Calling all TNs
Comments
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hi everyone . I never thought I would be here with breast cancer. I still cantt believe that this has happened.. I feel like Im in a dream and really want to wake up- only each time I do wake up, I remember I just got diagnosed with breast cancer. I have been on the internet continually and am so scared to death.I am not eating much because every time I do, I feel like getting sick. My doctor gave m zanax which helps alittle.I feel so sorry for my husband who is at a loss as how to help me. I have a 2 cm tumor on my right breast at the 10:00 position. I am age 56 and it is triple negative. I am scheduled for surgery on Wednesday morning. I have decided to have bilateral mastectomies to help lessen my risk.. They will put in tissue expanders so they can do reconst later. I know that this surgery isnt fun and I am hoping for no node involvement but am not sure until after the surgery.. I went to my hairdresser yesterday and had my hair cut super short- kinda like jamie lee curtis so care will be easier. i know that I will be getting heavy chemo after the surgery but do no yet know what i will be getting. I live in sunny florida and my daughter is in med school at UF- Shands. She is getting me in with an onc there right after surgery for a consult on the chemo regime. i will also have an onc here where I live in south florida so my chemo can be given here by my home. Thankfully she will be here to help me after surgery for the first week or so. I am so scared. I dont want to die and this triple neg thing worries me so. At least it shows that my bone scan is clean and my cea 15 is normal. I have a really great surgeon who is eccellent and very kind. Im so afraid it will come back. reading your comments have been very helpful to me because although my friends are supportive, no one I know has ever had triple neg BC. thanks.. .
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LMT - I have not had reconstruction done yet, and if I get my way, I probably won't. It is something my DH and I have to hash out. But I really don't mind. My BS did an amazing job, every other doctor has told me it looks fabulous. My scars are even and minimal, and I healed well. I find the bra with prostheses very comfortable to be honest, it never rubs or feels cumbersome. I'd say I use it about 1/2 the time I go out. Depends on what I'm doing. So for me, no regrets. Also, I recovered very easily from my BMX because I didn't have any extra stuff done. I was literally off pain meds within 24 hours and moving around the next day no problem. Good luck!
Painting - I think because your job isn't strenuous physically, you might be okay. Maybe you can schedule a little down time between clients so you can just put your head down for 10-15 minutes after each session? I hope it works out for you.
Jeanea - welcome, though I am sorry you are here. This is such a scary diagnosis when you first hear it, and then when you search the internet it gets downright terrifying. The good news is, it isn't quite as scary as all that stuff would have you believe. When you read something that says "poorer prognosis," keep in mind that is relative. The rate of recurrence isn't higher than ER+, just faster. Once you get to 3 years out, your chances of recurrence drop to below ER+, and at 5 years out, you go back to the general population risk. So your prognosis is still VERY good!! With chemo and no nodes, your chances of being just fine are 85%+. Add exercise and diet into the mix, and it is even higher. Stick around here, this group is very supportive, even if all you want to do is whine and complain
.Speaking of whining and complaining, my poor RO got the worst of me yesterday, lol. I was giving him tons of grief for not letting me do both rads and chemo at the same time. He told me if he were in my shoes, he'd be doing the same thing to the 10th degree, but that I had to trust he and my MO really were trying to maximize my outcome. Its a fine line, I just need to accept that. Ah well, he's a good sport at least.
Hope everyone has a nice weekend! We are either going to the North Shore tomorrow for the beach, or to Queechee, VT for the balloon festival. Still need to get pics of my car, but the weather hasn't been behaving...
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Painting, I was on taxotere and carboplatin. I got slight neuropathy from taxotere but only towards the very end. Not much nausea - the meds they gave me and compazine worked the first two times through, then my sister (who is a nurse asst) told me to take ativan at night to help me sleep (sleep did help!); then the last two rounds, I asked for the big dog - Emend, which was great. I worked the entire way through chemo. My infusion day was Thursday, which I generally took off, then worked on Friday (steroids!) and my bad days were sunday and monday. Which made me think maybe I should've done Wednesday infusions but it was fine. It wasn't easy, and some days I sort of just sat there but managed it ok. Miralax became my best friend LOL - doesn't taste at all, so I threw it in gatorade and managed that pretty well.
Jeanea, when I was first diagnosed, everyone told me to stay off the internet. I of course trolled a bit and got immediately freaked out. To tell the truth, this was/is the only place I found as a safe place... to ask questions, to vent, to be silly... this is a great forum so don't be shy to use it.
Titan, I'm right behind you on the new normal stuff. I had my last 3 month checkup last week, and my onc said he didn't need to see me until next year but to keep in close touch if anything of any concern comes up = simultaneously happy and freaked out. So of course, the last day or so, I feel a twinge in my sternum area and begin obsessing about symptoms (do I have shortness of breath? gee. maybe. hmm. *breathe in and out* ). I have never been prone to hypochrondiac behavior, but I find my mind going RIGHT THERE every time. I took a claritin (lots of mold and pollen here) and it feels better. Now feel stoopid. *SIGH* I don't say anything to anyone, so thank goodness have you ladies to share my goofiness with
Wishing everyone peace and SE free weekend!!!
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jeanana..I am new like you to, find I am OK then terrified. Already met my oncologist, plan to start taxatere and cytoxan on July 8...scary for sure but I too am holiding on to the 85% as
Suze 35 mentioned and doing my own health stuff of iron and vitamin d and e and a daily vitamin to get me in the best shape. I walk daily and if my lumpectomy hadn't required to more surgeries would be swimming at our ocean home in RI. I am also 56. I thought all had come together. My daughter is getting married, son going ot college, we were going to put our Boston house on themarket , my husband got a new job after 22 months laid off and we would move to the shore and commute to work and then boom. But, I reached out and a friend started a lotsahelpinghands websie for me and I feel truly blessed by the outpouring of love and support.
Swiftbird you give me hope...my chemo is Friday but I think I will take the first Monday off and see how I do...they have alrready given me Rx for zofran, compazine, lorazepam, steroids... and said htere is more to come if needed..Did you get neulasta one day post chemo? Any problems witht hat
I make art and have several shows coming up so I use this to focus.
I am on the internet constantly too and think I need to stop.
I will get a second opinion and avail myself of research opportunities at MGH on June 28th. I am 3 weeks 2 days from diagnosis and haven't settled down.
We will make it through. We are in a similar place and age and we are all here praying or meditating and thinking about each and everyone of us getting well.
I feel the love and support of the women on this site and you will too.
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-Jeanene- I have been *exactly where you are now (age, dx, xanax, etc.) I don't like to revisit that very dark time, so I don't post much except to add a funny picture or mention a personal story o try and lighten things up.
This is what I will say though, and you have to believe it:
You can do this, but it won't be easy.
There will be hard days, but you will get through them.
The terror and stress *will* subside, but only time can do that.
You are stronger than you think.
Trust me, I know.
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Hey Ladies,
Hope everyone is having a good weekend. I have a question for everyone. How many of you have joined support groups in your area, not this website? My husband is getting annoyed with me because I haven't really looked into any. I like this website, he doesn't understand it he thinks its like too much negative info on the internet. My problem with joining a support group in my area is I live is SW Florida and most of the population is a bit older than I am, I'm 41 years old and am the youngest by far in my neighborhood, I'm also TN. I don't really think me going to a support group where I'm the youngest by far and TN is going to be beneficial for me. I will feel like I stick out and I don't like it. I'm already the youngest at the cancer center when I go for my appts. Its really scary to me and it doesn't help when I look around and see no one else in a similiar situation. I seriously don't mean to offend anyone of any age, I was just trying to say that I have unfortunately found a lot of women my age on this forum when there are none living close by to me.
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mccrimmon- Husband's don't always know what is best.... do what you are comfortable with.
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I'm glad i just read your post, how is your wife doing now? I'm just about to start the Gemzar & carboplatin in a few weeks. i had a 8mm tumor removed followed by fec & taxotare chemo which did not work. I had a reacurrance in my lymphs 10 out of 18 were positive, hense the new chemo i'm about to start. i've been feeling very scared as my oncologist has said the Gemzar & Carboplatin is a stab in the dark and she doesn't no if it would work. So i'm pleased to here it has worked for someone else
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mccrimmon: I went to all sorts of support groups while undergoing chemo (they were at the hospital where I was getting treated so it was easy) and the age range was from 21 yo to 70 yo. It was great to be able to attend these and I learned so much and gained lots of insite from going. I agree with Heidi, though-it's your decision and only you know if you need this support or not.
Jeanene: You have found the best place to come for support! Stay off of the regular internet-it can make you crazy! Only come to threads on here that are supportive as some can be downright awful. Surround yourself with only the people you love and who love you and that will include all of the courageous women here on this thread. You are about to start a life changing journey but we will be here to support you through this challenging time. Hugs!
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LMT: We are all so different-Myself, I could not imagine waking up without breast, however, I am very vain, love clothes, live in a (usually) hot climate and the thought of having to wear even more padding then I already did was just dismaying for me. Reconstruction was a way to help me process all of the BC stuff and also end up with breasts that no longer needed padding to look like breasts. Many women go without, some do recon later after they process all of this--it's a very personal decision and one that can be made later or not at all. For me, having to wear a prosthetic would be more of a reminder then the scars that I have. Best of luck with your decision and I recommend doing only what feels right to you. Hugs!
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My dr's told me to stay off the internet unless it is this site or the american cancer society site. Anybody can put stuff on the internet and it could be false. So I have done just that.
Sorry to all the newbies, you can do this and you will be strong!
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Hello ladies, I am new to this site and this board. I have TNBC and was dx a year ago in May. I had A/C and Taxol prior to my mastectomy. That was followed by 30 radiation treatments. Since I can't figure out how to put the dx on the bottom of the screen, I'll just tell you I was Stage 3B with extensive node involvement. I never had a lump. The ONLY thing wrong was a slight pink area on my breast. How scary is that? I am 62 years old. There is no cancer history in my family. The ugly news is that less than 2 months after my radiation, I developed a rashlike area on my chest where the mastectomy was. Five doctor saw it, and I had a PET scan, and no one thought it had anything to do with cancer. My Onco saw me and sent me to have a punch biopsy, which concluded that I now have an "inflammatory recurrence." That means my skin has breast cancer--like IBC. I also have three nodes on my left (the healthy) side. These have tested positive for cancer.
I am now on Xeloda, and the purple-redness has faded considerably, making the doc and me happy. I am seeking a second opinion at Fox Chase in Philly with a doc who specializes in IBC. My breast specialist, a derm doc and my Onco all said my skin did not present as typical inflammatory BC. They even took pics to show to other docs.
I could really use some words of wisdom from anyone.I go to a group here in town, but I feel like I need more from people who might undertand my situation. I want to live, and I want to be as healthy as I can be. I know I am older than many on this board, and if you have any suggestions on anything that can make my situation more tolerable, please let me know.
BTW Xeloda has had few side effects, and I get to keep my hair!
Thanks in advance.
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thank you all SO much for your supportive words. they really mean alot!!! I am so happy to have found so many "sisters" and it helps imeasurably not to be alone. I love you all! I know that I can do this!! can't wait for my surgery to be over!!! I am so happy to see so many positive results from all of you! hugs to you all!
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Susanhf: There are women of all ages on here, not just younger women! I do not know much about IBC but maybe there are others on here who will come on here. I imagine there must be a thread for IBC specifically, too. This is a great place for support for TNBC and I am so glad you found your way here. It's sounds like you have great dr's who are familiar with IBC, which, from what I hear, is very important. Glad the Xeloda is working and you get to keep your hair!!!
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Susanhf - sent you a private message.
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Susanhf..you are not older at all..isn't 62 the new 42??? .there are several women over 60 with TN..and several in their 50's like myself..unfortunately triple negative hits all ages...yes..mostly younger women...but there are a bunch of us older (over 50) here also...don't worry about it..we all just kinda hang together...even though we are at different points of our lives.
Welcome to this TN thread...
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LMT - I am 50, and have decided to be a "flat top". I will go back to have my "dog ears" removed, but no other reconstruction. After having a great pair of boobs, it surprised me, how much
I like my new look. And not wearing a bra - heaven.0 -
Susanhf, I'm not much younger than you (56)and like LMT should be having surgery some time in the summer after my neo adjuvant chemo ends on 12th August (if all goes according to schedule!).. while my onc and bs want to discuss whether lump/mx closer to the date, depending on how far tumour has shrunk, I'm pretty sure I'll be going for a dbl mx to minimise recurrance, and like LMT, am not planning to have reconstructive surgery... at least not to start with..Have spent all my life with large breasts (nice when young, much less attractive when droopy!!), and am actually looking forward to the freedom of not having to find the ideal bra, and like OBXK going for a new look...the boyish rather than the femme fatale!
Good luck to you all, especially Jeanena for yr sugery on Wednesday.
Can anyone tell me how to input my med details for them to appear at the bottom of each post like the rest of you have done so I don't have to keep repeating these details?Thanks
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under your home, edit my diagnosis and save info
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lynn18: yes I would recommend St. Lucia and will PM you.
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I was diagnosed on May 10th, they thought it was just TNT size 1.5 cm with no lymph node involement. While waiting for my second opion with a breast specialist my breast began to swell and redden. The time frame was only 15 days before I saw the second opion.
The day of my appt. the doctor called me and told me I needed to come right down because the breast MRI I had done 4 days before showed 2 tumors in the right breast. I was shaking and shocked! When I got to the hospital they took me right to mamo and then to sonogram where the radiologist lead sonographer and doctor (that I hadn't meet yet) where waiting for me. They gave me a sonogram on the right side that showed two tiny tumors. When the doctor saw my left breast she said to my that't inflammatory. I said 15 days ago it didn't look like this! She said that's a stage 3C!!! I almost fainted I said should I pack my bags? and she said for what? It's treatable. I also had a biopsy on a lymph node above my left clavical that came back positive for cancer so they staged me a IV.
My CT scan came back no major organs involed. I told the Oncologist I don't want to here any more bad news just treat me.
I started 4 rounds of chemo on June 2nd. my last will be Sept.8 then double mastectomy,then radiation.
I believe that God is the only one that knows your path in life! and I am a strong believer in Jesus Christ, Iv'e prayed for strength in getting me through my chemo with less side effects and he has.
GOD BLESS ALL OF US TRIPLE NEGATIVE,INFLAMMATORY BREAST CANCER FIGHTERS!
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For Paintingmywaythru: Yes, we have a very similar diagnosis. I must tell you that T/C was not nearly as bad as I anticipated. The steroid really kept me going for the first 3 days so I worked (I was really wired for the first treatment). I had chemo on Fridays twice. I worked that day in the AM and took the afternoon off for the chemo (but I think I could have done the reverse with no problem too). You will probably get your shot on Monday. You can work that day and schedule the shot as late as possible. I would plan on taking Tues. - Thursday off for that first treatment since you don't know what to expect. For that reason, I wanted to change my chemo day to another day but my onc wanted me to schedule it on "his" day at the center. I can tell you that I actually felt better after my second treatment but I think it may be because I took Monday off too and got more sleep.
Sleep was/is a big problem for me. I used Ambien (the doc only gave me the 4 hour pill at first but then let me have the "time release" pill that lets you sleep for 7-8 hours). I see that many women here use Ativan which may work better. I try to go without any pills for the last week but it's hard to get to sleep when you know you need it in order to function properly at work. It's easier when I know I can sleep in and not wake up at 6:30 (although once you have your wig, it cuts down on your "prep" time)
I am wondering if my 4th and final treatment will be the toughest as I have to say that the fatigue latest longer for this 3rd treatment. I still only took 3 days off but I was pretty tired through the next week. But honestly, it's really not that bad. I totally forget about the cancer while working (except that I did end up telling everyone and they are very supportive - school). I have been very positive through the whole thing but of course, I'm only Stage 1 with no lymph nodes so I feel very fortunate.
You will get "metal mouth" and possibly "thrush", you'll lose your taste buds but I still have an appetite. I used to work out and run but it's hard to get that in when you work and are tired. I did some yoga today and worked out in the yard for hours. I had some bone pain after the first shot but I would take Aleve before I went in for the shot and didn't feel a thing for the 2nd and 3rd treatments.
I wish you the best and hope you find a wig that is close to your own hair. I bought an expensive one but like my $49 wig that I ordered from Paula Young.com the best. I ordered 8 and sent 7 back (only cost me $8 extra to send them all back).
McCrimmon321: I used this site as my "support group". I am much more into the medical side of my diagnosis than the emotional side. Maybe I'll need more help with time but right now I just want to learn all I can to make sure I'm making good decisions.
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Katfinn- thank you so much. This is very useful. Do you think you could have worked Tues through THursday or were you so washed out you needed tos tay in bed...
I was thinking of taking Monday off with my Friday treatments but I will play it by ear and do what I need to. I guess my clients will figure out what is going on..I am a therapist seeing individuals and couples. I should probably see if I can make it Wednesday and then I would work Thursday and Friday and rest Sat/Sun/Mon....anyway. I too am there Friday because it is hen the oncologist is there. Your words and info are very very comforting.
I expect life will feel very unsettled but I am trying to focus on our daughters wedding in 13 days.
I go to the radiation oncologist tomorrow. Do you know if radiation does anything to increase you statistics? Well I will find out soon enough. I truly appreciate your info. It sort of gives me an outline for my post treatmetn week.
Thank you.
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Rella: You are right, as long as we are ALIVE there is hope, and we fight and do what we have to do! I am a long time member of breastcancer.org, but there is also a great support site: www.tnbcfoundation.org. They are all about triple negatives, and have great discussion forums too. Yes, there are several on there who are 9 or even 12 years out... You are all my heroes!! My orig. dx was in 2007, and my recurrence with bone mets this past December. I am doing whatever I can and will continue to fight as well, but know that it's all in God's hands, and his will is my will.0
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Aryanna, Wow, things moved so fast, your head must be spinning! The good news is, in my opinion, surgery is a cake walk, compared to chemo. Before you know it, the holidays will be here, and all of this will be behind you.
Wishing you well, Karen0 -
My ca 27.29 was normal when I started treatment, but has been rising. I go to have it checked again tomorrow. I know enough about tumor markers, not to let it scare me, yet it does. Hope I get the results by Wed. It's hard to get back into living scan to scan, after having a few years reprive.
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Aryanna - that is scary, but I'm glad you started treatment so quickly! Just so you know, supraclavicular nodes are no longer considered Stage IV, and are treatable. I had two myself (treated with radiation) and my doctors are still hopeful I'll do well. No organ involvement as of yet!
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thanks ksmatthews I must be blind
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This guy takes great pics...
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Heidi - I want to be on that beach, watching that wave hit, holding an ice cold glass of dry chardonnay...sigh. You have the best photos.
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