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Topic: Phyllodes Tumor - Newly Diagnosed - Lots of Questions

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Feb 4, 2015 09:28PM

DareToTeach wrote:

Hi everyone, I'm new here. My name is Rae, I'm 23 years old and a special ed teacher, hence the username. :) I went in for a routine gynecological exam on 1/16/15 and my provider found a lump during the CBE. I had a diagnostic ultrasound on 1/28/15 which showed two distinct lesions that were fairly smooth-looking. The radiologist gave me 2 options: watch and wait for 6 months or schedule a biopsy. My family has a history of ovarian cancer, breast cancer, and many other types of cancer, so I chose to get the biopsy right away. I got my pathology results back today diagnosing me with a borderline/low-grade phyllodes tumor and fibroadenoma. I was very grateful to hear that it wasn't another type of tumor but now that I've done a little more research I'm finding out that there aren't a lot of answers on the internet. My pathology report says "The biopsy shows a fibroepithelial lesion with significantly increased stromal cellularity. No high-grade atypia is observed, and mitoses are inconspicuous." I have no idea what these medical terms mean so if anyone could help out by being my dictionary I would greatly appreciate it. :)

My first question is, are low-grade and borderline actually two names for the same classification of phyllodes tumor? I'm really confused on this point, as I've seen the definitions posted as malignant, benign, high-grade, low-grade etc. but no sites have said if they are the same thing or different.

Secondly, I need to schedule a surgical consultation regarding a lumpectomy. Are there specific questions I should ask at the consultation? I have fairly dense breast tissue, as I'm young and have never breastfed. Will this affect the surgery or outcome at all?

I appreciate your time answering these questions for me. I'm nervous about quite a few things, since this will be my first surgical procedure. I'm also concerned about the costs of lumpectomy, etc. My insurance is not the best and my husband and I bought a house in October so our savings are pretty negligible. If anyone has any experience to share I would greatly appreciate it! Thank you in advance. <3

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Posts 61 - 90 (106 total)

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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 !!!

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Jul 6, 2016 02:17AM Staci999 wrote:

Based on my CNB results, I was told I most likely have a phyllodes tumor. I am meeting with a surgeon Monday. Should I meet with an oncologist before surgery just to discuss options in case it doesturn out to be malignant or would that only happen after removal of tumor and more definitive pathology?

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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!

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Jul 19, 2016 08:05PM ddfair wrote:

Opal,

I am so so sorry you are having to deal with this. No one should have to have a lumpectomy at 17. I assume the tumor was benign. Learn all you can about phyllodes so you can be your own advocate.

If your surgeon didn't get clear margins, even with a benign tumor you may need a reexcision. Know that we are all here for you and you can ask any questions.

De

Hope keeps you stuck. Give up, and move on. Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left
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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!

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Jul 23, 2016 06:49PM ddfair wrote:

OK, don't panic yet. There are many things that can feel like a lump to you when you are newly post op. When was surgery? Has your doctor felt this lump? Your body will form some scar tissue and swelling around surgical site. This is normal healing. Have your doctor check out whatever you are feeling.

De

Hope keeps you stuck. Give up, and move on. Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left
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Jul 23, 2016 06:51PM ddfair wrote:

Opal,

BTW, great news it was benign!

De

Hope keeps you stuck. Give up, and move on. Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left
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Jul 24, 2016 03:45PM - edited Jul 24, 2016 03:45PM by Opal31

Alright, well, my surgery was on July 11th. My doctor hasn't been told that I felt the lump yet. The last time I saw her, she was simply examining the incision spot to see that it had healed well. Yeah, I suppose I'll try to see her sometime soon. Thanks again, De.

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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.

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Nov 10, 2016 05:26PM Moderators wrote:

Hi AllyJean-

Welcome to BCO! We hope you find support and the information you need here.

We have some info on phyllodes tumors on our main site that you might find helpful in figuring out what to discuss with your surgeon: http://www.breastcancer.org/symptoms/types/phyllod...

Hope this helps!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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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.

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Nov 19, 2016 09:46AM ddfair wrote:

Hello Mamabear,

Thanks so much for sharing your story. It will help others who are newly diagnosed to have something to compare how the treatment goes. There's so little information available to us. May I ask how long ago you were diagnosed?

All my research said radiation and chemo were not effective for phyllodes. But after 4 reoccurances I had radiation. The tumor was becoming more aggressive and was down to the chest wall. The radiation doctor said there was a study out of Canada showing radiation was helpful. I asked to see the study but never got it. Perhaps someone can chime in on that. I've been clear for 12 years now so I hope it worked.

De

Hope keeps you stuck. Give up, and move on. Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left
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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.

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Dec 17, 2016 06:21PM Kitty2000 wrote:

I am newly diagnosed Malignant Phyllodes Tumor with Stromal Overgrowth and Heterologous Elements.

One year ago, my mammogram and subsequent biopsy showed a 2cm fibroadenoma. I was told to wait and see. A six month follow up showed no change. Two months later I had a huge lump and went back to the doctor. Within a few weeks the mass had grown to 7cm. Had surgery and pathology report showed phyllodes tumor. Was sent to oncologist. Tumor Team recommended more surgery for a wider margin and then radiation therapy. No chemo. I've done a lot of research. This is a very rare type of cancer and there are limited studies done. I've read and been told lots of contradictory information. It's very difficult not being able to know you are doing the right thing. Had a chest and pelvic scan--negative.

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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

Hope keeps you stuck. Give up, and move on. Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left
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Dec 18, 2016 07:04AM Kitty2000 wrote:

I had two needle biopsies. The final diagnosis was based on the tumor excision.

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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.

Hope keeps you stuck. Give up, and move on. Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left
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Dec 18, 2016 11:04AM Kitty2000 wrote:

I've read everything I can find on this type of cancer--research that's says everything from I'll be fine to I'm going to die and everything in between. I'm seeing the surgeon tomorrow to discuss the next surgery to get a wider margin. I have large breasts so the tumor removal didn't really do any cosmetic damage other than the scar. The remaining tissue just sort of filled in the void. Thinking about total mastectomy now. Not sure what to do.
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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.

Hope keeps you stuck. Give up, and move on. Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left
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Dec 19, 2016 09:41PM ddfair wrote:

So Kitty, did you see the surgeon today? What's the plan?

Hope keeps you stuck. Give up, and move on. Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left
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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.

Malignant Phyllodes Tumor (MPT) Surgery 12/22/2016 Lumpectomy: Right; Reconstruction (right): Saline implant
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Mar 7, 2017 11:44AM Athulita108 wrote:

Hi De and everyone,

Just want to check with you all, how everyone is doing?

This cancer is really so unknown it seems to me it never really goes away, at least from my mind. But I feel blessed for second chances.

I did have my second surgery after recurrence of Malignant Phyllodes last July/16.

First time 2 tumors were removed by lumpectomy on Oct/15, one was 5 cm malignant, the other was not.

Second lumpectomy removed a even bigger 9 cm tumor at exact same spot as the first.My surgeon made a little reconstruction with my own muscle, as I did not want any implants, and I'm happy with results, (small breast).

I still have pain.

First time I had no treatments, it wasn't recommended, but on the second time I had to go through Radiation of the breast affected.

As of today, 03/17 I'm cancer free and it has surpassed the time lapse between the first 2 occurrences. Second time around, it recurred 5 moths after 1st surgery, today has been 8 months since 2nd surgery and 6 after radiation treatment completion.

I'm taking cannabis oils pills w lowest dosage. My diet has been organic vegetarian for more than 20 years, so don't know how to improve on that, except I added fish once in while. I lost a lot of weight (20lbs) and I'm looking to get back in shape, but had knee surgery in jan, and healing is being very slow, can drive, or work...

Take care everyone!

hugs and kisses

Hang in there! God bless

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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

Hope keeps you stuck. Give up, and move on. Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left
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Jun 16, 2017 01:30PM - edited Jun 16, 2017 01:31PM by Firefly8

How is everyone doing? I see that there hasn't been any posts in a few months on this page. Recently, I found out I have many masses and my OB/GYN thinks that they are Phyllodes Tumors, I see the surgeon next week. Has anyone had 8 of them in one breast? The masses are on the smaller side.

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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!

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Feb 27, 2018 03:24PM Athulita108 wrote:

Hello there,

How is everyone doing?

Any news Firefly?

My experience was that only after my 1st surgery they found a second tumor. The "interesting" thing was that it was not malignant as the other one which, thankfully, I had the biopsy done.

But mine was growing in such rapid pace that surgery was inevitable.

My phylodes were malignant both times. Since my Radiation on September 2016 I'm happy to tell you that I'm cancer free, today February 2018. It's been more than 2 years since my first diagnosis.

Life is really so precious, and time does fly. So many things have happened since then, both high and lows. But I hope you all are living heathy lives and without fear. Worries are just not worth it. Every moment counts!

I also just had also a second surgery on my knee, and so not really gotten my all weight back, but no complains 😉 seems this time they fixed for good.

Wishing you all well, strength and steadfastness in these uncharted waters.

Love and Light

Athulita


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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

Diagnosed at 32 years old. DX 5/30/2017 Borderline Phyllodes Tumor 17cm. Surgery 6/27/2017 Mastectomy(right). Hormonal Therapy 9/25/2017 Tamoxifen
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Mar 20, 2018 11:05AM Roxanna wrote:

Here we are at 2018. I hope your Phyllodes tumor is ancient history. Mine is not. New to Phyllodes patients will find it hard to get the right information. You will need it fast, because the growth of these tumors is incredible. I was diagnosed in 2013. I wanted my sugeon to do a mastectomy, but she convinced me that a lumpectomy was sufficient, and just to be sure she got it all, six weeks of radiation. I believed her.

It turns out, mine was the malignant, aggressive type of phyllodes. She should have known that, but I had no clue. My mitosis was 11.

The amount I've learned since then is massive, but it will no longer do me much good. My cancer is now stage IV and it is in my lungs. I've had thoracic (lung) surgery, and 5 tumors were removed, but more have developed so the cancer is still present. Surgery is apparently no longer an option.

Phyllodes is a sarcoma. The best way to deal with Sarcoma is surgery. For Phyllodes, chemo and radiation have little to no effect.


For an agressive phyllodes tumor, one has to be agressive in getting rid of it.

Not all hospitals treat Sarcoma. In BC Canada, for instance, Abbotsford Cancer centre does not. They do not mention that anywhere. They did my first 2 surgeries and did not disclose that information to me. I had no idea that my surgeon knew nothing about sarcoma and virtually nothing about Phyllodes.

Get to an oncology doctor/hospital that has had some success with Sarcoma. Preferably get professionals that have had patients with an agressive Phyllodes tumor where they had a successful outcome.

That's a rarity. So, you might have to settle for success with Sarcoma.

Insist on a thoracic specialist to check out your lungs.

Get a CT, and ultrasound. Make sure a core biopsy is done.

I listened to my doctors. Got the lumpectomy. When that didn't work, more surgery for the wide margin excision. Then Radiation, then the mastectomy. Then another wider margin excision.

The doctors love to play the "let's wait and see game". With an aggressive phyllodes tumor, there is no time for that. If I had it all to do over again, I would have insisted on a mastectomy.

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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

Hope keeps you stuck. Give up, and move on. Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left
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Jun 13, 2018 11:30AM Raesouth wrote:

hi I have just been diagnosed with a malignant phyllodes tumour 5.5 cm in size I had a lumpectomy to remove the tumour a month ago and had to wait 3 weeks for results as it went for 2 nd opinion and then to panel they came back with the recommendation that I have a mastectomy as the edges of the wide excision were not clear. I’m now waiting for the surgery they want to take the sentinel lymph nodes as well but everything I have read suggests that it doesn’t travel to the lymph nodes. They have recommended radiation therapy as well, but there has been no proven therapeutic reason for this.


I feel like they are guessing and playing roulette with my life. As they just don’t seem to know

Rae

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