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I had a palpable lump for 4 years, that was believed to be a…

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I had a palpable...

I had a palpable lump for 4 years, that was believed to be a fibroadenoma. I had to fight really hard to get it excised with less than 1mm margins at which point it was determined to be a 9x5x8cm benign phyllodes with multifocal IDC and DCIS inside it - stage 1a , triple positive. I was treated with 12 weeks taxol/herceptin, and herceptin every 3 weeks for a year, and 4 weeks of radiation. I had some questions in the pathology report that went unanswered, so I sought a 2nd opinion. That pathologist believed that the phyllodes is actually borderline, and that it wasn't multifocal IDC, but actually one big tumor, possibly up to 6cm that was accidentally sliced up by gross pathology because again, they thought it was a fibroadenoma, and did not realize what was inside. Original pathology only took 15 cassettes and threw away the other 95% of the tumor, so I think it's unlikely that we can actually confirm clear margins or size of tumor. The guidelines, I believe for stage 2b triple positive is AC -THP or TCHP, right? I only got TH, which is like half of the AC - THP treatment. Is it possible to do the AC treatment now, while I still have my port in as I just finished my 9th herceptin. And do you think it's possible by ultrasound to locate the scar tissue for attempt for clear margins, after I've received radiation? Thank you.

Doctor's Assistant: Are you keeping a personal medical record while dealing with this?

I'm not sure I know what you mean.

Doctor's Assistant: Anything else in your medical history you think the doctor should know?

I'm only 47.

Submitted: 8 months ago.Category: Oncology
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Answered in 1 hour by:
11/10/2017
Oncologist: DocPhilMD, Medical Doctor replied 8 months ago
DocPhilMD
DocPhilMD, Medical Doctor
Category: Oncology
Satisfied Customers: 59,682
Experience: Internal Medicine Doctor
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Hi, this is Dr Phil, here to assist you. I am Board Certified with over 10 years of experience. I will respond with my answer shortly. Thank you.

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Oncologist: DocPhilMD, Medical Doctor replied 8 months ago

still need help?

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Customer reply replied 8 months ago
I was diagnosed at 46 in Dec 2016, and received my first infusion Feb 7. What was the chemo standard of care for a 1.8cm IDC HER2+ ? My oncologist chose 12 weeks of taxol and herceptin, based on APT study, that at the time had only released 3 year data. They just released 7 year data this past summer She didn't offer me the robust chemo regimen, and I don't understand why because I was multifocal and I was young. If she had actually given me the more robust treatment in the first place, it would have covered me for the stage 2b, and I wouldn't be having this conversation.
Customer reply replied 8 months ago
More clearly my questions are:
1. At Jan 2016, what was the chemo standard of care for a 1.8cm multifocal IDC triple positive?
2. At Jan 2016, what was the chemo standard of care for stage 2a and stage 2b IDC triple positive?
3. If I was treated with 12 weeks taxol and herceptin because they thought I was stage 1a, but on a 2nd opinion may now be stage 2b, is it possible to get additional chemo? Why or why not?
4. Different chemo agents work in different ways to disrupt and kill cancer? If you have multiple chemo agents, then it is more likely that if one chemo didn't work as well that the other will? If you get chemo after surgery (adjuvant) then we have to assume that the chemo is working because we can't measure tumor response like in neoadjuvant?
5. I have a lot of SNPs, that make my response to medication erratic. I am worried about placing all my trust in taxol in herceptin for a possible stage 2b breast cancer.I would have rather mad multiple chemo agents to kill the cancer once and for all. And now I'm worried that I just have circulating cancer cells that are going to start proliferating once I stop herceptin or tamoxifen. What you can tell me to say that the treatment I had gotten for stage 1a is adequate for stage 2b?Is it possible to use US to locate scar tissue to try to obtain more margin on the phyllodes? Is the area was treated already with radiation does that compromise anything?
Oncologist: Dr. David, Doctor (MD) replied 8 months ago
Dr. David
Dr. David, Doctor (MD)
Category: Oncology
Satisfied Customers: 49,911
Experience: Experienced Oncology Physician trained in New York City. I'm ready to help.
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This is Dr David.
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Customer reply replied 8 months ago
This is my first time on this site, so please advise if I'm handling this incorrectly. Are we instigating a online chat now?
Oncologist: Dr. David, Doctor (MD) replied 8 months ago
At age 47, most doctors would have recommended adriamycin, but no Adria is not sub standard of care. If you have heart injury history, the Adria can be dropped. Adriamycin and herceptin each can be cardio toxin. Your Med onc should be monitoring your heart function with mugs scans. By getting radiation therapy, the margin status is not a worry now. You don’t need additional surgery for negative margins. More surgery will only cause more scar tissue. You should take some tamoxifen now for 5-10 years. Let me know if you have questions
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Customer reply replied 8 months ago
No, thank you. I process better reading, if that's alright.
Customer reply replied 8 months ago
I have 3 month echoe, and no effect on my heart. I use to be a marathoner, and high altitude trekker, and no heart issues personally or within my family.
Oncologist: Dr. David, Doctor (MD) replied 8 months ago
That is good. I would not worry about not getting adriamycin
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Customer reply replied 8 months ago
please, would it be possible to go through more specifically the questions I wrote above.
Customer reply replied 8 months ago
I have two concerns - the margin status for the phyllodes, and the margin status for the IDC. When you are saying the margin status is not a worry because of the radiation, which are you referring to?
Oncologist: Dr. David, Doctor (MD) replied 8 months ago
The benefits of more chemotherapy now is unknown. Most likely it will not help much. Most of your systemic recurrence risk reduction domes from the tamoxifen therapy and the herceptin and taxol
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Customer reply replied 8 months ago
There is no precedent for someone getting taxol only for a tumor above 3cm. The APT study only had 36 participants that were 2-3cm.
Oncologist: Dr. David, Doctor (MD) replied 8 months ago
The margin status for either is not super worrisome since you had radiation therapy. Radiation for 6 weeks to the breast can kill any microscopic disease left behind
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Customer reply replied 8 months ago
I hope it does for me, because it didn't for the 5 people I know of that passed from a malignant phyllodes last month and got radiation.
Oncologist: Dr. David, Doctor (MD) replied 8 months ago
Your invasive cancer was only 2.1 cm. We don’t count the benign phyllodies tumor
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Customer reply replied 8 months ago
Unfortunately, I'm in a strange position because yes, the benefits for more chemo is unknown at this stage. Why should it be different if I would have gotten it in the first place had I been correctly diagnosed as stage 2b, as compared to getting it now?
Customer reply replied 8 months ago
No, there was only 2.1cm that fit on one slide. Gross pathology took only 12 random samples throughout the tumor. Based on the spacing of the samples, if it came from one big tumor, it could be up to 6cm. MSK is currently reviewing what is left of the specimen.
Customer reply replied 8 months ago
What do yo mean we don't count the phyllodes tumor? Both benign and borderline phyllodes have been known to metastasize, and then it's always fatal because phyllodes can't be cured by chemo or radiation. There is up to a 45% risk of recurrence for borderline with no margins.
Customer reply replied 8 months ago
You said I don't need additional surgery for negative margins. And that is the very problem, 95% of my tumor was never processed and discarded without ever checking to see if there was additional IDC or DCIS, and therefore cannot confirm margins, if it was all taken out, or if it derived from the epithelial in the phyllodes or outside of it. When I had the excision, the surgeon believed it was a fibroadenoma only. So, she only skimmed the tumor and got less than 1mm margins. Gross pathology also thought it was a fibroadenoma, so they took only 15 total samples, spaced probably 2-3cm apart.
Customer reply replied 8 months ago
If I had a string and cut 2.1cm off and gave it to you, can you guess by what you have how long the string is? No one has all of the pieces of string.
Customer reply replied 8 months ago
Radiation to the breast is a local treatment. I am not worried so much about recurrence in the breast, but for the microscopic cells floating around elsewhere that chemo is suppose to address. I believe there are roughly 32 ever published cases where someone had a phyllodes with IDC or DCIS inside of it. Does anyone know if IDC and DCIS develops in a phyllodes, can it mets through the bloodstream like a phyllodes?
Oncologist: Dr. David, Doctor (MD) replied 8 months ago

you can try to find a doctor to give you adriamycin. it will cause hair loss and some bad fatigue and nausea.

but you may not really need it.

if you are worried about breast cancer still left in your breast, you can have a breast MRI scan now , or just have a mastectomy to remove the rest of your breast.

that will tell for sure if there is any cancer left or not.

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Customer reply replied 8 months ago
Sorry, Dr David, I don't mean to be difficult. There is no standard of care for the situation I am in. I am in the middle of pursuing an additional opinion to confirm the 2nd opinion, and then a surgical and oncology consult; so in a few weeks, I'll know what their tumor board has suggested. Ahead of that I was just wondering what the likelihood is of getting additional chemo. "But you may not really need it," and how do you think I find out if I really don't need it?
Customer reply replied 8 months ago
34;that will tell for sure if there is any cancer left or not" - yes, that is one way to tell, but again only in the breast. Mastectomy is not a cure all of either phyllodes or IDC. Women have had recurrence and mets after mastectomy for both phyllodes and IDC.
Customer reply replied 8 months ago
Hi Dr David. I really appreciate your time. I apologize for having a more complex and specialized case that probably exceeds this platform for value adding. I guess I will have to wait a few weeks to get the official pathology report and formal consultations. I thank you so much for spending time with me, and again, I am sorry if my frustration and impatience by my current situation has had any negative bearing on our interaction.
Oncologist: Dr. David, Doctor (MD) replied 8 months ago
The way we decrease the chance of your breast cancer from coming back is with chemotherapy and with anti estrogen therapy like tamoxifen or aroma tase inhibitor therapy after menopause. We don’t cure 100% of patients, but we cure many patients and we help put odds of cure in the favor of patients. You have already received chemo and herceptin and radiation. You need to be taking tamoxifen if you are not past your menopause at this point. You are in your way to getting cured. Most Med Inca wouldn’t give. You more chemo now, just because you are worried about systemic recurrence with no evidence of disease
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