Podcast: Hope After a Triple-Negative Diagnosis
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Dear Friends
I was diagnosed at age 59- to some of you that may seem old but it is not - I have three sons and two grandsons that I want to see bloom in this life. I have many who love me, especially my husband. You can do chemo - take the anti nausea meds around the clock and be sure to stay on top of constipation. The neulasta whopped me good the first time but then was better - get pain meds to take on top of the Claritin they advise you to take.
The hardest thing is the fatigue you will feel - I am done with chemo 4 months and radiation 2 months and still tired but it is better. I have to say losing my hair was not as hard as just waiting for it to grow back so I can stop wearing my wig. I didn't think I was that vain but it appears I am. I also work in the public and obviously looking like a cancer patient would complicate the interactions I have with people so I don't risk it. I know there are "better" breast cancers to have than triple negative but I am not going to take it laying down. I feel like I was blasted with chemo and I know it blasted any cells left behind. I burnt them up with radiation and expect to dance at my sons weddings and babysit the new little ones - and those days are pretty far off. So I intend to be here for those days.
As hard as it may be you can do anything for one day - just take one day at a time - I did it and you will too. God bless
DX 5/22/13, Invasive medullary carcinoma, Stage 2, 2.1x1.9x1.8 cm, Grade 3, 0 nodes, ER-/PR-,HER2- lumpectomy 6/10/14, chemo with Adriamycin/Cytoxan/Docetaxel/ 6 cycles, 30 radiation tx
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I am still here too. Almost five years after triple negative diagnosis. All tests remain clear. There is hope!
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bobsgal and Scoobydoo, thanks for your encouraging posts! Hearing from others, like you, who have been there is so inspiring.
• The Mods
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I feel that way, too. Had lumpectomy and just had first A/C last Thursday. Will be having 3 more dose dense and 4 Taxol dose dense. My tumor was .8 of a centimeter but triple negative. No spread to node. I am 55 and there is no cancer in my family. Are you scared?
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I had a Brain MRI, Pet Scan, Port Placement and a Muga Scan all in the same week before chemo. I had a bone scan the week before. This was all very comforting but hard. Thank God I had a full hysterectomy 3 years ago. You will come thru this fine
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Bobsgal...I am done with my chemo treatment as of 1/10/14 and waiting for my exchange surgery on April 9th.
I'm afraid of it coming back...so what do I do? I try to find on the internet all the success stories of women with TNBC and don't find that many. After reading, it seems me to a dark place and I get so depressed. I'm always promising myself that I will not read the horror stories, but I find that I still do it. I'm just angry because initially Pathology said I had DCIS, ER/PR positive and Her2 negative. Then after the mastectomy I also had IDC triple negative. I am so insecure, but my MO says my prognosis is excellent, those were her words. But I am still afraid. I am 59 years old and happily married for the past 5 years. I don't act like an old woman, but my body feels it. In fact, I feel mentally young. I am finally happy in my life and now I have to worry about whether I will be around for the next 5 years. Fortunately, I am taking Lexapro for depression because of this, but sometimes in my mind I am so afraid.
I don't find too many success stories and that makes me anxious. I'm sorry I am being a Debbie Downer, but I am so afraid.
Maybe I should just stay off the internet reading about TNBC and just stay here.
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Shorfi, your story sounds a lot like mine. I was initially told DCIS, then mastectomy and the path said ER+/PR+/HER2-, but there was a discrepancy with oncotype testing. So they sent another sample out for pathology, which showed triple negative. So I had to stop in my tracks and hit the chemo trail. Which I just finished on Friday, now it's a waiting game. Lots of questions and concerns, but I'm taking it one day at a time and staying aware.
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Thanks, it's always good to her the positive.
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Rhody...how are you feeling these days? TODAY...I feel ok. Back is a little achy, but we are finally going to get some decent weather this weekend before being hit again with another snow storm next week. It never ends.I'm at the point now where I am waiting for my hair to grow back. It is coming in white of all colors and I always had my hair colored black. Just seems like it is taking so long. But that is the least of my worries.
Had a pre-op check up with my primary doctor, EKG was normal, and I am good to go for my exchange on April 9th.
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HI Shorfi, I am feeling a little better each day. I have a lot of trouble with neuropathy in my hands and feet from the Taxol, but I think it is starting to resolve a little. And my joints ache all the time. I take Advil nearly every day which helps some. I am adjusting to not being able to do as much for myself as I would like, and my hands don't work the way I want them to. I have some sewing that I need to get done this weekend, we will see how that goes (big heavy canvas), will probably need DH to help me. Your location says "at work"....have you been working through all of this? I went back to work 3 weeks after my BMX and worked through the chemo, with a day or two off here and there. It was grueling, but it helped me focus on something else. I must have been pretty cranky though, because someone said to me the other day "glad you are feeling better"....I can take the hint!
My hair is growing back, although not as well as I would like. It seems to be filling in from the bottom up. I actually used the trimmer the other day because I had all kinds of wild pieces sticking out. Trying to even it up as it fills in. I can't wait to go "topless." Hopefully by the time the warm weather comes. It came out when it started getting cooler, it can come back when it is warmer! Although yesterday was the first day of spring and today it's snowing out....I am also trying to get more info about TNBC. There is a forum tnbc.org but the participants do not post nearly as frequently as I have found here on BCO. I go back to my MO next Friday, 4 weeks after the end of chemo. I am compiling a list of questions for him. Among them, I would like a cop of my second pathology report. I have asked for it, but they keep giving me the one from the initial post-op path. I have tried to keep copies of everything so that I can go back and review to make sure I have a clear understanding of everything. So I will ask again next week, and hope they give it to me. A lot of my info is posted to my HealthTrak account for my insurance, and I can see them on the Internet, but some things are not.
Hope today finds you feeling better too!
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Rhody, I have my bilateral mastectomies on August 1st and was out of work until October 1st. I started my first chemo treatment in late September and had to come back to work October 1st. It was hard for me, but when I would get home I went straight to bed. Nothing worked for as far as anti-nausea meds. I was on Zofran initially, then Compazine. Ativan was added because I was getting no relief from the nausea. It was terrible for about a week after chemo. I could barely and dropped a fair amount of weight during those months. But during my last three treatments with the Taxotere, that was a breeze. Still tired, but I tolerated that chemo very well. I would have my chemo treatments on Friday and returned back to work on Wednesday. I really needed that time off too. But I think the Taxotere was building up so much after each treatment that I could hardly stand being at work. I would take days off, but at least I wasn't nauseated from it. My co-workers all gave me hours so that I could get well...they were so sweet. Fortunately I work as an Admin Asst, so I can sit pretty much of the day.My BS always gave me copies of my reports before she would enter the office. Actually it was her assistant. That is how I found out I had breast cancer AGAIN. It was a hard pill to swallow because I had breast cancer 9 years before being diagnosed again, and the thought of doing chemo again was too much. I have thrown all the paperwork away because I don't want the reminders. But in hindsight, it was easier the first time. This time was harder. This time I didn't have to fight this alone. I married a wonderful man 5 years ago, and he has stuck with me and has been the best supporter and comforter to me. There is nothing he wouldn't do for me and I appreciate that.
My hair...is growing on the sides and back and the middle is peach fuzz and growing in white. It seems like it is taking so long. I have no eyelashes still and no eyebrows. The eyebrows are no problem because I was always limited in that area anyway and have used an eyebrow pencil for years. My beautiful nails turned dark and my toenails are dark. They are trying to get back to normal. I cut them down every two or three days because I can't stand seeing the darkness. I'm sorry, if I am sounding vain, but I loved getting my nails and having pedicures every two weeks.
I used an out of network provider for the mastectomy because the first time around she did everything for me FREE. I never once received a bill and for some strange reason I thought my insurance would pay for it. Her fee was $8000 and they only paid her $494. So I am having a second appeal with my insurance company to see if they pay any additional monies to the physician. Her office staff said I could send in whatever amount I can afford...take as long as I need to pay the balance off...wasn't that nice of her? She is a lovely woman and I love her. She takes good care of me.
Sorry for being so verbose, I just feel a good today and happy that you are feeling a bit better too
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Here's a good triple negative story for you. A friend I went to high school with was 35, breast feeding and finds a lump the size of a small orange...puts it off for awhile...finally gets diagnosed. She does not even have time to wait for a mastectomy to start chemo..they lumpectomy that thing. She has chemo and radiation. Boom cure. For years. She did have reoccurance in other breast NOT TRIPLE NEG about 15 years later. Takes care of it and is doing great. Honestly, it is not a death sentence
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I have the same as you, chemo as well, starting the 23rd April. I am nervous of how thats going to feel! 4 rounds, How did it go for you?
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I am 31 and have two kids(6 and2) Just got done with round 3 of Taxol. 1st and next week will be Taxol and Carboplatin. The week I started chemo my tumor measured 6x6. Last week it measured 5x4!! Today he came by and felt me up, he said it felt like it was breaking apart. On week 6 I get an MRI to know for sure if it's working. I feel good that it is. I still get really scared. I got a care package from a friend in Australia and turns out SHE was TN. She's had NED since 06!! Talk about hope. Someone I know had it and made it!!! So surreal. So far Chemo has been bad. Just feel REALLY sleepy. When I get both doses I get bone and muscle ache. Unbearable sleepiness. Luckily my mom has been staying with us(10 cancer free(not TN)) I'm lucky to have a great support system.
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Hello Everyone!
There is hope despite how scary TN can be! I am thankful that I am coming up on my 5 year anniversary cancer free so far in July. I was diagnosed at age 47 and was scared to death. I remember it truly feeling like it was a rollercoaster and not a fun one since it was my life! Chemo may just be a very nasty friend but I was lucky to have a total response and no cancer left at lumpectomy time. I do feel fear of recurrence every time a new health issue comes up, but I know I must still live my life one day at a time. Hang in there to all of you going through this!
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Chemo IS nasty, but when I was going through it I kept telling myself that it "beats the alternative." One day at a time, sometimes, one hour at a time. When it's all over you can look back and think "Wow! I did it!" I finished 6 weeks ago, and as I look back at the last year I am amazed at how much happened. But I am here, and the sun is shining after a very long, hard winter. I am trying to make lifestyle changes to reduce my risk of recurrence, and am just thankful that they caught the TN status (it was almost missed, discovered two months after my mastectomy).
Happy Easter to everyone who celebrates it!
Martha
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Martha if you find any true way of making those changes please let me know. As you know mine did return and like a dumb a** I just can't seem to make the changes I need to make.............;(
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Thank you Cindy! You give me peace and hope!
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Hi Everyone -
I am 10 + years out and doing great, NED all the way. Here's hoping for 11 as I go for my next mammo in October 2014. There is hope, it is NOT a death sentence :-)
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Gorilla12 THANK YOU for posting..................it is scary and in my case having returned once already I need all the hope I can get.CONGRATS TO YOU!!!
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Hi I went thru estrogen positive breast cancer 15 years ago at age 43. Now 58 developed tnbc! Dr will start me on Cisplatin and Taxotere on Thursday. Anyone ever do this? I'm so scared,
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Cheri56...............thoughts and prayers with you0 -
Cheri56, Welcome to BCO. I did neoadjuvant carboplatin and taxotere for my TN tumor. Sending good thoughts your way. Feel free to PM me if you have any questions. Best wishes!!
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Hi All,
I only come here at my "year" check ups to post how it went. So far, 3 years cancer free and doing great! I am so happy to scroll through here and see other success stories, it gives me great hope that I will continue to be cancer free as the years click by. For all of you dealing with TN or just getting the diagnosis, have faith that you can beat it. Much love and support to all of you as you battle this disease!
Deb
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Great news ettasmom!!
See you on your 4th anniversary!!
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I will be celebrating 15 years cancer free after a TN diagnosis in 1999. I had a lumpectomy, followed by A-C , then Taxol, followed by radiation daily for about 6 weeks. Treatment is tough, but persevere, there is a wonderful life beyond chemo and radiation.
I hope my experience will be of some encouragement to those of you recently diagnosed. TN breast cancer is NOT a death sentence!!
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Deb congrats!!!Lamabg......................congrats and thank you SO much for sharing your story...............I had a recurrence and had to go back through treatment and I have been really scared ever since.............kind of hopeless in a way, but trying to stay strong.
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thank you for your encouraging words I just joined this site I was diagnosed while pregnant with my 8th child 2 months ago and getting ready to start chemo 5 on Friday. Believing for the best & fighting to be here for my children.
Thank you to everyone for sharing their stories
God bless
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Pgplus8, Welcome to BCO. You will find a lot of support on these boards. Best wishes to you while going through treatment!!
lamabg, 15 years is awesome!! Thanks for sharing that with us all!!
Hang in there Stupidboob!!
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Stay strong, 'Stupidboob', and do not give up.
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