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Someone here survived triple Negative ?

24

Comments

  • Vidya99
    Vidya99 Member Posts: 10
    edited May 2018

    How many weeks after surgery did your chemo start? The doctor did lumpectomy, then the pathology report came as TNBC. Now went to another doctor who is suggesting mastectomy and chemo after 3-4 weeks. My worry is after the first surgery(lumpectomy) there will be a gap of 7 weeks for the chemo to start. Is it OK?

  • vl22
    vl22 Member Posts: 471
    edited February 2018

    Hi Vidya99 - 7 weeks is ok - I think under 60 days is the recommendation. Why is this dr. suggestin the mastectomy?

  • Stepanie2
    Stepanie2 Member Posts: 1
    edited March 2018

    Hello! Diagnosed Wednesday with triple negative. These posts have helped me already, and I feel its just the beginning. Any tips are welcome in dealing with this terrifying journey. 35 years old with a 4 year old girl and 5 year old boy. Want to love on them forever.

  • vl22
    vl22 Member Posts: 471
    edited March 2018

    Stephanie2 - so sorry you are here. My “babies” are 14 and 16 years old and I completely understand wanting to be around for them. When I was first diagnosed, the thought of my own death created an indescribable fear in me. But I got over that real quick. Then all you can think about are your kids. I get it.

    It is terrifying, makes you angry, but once you get a treatment plan in place I promise you you’ll start to feel better. The truth is that the majority of us with TNBC will never have a recurrence.

    My advice is to really enjoy every day. Love those babies and take care of yourself. Throw all you can at this crap disease. Come here for support. Let us know how you’re doing because we do care.

    Hugs!



  • Am608
    Am608 Member Posts: 1
    edited March 2018

    Stephanie2, I was also diagnosed with TNBC this week. I have a 6 year old daughter, 4 year old son, 1 year old daughter and a husband I love very much. I am 36 and I am terrified of losing everything to this disease. I start chemo on Tuesday for 4 months, then surgery, radiation and 6 months of oral chemo. To make matters even worse a CT scan picked up a suspicious little spot on my sternum next to my tumor so I'm having that biopsied n ext Friday. I do find comfort in these posts. We can be there for eachother. I understand what you are going through!

  • vl22
    vl22 Member Posts: 471
    edited March 2018

    Am608 - I also had a suspicious spot on my sternum during diagnosis- turned out to be nothing. Hoping the same for you.

  • Collienike3
    Collienike3 Member Posts: 1
    edited March 2018

    Thank you for continuing to actively post here. I was diagnosed today IDC 2.9cm grade 3 triple negative. I’m having trouble finding many long-term survivors and it’s been causing me so much anxiety and fear. I’m 33, my kids are 13 and 5. I had no idea that even if my diagnosis came back positive that it could be quite so seemingly lethal. I’m scared out of my mind, but I had momentary relief upon seeing your profile.

  • moderators
    moderators Posts: 8,739
    edited March 2018

    Hi Collienike3, and welcome to Breastcancer.org,

    We know right now is a very overwhelming time, causing much anxiety and fear -- but we're so glad you found us. You're sure to meet many, many others here who have been diagnosed with triple negative breast cancer and are thriving!

    There's a couple other threads in this forum you should introduce yourself on too -- and find great support and inspiration:

    We hope this helps and we look forward to hearing more from you soon!

    --The Mods

  • erinr28
    erinr28 Member Posts: 5
    edited April 2018

    How are you doing now? I have stage 4 Triple Negative from day one in one breast and both lymph nodes and two in my neck and now in my bloodstream and it just morphed in the original pathology on the left side to 5% positive. I am feeling good and on antibodies now and preventative chemo. It will be 2yrs this Aug for me.

  • Nzdarl
    Nzdarl Member Posts: 1
    edited May 2018

    I was diagnosed in feb this year. Grade 3 triple negative stage 1c

    I had surgery first (lumpectomy) then chemo. TC for four rounds. The last one was yesterday.

    I am an avid amateur researcher and everything convinced me to do the chemo with the rads to follow.

    I am 56 with a lovely husband and gorgeous 25 year old daughter. This has scared and frightened me. But we are survivors from the moment we are diagnosed. I don’t know what the future will hold and I am not locking in to any future milestones (3 years, 5 years) rather doing everything in my power now to live well and boldly.

    Chemo is pretty awful, but not all the time. If you can let people around you know what you need then you can become even closer to them.

    I have really been encouraged reading all the replies to your post.

    I hope you have been too

    X




  • ashakhatri
    ashakhatri Member Posts: 2
    edited June 2018

    Dear all, I have dx with IDC on right, tumor size 2 cm, ER-,PR-, Her2-, surgery is completed on 22.05.2018, surgery included therapeutic mammoplasty with SN, found SN negative and other 2 node negative,


    Plz suggest for PET scan is required?

    Now plz suggest chemotherapy plan,

    When to start chemo?

    Full breast removal is required?

    Any other suggestions

    Thanks

    Asha



  • siddhivinayak
    siddhivinayak Member Posts: 45
    edited June 2018

    hi Asha..Sad to find you here but this site is full of info and also from nice and strong women.I was diagnosed with stage 3 tnbc with 8/22 nodes possitive.

    PET scan is required or not it depends on your Doctor.If they think they will order it but the chances are low because there is not any node possitive for cancer.

    Chemo is generally done after the wound from surgery is healed properly.Chemo is necessary for tnbc patients.

    Full breast removal is not necessary ,it all depends upon the location of tumour.I was provided with lumpectomy+chemo+ Radiation.

    I am from INDIA.Here doctors do what is good for patient and i am having treatment from PGIMER chandigarh.


  • vl22
    vl22 Member Posts: 471
    edited June 2018

    asha - sorry you are here. My cancer center does not do any scans for early stage breast cancer, even if it is triple negative. You will get chemo - it is usually started within 60 days of surgery.

    As sidd says, it is not necessary to get a masectomy - does not change your prognosis.

    Very happy they found your cancer early. Good luck and come here for support!


  • ashakhatri
    ashakhatri Member Posts: 2
    edited June 2018

    Thank you for your suggestion, it provide strength to me.

    Doctor advised to take follow chemo for me

    a. AC - biweekly - 4 cycle

    b. Followed by - Paclitaxel 12 cycle

    I am afraid of total 16 chemo cycle.

    My oncologist asking me to start immediately but now I have completed only 2 week of surgery.

    Surgeon is suggesting to Start chemo between 4 week to 6 week after surgery.

    I am confused now.

    As it is TNBC should chemo is required to Start immediately??

    Or should I go to other oncologist for second opinion?

    Thanks



  • moth
    moth Member Posts: 3,293
    edited June 2018

    There was some research about this & it seems starting faster is better:
    http://www.breastcancer.org/research-news/20140220...

    I think it also depends how long you waited for surgery post diagnosis.

  • rolynla17
    rolynla17 Member Posts: 2
    edited June 2018

    I was diagnosed with hormone positive in one breast and triple-negative in the other at the same time in 2013. This Friday June 29th I go for my 5-year mammogram. So far, so good!! You can and will survive TN breast cancer!!!

  • trishyla
    trishyla Member Posts: 698
    edited June 2018

    Thank you for posting. Rolynla17. As you can see from my stats. I have a very similar diagnosis. It's heartening to read how well you're doing. Gives me hope.

    Trish

  • AngelNicole81
    AngelNicole81 Member Posts: 3
    edited July 2018

    I am an 11 year survivor of TNBC. I was 26 when I was diagnosed back in 2007. I've had no recurrences. But I must admit, i still feel scared at times especially when i hear of someone relapsing after having had been in remission for 20 years.

  • yellowdoglady
    yellowdoglady Member Posts: 52
    edited September 2018

    AngelNicole,

    There is no such thing as relapsing or remission after 20 years with TNBC. Or even 10 years. Understand the beast. It is intent to kill quickly. If it wants to kill us it will usually do so inside 5 years. Most recurrences occur within 1.5 years. The rest typically within 3 years. After 5 years we can exhale. So TNBC is unlike hormone positive breast cancers in that if you die, it will be sooner rather than later. Why getting effective treatment is key. But unlike hormone positive cancers, we do not have a large window of uncertainty that can span 20 years. If we are alive and well after 7 years we have dodged the bullet by two years and need only be watchful in the future. And yes, there are so many of us alive and well now, and you are one. I hate the term remission myself unless someone has active cancer that has gone dormant. Being well can mean cancer free for life. That is different and better.


  • sunnyspot
    sunnyspot Member Posts: 6
    edited September 2018

    I am here to post that I just passed my 5 year mark from TN breast cancer and there IS HOPE!!!! Follow what your dr recommends and know that there are many survivors out there and one day you will join our ranks. It is a horrible, scary, tough thing to deal with and I can sympathize but I am still here and so are many others and hopefully that can be a comfort!!! ALL THE BEST!! XXX OOO

  • trishyla
    trishyla Member Posts: 698
    edited September 2018

    Congratulations, sunnyspot! I've just hit two years since diagnosis. Almost halfway there.

    Best wishes for many healthy, happy years.

    Trish

  • sunnyspot
    sunnyspot Member Posts: 6
    edited September 2018

    Thank you Trish!!!! I can't believe it's been 5 yrs. When I was going through it it was all consuming and I couldn't imagine a life where breast cancer wasn't the focal point. But here I am with days that I don't even give it a thought- yeah, that's the truth!!! Good luck to all!!! XXX OOO

  • missrachel1
    missrachel1 Member Posts: 3
    edited October 2018

    Hello,

    I'm just checking in. I had my mammo and ultrasound today. 7 1/2 years out. Just wanted to post because there are many women with triple negative and have moved on with their lives and no longer visit these forums. I know how important it is to hear survival stories and wanted to share my update.

    You can survive Triple Negative!!!

  • emilyisme
    emilyisme Member Posts: 21
    edited November 2018

    This has been my favorite thread so far. I can read your fears, but your triumphs supersede all of that!! Congrats to you all.

    I was just diagnosed 2 days ago. My Path came back as ER- weak positive, PR negative, HER2 negative, so my doctor says it will be treated as a triple negative. I have a 4.5cm lymph node (all others are fine), but no cancer is showing up in the mammogram (hence the MRI scheduled for Tuesday). I have an MRI and Oncology visit scheduled Tues and Wed. I will be so glad when I learn the grade, stage and treatment plan. I'm ready to tackle this and get it behind me!

    When you guys say "throw everything you have at it", what do you mean? I'm guessing a positive attitude, eating healthy and exercising, not giving up, etc???

    Thanks for all of the support! <3

  • yellowdoglady
    yellowdoglady Member Posts: 52
    edited November 2018

    Today is my 10 year Cancerversary, and I am just fine. I threw the book at it, which means I wanted as much treatment as they would allow me. Then I did my best to hold my job, feed my pets, pay my bills, and generally get through it all. We with TNBC have one really spectacular chance to kill it well and truly. Take it. Your hair will grow back. But only if you are alive. It may leave you weak as a kitten for a minute, but you can come back from that.


  • yellowdoglady
    yellowdoglady Member Posts: 52
    edited November 2018

    Today is my 10 year Cancerversary, and I am just fine. I threw the book at it, which means I wanted as much treatment as they would allow me. Then I did my best to hold my job, feed my pets, pay my bills, and generally get through it all. We with TNBC have one really spectacular chance to kill it well and truly. Take it. Your hair will grow back. But only if you are alive. It may leave you weak as a kitten for a minute, but you can come back from that.


  • ventureval
    ventureval Member Posts: 11
    edited November 2018

    Dear All,

    On April 11th, 2017 I had my tumor taken out and I am currently cancer free of triple negative breast cancer stage 2. I had a partial Mastectomy of my left breast with Reduction and Lift of my right. I had 3 lymph nodes removed. All margins cleared and lymph nodes cleared of cancer. I just had another blood test and mammogram showing clear of cancer in the breast and liver and kidneys are clear too. So, I do not have to go to my oncocologist for a year and I see my chemo dr in 3 months for another blood test on my kidneys and liver. My hair has grown back it is still very short but that is ok. I went thru the red devil chemo and I did have the side effects of blisters on my hands and feet. Then I went through the Taxol and I ended up with Nuropathy in my feet and some in my hands. Then it came back. Well in the later part of June first part of July my chemo dr wanted me to try these pills called Xeloda (prounounced Zeloda) 5 pills in the morning 5 pills at night. 14 days on 7 days off. They were supposed to cause severe Diarrhea but for me like the other chemo's it caused even worse than the other chemos severe severe constipation. I handeled the other chemos really really well. I would have my drips on a Thursday I would be off work and sick Thursday Friday, Saturday, Sunday and sometimes Monday then I would be back to work on Monday. This Xeloda hit me very hard. I was so so sick. I was so nausiated all the time. Good thing for good vomit meds. My husband happend to go to a family reunion up north and my 80 year old mother lives with me I am 61 and she helped me a lot. I lost 10 pounds int the 9 days that he was gone on this med. It was way to hard on me. It also was making my Nuropathy in my feet worse and starting to effect my hands again. So, since this was just an extra meds for me to take I spoke with my husband and told him that I just couldn't do this anymore with this particular drug. He agreed with me, so I went to my chemo Dr and I got off of it. So I am praying to the good lord, that everything that I have taken up until now. will be good enough to keep me cancer free. Right now I feel very good. The great thing is I am looking at the good thing out of the bad things such as I have been vastly over weight for a very long time. So now I have lost like 75 pounds. I'm am doing my best to keep losing. However I just had 2 back to back allergic reactions to foods, that put me on predisone (steroids) that I I am doing my best to fight the urge to eat. LOL Because it makes you or at least me so hungry. I pray all of my fellow sisters with any type of Breast Cancer is doing well. I did learn that the hardest part is to keep our faith in all of this. We have to maintain that we will get through this one day at a time. That has always been my motto. I am still thinking that. I don't look to the future. I just work on myself one day at a time and love every minute of it. I pray for everyone of you that you all have a very Merry Christmas & a very Happy New Year.

    VentureVal



  • jojobird
    jojobird Member Posts: 99
    edited November 2018

    VentureVal,

    I haven't posted much on this thread but I'm so sorry to hear of the side effects. I tried Xeloda and Taxotere for my recurrence, but they didn't work. The chemotherapies can be grueling, though....my nail beds started to bleed and the exhaustion was unbelievable.

    I am thinking of you. I had a recurrence in March and chemotherapies didn't work. I then had surgery to remove the tumor and now we're just keeping our fingers crossed. And hope/pray it doesn't come back.

    Wishing you much strength and healing in the days to come.

    Jojo

  • vl22
    vl22 Member Posts: 471
    edited November 2018

    Jojobird - I read your blog and have for some time. Your honesty, humor, fear, bravery, love - all of it just represents life and I think it is so raw. I laugh out loud and I get teary eyed.I’m not a religious person, but I send you and your family good vibes and wishes often. I think having this common bullshit to contend with creates a bond that others could never understand. Amidst all of this, it can calm me to know strangers are rooting for each other and really care.

    I hope this makes sense. Thanks fo sharing

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited December 2018

    I just had my post chemo imaging done, and it does not show live cancer! Of course, pathology gets the final word but I am thrilled as I had two 3+ cm tumors and they have disappeared.

    I threw the book at it too. I did the chemo plus kept to an exercise program, a ketogenic/mostly vegetarian diet, fasting-mimicking before the chemos, and a raft of daily supplements. I also did some complimentary therapies, like vitamin IVs, and hyperbaric oxygen. Early on, I had a consult with The Block Center in Chicago, an integrative cancer center, and got a detailed plan from them that I followed. They totally emphasized exercise and pushing your heart to be in fitness mode, not lie around mode. Dr Block has a book called Life Over Cancer that has a lot of info.

    I just wanted to feel like I did it all, so in the event that there was a bad outcome I would not reproach myself.

    The "bad news" about TNBC we all know.... the paucity of followups, and the virulence of the cancer. The good news is that it can respond really well to chemo because of the high grade.

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