson. You haven't been treated very kindly or competently so far. You need someone with more experience. This must be so upsetting for you. Hugs to you.

De

tona1994

Thanks De I'm so thankful for the knowledge and support I'm getting from you and several others in these support groups. I cringe to think what the outcome could be in 6 months if I just blindly followed inexperienced doctors. It scares me for ladies who don't question doctors and the care they receive.

My 1st husband passed away 13 years ago after a 8 year battle with Leukemia. However, I had him 7 years longer than we were told because I researched and found groups and realized MD Anderson was the place to take him. His hemotologist told all the other doctors in his practice to listen to me seriously because I'm OCD when it comes to research. He told me if I ever went into the medical field come see him for a job LOL.

ddfair

Tona,

Good on you for being your own advocate for yourself and your late husband. You have really been through hell.I'm so sorry about your husband. I lost a dear sister- in-law to leukemia(CML) 12 years ago. Have you gotten an appointment date yet for MD Anderson? Can they get you in like the day after your new insurance takes effect? Here's hoping you get better answers to your treatment questions.

De

tona1994

I'm calling today if they don't call by 3pm and I'm pushing for that.

ddfair

Glad to hear you're staying on top of things. Thinking of you.

tona1994

My appointment is February 2nd I emailed my pathology so they could determine which clinic to put me in. I see a surgeon first they said to plan 3 to 5 business days there.

Mrshowell

HI, I know what you are going through. I had a 10cm MPT removed about 1.5 years ago. There is an amazing support group on Facebook just for phyllodes sisters. It is a very confusing disease because not a lot of drs know about it. The support group has atlas 1000 ladies and you'll get a lot of your questions, concerns, and fears helped there. Good luck

facebook.com/groups/PhyllodesSupportGroup/

Kimber