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New Diagnosis, researching options

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Juil0909 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Juil0909 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2022 at 3:34am
Hi everyone,

I am 47 yo and was dx with TNBC in January 2022 and have the BRCA2 gene mutation. The tumor was measured to be 1.7cm and no cancer found in lymph nodes.Stage 1
I was recommended to have neoadjuvant treatment before surgery but decided to go ahead with double mastectomy with nipple sparing reconstruction without doing the chemo first.
I had surgery on March 16. After surgery they said the tumor was 2.2 cm and negative in nodes. So since the tumor was 2.2 they staged me as 2A.
Now the doctors are saying I should definitely do chemo for 5 months as soon as I am healed from the surgery.
I am looking for any advice and words of wisdom as I am still contemplating my decision with doing chemotherapy.
I did see a radiology oncologist last week and he said he would not recommend radiation for me at this time, which is a huge relief.

Thank you for reading and I appreciate any insights.
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joyjiang View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote joyjiang Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2022 at 10:34am
My understanding is chemo is the most critical for TNBC. The reason why doctors recommend chemo first is that allows them to find out whether and what regimen works. 

BMX of course prevented cancer coming back in breasts. I would suggest you check whether chemo would prevent distant metastasis. 

With BRCA 2, you need to find out the risk for ovarian cancer, if necessary take out ovaries preemptively. Ovarian cancer is often found late (Stage 3 /4) with bad prognosis. 

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rickles View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rickles Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2022 at 6:26pm
Hi Juil0909, I was diagnosed with TNBC 8/2021. I had a lumpectomy, chemo and am currently finishing up my radiation treatments. It is my understanding that even with a double mastectomy and clear lymph nodes there is still the possibility that microscopic breast cancer cells could be left behind to travel through the rest of your body, liver, lungs, bone and lymph nodes. Once these cells grow outside the breast, the cancer is then metastatic with a poor prognosis. Medical oncologist rely heavily on chemotherapy to treat TNBC and eradicate any microscopic breast cancer cells that survived surgery.
  I hope this informations is helpful. I wish you all the best .  Diane
 
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cookie54 View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2022 at 9:16pm
Hi Juil0909, I had a BMX in 2016 and had clear lymph nodes Stage 1. I had chemo(A/C) post surgery and radiation was not needed . Four years later had a recurrence in my lymph nodes and chest wall, I am now Stage 3c. So I would not underestimate TNBC it can be aggressive! Microscopic cells can escape and hang out in our system without us knowing for quite sometime. It is so very important that you take every step to give yourself the best chance of eradicating it forever! Best wishes with your decision.
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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marlenad View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote marlenad Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2022 at 7:44pm
Hi Cookie,

What is your current treatment? We almost have similar stories but I had a lumpectomy. So in 2018(stage 3 TNBC) I had chemo, then a lumpectomy in 2019, then radiation, then took Xeloda. I had a reoccurence as of TNBC 3/2022 opposite side in lymph nodes & chest wall. 
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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2022 at 7:44pm
So I finished Xeloda 7/21 I am not on any chemo currently. However I think it's coming! My last three CT's of the chest show 3 enlarging lung nodules that radiologist is calling slow growing pulmonary metastasis. Unfortunately and fortunately they are to small to get a biopsy of yet. MO feels a wedge resection of the lung is too aggressive and wants to wait 3months to see if they are big enough to biopsy.

I'm sorry you are dealing with this  beast again! What treatment are you on? Is it still considered a loco-regional recurrence?
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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Cindy in Tempe View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cindy in Tempe Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2022 at 2:00pm
Hello, I am new here.  And very confused about what to do.  Reading your stories and histories is helping, but we're all different.  Here's where I am.

I have invasive ductal carcinoma, Grade 3.  Don't have final lab results (ER-, PR-, HER2 pending), but I got the sense that my Oncologist expects HER2-.  The CT showed no metastasis, no lymph node involvement, but there were already 2 lumps (one 2.1 cm, one 1.3 cm).

I am 67, had full mantle radiation treatment as part of Hodgkins in 1990.  Also had MOPP chemo which is hard on the heart.  He's noted that the A in chemo in the first phase of this treatment might be too much for my heart.

Beyond that, I'm not sure my body is strong enough to endure the treatment plan he outlined.  I have Barrett's Esophagus, no spleen, reduced immune system function, have had ongoing skin cancers (from radiation 30+ years ago), and have pretty serious issues with my intestines (although muddling through without a major crisis, yet).

My Oncologist is ready to start chemo ASAP.  Arranging to install a port, etc.

I could really use a discussion with a counselor, ideally with a good assessment of my physical condition before I commit to undergoing chemo.  But I am not sure how to get that.  And I don't know if it is even the right thing for me to pursue.

I'd love to muddle through for another 2-3 years on some kind of fairly easy chemo (as a friend did with his stage 4 lung cancer), but I'm not sure I'm ready to be put thru the ringer.  Not sure my body would tolerate it, not sure some other cancer wouldn't flare up (Barrett's Esophagus is precancerous for a type of cancer that is pretty much not survivable).  And I don't want to put my family thru it either - especially my husband.

My husband has serious lung issues, relies on me for care, and may not survive more than a couple of years, either.  I would love to be here to help him thru his journey.  (I know, sometimes we simply don't get to choose.)

I tried to get an appointment at the Mayo Clinic which is in town.  But they haven't responded.  I really just need good expert counseling right now.

Does anyone have any ideas on what to do?
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2022 at 2:17pm
Hi Cindy,

Welcome to our forum that is populated by some very wonderful, supportive people.

I am a patient advocate and have helped many women on this site. I am not a medical professional and will not give you medical advice but I do have a lot of experience helping women with TNBC and I MAY be able to help you with a consult at Mayo in AZ.

If you would like to talk I could do a zoom with you later today (maybe around 4 or 5 pm).

Please send me a PM and give me your email address or send me an email at

info@sagepatientadvocates.org

I will be happy to set up a Zoom for later today. I am on vacation tomorrow through Wednesday with my family so later today would be best.

There are no charges for my services, personally and there will be no charges from 
SAGE Patient Advocates, either.

You can learn a bit about my work on

www.sagepatientadvocates.org

You have a complicated medical history and I agree a place like Mayo Clinic may be a good resource.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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