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Topic: Malignant Phyllodes Tumor Recurrences _ 1,2,3

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: Apr 4, 2020 06:36PM

Athulita108 wrote:

Hello dear PT ladies and friends,

I come to you in order to find out if any of you have experience with Recurrent Phyllodes, more specifically, Multiple Malignant Phyllodes Recurrences.

We know PTs in general have a high chance for recurrences, and how hard it is to get information about it.

Most "common" recurrences seems to be - Benign to Benign / Benign to Borderline / Borderline to Borderline / Borderline to Malignant / but not so much Malignant to Malignant. Or am I mistaken?

Some of you have shared cases of Multiple Recurrences with "jumps" from one grade to another.

But, is anyone else with experience or knowledge of more Multiple PT Recurrences? I can't find any literature on it.

In my case, I have had Malignant Phyllodes Tumor since my first diagnosis. All on Left Breast.

At first, I wanted to have a mastectomy, but was advised to hvea a lumpectomy instead. And so I did. Twice.

Diagnosis 1 in 2015: Lumpectomy without recommendation for Treatment. Clear margins.

Diagnosis 2 in 2016: Lumpectomy with 30 rounds of Radiation, No Chemo. Clear margins.

Diagnosis 3 in 2019: Double mastectomy without recommended Treatment. Lymph node dissection (negative). Removal of chest muscle (as tumor was already infiltrating tissue). Positive anterior margin. No reconstruction.

I'm still recovering from last surgery (March/2020) and will have a second opinion app. with Oncologist-Surgeon @ Stanford to evaluate possible skin graft. Planning to have a 3rd @ UCSF.

During mastectomy, my surgeon was unable to remove anterior skin because the lack of elasticity of radiated skin.

She did get 1mm margins but they were not clear, remaining only skin. Considering but I had clear margins before, and Radiation, and still had another recurrence, the tumor board seems apprehensive to leave the skin behind.

Changing hospitals, I will have a chance to her from another 2 tumor boards. In addition to the 2 I had (1 from surgeon hospital, 2 from Oncologist hospital).

Being a 53 y.o. and a vegetarian since I was 15, I transitioned between macrobiotic diet to vegan, to pescetarian, a juiced after 1st cancer, took CBD oils after 2nd, and now I'm introducing organic-vegan-keto diet after 3rd. If you interested in learning more about yourself and focus on healing rather than the disease itself, please research "Functional Medicine", a step further from Integrative Medicine. I feel exited about it and I'm learning a lot, I always knew cancer was also a journey within - as well as outward. Body, mind, emotions, and spirit connection speaks to me.

If you would like to share your stories, thoughts, experiences, please join this thread!

Welcome. Heart

Much Love, Light and Strength to you all.

Athulita

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May 10, 2020 02:54AM Bam_Bam wrote:

Athulita I'm so sorry u are going thru so much. I'm sure you've wondered (& as I read your post so did I) if a total mastectomy in the begining would have stopped it because with regular BC you hear that it responds better in the first "round" of treatments. You can't help but wonder could there be parallels...

I'm dealing with a PT that's benign but large & it can recur & it can escalate. They said it was a fibroadenoma so I waited for it to go away like my others had - but instead it started growing fast a few mths back & now they say it's a PT.

I truly understand you're feelings about initially wanting a Mx instead of a lumpectomy. I also want a total Mx & surgeon is talking lumpectomy -- but I am *committed* to a total Mx - so he has to get onboard with me for this... bc sometimes that decision regarding lumpectomy verses mastectomy is not all about the surgical aspect - but much more about you as a whole & *your* peace of mind & hopefully allowing you to have less anxiety over things as you go on.

There was a study about that & it actually concluded that surgeons *must* be more mindful of not just the physical health of the person facing breast cancer - but also the *mental health* of that person. Especially when it comes to those people that, with absolute conviction in their desicion, do not want a lumpectomy & ask *specifically* (with an educated understanding) for total mastectomy.

Some women want BCS (breast conserving surgery) - bc it actually causes them more anxiety when it comes to losing their natural breast tissue. Some women absolutely do not want any breast tissue remaining bc of the same angle - regardless how small or large the tumor is & even if a lumpectomy is doable.

Your mental health is as large a part of your total well-being as is your physical health. Hence the choice some women make to be able to retain their natural breast. And conversely it's the same for those of us that do not want to.

I genuinely love this onco surgeon I've found (not to mention the plastics surgeon!) & I so hope I can convince him to do this for me & that he can embrace the understanding that by doing a mastectomy for me --- he not only improves my physical well-being, but also my on going mental well-being.

And in this fight, you need as much of that as you can get...

But this isn't a regular type BC Athulita - it's a sub-type of Sarcoma & there's little concensus on treatment. They all have different takes on it. Some drs say radiation helps - others disagree. As far as jumping grades goes - yes - they do escalate. But if the tumor started at malignant then as far as I know a recurrence would be the same grade -- as I've never read that they "de-escalate" in grade.

I guess they *could* - but I haven't read that in the research.

Then again I haven't looked for that topic in the research.

Regardless Athulita - get to a large major Sarcoma Center & get a Sarcoma surgeon involved that does breast tissue work. You could possibly get a Sarcoma onco surgeon with a microsurgeon that could take a lot of that skin off & replace it with a flap of skin from somewhere else on your body. Just get Sarcoma specialists involved that are from a large Sarcoma center. Studies have shown better outcomes with the larger Sarcoma centers. There you will find Drs that solely specialize & concentrate their efforts in Sarcoma treatment. You would think Stanford would be listed as a large Sarc center. Idk. But I do know that they have some of the brightest minds in medicine on the entire planet!!

Google Sarcoma Alliance Athulita. Look at the links they have that show large centers by state. Google "List of the largest Sarcoma centers". Then Google the doctors & surgeons & radiologists in the programs - and decide on a few you want to consult.

❤️



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