Recently diagnosed with malignant phyllodes tumor?

Miranda-P

Hello,

I was wondering if anyone else has been diagnosed with this rare type of Breast Ca,(malignant phyllodes tumor and if so what has your treatment plan been like?

Thank you!

Pam

Moderators

Hi Pam, welcome to Breastcancer.org. We are glad that you reached out here, and hope you find the answers you're looking for.

Until other members come along to post with their own experiences, we hope this information from our main site helps:

• Phyllodes Tumors of the Breast
• Treatment of Phyllodes Tumors of the Breast
• Follow-Up Care for Phyllodes Tumors of the Breast

Please, let us know how it all goes. We're here for you!

The Mods

Miranda-P

Thank You for the info. I really appreciate it!

Have a great day!

Kind Regards,

Pam

Angel111

Hi Pam,

I have been also diagnosed with high grade malignant phyllodes tumor 3.5 cm. Performed lumpectomy with clear margin. My doctor is saying I don't radiation and need follow up check for every 3 months. I am very stressed too..

What is your treatment plan??

With lot's of love!!!

Ange

Miranda-P

Hello Ange,

I'm sorry you are going through this journey as well. We are not alone and with Gods grace we will persevere.

So here's my story-

I had a wide excision lumpectomy 9/26 my tumor was a high grade malignant phyllodes tumor. It measured 5.5cm. All my margins were clear with the exception of an area that was less than the 1cm margin of clearance that any oncologist recommends. When they did the wide excision lumpectomy they also, did a reduction and mastopexy on the opposite side to make the breasts assymetrical because they had to remove so much on the operative side because of the tumor size. Since then I have seen an oncologist and she recommended repeat excision of the area in question with 30 rounds of radiation immediately. I opted to have a double mastectomy which will be Dec. 19th. I’m not a risk taker and I am all about longevity and not vanity. 😊 Our breast’s can be fixed later on.

So this is never a journey we ever want to have to go through but, I am a firm believer that we have to have a positive attitude even when we don’t want to. It’s so easy to become a victim and have a pity party for ourselves. I choose positivity and try and do my best to stay that way. Trust me it’s not easy and I have my down days. I know this is a journey that many have experienced before us and many will have after us. I know that this journey sucks but, I choose to live in the now and remind myself this is “JUST TEMPORARY”

I would say make sure you’re confident in your team and don’t go super crazy reading everything about malignant phyllodes because it has a way of making us lose hope to look at every scenario- “good or bad”. The positive in all of this is it’s a fairly well encapsulated type of breast tumor and the treatment with full excision & *radiation (if that’s what your team decides) is really positive and the outcome is good.

Just remember be your advocate and listen to your gut instincts. Get the peace you need for you and go to the team that gives you the ability to listen and be proactive in your care.

I will be praying for you. I’m here if you just need to vent or you’re scared. Just remember you’re not alone. I am on this journey with you. Stay strong.

Your Friend,

XOXO

Pam

Samantha1978

Hi new here. Differential Dx(surgery soon) for a potential Malignant Phyllodes. I am having a mastectomy on the R, the tumor is 7cm. The path report was not conclusive until excision of mass however I was told they are 95% sure it's Phyllodes. I am so scared of surgery, never had any surgeries before. I will have rad after per oncologist.

Moderators

HI Samantha, and welcome to Breastcancer.org,

We're so sorry to hear of your diagnosis, but we're really glad you've found us. We're sure you'll receive lots of support here to help you feel more at ease for your surgery and upcoming treatment.

In the meantime, you may be interested in these pages from the main Breastcancer.org site on What to Expect With Any Surgery and Mastectomy: What to Expect.

We hope this helps give you some insight and we look forward to hearing more from you soon!

--The Mods

Miranda-P

Hi Samantha,

I'm sorry you are going through this as well. I was recently diagnosed with malignant phyllodes tumor 5.5cm of my right breast too.

My mastectomy is scheduled on Dec.19th. I am having a double mastectomy. I opted to have the other side done because this has been something I hope and pray to not have to re-live again.This was my own personal choice to go for the double, it's what I decided. It was not by any physicians request because of the phyllodes diagnosis. I needed that peace of mind. I encourage you to educate yourself on all the pro’s and con’s, stay positive & focused on a positive outcome. I know easier said than done but, we will get through this! You are never alone.

As for surgery I actually have worked in the OR for almost 19 years now and even though I know the ins and outs of what I'm having done it's still nerve racking and scary. What I can tell you is that, surgery is a place with really great skilled people who are going to treat you with the utmost care and respect. Surround yourself with a good support system who encourages you every day. Stay active and involved in your surgical plan and post surgical treatments. Educate yourself but I strongly discourage reading every website, it will scare you out of your pants. Lo

Will you be having reconstructive surgery right away? I have some good resources re; expanders, and intraoperative perfusion monitoring for the flap. I’m happy to pass any information along that I have found for my surgery.

Hang in there, stay strong, and remember you’re not alone in this journey. I am here for you in any way I can be.

Sending you GOOD Vibes!

Your Friend,

Pam

Samantha1978

Hi Pam,

Thank you for replying. I am so all over the place and not sleeping over this. I found out the results from the hospital website and not a dr. I was screaming in the bathroom reading the MYchart online and navigated that alone on a weekend. I still have moments of anxiety but I am seeing my therapist. This waiting is hard. They biopsied the left breast Monday as they saw a susp .34 cm thing and I am waiting for the results. I understand just going forward with recon at the same time and I would so appreciate whatever you would be able to share with me. I have an appt with plastic surgeon on the 17th and a follow up with my oncology surgeon on Tuesday. You are right, looking at sites and vids have me so afraid. I am so glad that you took time to reply, I appreciate it so much. Thank you I will be sending you so much loving energy for your healing.

Samantha

Miranda-P

Hi Samantha,

I'm going to give you my cell. I'm available to chat whenever you would like. It may be easier for me to explain everything I know vs. trying to email you anything. I am happy to try and help ease your mind and help you however I can. You're not alone and I want to help you since we are in this together. 😊

Take Care and hang in there!

Talk to you soon!

Pam

Angel111

Hello Pam,

Thank you so much for reply.

I went to see DR. Barth at lebanon for second opinion who has completed his study with 48 patient with malignant phyllodes tumor. He advised partial radiation therapy may be beneficial for me. I have only 2 weeks to make this decision since he said radiation works better if given within 3 months of the surgery date.

Do you think Radiation therapy would have side effects. In some article I was reading that sometimes if promotes cancer cell for second types of cancer? Therefore I am very confused what to do.

Any suggestion would really help me to make my decision.

Lots of love!!!!

Angel

kaitlin21

Pam, thank you for your reply to the other user's question. I just posted my first discussion regarding my journey with phyllodes tumors and mastectomy. Reading your post has been uplifting in such a difficult time for me.