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Newly diagnosed

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Category: TNBC Forums
Forum Name: TNBC Talk
Forum Description: A place to chat
Printed Date: Jan 19 2020 at 1:21pm
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Topic: Newly diagnosed
Posted By: Mistiferlyn
Subject: Newly diagnosed
Date Posted: Sep 10 2019 at 1:35am
Hello, I am 49 years old and was recently diagnosed with TNBC. I found 2 lumps in my upper outer left breast into my armpit. I had it biopsied and it came back invasive ductal carcinoma, negative for hormone based. I have been researching endlessly but am so confused. I have a friend who has been cancer free 11 years since her diagnosis, and another friend who passed earlier this year at the age of 45. The one who is a survivor had a lumpectomy first, then when her genetic test came back positive for BCRA1 she has a double mastectomy and hysterectomy. She then had chemo and radiation. The one who passed had chemo first, then a lumpectomy. Sadly it came back and spread to her lungs and brain. She also was genetic positive. I haven't gotten my genetic test back yet. I have 2 spots which one is 3 cm and the other 2, they are right next to each other. Not sure about lymph nodes. My path report said no evidence of lymphovascular invasion. So my question is, my Dr. wants me to have chemo before surgery but since my friend who didn't do that first had a bad outcome I am worried that I should have surgery first. I know we are all different but I am just trying to get the best outcome. 
I am so glad to have found this site to she how others have made out. It's nice to talk to people who understand. Thank you.

Posted By: 123Donna
Date Posted: Sep 10 2019 at 8:35am
Thank you for sharing your story.  You will find this forum a great place for information and support.  Studies have shown neoadjuvant chemo (chemo first, then surgery) yields better results for Triple Negative Breast Cancer.  There are many advantages for doing chemo first.  You'll be able to see if the chemo is working on the tumors and reducing them or achieving a pCR.  You are at the worst part of this journey, receiving this life changing diagnosis and trying to navigate the medical and cancer world and make important decisions in a short period of time.  Once you begin treatment, you'll feel more in control that you are actively doing something to fight this disease.  Stay in touch and keep us posted on how you are doing.

Donna" rel="nofollow -

Sarah S. Mougalian, MD: Neoadjuvant chemotherapy for triple-negative breast cancer is being used more and more commonly. Traditionally, the use of neoadjuvant therapy was limited to breast cancers that were not surgically resectable. However, more and more research has been done in this setting, and more and more providers are using neoadjuvant chemotherapy to try to get patients to breast conservation. There are a number of additional benefits of the use of neoadjuvant chemotherapy, particularly in triple-negative breast cancer.

First, it gives us a glimpse into the activity of the agents being used. For example, if a patient has a palpable breast mass that shrinks in size, presumably that affect is also taking place on any micrometastatic disease. Secondly, we know that prognosis is largely dependent on the pathologic response to treatment. Patients who have a complete pathologic response after neoadjuvant chemotherapy have excellent long-term outcomes. Finally, we know that patients who do have residual disease after neoadjuvant chemotherapy may benefit from the addition of adjuvant therapy—for example, the use of capecitabine as per the CREATE-X clinical trial.

The use of neoadjuvant chemotherapy also affords us a couple of additional benefits. It’s an optimal setting for studying novel agents, novel combinations of agents, with the use of pathologic response as an outcome. And also, it allows us to select for the most high-risk patients for the study of adjuvant therapies in patients who have had neoadjuvant chemotherapy and have residual disease at the time of surgery.

Outside of clinical trials, the standard of care for the treatment of triple-negative breast cancer includes an anthracycline and a taxane. The role of platinum agents is not well-defined at this point. However, there are 2 large randomized clinical trials—CALGB 40603 and GeparSixto—both of which studied the addition of carboplatin to standard chemotherapy in the neoadjuvant setting. In both studies, the combination of chemotherapy with a platinum resulted in higher pathologic complete response rates.

The use of platinum in the adjuvant setting is actively under investigation with the NRG-BR003 study, which is examining the addition of carboplatin to standard third-generation chemotherapy; and in EA1131, which is examining carboplatin versus capecitabine in the adjuvant setting for women who have residual disease after neoadjuvant chemotherapy.

In my practice, I reserve the use of carboplatin, or a platinum agent to the neoadjuvant setting in those patients who are at highest risk of recurrence.

Neoadjuvant treatments in triple-negative breast cancer patients: where we are now and where we are going" rel="nofollow -

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: mainsailset
Date Posted: Sep 10 2019 at 10:29pm
Welcome! I'm glad Donna told you that this is the worst part, I really believe that when we all first are dx'd and suddenly surrounded by strangers speaking a language of medical eese where much of it is hard to comprehend and there's all these decisions to make about procedures and figuring out the financial side of things, it's pretty horrific.

But that's why I've found this forum the best place to come. You can ask any question, talk about your fears and indecision, really anything and I've found there's always someone who will step up and give advice.

I was in a clinical trial. I had two kinds of chemo and then two more kinds of chemo before surgery, followed by radiation. It was a good plan for me, as Donna points out it's a useful tool for the doctor to have the tumor left in so he can look and feel how it is responding to the chemo. At first mine just stubbornly stayed the same size and then about 6 weeks in it softened and began to noticeably get smaller. I had wanted to have it out first and it bugged me at first but when it started to get smaller it was such a great feeling to see it losing its battle.

Please feel free to ask lots of questions, people here care and we'll give you all the support we can.

dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear

Posted By: strongtogether
Date Posted: Sep 11 2019 at 12:40am
Hello and welcome to this forum. Sorry that you have to be here, but I a, glad that you have found it.
Thank you for sharing your story. There really is a lot to it, and I believe everyone has to make their decision based on what is right for them. In our case we decided that getting it out was the most important thing. Like yours, there were two seperate growths that were in the same part of the breast, and there seemed little point in trying to save what was going to be a heavily damaged breast. If anything, the surgeon had to talk us down from initially wanting a double mastectomy.
 The diagnosis was very similar to yours, but on mastectomy the sentinel node biopsy returned one of the nodes as being positive, even though the sentinel nodes had looked clear in the scans and on initial visual inspection by the surgeon. There was a follow up axial removal. 
 The days in between the sentinel node biopsy and the axilary removal and full body scan were awful. Thankfully there were no further tumours detected. I know that there are certain advantages of neoadjuvant chemotherapy (ie chemo first, then surgery) particularly in terms of monitoring the tumour. It would be so empowering to watch it shrink - but you also hear of nightmare scenarios where tumours grow and invade lymph nodes even under chemotherapy. I am sure more knowledgeable people than me will have points to make - and obviously your MO is more knowledgeable than I am! 
 One thing that may make sense is to look at any clinical trials that you may want to do - they tend to be in the neoadjuvant setting, which makes sense: after all they want to watch the tumour shrink.
 Let us know how you choose to go, and please dont lose hope. Its a big deal that you are going through, dont let yourself be isolated, stay in touch.

Posted By: Mistiferlyn
Date Posted: Sep 12 2019 at 5:27am
Thank you so much for sharing all of your stories, it truly does help to hear it from people who understand and have been there. I have decided to do Chemo first. He explained to me that because the tumors don't have defined margins they don't like to do surgery first in fear that they may not get it all the first time and would prefer to do surgery only once. He also told me they have had good outcomes with this treatment and his nurse told me they actually see TNBC more often than people realize.  I  will get Doxirubicin and Cytoxan combo every 2 weeks for 8 cycles, as long as my counts stay good. Then I get Taxol once weekly for 12 weeks. I will also get Nupogen shots to help my body produce white and red blood cells during chemo. My biggest fear right now is getting the PET scan and results. I am praying it hasn't spread elsewhere. My bloodwork was good and the Oncologist seemed very optimistic so hoping that's a good sign. I get my port placed the 27th and if everything goes well start chemo the 24th. Awaiting my genetic results. Thank you all for your words of encouragement! I am definitely not looking forward to losing my hair or the side effects I have read about but if it keeps me alive it's a small price to pay. 


Posted By: 123Donna
Date Posted: Sep 12 2019 at 8:12am

Sounds like you have a plan and are ready to fight this!  Warrior mode can be extremely powerful and give you a feeling of control.  Scanxiety is real and a terrible part of this diagnosis.  You have anxiety leading up to the scan and then waiting for the results.  Try not to worry too much, take an anti-anxiety med like Ativan if you think it will help to get through it.  I always dreaded the wait until you can find out the results.  I remember after I was treated for my recurrence and was experiencing terrible hip pain I had a scan.  The onc nurse asked me do you want to schedule an appointment the following week with the onc to get your results or have me call you the next day with the results.  I told her the waiting part was agonizing and just call me.  I'd rather know up front than have to wait over the weekend with all dark thoughts floating around in my mind. 

Losing your hair affects people differently and can be very emotional.  It usually happens about 2 weeks after your first chemo.  You'll know when it's going to happen as your scalp will start feeling funny.  There are huge selections of wigs, scarves, hats and other headwear to make you feel and look good through treatment and afterwards until your hair starts to grow back.  I didn't realize how much our hair keeps us warm.  I found sleeping with a knit cap on at night helped keep me warm over the winter months.


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: mainsailset
Date Posted: Sep 12 2019 at 7:23pm
Misti, when I first came to this group I REALLY didn't like the scan side of things. A wonderful old time member loaned me her trick.

She said that when you go into the room where the equipment is, before you lay down, walk up to the machine and put your hand on its side. You can have a conversation with the machine or simply say 'you work for me, so you better do a good job!'

It was just one more thing that made me feel like I had some control in what was otherwise a visit where I felt I had to surrender. It worked, I never had to take an Ativan!

Something that also was helpful was when people told me to 'go to the balcony' otherwise known as 'go to 30,000 feet'. The idea is to step away from the chaos of emotions and look down at each meeting, each treatment, each dx as detached as you can be because it helps you to focus on something other than emotions that can get in the way.

I sounds like you have a very good doctor who is including you in the decision making.

dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear

Posted By: Mistiferlyn
Date Posted: Sep 14 2019 at 4:03pm
Thank you for all of your replies, they have greatly helped. My question now is what can I eat. I am afraid to eat anything as everything I read online is contradicting. I have been doing smoothies with frozen organic berries, organic kale, flax seeds and almond milk, however my oncologist told me no berries during chemo. I can understand fresh ones but I but the organic frozen. Also I have read dairy is good and bad. I am so confused. I just am trying to be proactive to get what I need during chemo. Any advice is greatly appreciated. Thanks in advance

Posted By: Kellyless
Date Posted: Sep 14 2019 at 7:58pm
Welcome Misti! I've been thru TNBC twice (which is very rare, it won't happen to you). The first time I did lumpectomy first, but I went into surgery not knowing it was cancer, much less TNBC due to a botched biopsy. The second time I had two spots side by side like you, each almost 2 cm. I did chemo first, and after surgery I got the unexpected great news there was no cancer left - a pathological complete response (pCR). I did scans twice during chemo to make sure it was shrinking, which is very reassuring. Unfortunately at the end they cannot tell if it's all gone until surgery - tumors don't evaporate into nothing, they leave a "tumor bed". Dead tumor I guess?  Since you're doing chemo first you will know if it's working, which is a nice thing to keep you motivated thru chemo. 
Most cancer facilities have a nutritionist on staff to work with the patients. Mine came around almost every chemo to chat. Eating can be a challenge during chemo, she was a great help. Most people get anemic during chemo, iron pills don't help, only iron rich foods do. She helped me come up with creative ways to pack more iron in my diet. I was very determined to avoid a transfusion, at times I ate pan fried steaks and spinach for breakfast, sweet potatoes for lunch and protein and iron rich smoothies for snacks. That's when I felt good, there were bad days I was lucky to get down ice cream or Mac and cheese. You do what it takes to get thru, on the other side of chemo you can work with the nutritionist or dietician and work on a long term healthy plan. Now's not the time to stress about food, your plate is full of plenty of stressors already! Be kind to yourself now, you've got plenty of time to figure it all out. 

IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!

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