I am frozen with fear
Two weeks ago I thought I felt a lump, within a week I learned it was cancer. Fri. I found out I was triple neg. Surgery is on Fri. Since the onset, all news has been bad. I feel so scared.
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Well, it's not easy - of course you are in a state of shock and feeling scared. Who would not be. I was an absolute mess when I was diagnosed.
But, the best thing is to try and take things one step at the time. First thing is the surgery. Once you get all the results, you will know more about what's going on and you will know what your treatment plan is going to be. Unfortunately you are likely looking at chemo. But, it's very effective for triple negative cancer! I will let the triple-negative ladies chime in. In the mean time, hang in there, there is lots of hope!
Hugs, Helena.
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I'm triple negative too, and I was definitley scared when I found out. The worst part was feeling powerless. Because of the TN and being grade 3 (like me), you will most likely have chemo, but as Helena said, TN responds really well to chemo.
While we do have a higher risk of recurrance for the first 3-5 years, our risk drops the further away we get from dx. AND we don't have to deal with the side effects of hormone therapy. So there's that.
Along with this board, you will find some great information and support at the Triple Negative Breast Cancer Foundation's site (tnbcfoundation.org).
But you won't know for sure what you're dealing with until after the surgery, so try to make a space where you can get well and find support for the first step. Learn what you can, but don't just look for the worst case scenario and avoid reading other womens' memoirs (Especially Nordie's at Noon). I scared the hell out of myself before I really even knew what I was facing.
Feel free to PM (personal message) me if you want to talk. What kind of surgery are you having?
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Your reaction is normal. I remember crying all the way home from work and had my funeral planned. I was afraid, mad at God and looking for reasons---all normal reactions. I'm a triple negative and my daughter is a triple negative--dx 2 weeks after mine. Agree, your probably looking at surgery, chemo, radiation, but you can elect chemo before surgery or vise versa--your choice. Ask questions of your MD---write things down when you think about it and carry your list with you to MD--no matter the question, ask it. TN is supposed to respond well to chemo, but unfortunately, there isn't much to do after you finish with all treatments--just checkups. We finished chemo the end of 2008 and radiation in the spring of 2009. We have passed the 1 year anniv for diagnosis, treatment and looking forward to 2nd anniv. Good luck with your treatments, but remember one thing---you do have a future!!!!!!!!! Many prayers and hug.
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Your reaction is normal. I remember crying all the way home from work and had my funeral planned. I was afraid, mad at God and looking for reasons---all normal reactions. I'm a triple negative and my daughter is a triple negative--dx 2 weeks after mine. Agree, your probably looking at surgery, chemo, radiation, but you can elect chemo before surgery or vise versa--your choice. Ask questions of your MD---write things down when you think about it and carry your list with you to MD--no matter the question, ask it. TN is supposed to respond well to chemo, but unfortunately, there isn't much to do after you finish with all treatments--just checkups. We finished chemo the end of 2008 and radiation in the spring of 2009. We have passed the 1 year anniv for diagnosis, treatment and looking forward to 2nd anniv. Good luck with your treatments, but remember one thing---you do have a future!!!!!!!!! Many prayers and hug.
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Hi Jan...Another TN here. What you are feeling is perfectly normal. Things are just so overwhelming right now, but will get better once your treatment plan is in place. There is a website called Living Beyond Breast Cancer, lbbc.org, go to that website pan down to Triple-Negative News. They have a brochure about TN breast cancer basics, treatment and aftercare. It is well worth a read and is also a free download. It might help calm some of your fears. I wish you the best and please keep us posted. Hang in there.
Anna
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Just to let you know, there are many, many survivors. I am a 23 year survivor of triple negative breast cancer. I was 39 the first time and almost 6 1/2 years ago I had another triple negative diagnosis to the other breast. This time just months after me, my 34 year old daughter was also diagnosed and she is almost 6 years out, wow, Starwatcher nice to meet you. It was sure tough watching my baby go threw this but must tell you we are both doing fabulous. She is an avid exercise, nut I call her, but she ski's, runs, and teaches at a local gym. What an example she is to so many women. Here I am now 63, will be 64 in June. You will get threw this. My daughter now tells me, that if she had to do it all over again, she would not change a thing. It has made her a better person and has deepened her faith in God, which she believes now with God she can go threw anything. I FEEL EXACTLY THE SAME. Oh, and I was also stage 2 the second time.
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I'm so glad you came here. I am triple negative as well, and now half way through chemo. I had a double mastectomy at the end of October (elective on the other side.)
I find myself doing things I said I would NEVER do (chemo, going through the hair loss.) Many things I have feared are at my doorstep, and I am getting through stuff I never thought I would. It's not easy, but YOU CAN do this. Let people help you in the ways they can, and allow yourself all of your feelings.
This is your story, and you have all rights to it. Take each day one at a time, and ask for help. The ladies here will give you plenty of support and encouragement. We are all here together as one, with our stories....will write more later
traci
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It is at times like this that we find out we are so much stronger than we thought we were. My initial reaction to the shocking news that I had TN breast cancer was also intense fear that threatened to cripple me. That same fear gave me the energy to do some of the things I had to do if I wanted to survive. To start, learning all I could about what I was dealing with was one place I put a lot of that energy, converting it to a positive and productive use. You will get through this, as has been said before. You, too, are stronger than you think. And we are here for you. You don't have to do this alone. Stay strong and keep us posted.
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Nonijones333- Please share your secret with me. I am a three-time breast cancer survivor. My first on the right breast in 2005 was hormone driven and Her 2 Neu neg, and the Arimidex is doing a great job with minimal SE's.No recurrences here so far.
In October of 2006, I discovered a lump in my left breast, that turned out to be an almost 2cm TN, grade III tumor, node neg, Stage I. After A/C x 4, was told I had a pretty good prognosis, but exactly three years later (2009) a second TN discovered in routine checkup in the same breast. This one 3cm node neg, probably same grade, and Stage II.
I am not angry but I want to know what it is I should be optimistic about? I am asking you because you seem to have the most promising story of all TN's I know.
Do you live a stress free life? Are you surrounded by love? I am truly amazed by your story. Would like to know what has kept your TN at bay.
I am currently recovering from a bi-lateral mastectomy(Jan.25, 2010), the right side elective, and did not have immediate recon. Not sure what this TN has in store for me. That's the real reason why I didn't.
I didn't get to that 5 year mark. Does that mean it will keep coming back in shorter intervals?
Pudding
Scooter-12 and Sido - Please feel free to chime in.
OK!!! I want to hear from everybody. I'm not going to discriminate.
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Please go to the forum, JANUARY 2008 SURGERIES. A nice member, CookieOkie, posted a terrific article on Triple Negative breast cancer. It is extremely informative and destroys all of the myths about Triple Negative breast cancer. I found it really encouraging, although I am not TN. Please read it, I think it will boost your spirits. Take care. Maryiz
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First when they told me I laughed at the bs. And asked if I could have FF breast implants - he didn't seem amused, I couldn't stop laughing. We all deal differently with the emotional side of TN breast cancer diagnoses.
After seeing the bs on the way home on that day I cried and cried and phoned every single person on my mobile to tell them that I was going to die. (From laughing one minute to a wreck the next). I even called up the husbands ex wife (she's good with my kids and we got on at the time) and said will you please marry Lee (my dh) when I die. I had choosen my song for the funeral and and and ...
Luckily I didn't need to draft in the ex wife, or find a funeral parlour or any of them things that 1st go through your mind, it's natural to think the worse and work backwards for some of us.
You will learn to cope with your dx like each of us have found our way of coping with it. You may have the occasional tantrum "Why me" or positive thoughts the next and negative thereafter, this is all to be expected. Most/all of us have gone through these same emotions and this website is amazing for support, understanding, information so you're at the right place for that.
I'm just coming up to my 3 yrs past chemo.
And no the doc said my skin would only stretch to size b cups (from dd) but hey I'm used to them now.
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For pudding girl, in response to your question, I think this time you did it. If you had a bi-lateral to begin with you probably would not have had to deal with the other two diagnosis. Not to say that that is always the case, but it seems in your case it was. However seems to me that the cancer was confined to your breasts. My daughter had breast cancer in both her breasts, er pos. and TN in the other. She did a bi-lateral from the get-go. I ended up having a second breast cancer 18 years after the first, so i guess you can say i kept my breasts for all that time just having the lumpectomy. The oncologist told me if i had had the bi-lateral from the get go i most likely would have never had a second diagnosis.
To answer your second question about how I keep a sound mind and have managed to be a 23 year survivor. First it is my deep faith in a wonderful God that gives me such hope in knowing what ever is my fate that He is totally in charge of me. Life is not easy and you can say we are at war with our bodies. Everyone on earth has some cross to bear. I guess we are not going to get out of here alive. My life has been a hard one but i accept it and threw all the trials I have had each trial has made me a better person and has made me to appreciate life "just one day at a time". I do not follow any special diet i just eat well and everything in moderation. Have a glass of wine everyday and will continue to do so no matter what "they say". Everyday I try and take time to pray and find a tremendous iner peace in doing so, sure beats Ativan. Fill yourself with positive thoughts and look at the fact that spring is just around the corner. Pudding you are on the right track, you are going to be fine. -
Thank you nonijones333.
I wouldn't have considered a MX for the first BC because I am the first in my family with this disease. And that one was early stage, small,and "curable". Still on Arimidex for it. It never even stopped me for a moment. I treated it like it never happened. Then the following year the TN came, I was never told the danger of it. If I had known, I would have at least had MX of this breast. Second and third opinions from other breast surgeons told me to. They told me I had cancergenic breasts. I laughed at the word, thinking they were just anxious to cut me. But I remained loyal to my primary BS who didn't think it was necessary to remove the breast.That makes me feel stupid now. I now have a new breast surgeon.
Puddin'
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Try to remember that fear follows disbelief for many of us. When you start to get angry and take charge of your treatment, your fear will dissipate. It will still come and go from time to time while the process is underway because nothing feels normal for a while, but focusing on recovery and future plans is helpful. I planned a vacation for my one-year anniversary so I'd have plenty of good things to look forward to. Now I'm working on something great for the two-year mark. You can do this.
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Dear Puddin'
Before the AI, were you on tamoxifen? Sometimes long term use of tamoxifen can be associated with recurrences that are triple negative; no studies have shown a correlation with short term use, but it would be difficult to prove causality. It is a built in risk, but arguably worth it for so many.
Have you had your vitamin D levels checked? Sometimes that will help your general tendency to produce neoplasias and tumors.
You will be challenged by all this, but be strong. Ask questions, make sure you have good communication with your doctors and don't be afraid to make life style changes that will help you heal and cope.
Above all, surround yourself with love. Loving family; if not, loving pets and critters, if not, loving wildlife and even a simple bird house or bird feeder. You would be surprised at the beauty that tiny bird family can bring into your life.
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MsBliss- I have never been on Tamoxifen but I have a very serious Vitamin D deficiency.. Showed up on routine blood work about nine months ago. I have been prescribed Vit D 50,000 IU twice a week, along with Citrical and once monthly Actonel.
Thank You MsBliss
Puddin'
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Maineartist
On your signature, you are stage IV. Did you have a recurrence? If you just had 1 node positive, that is stage II.
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Her signature also indicates mets, which would be stage IV.
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Janrr6,
I was diagnosed pretty much exactly with your Dx on Jan 7th 2010. I'm doing neoadjuvant chemo (i.e. before surgery) so my path is a little different to yours. But I'm sure we'll have a lot to share. You can tell me about surgery and I can tell you about chemo :-) Our type of cancer responds really well to chemo. And chemo has not been bad for me so far. Please private message me if you want to talk. I would love to help in any way I can.
Helen
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hhfheidi- My med onc. just told me 2 weeks ago that I have a higher chance of local recurrance than gettting mets.
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Goodness - I don't know what Nordie's at Noon is... I can only imagine some kind of depressing ending from the way it sounded - BUT I can tell you the only thing that is going on at this Nordy's at noon is chaos! And NO recurrance (knock wood) coming up on 5 years since date of diagnosis. It has certainly not always been easy, but we just kind of take what life has given us and try to move forward, right? I also had chemo up front and my tumor shrunk from being nearly 4 cm down to less than 6 mm - so it really responded well. Hang in there... And, yes, I agree - sometimes you have to back off the websites/books/articles that are less than... uplifting? Unsure if that is the word I am searching for...
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Nordy - WOOOOHHOOOOOO!!! Talk about uplifting!!! Congrats on 5 years! Thanks so much for posting - we need more success stories like yours!!
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Thank you thenewme!
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Yay Nordy! and those babies of yours are so darn cute! Absolutely beautiful!
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Thank you Titan - I kind of like them myself!
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I missed this thread along the way.... I too am TN, my onc has always been very positive about my status and pretty much believes the way I do. We'll deal with "it" when it happens, until then enjoy life. I'm right in the middle of radiation and have had my ups and downs, but when all is said and done I have to say I do see things differently in so many ways and strange as it may sound with a cancer dx, I'd like to think for the better.
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Hey Jenn! Welcome to the TN thread..the more the merrier (I guess)..I feel the same way...we will deal with it IF it happens..and it may..or it may not...what choice do we have but to deal with IT..we have dealt with it so far and will continue to do so...and we all be here supporting each other the whole way...How is rads going for you? OK? And chemo..tell us your story..we all want to know about it here...because we care and like to compare experiences...I am 26 weeks from chemo...23 from rads and feeling fine...having a little anxiety with seeing my onc for my 2 3 month check on Tuesday..but this too will pass..I have alot of questions for him..I'm calling it "Ask the Onc"....maybe he will get famous...I would like to see if I could get him on here to answer questions for us...I bet he would love that! Hee Hee!
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Janrr6, how are you doing? How was your surgery?
Before I read Nordies at Noon, I never even considered the possibility that my cancer could kill me. I first believed that the next six months to a year would suck (and it has), but that I would come out okay. I was so frightened and upset afterward that I vowed not to read another memoir (until I found CancerVixen, which was great). It has been almost six months and I only have two radiation boosts left before I'm done with treatment. I feel lousy right now, but I know I'll get stronger the further out I am, and I will come out okay.
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