Podcast: Hope After a Triple-Negative Diagnosis
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I was diagnosed on 12-16-2011 - my 53rd birthday. Had double mastectomy on 12-30-11. My cancer was NOT detected on diagnotic mammogram and sonogram on 4/27/11. I have never missed a annual mammogram/sonogram since I turned 30. Was given the "all clear" not to return for 1 year. However I had met my deductible and due to family history (and last MRI in 2007) I decided to get an MRI - THANK GOD!!! My radiologist was unable to find the cancer via sonogram even AFTER the MRI had positive results - resulting in my MRI guided biopsy. I would like to know if anyone else has had something like this happen. Also, I decided against any chemo treatments at all. Has anyone else made this same decision and if so what has been the outcome? I had DIEP reconstruction (after skin sparring and nipple sparring BMX) on 1-8-12 and am having revisional surgery (scar) on 5-30-12.
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Thank you for writing the book and for this thread. Sisters...it is not a death sentence by any means. Many of us are cured. I pray I am one of them. Had tons of possitive nodes...took tons of chemo and now am 4 yrs, 4 months out with no sign of recurrence.
Chemo is so doable....just get good anti-nausea meds...and thank God for the existance of chemo.
Meg
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My cancer didn't show up on Mammo OR MRI! How scary is that! I found the lump. By the time it was removed it was 3.4 cm. Since the bilateral mastectomy, they found multiple papillomas which added up to about 6cm of insitu tumors. The lump I found was invasive, and thankfully, the only one. What I can't understand is how ALL of that was missed on mammos and MRI's? The ultrasounds were inconclusive too. How can this be? I would have had prophylactic mastectomy a long time ago if I had known all that was hiding in my breast! How can this be?
Sally
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I am also a triple negative b.C. survivor. Surgery was in 2009.. bil/mx and recon. I am hearing 5 year seems to be the mark for reoccurence and wonder if that stands true for those here? I am stunned to hear on ABC news correspndent Robin Roberts developing a blood disorder (cannot spell it) and looks like it is caused possibly from her past BC TX. I live each day to the fullest and am grateful to have what have thus far and here to help others with this disease.! Triple negative BC is challenging but it is not the end of living!!!!I just want to keep up with the education on it and to be sure we are doin all we can on it!!! Be well and know this forum has the best support and info!!!
Donna
Tucson,AZ
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Hi All,
I have recently been diagnosed with triple negative invasive ductile carcinoma, stage 3. I am a 38 year old mother of 4. I have just finished 6 rounds of chemo with very positive results. I am now awaiting breast conserving surgery with complete axillary node clearance.(multiple lesions found). Also I am going to be tested to see if I carry the BRAC1/BRAC2 gene. My mum is a ten year survivor of breast cancer, so she has been trying to help me through.
I have been feeling very isolated because of the diagnosis, particularly as there is not much information on it, also most research done seems to be quite recent, and most not done in the uk.
It has helped reading your posts, and ,knowing I am not alone. It has been rough and I know I have a hell of a long road ahead, but with just knowing there is support out there it makes it much easier to bear. xx
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I was diagnosed with tnidc, stage 1 grade 3 on 6/7/12. I start my first round of 6 chemo treatments on 7/17 then total mx after that. I am only 42 and very scared I will be so happy when I can look back on this as just a bad speed bump in life.
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Three years
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Congratulations! I hope in three years time I can be writing that!
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Hope all goes well. I found the chemo tough, but bearable. If anyone offers you help don't refuse, I tried to be as independent as possible, but it was lovely to have someone to cook a meal and hoover up. I am seeing a genetics counsellor soon to discuss the likelihood of having the dodgy gene, but first I am determined to have a holiday and treat my children to some special family time. I am determined that having cancer is not going to rule my life, and keeping upbeat and positive has definately helped me, as well as my wonderful family and cherished friends.
Keep smiling and keep positive. x
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I was diagnosed with TNBC in August 2011 in right breast. Tumor size was 1.3cm. I had a double masectomy 2 weeks later and tumor size was 3.5cm. I did 6 chemo treatments e 3 weeks of TAC. I also did 32 radiation treatments. On June 5,2012 I had another petscan and guess what ?.? Yep, Cancer again 2 times in 10 months.. in a lymph node in my chest wall.. already had radiation on tissue above this, so... no radiation.. I am preparing for a surgery that they say is pretty big because of location and size.. then just as my hair has grown back and can finally manage it.. chemo again....still trying to hold my head high. I am 47yrs old and I have 5 kids and I have not met all of my grandchildren yet. shirley
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I am to begin Taxotere/Cytoxan on July 31 . . . any "helpful hints" or loving warnings . . . I'm scared . . .
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FernMF- Don't be scared of chemo! Chemo is your ticket to being cancer free--embrace and welcome it! I looked forward to chemo every other week because I knew we were killing the cancer--it is an empowering feeling in an otherwise somewhat powerless time in our lives.
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Thanks JillJ . . . I read somewhere tonight that losing the hair can be viewed as a positive - the chemicals are "killing stuff" - the hair loss is an outward sign that the chmicals are working . . . My mantra today became "I AM STRONG, I AM NOT SICK" . . hopefully I'll be better than a basket case come tuesday morning at 9:30 . . .
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Round 1 Chemo was yesterday. Received my Neulasta injection today - I am a CHICKEN for shots, so after my fear-tears, it was over. I requested the shot to be warmed (they had already done that) . . I asked about getting it in my stomach as Sylvia suggested, the nurse said that they never administer in the stomach at this place. I haven't been there long enough to KNOW for sure, but feel confident they are competent and caring . . . so, in the back/fatty part of my upper arm. No problems. So far, no side effects except for metal mouth and "fear tears". God is Good. Thanks for all the good news from you who are having anniversaries of note. This is WAY encouraging to me, a NEWBIE.
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FernMF- I'm glad you're finding the chemo as a friend! You will find the chemo routine gets very normal quite quickly. I buzzed my hair before I started chemo, then had it shaved it completely bald when it started falling out shortly after starting chemo. Let me tell you that was such an empowering feeling! And, swimming bald feels absolutely awesome! At night (which always seemed to be the time when my mind thought most about what COULD happen) I imagined the chemo as a video game--zapping the tumor to keep myself from thinking too much so I could fall asleep. I know it sounds kind of stupid but it helped. Triple neg scared me also once I started researching, but when I found out that chemo often works better on it than on other types I couldn't get enough of it fast enough, lol. I am another one of us who are proof that you can beat it--pathologic complete response for me as well as others on here. Attitude is everything--attack this shit!
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Thanks JillJ - the first 2 days (tuesday and wednesday) were actually fine - the post-steroid thursday and today are the pits - I can't get comfortable, can't sit still, can't lay, can't see well, today is better than yesterday but still pretty much a pain in the but . . . actually, not 'pain' just disconcerting . . the oncology nurse said it was more than likely the steroid de-tox . . . bone pain from neualasta will be next week as I try to get back to work . . . Thanks for all the good thoughts and suggestions.
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Not sure if you already know about this, but an Aleve + a Claritin each morning really help the bone pain, especially once you start the Taxol/Taxotere.
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I too have recently been told TN and I am scared. I start chemo on Wed. I have 5 kids and my husband will be gone with the military for all my treatment. I know there is an answer out there for us.
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Fern, I had only minor bone pain from my first Neulastim shot and none from my second (which is a blessing as I seem to have every chemo side effect there is).
I was pretty freaked out by the neulastim needle because it was given to me to self-administer the day after chemo! I have never done that before. The oncology nurse told me to do a practice test shot of saline in my stomach in her presence but I declined. I feel like enough of a pincushion- sure as heck didn't want a single unnecessary hole, particularly a self inflicted one. Then she added, no pressure but this shot costs (my insurance company that is, thank heavens) 7000dhs (about $US2k)!!! so I had better not mess it up. I spurted a few drops out the top when I was preparing the needle and a few more on my stomach and thought Darn, there goes $300! Turns out I would make a terrible junkie. I did a little better with my 2nd injection, but I don't recommend anyone else letting me shoot them up until I have had a bit more practice. Still not looking forward to giving myself the 3rd one in a couple of days...
Lauta, I am sorry your husband will be gone during your treatments. I am sending my kids to summer camp every day during the week after chemo, and trying to spend as much time as possible with them on the days I don't feel too sick. In between I just do what I can, let them pile in the bed with me for story times if it is all I can do. I prepare and freeze meals ahead of time for the days I cannot cook and try to stock easy to make snacks that they can get for themselves like bags of prewashed baby carrots and hummous to dip it in, cubes of cream cheese and rice crackers, etc. Accept all the help that is offered to you. You will get through this.
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Round #1 complete - day three and four were NOT good for me, I am such a big baby . . . but day 5 was o.k. and today, day 6, seems to be MUCH better. walked 2 miles (albeit slower than normal) and now off to church. If it stays the same as now, I'll be going back to work tomorrow for the two weeks in between . . . . God is Good . . . I would NOT be able to give myself shots . . . my hubby would have to do it, I fear . . . I cry when the nurse comes after me . . . . God bless you all . . . thanks for sharing.
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I was diagnosed with IDC grade 3, triple neg this past Friday. I am 38 and scared out of my mind..I am married and have 3 kids, 16, 13, 10. I had no idea tns was bad until my friend google informed me and I still don't really understand why it is worse. Please tell me there is hope. I'm so afraid!!
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There is hope. There are many Women here that are doing well after treatment. I felt just like you. My best advice is stop researching because a lot of what you read is old info. I am starting week 5 of Chemo tomorrow. So far I am doing fine and you will too. You will get a lot of info on this site. The worst part is the diagnosis. It gets better please believe me. Marianne
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Thank you so much!! I'm sure I will be leaning on you ladies quite a bit!!
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Please keep writing and asking questions. You will be helped here, I promise. Marianne
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the 5 owens - - YES THERE IS HOPE - - get to the BEST team for Triple Negative . . . I posted elsewhere - maybe they can do the chemo BEFORE they do the surgery - that would prove (to me, it would have) that the chemo is working on the tumor . . . I had surgery first and now just have to wait through chemo and months/years before I figure out recurrence . . working on a percentage is what i'm doing - working on the reality that the chemo WORKS might give you a better mental outlook, even though, I suppose recurrence chances are there for all us TN's Good luck to you in finding the right TEAM to do your case - don't settle for less than a team you have CONFIDENCE in !
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I was diagnosed on Friday, July 13th with Triple Negative. I will be having surgery double mastectomy on Aug 23th. I am looking forward to the surgery, I know the cancer will be gone. I am not looking forward to Chemo, but I welcome it to confirm that the cancer is gone. I will do any thing to fight the battle. I know that days will be hard but thats life. I can handle hard days as long as the cancer is gone.
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Lumbee - - so sorry to hear of your diagnosis - - the surgery (no reconstruction) was a very easy thing for me . . . and God blessed us in the month of May here in WV with beautiful, cool enough weather that I did much of my recovery (three weeks off work total) OUTSIDE - it was such a beautiful time for me to enjoy the flowers and all . . . GOOD LUCK TO YOU.
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Late to this thread but wanted to tell you all I am NINE years out of triple neg BC!
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Saw the Oncologist (sweet man) today, 7 days past first chemotherapy - white blood cells were 16,200 - YIPPPPPEEEEEEE - thanks Neulasta . . . after a full week, I honestly believe "I can do this" . . . I was so very petrified fearing the worst, now the first week has come and gone and the doc says it is unlikely to get worse for the next three sessions . . . YIPEE YIPEE YIPEE . . . picked up the EXPENSIVE wig on the way home - it's actually quite nice, hubby says he thinks he likes its color better than my color (of course, who would really know what my "real" color is - I haven't let it be au naturale for 100 years) . . . so, GOOD LUCK TO YOU ALL, I am a very happy camper today. You are all an inspiration of hope - - may God in his mercy wrap his big loving arms around you and STOP THE MADNESS that your body is experiencing . . . I pray for you PEACE to sleep, STRENGTH to walk and sit, DESIRE to eat and drink, and REMISSION/CURE for the nasty cancer . . . . THANKS A BUNCH FOR YOUR INSPIRATION of how long some of you have had TN and are still there. Today was the first day for me to believe I may just kick this nasty disease's butt!!!
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Fern: Great to hear your appt. went so well and you are feeling hopeful. Darn right, you can kick this disease's butt!
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