Topic: Phyllodes Tumor - Newly Diagnosed - Lots of Questions

Jun 20, 2016 02:58PM Ajmcgarrh wrote:

That is very true, I guess it is personal for a lot of people. I am so sorry I didn't mean to ask anything out of line. Im just a very curious person and pretty open. I seem to have no filter and forget not everyone is the same way. I do appreciate you telling me this though. That breaks my heart that you have gone through this. Heck everyone in these forums. Every single one of you is so strong and I am thankful for all of you! I am very happy that you don't have to deal with it any more !!!

Jul 19, 2016 03:14PM Opal31 wrote:

Hi, so I'm 17 years old and I found a fibroadneoma in my breast last November. Since then, an ultrasound in June showed that I had two new lumps which the doctor thought also to be fibroadenomas. Well, I had surgery last week to get the three of them removed and it turns out the two latest ones are actually phyllodes tumors. My question is, so-what now? A lot of posts on this site say that you have to like a margin of healthy tissue removed when you know it's a phyllodes tumor, so...does that mean that they have to go back and do a second surgery? Any and all answers or advice would be greatly appreciated.

Thanks!

Jul 23, 2016 05:22PM Opal31 wrote:

Thanks De! So, in my last appointment with my surgeon, she checked my incision to see that it was healing alright and explained to me that yes, all the tumors removed were benign. This was great news and there was no mention of a re excision which was also good. However, just this morning, I can feel another lump beside my nipple where my surgery...was just performed. I'm mildly freaked out, so if anyone has any suggestions or advice, that would be great.

Thanks!

Jul 23, 2016 06:51PM ddfair wrote:

Opal,

BTW, great news it was benign!

De

Nov 10, 2016 01:34PM AllyJean wrote:

I have a brand new phyllodes diagnosis (after needle core biopsy) and trying to find information since I've never even heard of this type of tumor before. I'm supposed to see the surgeon for the first consult on Monday and trying to find information so that I can ask important questions and explore all options.

Nov 19, 2016 02:19AM ktmamabear wrote:

This is my story, I've never posted or discussed it with others in the same position as I was, so I hope this may be somewhat helpful or informative to someone.

In 2006, I was diagnosed with borderline Phyllodes tumour at age 21. I initially found the lump myself (right breast, size of a ping pong ball), had an ultrasound, 3 weeks later a lumpectomy and 2 weeks from then then a wide excision. I hoped to be in the clear. However, 4 months later another smaller lump was found in the same breast, about 4" away from the first site (first was lower, second was at the top under my armpit). I had another lumpectomy and it came back again borderline Phyllodes.

I was given the option for another wide excision and to again hope for no further reoccurrence, or to have a mastectomy. At the time I was told that Phyllodes was not responsive to chemo or radiation. Due to the aggressiveness and my family history with a variety of cancers, I made the decision to have a mastectomy and reconstructive surgery. I was advised by my surgeon that the more lumpectomies and excisions I had, the more difficult reconstruction would be if the tumour continued to come back.

During my mastectomy, a tissue expander was put in and I began the reconstruction process immediately after. 4 months later I was nearly through the expansion when a sore appeared on my breast. It was discovered that the expander did not unfold properly, was wearing a hole through my skin and had to be removed and replaced, just to add to my unique and traumatic ordeal. Once it was reset, the reconstructive surgery surgery went well, and I am very glad to say I have had no reoccurrence in my left breast since. I did have an augmentation at the same time as reconstruction.

Follow up is extensive, as I was sent For genetic testing following my surgeriesand was tested for Li-Fraumeni syndrome, which presents an extremely high chance of cancer later in life, in another part of the body, brain, leukaemia being the most prevalent. It wasn't clear if my result was positive or negative as the genetic mutation is so rare.

I now have 2 fantastic beautiful daughters, unfortunately I was unable to breastfeed very well as milk supply was not enough using just one breast. I nursed both for the first 3 weeks, supplementing with formula before just feeding with formula.

I Am curious if anyone has had radiation treatments for Phyllodes, what the outcome was, as it wasn't offered to me as an option but I think i would have definitely tried it had it been.

Wishing you all health, I wish I had this forum during my experiences, it was very polarizing to be so young and trying to put on the brave face for everyone around me.

Nov 20, 2016 10:38PM ktmamabear wrote:

Hi De,

I was diagnosed almost 10 years ago (wow, yay!), so I'm sure some things have changed since then. I'm in Canada but have not seen or heard of the study you mention. I was planning to get in contact with the cancer agency here soon, so I can I inquire and see what they say, I would be very interested to know as well.

I was never given the option for radiation, perhaps because I opted for the mastectomy before too many recurrences, but from what my doctors told me my tumour would not respond to any type of treatments, and that time was crucial to avoid it from getting into my chest cavity. Both tumours removed were classified as benign with malignant tendencies, and extremely aggressive in nature

For those newly diagnosed, and perhaps young as I was, I hope they find comfort in my outcome and they will be as fortunate as I have been to be a survivor. Always keep hope and faith, they will get you through. Glad to help if at all possible, as I said, I felt so isolated at the time, being so young and having such an uncommon diagnosis.

Dec 17, 2016 07:36PM ddfair wrote:

Hi Kitty,

Glad you found this site, but sorry you needed to. How can we be of help to you?

You are so right. It is hard to know what you should do when there is so little. information available. I wish some medical center would start collecting statistics on us. The largest study I could find had 174 women from the 1950s to 1970s. Not exactly up to date.

Were the biopsys you had by needle or surgical excisions?

De

Dec 18, 2016 08:40AM ddfair wrote:

Kitty,

Because a needle biospy can't see all of the tumor, you probably had spots of phyllodes in the first tumor that were missed. Have they scheduled a wide excision yet for you? Be sure to read the information here on Breast Cancer. org about phyllodes. Perhaps the moderators will post a link for you.

Dec 18, 2016 11:24AM ddfair wrote:

Kitty,

Glad you are seeing the surgeon. A good question to ask is, have you ever treated a phyllodes patient before.

The research I read said only 3% ever metastasize. The biggest problem is that they keep regrowing.

Jan 13, 2017 02:37PM tona1994 wrote:

ddfair, Thank you so much for the information you've provided. I was dianosed with malignant phyllodes tumor 5cm with mitotic rate of 30, yet the surgeon said I do not need to v e referred to oncology for consult, just follow up with exam and imaging in 6 months. I have so many questions. This surgeon and hospital have never treated or even knew of these tumors before me. I have no insurance currently but will on Feb 1st. I have not had much say about my care since I found the lump July 2016 until removal in Dec. I am immensely grateful that I received care with out insurance but now I wonder if follow up is lacking due to my insurance status.

I do wonder what is the difference if the tumors are malignant or benign if they are not treated any differently? Please advise if you have any information on this.

Mar 7, 2017 10:52PM ddfair wrote:

Athulita,

So good to get an update on you! Sounds like a tough journey. These tumors can be so darn stubborn. I think the radiation makes a difference on recurrence. I haven't had any more tumors since rads and mastectomy 12 years ago. Know what you mean about it never leaves your mind. Wishing you health.

De

Jul 10, 2017 11:21PM DareToTeach wrote:

Hi folks, I am back after a long hiatus.

Within 2 days after my initial surgical consultation in February 2015, I found out that I was pregnant with my son (after a yearlong bout of infertility - this was a huge surprise!) who was born in October of that year. My surgeon cancelled the procedure and I've been watchfully waiting since then. It worked out though - I was able to get covered under my husband's insurance policy which means I'll pay less than a 10th of the cost I was looking at 2.5 years ago!

I brought up the fact that the tumor had not yet been removed to my new OB/GYN at my annual visit in April and was referred to a new surgeon... and I AGAIN found out I was pregnant (with what appears to be miracle child #2). This time though, my surgeon and I are being much more aggressive in my treatment plan and he will perform the lumpectomy this Thursday, 13 July. I'm solidly in my 2nd trimester and hoping to get all of this behind me! We believe it will be hard to track the tumor through another bout of pregnancy and breastfeeding-related breast changes and so now would be the optimal time.

I know even benign PT have been known to change over time and become malignant, so I am hoping that is not the case despite this long wait.

Many thanks to those of you who have commented and I apologize for my long absence!

Feb 27, 2018 09:00PM sm627 wrote:

Hi Athulita,

Thank you so much for checking in and sharing your story. I am so glad you are doing so well 2 years out without a return of the Phyllodes monster! You have made me feel so much better and have given me hope that things do get better with time. I was diagnosed with a borderline Phyllodes tumor in the summer of 2017, and it has been a challenge not thinking about it often over the last few months. But after reading about your experiences you have inspired me to look at the bright side of life. The one bit of good news to share is that when I went for my 6 month follow up with my BS and she said there was no Phyllodes recurrence. I hope it stays that way for everyone!

I hope that your recovery from your knee surgery is going well.

Congrats on being Phyllodes/cancer free!

Hugs,

Sara

Mar 20, 2018 07:22PM ddfair wrote:

Roxanna,

I was so sadden to read your post. My heart goes out to you. This is what every phyllodes patient fears. You got to be the one in million patient with an aggressive malignant tumour. You're right, doctors like to play wait and see.

I'm rather shocked that Canadian health care did such a poor job of informing you of their lack of expertise. Here in the USA we're always hearing about how much better health care is in Canada. What is their treatment plan for you now? Do you have a support network of friends and family to help you? Sending you big hugs across the border.

De