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Topic: Phyllodes tumor at the age of 17

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: Sep 29, 2016 01:19PM

MalinB wrote:

Hi!

I got diagnosed with a 7cm phyllodes tumor two days ago and will have my surgery next week. I am only seventeen. (and sorry for my English - I'm Scandinavian but I couldn't find any information about phyllodes in my native language, Swedish, so I ended up here)

The tumor seems to be benign, but my surgeon told it is still possible that it would be cancerous.

I am obviously quite shocked and still don't understand what is happening. I'm turning eighteen in two weeks and wasn't really planning to spend the day in a hospital before all this came up.

I really don't know why I'm writing this message, maybe to get some kind of advice or maybe someone else has gone through this earlier and has a story to share to encourage me 😊 I am los

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Sep 29, 2016 01:30PM Moderators wrote:

Hi MalinB, and welcome to Breastcancer.org,

We're so sorry you're here and at such a young age! Of course, it's very rare for someone your age to be diagnosed with a cancerous tumor, so that is good news!

We're sure you'll get some very helpful responses from other members here shortly, but in the meantime you may find it helpful to check out the main Breastcancer.org site's section on Phyllodes Tumors of the Breast for more information on diagnosis and treatment of these types of tumors.

We hope this helps. Please keep us posted on how your biopsy results turn out!

--The Moderators

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Sep 29, 2016 09:04PM KBeee wrote:

Malin, First of all, I am sorry your are dealing with this so young. You have found a very good site for information. I have not had your type of tumor, but wanted to come to offer support. I am hoping your tumor turns out to be benign. Since your tumor type is rare, if you go to the search bar, and type in phyllodes, it will bring up some old threads. If you ask a question on teh end of those, you may get a response because sometimes when people write a thread, they choose to get an e-mail when people comment on it. That would alert them. I am hoping you get some responses, and mostly hoping that all turns up benign for you. Please let us know how things turn out. When is your surgery?

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Sep 29, 2016 10:15PM - edited Sep 29, 2016 10:18PM by downdog

Malin, I too am sorry that you have to deal with this at your age. I had a suspected phyllodes tumour ~ 2009, which was ultimately diagnosed as a fibroadenoma. Since you haven't had your lumpectomy yet, is the diagnosis based on imaging and a core biopsy? In my case, I wasn't confident in the pathologist (significant over diagnosis of phyllodes tumours) at the hospital at which I had planned to have my surgery and transferred my care to a large breast cancer hospital, where they had pathologists experienced with diagnosing phyllodes tumours. It is much easier to differentiate between benign/borderline/malignant phyllodes tumours than it is to differentiate between a phyllodes and a fibroadenoma. Any surgeon can do a lumpectomy, but because of the rarity of phyllodes tumours, you need a pathologist who has expertise in diagnosing phyllodes tumours in order to receive an accurate diagnosis. The bordering area of the tumour and the margin removed is particularly important to be examined for characteristics in order to accurately differentiate a phyllodes tumour from a fibroadenoma. Imaging can be inaccurate on size, but a 7 cm tumour plus a wide margin, which is needed by the pathologist, will mean a large chunk of tissue removed from your breast. Did your surgeon discuss this with you? Anything is possible, but at your age it is more likely a fibroadenoma. I can't recall the % breakdown for benign, borderline and malignant, but seem to recall that malignant is the least common. Even a benign phyllodes tumour requires follow up surveillance for years to come. Imaging, potential biopsies, anxiety and the emotional toll of a misdiagnosed phyllodes tumour could potentially affect you for years. Are you at a large cancer center in Stockholm or another major city? I would consider exploring the option of transferring your care, if you are at a community hospital. You could consider postponing or cancelling your planned surgery next week, as this is not something that has to be removed urgently. I don't know anything about the Swedish medical system, so this may not be possible. Does the Swedish system/insurance you may have cover reconstruction for lumpectomies?They call these divots/dents partial defects, which is a crazy term, because they are 100% defects. No woman welcomes a big dent in her breast, but you are so young. We have bco members ddfair and fleur-de-lis who have had phyllodes tumours, so hopefully one will reply to your thread. Sending good wishes your way.

IDC
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Oct 22, 2016 12:56PM BCFree420YRS wrote:

Hi MalinB,

First off, you are one brave woman!

It is never ever easy dealing with these things.

I too had a cystosarcomaphyllode at 16.. That was 19 years ago! I have not had a reoccurrence and I have been cancer free for 19 years & 2months.

In grade 11, I remember being taught about breast self exams and that everyone should do them. After that week I did one, and found a lump in the top portion of my right breast. I called and booked an appointment with my family Dr. Shortly after that appt, I was getting my first mammogram, and a round of test to determine what it might me. They scheduled me for a lumpectomy. In July of 1997 I had a lumpectomy and by September I was back in surgery having more tissue excised from around the site of the lump and it was determined that mine was in fact cancerous and a phylloide. At the time I wasn't told much, or I don't remember much, either way it was a whirlwind and a bunch of tests and procedures that I just wish weren't happening because at that time all my friends were starting grade 12 and excited for the future while I was hearing worlds like "the tumour could spread" and "more surgery to determine what we do next"

After the second surgery in mid September, we waited for the results from testing the tissue they removed. Nothing more was needed. I was very fortunate that the sarcoma was contained and that they had gotten it all with 2 surgeries!! I have a "missing portion" of my right breast and a 5 inch scar. From the two surgeries.

I thought I would be the only person to have this type at the age I did.

Until today, I have not met or read of anyone else having this type at such a young age. Up until this year I didn't even consider myself a Breast Cancer survivor, because it was so long ago and all o did was have surgery. But meeting more woman who are going through this and now that I am the "typical age" for early diagnosis (35) I am becoming more aware that my early experiences may be worth sharing.

I am so glad to be able to share with you and would love to chat more .

I send you hugs and comfort during this time! It's so so hard to have such grown up issues at such a young age


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Apr 10, 2017 04:13PM - edited Apr 10, 2017 05:18PM by Harvey5707

Dear BCFree420YR

I came across your post by chance and can't tell you how wonderful it is to hear that you have had no further problems and you are doing great nearly 20 years on!!

My daughter was diagnosed in 2012 aged 19. She was monitored for 4 years for a fibroadenoma and it suddenly grew to 6cm. When it was removed, pathology confirmed it was a borderline malignant phyllodes tumour, sounds similar to yours. She had a 2nd operation to obtain 1cm clear margins.

She has had no further problems 5 years on I am glad to say but as there is no information out there. Google is pretty scary!! it is SO LOVELY to hear from someone who has been through this at a young age and has been fine. It has really made my day!!

Would you mind me asking if you still have regular checks & if not when did they stop? My daughter has annual ultrasound scans on both of her breasts. Her consultant says she has as much chance of getting breast cancer as anyone else, I really do get confused with it all.

Your post came at just the right time as recently I have been feeling very anxious about it ever returning. Thank you so much!!

Also, MalinB, I hope you are doing well now. If ever you need someone to talk to I know my daughter would be happy to chat.

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