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Always a chemo plan?

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    Posted: Dec 27 2020 at 8:46am
I was diagnosed 12/1 and am waiting genetic results (hope to have those tomorrow). I have seen a surgeon but no one has mentioned chemo as part of this plan unless a lymph nodes comes back positive after surgery. The tumor is 5mm and does not (according to MRI) appear to be in the lymph nodes. 

From my reading it seems chemo is a traditional practice as this cancer doesn't respond to hormone therapy so this is done as a systematic approach.

Thought, knowledge, and experience? I have set up a telehealth call with a medical oncologist (this wasn't presented as part of my team, only surgery and radiation) with the hospital I've been diagnosed at (Dartmouth) and a second opinion at Dana Farber in Boston. I should have all this information by January 8.

Terri
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cabeseler Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2021 at 9:12pm
Wondering how things went for you?  I am new to the forum, dx Feb 2021.  Moved very quickly from dx to surgeon.  Discussed options but my focus was on getting it out of my body!  60 yrs old, no family history, neg. bone scan, CT showed no other cancer.  Lumpectomy 3/12 - clear margins, neg lymph node. MO 4/1, RO 4/4.  I declined MO #1, 2nd opinion asked why no chemo before surgery and talked about 1 yr. chemo+immunotherapy - I declined.  21 radiation - 16 full breast, 5 focused on area of the tumor.  Records are now being sent to Mayo because my insurance company has a partnership with them - I would like to be part of a database/study of TNBC listing treatment options....
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rickles Quote  Post ReplyReply Direct Link To This Post Posted: Dec 10 2021 at 2:13pm
I was diagnosed with stage IIA, no nodes , no metastasis in July 2021. Based on NCCN guidelines, my physician recommended surgery and chemo followed by radiation. I had a lumpectomy in August. I just finished 4 rounds of AC. I will start Taxol on 12/21, 12 doses once a week. I have done well so far except for feeling pretty bad with nausea for 4-5 days post chemo. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Roxanne4 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2022 at 11:07am
I was diagnosed 10/12/22, getting 3 opinions,  NY cancer and blood specialists,  nyu langone in NYC and Mt Sinai in NYC. Not spread anywhere,  not in lymph and So far 2 say chemofirst,  then lumpectomy the radiation.  I just don't get why not take out first? 
My concerns about chemo I'm 55 and otherwise healthy and gym 3x wkly. HOW SICK AM I GOING TO BE AND LOOK LIKE???? I don't want to frighten my kids.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2022 at 7:18pm
HI Roxanne Sorry to hear your dealing with TNBC. Sounds like your on top of this getting  three opinions and glad no evidence of node involvement. I know our first reaction is let's just get it out of our body. The reason for chemo first is so they can see how your cancer responded to treatment. This way they know for sure that your chemo was successful. 

I was 50 when I was first diagnosed and very active like you. It's tough to say how sick you will feel being everyone reacts different to chemo. The good thing is your doctor will prescribe meds to deal with things like nausea etc. You most likely will have good and not so great days. Typically we feel the worst a couple days after treatment and feel better on our weeks off. I was able to work through treatment and I had a physical job.
I always wanted to keep it as "normal" as possible in my house for my kids also. My kids were 17 and 21 when I was first diagnosed. I had a talk with them before I started chemo to make them aware of the physical changes that would be coming. They seemed to be ok with it and understood I may be under the weather at times. I was never one to lay on the couch much so they knew if I did I wasn't feeling great. I feel it's definitely a positive when you are otherwise healthy and active like yourself.

Take it one day at a time and before you know it your looking back at cancer in the rearview mirror. Wishing you all the best! We're all here for your support!
Andrea
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amrit Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2022 at 8:23pm
Hi Roxanne,
I was diagnosed in Oct 2020 and my treatment started with chemo followed by surgery.  Just as Andrea explained, my surgeon told me that chemo is done first to check how patients respond to chemo. He examined me mid-chemo by ultrasound and determined how much the tumor shrunk.
I received 4X dose-dense AC followed by 12 cycles of T. I tried to stay active as much as possible but I also gave myself plenty of time to rest. The AC treatment was difficult for me, I used to be lethargic for almost a week after the infusion. But the T treatment was a breeze in comparison. 
However, everybody is different and different people may feel different type and intensity of side effects. For example, my friends gifted me many things to handle nausea but I felt only mild nausea and never threw up.
This is a journey we have to go through once faced with this disease but there is a light in the end of tunnel... I wish you the best!!!
Vibha
11/3/20 IDC 2cm, brca1+, AC-T neoadjuvant treatment, bi-MX 5/26/21, Hysterect 7/19/21, Olaparib (Lynpraza) 8/5/21,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Roxanne4 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2022 at 12:21am
hi , thank you.  
I don't want to tell my kids,  I don't want them to know.  
At least until it's absolutely necessary than at least I can say don't worry it'll all be fine, actually almost over. 
My mom lived with us and my kids especially my oldest 22 now was very very close with her.  She was diagnosed with a rare bladder tumor out of the blue and was perfectly fine then all of a sudden , sick and died 7mths late r, this December 27 is exactly 5 yrs ago.  He has some depression issues to begin with.  I almost lost him,  he was crushed along with my twins, now 18. He graduating college in December and my twins just entered their 1st semester of freshman year.  I tell them this,  they hear the C word they'll think I'm dead by December too. I can't do that too them. I want to try and hopefully be okay through this so they don't notice.  Until of course my hair falls out, then hopefully they believe what I make up. I'm just trying to see how ppl get,  the side effects etc. I'm praying I can do this and hold my head up. Like you at work, congrats to you!!!. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Roxanne4 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2022 at 12:25am
hi, thank you.  If you don't mind me asking what is a/c and t??
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amrit Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2022 at 10:02am
Hi Roxanne,
I am sorry to hear all that you are going through. Its never easy to share this news with the family. When I lost my hair (in shower), I came out laughing and that eased some concern in my family. In winter, I wore a hat, so it was easier than in summer when I could not. But by summer, I was used to it.
A/C-T is a chemo regimen. AC is a combination of Adriamycin and Cyclophosphamide and T is paclitaxol (Taxol). 
Sending all positive vibes and best wishes..
Vibha
11/3/20 IDC 2cm, brca1+, AC-T neoadjuvant treatment, bi-MX 5/26/21, Hysterect 7/19/21, Olaparib (Lynpraza) 8/5/21,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debbie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2022 at 10:35am
Hi Roxanne,
I know it doesn't seem logical, but it makes sense to have chemo first. I had to have surgery first due to my circumstances at the time. Now I have no idea how my cancer responded to chemo. This still haunts me, but I always try to stay present, put my energy into positive things and focus on living. "AC/T" stands for Adriamycin/Cytoxan and Taxol. Its a combination of commonly used chemo drugs. Your oncologist will come up with the best plan for you.
I have a 26 yr old daughter who was 22 when I was diagnosed. I also tried to act as normal as possible and let her live her life. When I started dose dense A/C I was tired and had some indigestion, but never had nausea/vomiting or any other GI side effects. I lived on thick veggies soups with barley, fish, potatoes. I found cutting veggies therapeutic.  My last dose of taxol had to be reduced by 20% because I had significant neuropathy in my hands. I still have lingering neuropathy from taxol, but its completely manageable. I lost some weight after I was diagnosed due to nerves, but was able to maintain my weight throughout chemo. I made the decision to shave my head and bought a beautiful wig. Actually had many strangers comment on how pretty my hair was! My husband, sister and sister in law were with me throughout the treatments, but I went to shave my head alone. I really felt empowered doing this. You are stronger than you think! I always felt I looked pretty good. The hardest part was losing my eyelashes because I did feel like I looked different. But this only happened toward the end of treatment and eyelashes were the first to come back quickly. I recommend having a good support system. I just kept reassuring my daughter I would be ok. She came to one chemo session and saw how I easily I handled it. I hope everything goes as smooth as possible for you! I'm glad you are getting different opinions. Best wishes!

Andrea, Thank you for your kind words. I wish you well too!

Debbie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Roxanne4 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2022 at 1:41pm
I hear adrimyican is the most worst medication there is or there.  I thought I heard they banned it and then just call it something else? 
So from what I understand they'll kill my breast cancer and this stuff can make all sorts of other sh*t happen to you,  heart issues,low white blood cells.  My girlfriend sister was 48 cancer chief for two years then gets leukemia cancer and dies. That's exactly what I heard adrimyican can do. Ughh this is such a nightmare.  It almost seems like they're going to get rid of that and then I'm going to end up having something else.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2022 at 4:54pm
Roxanne, Most all of us with TNBC start with A/CT ,as that is known to be the best line of therapy to combat TNBC. Yes there are quite a few side effects that may happen just like many other chemo drugs. My first line treatment was A/CT which Adriamycin is nicknamed " the red devil" as it is red in color. I have never heard it was banned. Typically your oncologist orders a MUGA scan to check your heart to confirm it is healthy to endure. Also if any concerns after they will follow it with imaging. I personally have not had any cardiac issues and hopefully you won't either. The risk outweighs the measure for sure.
I know all this information is scary but you will make it through and your team will follow your health closely to ensure the best outcome.
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote rickles Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2022 at 5:46pm
Hi Roxanne,  I can understand your feelings of fear and anxiety related to  your diagnosis of  breast cancer. However, there comes a point that you need to find a provider you are comfortable with and trust that he/she has your best interest in heart. It seems like you have done the research, gathered second opinions and sought advice from your fellow peers. It is time to place your trust in your health care team along with a lot of faith and hope. For me, I laid all my fears and anxieties in God’s hands. I took on the journey, one day at a time, and focused on following my doctors advice and taking care of myself. It is also valuable to have support from family and friends that can lift you up on those low days. 

   

I would like to offer you some advice from someone who has been there and gone through it.

 

  1. Embrace the experience. Yes you will lose your hair. I dealt with alopecia most of my life and now my hair is fuller, thicker and curlier than it has ever been. I  embraced the time during treatment to have fun  trying on different wigs, scarves, bandanas, hats, false eyelashes… My husband would ask “well who are you going to be today?” Just have fun with it. 


2.  I gained weight with the steroids. I felt fat, bloated, tired, spacey especially during my AC  treatments. However, the symptoms are temporary. They too will pass in time when treatment is completed. I knew I would feel bad the first week of chemo but I also knew that I would be feeling better by the second and third weeks. So I would make plans to do things during my “good periods”. I remained positive by keeping my eye on the finish line. This is the time to pamper yourself. Wear whatever is most comfortable for you. I found a special pillow, blanket or cozy booties to wear during the chemo infusions. There are plenty of products out there to help you with nausea, dry skin, or any other symptoms you may develop. 


3. You mentioned the drop in WBC. It is extremely important that you avoid contact with people that are sick, wear your mask when outside your home and extra good hygiene. My WBC count dropped a little but never so low that I could not receive chemo. Hopefully the same will be for you.


4. I know you do not want to tell your children right away and I understand your feelings. I personally found a sense of huge relief once my family and friends were informed of my diagnosis. The outpouring of love, prayers, support, encouragement were overwhelming. It helped brighten my darkest hours. I recommend you sitting down with your young adult kids and let them know the situation sooner rather than later. That would remove the stress of you having to keep it from them. This can also be an opportunity to share an experience that can make your relationship even closer and stronger. It is a reminder for everyone about what is important in life, not to stress over the small stuff and to be grateful for the positive things in your life.  


I hope this gives you a little encouragement. I wish you all the best.


Diane

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Post Options Post Options   Thanks (0) Thanks(0)   Quote adangelica Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2022 at 2:37pm
Hi Roxanne,
Sorry to here about your diagnosis.
I was diagnosed in March2022 with TNBC.
 The news was a shock for me and my family. 
I am 53, not drinking, not smoking, no drugs, healthy as a horse - but cancer.
Right after my diagnosis one surgeon proposed mastectomy followed by chemo.
I went for a second opinion at another hospital and they said chemo first, hoping to reduce the tumor and after that ,mastectomy. I needed another opinion and I went for it- the third doc said chemo first and then surgery and this is what I did. The last doctor explained that 10 years ago the treatment was surgery and then chemo, but now statistics show a better outcome if you do chemo first and then surgery.
I had 8  rounds of chemo AC/T( May - Aug) , the tumor got small. I am now 7 weeks after my surgery, recovering well. This is how I decided to deal wit this.
I hope this help ...good vibes to you.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: 22 hours 2 minutes ago at 8:03pm
Roxanne, 

I know you know your children best but do give them some credit. My daughters were ages 9 and 13 when I was diagnosed. Telling them was hardest because I had just buried my mother within the month of my diagnosis who had passed from ovarian cancer. I was also a single parent. Fortunately my 13 yo had done a report on ovarian cancer so when I told my daughters of my dx she automatically piped up that at least this was a better type of cancer to have. Granted TN hadn't been named at that time and as you'll see at my signature tx was very different then. AC was doable. I worked through tx taking an extra day or 1/2 day off as tx progressed. I also found doing acupuncture helped maintain my energy level while being treated. I would go directly after my infusion. 

I am sure you have started tx by now. I hope it is going well for you. 

Kirby
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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