Podcast: Hope After a Triple-Negative Diagnosis
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Almost two weeks out of surgery. Hopefully getting drains out today. They are such a PAIN IN THE ASS!!! According to the Doc. everything is out, lumps look good, and beast look good. Later this week, i meet with the Chemo dr. Not quite sure how I feel about that one, but that will determine what I do with my hair this weekend. Also, might go wig shopping, too. Mostly thinking wig because I work with four very activte boys who like to ask a lot of questions.
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Some really exciting news for us triple negs reported yesterday in USA Today here regarding mapping all BC gene mutations among other things:
Progress!
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cjw - hope you get the drains out today. You're right, they are a pain. I was dreading the thought that I would have to have drains when I have my TE exchange surgery. Luckily, I don't think I have to!
jillj - That is great news! I'm so glad they're putting more and more focus on TNs.
Does anyone else feel like TNs are more than 10-15% of breast cancers? Sure seems like a lot of us.
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burge : why no chemo 2nd time?
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burge : why no chemo 2nd time?
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burge : why no chemo 2nd time?
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burge : why no chemo 2nd time?
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Drains did not come out. Dr said they would probably stay in for four to six weeks (the enitre time I am out of work for recovery). So, I am not sure how that will affect the next step in treatment which I find out today...chemo. I was real down that day, because it wasn't what I expecting. First Chemo appt today, so not sure what to expect from that. I am guessing it is just this is the treatment, side effects, and start date?
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cjw - well, crap. That sounds like a long time to keep the drains in. I hope it happens sooner than they've predicted. How did your first chemo appt go? If this is your first appt with the MO, he/she will probably give you exactly what you said and more. They may also show you their facility and introduce you to the staff who will be taking care of you. Be sure to let us know how it went.
Went to PCP yesterday because I've been so depressed. She gave me Xanax and Zoloft - I hope they will take me out of this horrible funk I've been in. I'm tired of feeling so down and defeated.
Cancer...the gift that keeps on giving.
I HATE CANCER!
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The Chemo appt was to go over the final pathogoly report. Good News....nodes came back clear. No cancer in those. And no cancer in the right breast. (the saw a lump on the mri, but wasn't sure, so I just said take it). All of the cancer was "gotten" in surgery. Without chemo there is a 70% chance or reccurance with Chemo it is 90%. So, I will be doing chemo!! I start that in 3 weeks if the drains come out next Wednesday...which to goodness I hope they do!! I made an appt for the port to put in, an appt for "what to expect with chemo", an appt to get my hair cut off, and will probably go look at wigs while my girls are at their support group on Tuesday if that area is open that late. If not, I will have to go up on Wednesday. Radiation will be be talked about after the 20 week chemo process (yuck!). Oh-Gentic follow up appt next Wednesday, also. Waiting for parents to decided when they think they will go home for awile (CA) and maybe come back. My mom is more depressed than I am about all this. One step at a time...one day at a time.
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cjw75- your post sounds so similar to my experience. All the appointments and trying to learn as much as I could as fast as I could made life a bit crazy. My mother also had and is having a rough time. I can totally understand, all along I have said " it could be worse, it could be one of my kids". I may be 39, but I'm still her "kid". I wish she was able to be more of my rock during this, but we all have our own paths. I am not a person to lean on friends when I'm in need, but I have and am amazed. People really step up to the plate when needed. I've learned to let them.
I have only just(last Friday) had my first Chemo, so I don't have a lot of "experience". I will tell you that it really wasn't as bad as I had thought it would be. Yes, I have experienced every SE I was told about, but it is totally doable. Some of my hagovers in college were worse:) I think a lot has to do with staying positive. I keep looking at the Finish line.....hang on these next weeks with all the prep....once it starts, the closer you are to that finish line.0 -
Hey girls! I see a few more surgeries are out of the way and decision time for some of you is trying your patience! Staying positive is very important, but don't expect to feel like Little Merry Sunshine every freaking day! You are still here, we get that. This still sucks and you're allowed to be scared and hurt. Pissed. Let down. Find someone to talk to and you will be surprised how much better you feel. Don't forget you don't have to be strong for everyone. They're supposed to be strong for you! My mom and dad were 82 when I was diagnosed and they were my rock! Dad made me call every time I had a treatment. They made me come over for dinner. Little things that made them feel like they had a hand in my recovery. I hope I've told them enough how great they were!
I envy all of you with partners as I went through this myself. Please know I am praying for you all and sending positive thoughts and smiles!0 -
Chemo appt was about a port? Will I be put back to sleep for that? I am hoping to goodness that the reconcution dr takes these drains out on Wed, because they WILL NOT start chemo until they are out. Which will push everything back 2-4 weeks (including when my parents go home). I have made a wig appt, a hair cut appt, and looking into staying out of work a little longer. I will have the A/C followed by the 12 week T. Any suggestions of what I should be award of? thanks.
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Fernmf: looks like me and you have a similar dx. I had a 1.8 cm idc grade 3 triple neg, and had a bilat mast Aug 27th. I too will be getting the same chemo as you have had. I will be taking a drug though called Dexamthasone as a pre-med as it says on my rx required to recieve Docetaxel chemo. I guess they should have given it to you before.Funny talking about bilat vrs lumpectomy.I feel the same, if theres no tissue the cancer will go to the organs actually I asked my chemo dr, thats what he said.I asked him how I would know and he said I'd know because I would feel terrible and my bllod work would be all over the map. Great!!This is the problem with triple negative. He also told me my reoccurrance rate was 49% but would cut in half with chemo.Well the odds are not low enough.Anyways I start chemo Oct 15th.Its just strange we live thousands miles apart in different countries and we have the same treatment for the same dx,
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Anamerty - the dexamethasone is the STEROID - you take by mouth the day before and the day after chemo - then they give it in your IV when you start on chemo day. I had trouble with the strong dosage of that steroid - so Round 2 they decreased my dexamethasone on chemo day by half - and gave me prednisone by mouth the day before and after . . that worked VERY WELL to decrease the side effects from the steroids. I guess your odds of recurrence are higher than mine because this is your second BC? Did you have chemo the first time? (in 1999?) My surgeon said "I got it all" and the sentinel lymp was negative DURING surgery - but came back with micrometastic with the post-surgiral pathology . . . 0.83 mm . . very small . . . but the tumor board (of which my surgeon and oncologist serve) both said no radiation . . . and no additional lymph nodes to be surgically removed - I am thankful for that as radiation scares me . . and I don't want the risk of lymphodemia (sp?). I am trying to "think positive" and say the chemo is to decrease the 20% chance of getting BC again from the 1% chance that the surgeon didn't get it all surgically . . . . that makes it sound VERY SMALL . . and I have to continue to wrap my brain around the LOW % of chance of recurrence. I have a heart condition that necessitates a CT of the chest every 9 months . . . so the oncologist and my cardiologist have discussed that they will broaden the CT scan to include my body and brain to get a baseline for the "recurrence watch" that will start . . . . officially, I CHOOSE to say I have been cancer free since surgery date, 5/7/2012 - - so I am nearly 5 months cancer free! YIPEE . . . . Tomorrow is my last chemo round . . . YIPEE!
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@FermMF: thanks for info, I don't like the whole chemo thing. The first time I had breast cancer in 1999 I had a lumpectomy and rads no chemo. The cancer was under 2 cm and lymph nodes were clear, so it only required rads. Also the cancer was estrogen/progestoren positive they didn't do the her2 then. They had been giving tamox for this hormone positive but it wasn't used for that long so I actually started it about 1 year post and only went on it for a couple of months. This cancer is a totally new cancer, not a reoccurrence not even the same breast, but it is triple negative.Just that alone changes the outcome.I almost wish it had been a reoccur of the first, because once again it was found small, but currently there is nothing save for chemo that is effective but the reoccurrence rate for triple neg it so high,that if were a hormone pos. breast cancer I'd feel I'd have a much better chance
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Anamerty - yep - I feel the same way - pretty scared actually - that Stage I is "no big deal" but the triple negative is so bad . . . You and me - we are together on this one!
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Hello All,
I am Tri Neg and BRCA 1 AND BRCA 2 Positive!!!! woo hoo... Happy to say I am 10 years out from my Breast Cancer Diagnosis !!! You all can do it!!!!
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YouWear: Congrats girl, and thanks for stopping by - you give us all hope!
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ROUND 4 DONE - did a little mental happy dance on my way out that door - having a good day (all those steroids) . . . the weather here today was/is beautiful . . . a bit of yard work . . . not bad.
The oncologist said that we will follow with appts every three months with blood work - the blood work determines scans, etc. That will go on for 2 years. I asked about the TN connection to ovarian cancer and the BRC marker . . they did NOT do that test on my blood/tissue because I had no family history. I asked in light of the connection between ovarian cancer and TN, that maybe we SHOULD do that test . . . also, since I had no family history, I AM MAKING FAMILY history for my sisters and daughter . . DUH!!! He seemed open to that, and I will ask him again. Of course it is an expensive test and the insurance company would have to approve it . . I don't think that will be a problem, they have been very good so far on this journey. After two years, then it'll be 6 month appts until 5 years. FUN FUN.
THANKS YOU WEARPINK - I want to hear these good news reports . . . very helpful at the start of my journey!
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I did the gentic test. It came back postive on BRAC1. I got my drains take out yesterday. The PS didn't want to take them out, but they can't start the next step (chemo) until those damn things were out. After about 10 mins of checking the numbers and drains...he finally decided to take the drains out!! I was so happy that he did! So, today, I had the echo appt and the port cath. appt. I get the port cath put in on Monday. Start Chemo on the 18th. A/C for 4 sessions then T for 12 weekly sessions. It seems all to aggressive for me, but what the heck do I know! Radiation is still up in the air. My husband questions the radiation portion because there is no breast to radiate!
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I had no and will have no radiation . no breast tissue to irradiate!
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youwearpink - congrats on staying cancer-free for 10 years! I'm glad you let us know it can be done. I hope you'll continue to pop in to give us hope!
cjw and fern - I had the same thoughts about rads as you - what is left to radiate?? Well, after an appointment with the RO, he convinced me otherwise. Here's basically what he told me: 1) my positive lymph nodes were extracapsular which means the cancer had broken through the "skin" of the node, so I was at an increased risk for stray cells; 2) my breast tumor was poorly differentiated - ditto on the risk for stray cells; 3) BRCA 1+; 4) the aggressiveness of TNBC. Even though chemo is systemic and designed to kill all cancer cells, there may have been some cells left from the surgery sites and rads would effectively kill them.
I thought...what if I don't do rads and have a recurrence? Would I always wonder whether rads would have prevented it? So I decided that I wanted to throw everything at the f*cking disease to give me the best chance at survival. I chose to do rads. I had the last one on 8/20 and the lasting SEs are minimal. I don't regret my decision but I can tell you, I know how you feel. Ultimately, the choice is yours to make.
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journey4life...I see that you had your ovaries removed. I will be doing that too. Since I am BRAC 1 postitive. Not sure if I am looking forword to that or not!
I start the A/C 4 treatment plan on the 18th. Do you have any helpful tips to share? Then after that will be the 12 week T treatment. 90% chance of non-reoccurance is looking good to me, so I will deal with it, but I don't like that I don't know what to expect. Husband and I are talking about me staying out of work until the end of the A/C treatment since I work with kids, but I guess I will see how I feel after the 1st treatment on the 18th. 0 -
cjw - my surgery isn't until 11/20 so it will be a year since dx that I'll finally have everything done. I've also decided to have the TEs taken out and implants put in at the same time. From what I'm told, the implant surgery will be nothing like the BMX surgery so I should be okay having both procedures at the same time. I'm not exactly looking forward to it but I'm ready to get this sh*t over with.
Some tips - drink plenty of fluids before and after tx. With the "red devil," be prepared to pee red lol. Because your WBC counts may go down, you may get a Neulasta shot the day following tx. I took generic Claritin 24 hour a couple of days before the first tx and continued to take it every day until tx was over. I had some joint pain but it was manageable. Some women only take it for a day or two before and a few days after but I didn't want to feel any bone pain so I took one every day.
Basically, I did the same thing with the nausea med, taking it whether I needed it or not. Be sure they give you some before you start tx. I had bouts of nausea but they were manageable. Sometimes the fatigue was overwhelming. Give in to it and lie down when you feel it. You'll probably look around and think of all the things you could or should be doing...those things will wait! It is important that you take care of you during tx.
These are just a few things I think of right now...
Just remember that you CAN and WILL do this and we're all here to support and strengthen you.
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Hi gals! October is hard for me. My birthday, my cancer diagnosis, and breast cancer awareness month to remind me every day how my life was changed on my 49th birthday!! Oh, well. I'm here and alive!!!
Great to see survivors checking in! Thank you soooo much!
Dexamethasone made me eat too much, sleep too little, and generally drove me crazy. It was for nausea, and I had none, so I stopped it at the fourth treatment. I had it on my person, just didn't take it!! We all handle things differently, and I seemed to get good chemo genes from my lymphoma survivor Mom.
Haven't seen anything from Steph. Please know I think of you often. Prayers!!!0 -
Meg CONGRATS!!! Thanks for sharing because it is all death-death-death.............You can't turn to support groups for help because it is all about dying from it..........It is nice to know that there are people out there surviving this cancer
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Jillj thank you for sharing this.............:)
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cjw75 I did the AC and Taxol........is that the T you are talking about? The AC made me weird feeling and a little flush alot. I did pretty good on it though I did get sick to my stomach and especially if I bent over. As much as I hated the words it is DOABLE..........you find yourself using it afterwards. Is it fun.........no, is it horrible.......not really and each person reacts differently. Keep in mind though that I could not take alot of the meds that helped with things because they caused their own issues with me. I understand alot of women don't have issues. The Taxol............did not make me sick but OMG the bone pain was horrible for me. Treatment on Thursaday pain from hell on Saturday/Sunday. They say it is like someone stretching your bones. Just be prepared with pain meds (which I did not take much) if I ever have to go through it again.........I WILL!!! Best of luck to you...I am a medicine phob so when they would start telling me what they were going to do, I ask them not to tell me to just do it. If I had a reaction to something I wanted to know that I was not contributing to it by panicing since I suffer with anxiety. Of course the AC is red so there is no missing that one. They call it the Red Devil, but at my cancer center they said we call it the Red Angel because it is saving lives.
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youwearpink.............congrats and THANK YOU......some hope
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