Newly diagnosed, just learned I'm also triple negative
I've been trying to focus on the positive--I got my first mammogram, the cancer was identified, the tumor is fairly small.
But now I'm looking at the fact that it's grade 3 and now also learning that it's triple negative. My doctor was so confident I would get through this with possibly no radiation and now here I am looking at chemo and radiation... as well as a more aggressive, more recurrent cancer. I'm devastated and at the end of my ability to feel positive right now.
Comments
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Step back and take a deep breath. Of course, you are devastated. No one ever thinks this will happen to them. I had similar to you and did chemo but no radiation. I am 5 1/2 years out from my original diagnosis. Make a list of all your questions so that you can get them answered as you go to your appointments, etc. There are many, many ladies like us. This site is filled with so much information and will be very helpful to you. Hang in there and hugs to you!!!
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When I was diagnosed stage 2 triple negative the surgeon and PA emphasized that grade 3, more aggressive tumors like ours generally respond better to chemo because chemo targets fast dividing cells. Also if you get to five years without a recurrence, you are pretty much in the clear, whereas hormone-positive can recur 10 years later or longer. Also, prognosis is based on stage, not just type. Sounds like you are early stage since tumor is fairly small? Unless you have multiple positive nodes. Best of luck to you. It's hard, but you will get through it. I'm coming up on three years
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I am newly diagnosed too. My tumor is large and I have at least 1 node positive.....I am honestly trying not to look at prognosis as I know it will devestate me. All I know is that I have chemo in a week and I pray it kicks the crap out of these lumps!....I am having a more feisty day today.....tomorrow I will be back to tears again......but we have to fight this and not let it beat us!
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Caroline,
Just popped in here to tell you I was diagnosed with stage 1 , grade 3 TN bc back in 1990, they gave me a poor prognosis waaaay back then when I was in my 30's , my MO however was very supportive and yes grade 3 responds well to chemo, since I'm here writing this now. Hang in there
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Hello CarolinaAmy
I have just read your post and wanted to say do not be afraid. Most of the TNBC tumours are grade 3, a few are grade 2. I had a large tumour, grade 3, and I am here to tell the tale 10 years later. You will get through this.
It might be a good idea to join Calling all TNS. This is a big thread with lots of lovely informed women and they will take you through this journey. You are also welcome to post on the thread I started nearly five years ago Calling all Triple Negative patients in the UK. Anyone from anywhere can post here.
Thinking of you.
Sylvia xxxx
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Thank you all. I needed that reassurance! Sylvia, I did find the Calling all TNS thread and joined it. Thank you.
Placid, I don't know yet whether there's lymph involvement. I am praying hard that there isn't, as I could use some good news, but there's something in me that's worried because my armpit feels 'full' and uncomfortable. I won't know anything until at least my first appointment with my surgeon on the tenth. I'm hoping there will be some indication then without having to wait for the surgery itself.
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Hi everyone,
I just received my diagnosis of triple negative as well. It is devastating. I also learned the the margins of the lumpectomy were positive and my sentinel node is positive. I have children and want to be there for them when they grow up. All of you women make me feel like this could be a possibility. When I first heard the diagnosis I felt lost and had lost hope. You women are incredibly supportive! Thank you from the bottom of my heart.
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The club no one wanted to join gets bigger. It is not a picnic but it is all very "doable". One day at a time. Research, knowledge is power. Be "positively proactive". And know you can get through this sbeddows, CarolinaAmy and Murphy43. There is so much support and knowledge on these boards. Welcome. I am 5 years out and doing great.
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Amy, you and I have a few things in common it turns out as I live in Charlotte also. I received my DX on May 29,2015. I had had yearly mammograms and this year was called back for follow up pictures on my right breast . After the diagnostic X-rays ,the radiologist said it looked like just microcalcifications and I could wait and come back in 6 months to recheck or I could go ahead and have a needle biopsy to get a better look. I am a worrier and this is the first time it has stood me in good stead. The needle biopsy showed ILC. I subsequently found out I was triple negative and was told even before my lumpectomy that I would probably need chemo and then radiation or a mastectomy. They recommended radiation as my tumor was small. It was a big shock as it is for every woman. No one wants to be a member of this club but you accept it and move on. Once you get the pathology report back and can get a treatment plan in place with your oncologist and then start actually attacking the cancer you will start to feel better and hopefully more positive about things. I just started chemo. I will have 4 treatments of TC over the course of twelve weeks which isn't too bad . So no matter what just focus on the positive and there are always some positives out there.
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I just purchased a book on Amazon for my Kindle called
Surviving Triple Negative Breast Cancer.
It has given me hope after just a few chapters.
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Hey CinderellaNC! Thank you for your encouragement. I wonder if we're going to bump into each other. Will you be at Levine? And if so, did you get a second opinion?
mama26, I saw her blog on one of the other sites. I'm ordering the book right now, although I was discouraged because I saw that she was just diagnosed with a recurrence this month (or it might be a new primary diagnosis). My heart sank.
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Hi Carolina Amy, good to hear back from you. Yes, I am being treated at Levine and I am very happy with my oncologist there. They took my case before the tumor board last Wedn. and were in total consensus on the course of chemo that I started on July 31st. I am doing TC every three weeks for twelve weeks so 3 months is not bad They decided I did not need the longer regimen of 4 or 5 months of dense dose AC followed by 8 or 12 weeks of taxol. So far no side effects but only four days out so I don't expect that to hold for twelve weeks but that is okay as long as it does the job. I will see a radiologist I have heard good things about this week at Levine to discuss the proposed 6 weeks of follow up radiation after the chemo ends. Honestly , though, I am going to push for a bilateral mastectomy which they feel like is overkill in my case. I have ILC which is hard to pick up on a mammogram and I also have dense breast tissue adding to the challenge there. I am fortunate my ILC was spotted so early when it was so small. It could have been missed if I hadn't chosen to have a needle biopsy instead of waiting to come back for a follow up check on some micro calcifications in the diagnostic X-rays in 6 months. I ms a worrier , though, and decided to just have the needle biopsy right away. Glad I did. Oh, I did have my lumpectomy done at UNC Hospitals in Chapel HILL because I could get in there sooner for the procedure than at Levine . My surgeon at UNC was excellent as have been all of the doctors I have seen and nurses, staff etc. If I have the bilateral mastectomy, though, I will have it done by a surgeon in Charlotte just because follow up care will be easier and more convenient in Charlotte than commuting to Chapel Hill in case of complications. Also I have found and excellent triple negative support group that meets in Charlotte if you would be interested in that info I could pass it on but I don't want to overwhelm you right now. You will be fine with the medical care you can receive in Charlotte and once you find out where you stand and have a game plan it will make a huge difference. i know it can be overwhelming and scary and an anxious time but believe me it does get better with time and knowledge and some distance from the shock of diagnosis. Good luck to you and if I can help you out with anymore info or any other questions you might have please feel free to let me know. Take care.
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I know exactly how you're feeling. I'm 43 years old and I was recently diagnosed with stage 3, grade 3 triple negative breast cancer the end of June. Two lymph nodes involved by the right breast, under my arm. There are alot of survivors (including yourself) and you'll get through this, one day at a time, one minute at a time. You're not alone and this isn't a death sentence. Soon you will get your treatment plan and that will be good and help you to feel better about thinks. You are in my thoughts and prayers and remember that you're not alone.
Peace and comfort to you!
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I was just diagnosed with triple negative breast cancer on 7/15/2015. I had a 1.1 cm removed on 8/04/2015 and two lymph nodes which were negative and I had clear margins. I talk to my doctor this Wednesday and get a treatment plan outlined. I am not looking forward to chemo and radiation, but know that is what I need to get better. I have good days and bad days and am very anxious about what's in store.
Stay strong!
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@CinderellaNC: I go in for my complete pathology report today, but your diagnosis sounds similar to mine. I don't know my stage or grade yet, but will after today. I had a lumpectomy as well and received a report that I had clear margins and 0/2 lymph nodes were negative. I also did the genetic testing and that came back negative. I am glad to hear that you have not had any side effects. Do you know by chance if radiation is always required after the chemo? I'm assuming it is and will find out more today.
@mama26 & CarolinaAmy: I was just reading her blog last night. It is very encouraging. She sounds like she caught this second round very early and will not need chemotherapy.
@JJ62 & Joy-Anna: Thanks for your positive support and encouragement!
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lovelifeBR, it looks like you got the staging--1A? That's great news!!
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Hi, CarolinaAmy. I was diagnosed with triple negative BC in January, and finished chemotherapy in June. My IDC was 4.5 cm, all nodes negative (I had ALND, 11/11 nodes were clear) and I didn't need radiation after chemo. SpecialK has written about when radiation is recommended on one of the boards here, and she is very knowledgeable. If you have a lumpectomy, radiation is on the menu, but I had a mastectomy, and my RO consultation was very definitive that radiation was not recommended. Chemo is no fun, but you can do this! One benefit (? Am I really saying this?) of TNBC is that it responds well to chemo.
Best wishes to you.
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H CarolinaAmy: Yes that was good news that it was Stage1A. Now I'm on to see the oncologist next week. Really nervous about all of that and my anxiety is really high. I'm ready to get going as I know it's definitely something I have to do. Hope your appointment went well on the 10th.
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hi love life BR. I think radiation is required after chemo for most triple negatives. The one exception is if you choose to have a mastectomy then you can probably avoid radiation. I am planning on forgoing the radiation and having a bilateral mastectomy without radiation. I want to avoid the additional risks associated with radiation and I don't want to worry about every little bump, lump or issue with my breasts plus I think ILC will quite often pop up in the other breast if you have already had it in one breast and I have the further complication of dense breast tissue. I realize a bilateral mastectomy does not guarantee that you can't have a recurrence of breast cancer but I will take my chances with themastectomy.
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@CinderellaN: I will have my port put in next week and start TC on Friday the 28th. How is your chemotherapy going as I noticed we have the same regimen? Hope well. I will have four doses and if all goes well I will have up to six doses. Then 30 days of radiation. I'm just looking forward to getting on with the treatment so I can get on with life:-)
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Love l
Lovelife BR I just had my second treatment of TC this afternoon and am hoping I tolerate it as well as I did the first. I started losing my hair two weeks after the first treatment and have had my head shaved. It doesn't bother me that much. I have some cute hats to wear and a halo and a wig but I think the hats alone will be better. I had no nausea after the first treatment , just kind of felt like I had the flu on day 5,6,7 rather tired achy and just felt punk. My taste for food and drinks changed some also . Things just tasted kind of bitter. My taste issue got better , though, about two weeks in . Now it will go sour on me again but that is okay. I took decadron twice a day for the first two days after the treatment as my oncologist said that would help with delayed nausea. My appetite was not great for a few days and my stomach was a little queasy but not too bad. My white cell counts went down as expected but came back to normal after three weeks so again I won't need the neulasta shot . I am happy about that. So all in all I can't complain. The treatments and their side effects I am told are cumulative so I expect to be hit harder after this one so I will just wait and see and use my anti nausea meds more if I need them. The radiologist I saw said I would just probably have to have four weeks of radiation. I have an appt. with a surgeon on Sept. 17th and will probably choose bilateral mastectomy over doing radiation. Just more peace of mind for me. Anyway I hope you do well with the TC regimen. I think we are lucky to avoid having Adriamycin in our cocktail. They call that the Red devil and I think it causes harsher side effects from what I have heard. So it sounds as if you tolerate the TC well they will give you six treatments instead of four. i haven't been told that just that I would have four treatments so I don't know why the difference there but hope the chemo goes well for you. You will glad when you start the treatments and can get on with things! You can do this and I bet you will do fine just keep a positive attitude and that helps.
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I wanted to chime in. Regarding the "death sentence" I went to a TNBC support group at my hospital (it meets once a month) and most of the ladies there were 7+ years out from diagnosis. Most of them were older women too. Anytime I search TNBC on the internet it's all doom and gloom. I figured I had 5 years at best at the time. After going to the support group I felt so much better. No more google searches! lol
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I was diagnosed TNBC 25 yrs ago , stage 1 grade 3 with a very aggressive tumor in my 30'sand even though given a poor prognosis back then, I'm still here. I'm so glad there was no Google back then
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Hi ladies,
I haven't been on in ages so I wanted to stop in to say hello. It was six years ago on Aug 20th that I had my very first baseline mammogram. It was what discovered my cancer. I think about the wonderful support I got here in this site and wish you all the best.
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Hello Sugar77
I just wanted to say that I remember all your posts in the past on the thread Calling all TNs created by Titan in May 2005 and I just wanted to say congratulations on reaching six years since diagnosis. Your posts, picture and name have remained in my mind because I also remembered you were from Ontario, Canada. I lived in Canada for seventeen years.
I reached ten years since diagnosis in June this year, so it just goes to show that there is life after TNBC. I am sure Calling all TNs would love to hear your good news.
Keep up the good work.
Sylvia xxxx
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Cinderella: Hope you are tolerating your 2nd treatment as well as you did your first one. I have a wig ready to go so I'm probably going to be be shaving my head in the next few weeks as well. I'll wait to see when it starts falling out. I've had some friends lend me some hats, scarves, etc., so I feel like I'm good to go. Just need to google how to tie the scarves. I figure I might wear those around home more than the wig. Do you exercise a lot? I plan to continue my exercising as much as I can thru this. Glad to hear that you had no nausea after your first treatment. So you had a lumpectomy and are now doing a bilateral mastectomy over radiation? I need to read up more on that and soon. I meet with my surgeon again in a couple of weeks. I think we are lucky to avoid having Adriamycin in our regimen as well. I had my port put in yesterday so I'm ready to get started. Keeping a positive attitude and talking to different ladies that have been thru it has helped me a lot. Thanks for posting! Good Luck with your treatments as well!
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Hey everyone,
Just reading this thread and I noticed a lot of you are thinking mastectomy vs lumpectomy and radiation. I just wanted to mention something, although it might not be relevant to any of you... if your axillary lymph nodes are clear, that is fantastic, but if your tumor was in one of the inner quadrants there are more lymph nodes to consider. The intramammary nodes that are located under your sternum. They are not routinely tested. I had a lumpectomy in Feb 2015, nodes tested were clear, then did AC chemo, then 12 weeks of Paclitaxel. I finished chemo July 29 and am having a double mastectomy Sept 21. I am ALSO doing radiation because my tumor was in the upper inner quadrant. Just food for thought.
If anyone has any questions about the treatments I have done so far I would be more than happy to answer. It's a long road, but it's doable!
Kelly
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Hi love life BR, Thanks for asking.,I am doing okay after my second TC treatment a week ago. I am driving three hours today to babysit my 4 month old grandson this evening so that gives you some idea there. I do exercise every day of the week if I am in town. I spend a little more than an hour on the elliptical trainer and then walk the track at the Y for a half hour or so. This is all indoors and climate controlled cause we have had a very hot summer here in NC this year. I have had my exercise routine now for a good many years and find that it helps with my energy level and mental health also so it was a big concern of mine to be able to keep this up even undergoing chemo. I knew it would help me keep my spirits up. I am grateful so far that I have been able to continue doing it during chemo. So two treatments down and two to go! I meet with a surgeon on Sept. 17th about having a bilateral mastectomy. I am pretty well decided on going this route instead of doing radiation. For me , I just think I will get better peace of mind going this route. You have time to think about the next step of your treatment and you might be more comfortable with radiation over more surgery. Listen to your doctors and your own instincts and I am sure you will make the best decision for yourself in the long run. Meanwhile hope your treatments go well. Let me know how you are doing . I am cheering you on!
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CinerellaNC, I didn't realize you'd responded again on this thread. (I've now got it set up for notifications.) You have your surgical consultation tomorrow and I'd love to hear how it goes. I have my second chemo tomorrow (AC +T) and will hopefully go as well as the last time, too. We definitely have a similar mindset about a lot of these issues and I'd love to meet for coffee sometime. I'd also be interested to hear which radiologist you spoke with at Levine. I still haven't met with mine yet.
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Hi Carolina Amy. I have been following your posts on the Sept. Chemo thread along with many others on the calling all Triple Negatives thread. I will let you know about my surgical consult tomorrow with Dr. Sarantou. I have been having my appts. At the Levine Center in Pineville, chemo , radiation consult, medical oncologist there also. I saw Dr.Bobo for my radiation consult and he was very nice as all of the doctors and staff have been that I have come across in this cancer journey. I also very much like my MO Dr. Brinda Koya. I would have no hesitation about seeing Dr. Bobo for radiation treatment if I were inclined to go that route. Radiation over mastectomy has been recommended for me but for my own peace of mind I am just strongly leaning towards a bilateral mastectomy . I have dense breast tissue and my cancer was ILC instead of IDC. As the surgeon told me I am special , almost all ILC's are ER+and Pr+ and ILC is way less common than IDC and , of course, triple negative is less common than the hormone positive cancer. Yeah, it is great to be special, not so much really. Anyway, ILC is harder to detect on mammograms . I am fortunate mine was picked up so early from microcalcifications seen by the radiologist in my diagnostic X-ray and then a needle biopsy. I just think having a bilateral mastectomy is the best way for me to move on in my treatment and not have to worry about ILC lurking and hiding in my breast tissue down the road. I finished my third TC on Friday and will have my last October 2nd. The SE's have been minimal so far , no neulasta shot needed yet so I just keep moving along and hope for the best. All of us do that I know. I hope some of this has been helpful. I will be happy to communicate with you on my surgical consult or anything . I check the discussion boards regularly and will post a reply If anyone has a question or concern that I Think I could possibly help with. Hope you continue to do well with your treatment.
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