Podcast: Hope After a Triple-Negative Diagnosis
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thank you all................I am trying
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Hi,
I'm new to this website. I'm hoping to get some advice from women who have been in my shoes. I have triple negative stage 1 breast cancer in my right breast. I'm undergoing chemotherapy to shrink the tumor in order for the surgeon to get a clean margin when removing it. I have 2 weeks left of chemo then I'll have a month off before surgery. My breasts are small 34A. I do not have the cancer gene. My first thought was to take both my breasts so that I will not have to worry about getting cancer in my healthy breast. Now, that I've done some research I realize that a mastectomy will cause me to lose feeling in my breast. That worries me because I want to have the feeling of touch in my breast, but I am also worried about developing breast cancer again. I am 50 years old.
Does anyone have any insight they would be willing to share?. Any advice? How does it feel to have a single mastectomy? How does it feel to have a double mastectomy? Does anyone have any regrets?
Thank you to all that read this and respond.
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mysunnyday: I am sorry that you are dealing with this mess too...........not sure where you read that a mastectomy will cause you to not have feeling in your other breast but I can feel mine just fine......I hope that helps. I do not regret my mastectomy at all. I did however have a recurrence in the same side in the lymph nodes, and my pectoral major and minor muscle so I am not sure there is a really right answer. Just follow your heart, but you will still feel your other breast.
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mysunnyday, so sorry to meet you here! But you will find BCO is a wonderful group of ladies all helping each other out. I'm not sure what you mean when you say mastectomy will cause you to lose feeling in your breast? A mastectomy is the removal of the breast. Or are you referring to sensation if you opt for reconstruction? I chose to have bilateral mastectomy because both sides were affected...DCIS in the left, IDC in the right. I could have had a lumpectomy and radiation on the left but mastectomy was the only option on the right so I had them both removed, and opted for no reconstruction. I have lost much of the sensation in my chest wall, and I do miss that. But I find comfort in my flat chest, because it tells me that the cancer is GONE. Everyone is different in what they decide. There are other threads about surgery, reconstruction, or staying flat. They would be good sources of information for you as you make your decision. If you don't have the gene then you are very likely safe with the single mastectomy, that will preserve one breast with sensation for you. My thoughts and prayers are with you as you go through this journey. For me, the chemo was the worst, and you are almost through with it. You go girl
Martha
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I am so sorry anyone has to go through all of this......but since your a cancer sister....I will share my experience....I was diagnosed in Nov 2013 had neoadjuvent (before surgery chemo)....on a drug trial for TNBC stage 1. took that orally for a month. I chose double mastectomy....read everything I could nd chose the free tram flap reconstruction.....so got a tummy tuck and more perky boobs now.
The loss of sensation has not been a problem for me or hubby....in fact he finds the new ones exciting LOL
had my surgery and ACT chemo.....right now I am cancer free they say.....lets hope it stays away for good.
funny thing is now they want me to take an oral chemo to remove what little estrogen maybe left...Onc. said that 4% of the cells did have estrogen receptors.....but I am still considered Triple Negative....any other TNs out there that had a take something to remove estrogen out of the body for 5 years?
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mysunny: I'm sorry you are going through this, I remember well the agony of making surgical and chemo decisions! You may want to do a search on mastectomy versus lumpectomy, as there are many threads on this. You could also start a new thread, and you may get more responses. What does your surgeon say about your surgical options? Stage 1 likely presents you with many. It's good you are doing your research, but one thing you need to keep in mind is that there are no guarantees no matter what surgical choice you make, unfortunately. It's true that local recurrence following Mx is rare, but it does occur. And it's true that the greatest concern with TN is distant recurrence which, IF it happens, is likely to happen sooner than with ER+ cancers... which is why chemo is a very good thing for us. For what it's worth, I decided on a Lx because it was a very viable option for me, the least invasive/disruptive, and I did not like the thought at all of losing my breast or the sensation with it if I didn't have to. But that is me. Please do continue your homework, ask lots of questions of your doctors, and make a decision that's right for you.
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Luah, great post, and great advice. Very well said!
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Checota, I only had 2% ER receptors and I'm on Tamoxifen!! Tried Aromasin then something else and now trying Tamoxifen! So far the Tamoxifen seems to be ok! But at the first sight of issues, I'm done with it, because two doctors said there is NO proof that it will help me, but there is NO proof it will not! So I didn't want to leave any stone unturned or have regrets so as long as I have good quality of life while taking it, I'll stay on it!0 -
Question out there to all the survivors, have you changed anything after treatment? Diet, supplements, exercise? I have been trying to exercise 30 min a day, but it's tough since I am still in recovery after surgery. I hear about mushrooms, aspirin, turmeric, cannibanoids, etc. Any suggestions?
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My mother was diagnosed with Triple Negative Breast Cancer in 2008, she had lumpectomy, six chemos and radiation. Since then she was doing well until this January when she was diagnosed with lung mets. She had 8 rounds of taxol and carboplatin chemotherapy. The chemos got over in June end and the scan showed improvement. Suddenly on 1st November she had a seizure which made me took her to the neuro and he asked for immediate MRI, which showed brain mets. The doctors had started decmax (steroid) and whole brain radiation(WBRT), with 37.5 cGY in 15 fractions. Currently she has undergone 13 fractions with manageable side effects.
I have also researched about miR-708 which is effective in treating people with TNBC. Does anyone has any idea on miR-708 ?
I shall be grateful if you can connect and guide me more about it. My mother does not have much time since it has metastasized to the brain.
Please provide help so that I can talk to my onco more convincingly.Thanks
Saile
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Hi everyone , I am searching for hope I just got my pathology report back from neoajevent chemo and was so disappointed I had 7 nodes with residusle. The original toumor was almost 4cm but was gone from chemo. Can anyone give me hope?
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Kgallant, Welcome to BCO!
There is ALWAYS hope. That is awesome that chemo totally shrunk your 4cm tumor. Chemo also shrunk my tn tumor, although not completely. Didn't do too well on my her2+++ tumor. My point is.....I'm still here going strong. Don't EVER lose hope!!
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I was diagnosed with triple negative breast cancer two and a half years ago after a lumpectomy.
I have had no treatment since then.
My yearly appointment with the oncologist was on Tuesday and, once again, he said that I'm all clear. This is great but unanticipated good news. I believed that TNBC was going to finish me especially after the first two years had gone by.
I can't counsel anyone else because you may have circumstances that differ greatly from mine.
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Great news Sabel!!
Here's to two and a half more years and many more!!0 -
I'm so grateful to have found this site.
I was diagnosed with Triple Negative IDC in July 2014
I had to undergo neo-adjuvent chemo because my tumor was over 6 cm and they wanted to shrink it down prior to surgery.
After 8 cycles of chemo there is no sign of the lump by feel, but we will know for sure after the pathology reports come in post surgery
I work as a radiation therapist, so I knew all about the poorer prognosis for TN, but I refuse to let that get me down. This is the first place that I've found where there are other people that can understand how overwhelming this diagnosis can be.
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RTChris, we are happy that you found our site as well. Thanks for being here, and sharing.
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Hi RTChris, Had your's spread to your lymph nodes? I had 4 cycles of AC/CY and now am on 12 cycles of Taxol with Carbo every 3 weeks. I only have 3 treatments left which I am really excited. I cannot feel any of my lumps in my breast or under my arm but will have an MRI the last day of treatment to see if my 5cm lesion that I cannot feel has shrunk. My surgery is March 24th. Good luck and hope you get a NED!
Roxanne
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RTChris, I hear you about being in the business and knowing about triple-neg. I am a RN and worked for many years in oncology and hospice; in fact I worked in a hospital that did some of the clinical trials for the AC/T protocol many years ago. When I found out that it would be me, it was so difficult because I knew too much! But I made it through (with complications!!!!) and now am over 1 1/2 years from diagnosis and everything looks clear so far. (((HUGS))) to you and many prayers to!Martha
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RTChris, Welcome to BCO! You'll find wonderful support on these threads. I am 1.5 years out from my diagnosis. So far, so good. Best wishes to you!!
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Just found out that my IBC is triple negative and I am trying to come here first for hope and not googling things but IBC is scary then add the triple negative to it my head is spinning. My appt is tomorrow with the oncologist to get my plan.
@ im a fighter!
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frugalgirl, So sorry to hear that you hare triple negative. You have come to the right place as there is a lot of good information and it gives you hope when you need it! When I was diagnosed I did not even know there were so many types of breast cancer so once I started reading about TNBC I was scared. I know I felt a LOT better once I had met with the oncologist and had a plan. Plus I got a pink lady mentor from the cancer clinic and she was matched up to me so she can relate to everything I am going thru. Plus she is a triple negative survivor so she gives me strength too. Good luck with your oncologist tomorrow and let us know how it goes!
Roxanne
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frugalgirl, this isn't the most active of topic threads, but we have all been where you are now. There are other threads related to various treatments which I found to be quite helpful as I was going through the various stages of diagnosis, surgery and chemo. There is also a website devoted strictly to TNBC, http://www.tnbcfoundation.org/. You might want to take a look at that one too. Good luck with the onco appointment tomorrow. Be sure to take notes and/or ask the doctor to write things down for you. When I was getting all my initial info I was totally overwhelmed and frequently referred back to my notes and the reports that the doctor gave me. {{{HUGS}}} to you!
Martha
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frugalgirl, welcome to BCO. Once you have your plan in place, it does get a bit easier. BCO ladies/men offer great support throughout treatment. Gentle hugs to you!
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Just finished my two year diagnosis Feb. 20. It is frightening going through the next three years with two kids. I try to go to the gym 5 times a week.
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Hope your appointment went well with the oncologist. They are wonderful caring doctors. I have survived 2 years now.Actually the whole thing can be overwhelming. Hold your head up and ask for help. My advice is to inform your navigator nurse of any issues. I witnessed some ladies waiting three days to call when bad things started to happen. Most things can usually be addressed with some type of meds.
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Chip Lady, that's great that you have survived 2 years! I was told that the highest incidence of recurrent for triple-negative breast cancer is within the first two years. So be optimistic! But also be vigilant and never let your guard down!
Martha
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hi everyone I rarely post but thought I would today. I am over 3.5 years out from diagnosis and doing really great. I remember how I felt those few months and it was horrible. I did not think I would make it 2 years let alone 3.5.
I try and exercise at least 5 days a week, drink green tea every day (matcha about 5 days a week). I take turmeric (1/2 tsp) dissolved in 1/2 tbsp of olive oil and a pinch or fresh ground black pepper just about every day. I for the most part stick to a low fat diet but not so good with the sugar (bad sweet tooth).
Take heart, treatment is not fun but it will get better, way better! Best of luck to everyone!
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Shorfi---Trust me there are many, many TNBC survivors past the 5 yr point. The reason you don't read about them is because they are busy living their lives. They don't think to even come back to post.
I was always on these forums reading from the time I was first diagnosed (back in 2009) until I passed my 3rd yr anniversary. I made a promise that when I passed the 5th yr mark that I would come back and post. However, I've put that off as a CT scan I had done last year showed some nodules in both lungs. I wanted to wait until I got the "all clear" before posting. I am going in Friday (tomorrow) for my 6-month CT scan on my lungs. If they haven't grown and no new ones pop up, then I have one more CT scan in Sept before a benign diagnosis can be made.
I was like you when I was going thru the treatments and afterwards. Always reading the bad stories about TNBC. Then my radiologist-oncologist told me something that made me stop obsessing about the negative aspects of triple neg. He told me that I was missing out on life and that I could be killed in an accident leaving his office or die from any number of things besides the cancer! It took awhile for it to sink in, but he was absolutely correct. That was my turning point when I was determined to not let the triple neg stigma hold be back from enjoying every second I could of life. This is not something that happened overnight. You literally have to 'train' your mind to focus on how lucky you are to be alive that day.
There are no guarantees in life for anyone---whether they've ever had cancer or not. Many young people never get to life a long life due to a car accidents. Then there are people out there who have had cancer who beat the impossible odds.
I wish you the best. And please know that there are many out there who have survived TNBC for over 20 yrs!!! Yes, that's no typo.....I have read comments from people who say they have survived it that long!
echo-on-the-lake
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What a beautiful posting Echo! Thank you for that and wishing you a completely free scan.0 -
How are you doing now meggi? I was just diagnosed with TNBC, and go to my first consult tomorrow.
I'm a bit nervous truthfully.
Hope all is good for you,
jlmonroe
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