Triple negative breast cancer - 32 years old! Please help

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Vasotz
Vasotz Member Posts: 9
edited June 2018 in Triple-Negative Breast Cancer

Two months ago I found a lump on my breast after self exam. I had an Ultrasound which told me that it was a lump with definite boundaries and some calcifications. I had an FNA which said it was either a fibroadenoma or a papilloma with no atypical cells. My doctor insisted on taking it out because I cannot live with something like that. So we did the lumpectomy and two days ago I got the results : I have cancer, I do not have any family history , I am 32 years old and until now in perfect health.

My results are : Invasive ductal adenocarcinoma with no clear margins ( grade II - III ) .... They say it is triple negative.... ER 0%, PR 0% , Ki67 >= 50% CerbB2/ Her2= negative ( score 0) . My doctor said we were lucky we found it. He says I am lucky that we found it early ( I do not know if it is true that we found it early). he said I will need chemotherapy and another surgery and radiation maybe.

I have so many questions. I do not know why this is happening to me. I need help psychologically first. Apart from that I have so many question can someone please reply?

  1. Is Triple negative the worst cancer? Is it true that it does not respond well to treatment. I am afraid I might die
  2. How do I know what is my tumor stage?
  3. I am afraid that it might have reached the lymph nodes, which I do not know ....can this be evolving so rapidly?
  4. Is there a chance of full recovery? Do you ever get rid of cancer? Has anyone survived for many many many years ? Reaching old age?
  5. If I do a double mastectomy do I have less chances of recurrence and getting rid of the cancer? Is the breast recurrence score reliable?
  6. Should I do chemo, then surgery and then radiation or in another order?
  7. How long will it take until I am back to normal ... finished with all therapy?

Many questions , I am very worried.... Please help

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  • smc123
    smc123 Member Posts: 71
    edited April 2018

    Vasotz, I am so sorry you find yourself here...I am triple negative as well. I am not really able to answer all of your questions...but, I don't know if you have met with a medical oncologist yet because once I did I felt so much better. Also, I got a second opinion for my treatment plan. Both treatment plans matched so I chose the MO that I felt most comfortable. My treatment plan was chemo, surgery, radiation, then final surgery for expander replacements...it was a full year of treatment. This whole process can be very overwhelming...so what worked for me was...to take things one day at a time. Take care of yourself

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  • Nifer
    Nifer Member Posts: 31
    edited April 2018

    I'm so sorry you have to be here. You are not alone. Yes, you can survive this! I know how you are feeling. I was diagnosed last year at the age of 35. I was also triple negative. Tnbc can be very scary if you read whats online. But try not to do that. Most of it is out of date. Tnbc actually tends to respond better to chemo than other breast cancers. I was stage 2a my tumor was 2.3 cm but didn't reach my lymph nodes. After chemo I chose to have a double mastectomy. I could have chose a lumpectomy with radiation instead. At the time of my mastectomy the tumor was completely destroyed from the chemo. They found no cancer at the time of surgery. There are many success stories on here. Read the post on the You can survive tnbc section. I have also met many survivors. Most of them are out living life not posting on here. I was diagnosed at the end of June and I have my last surgery scheduled for next week. It has been a total of 10 months for me. I know how overwhelming and scary this is for you. You will feel much better after you treatment starts.

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  • blamoms
    blamoms Member Posts: 113
    edited April 2018

    I was diagnosed 2 years ago with 2b triple negative negative. I had a lumpectomy first followed by chemo then radiation. I was finished all treatments in 7 months and 2 months off before I went back to work. It was scary but it is doable. Trust in your oncologist. Chemo was the hardest part for me. I only vomited once but nauseous all the time, tired. Radiation was a walk in the part. I did the mistake of googling it but this forum was a huge help. It always helps to talk to someone going through it.


    I go every year for a checkup. I try not to think of it coming back too much. You learn to let go of the little stuff. I don't have any history of breast cancer. Hope this helps

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  • Vasotz
    Vasotz Member Posts: 9
    edited September 2018

    I have my first appointment with the first oncologist today.... I am very worried that we did not get in time. I am afraid that I did not catch it early ... my boundaries after lumpectomy were not clear since we had the operation assuming it was a fibroadenoma or papilloma... I do not know if my nodes are involved and I am scared. My oncologist I assume will give me tests to see what is going on with the cancer. I hope that everything is going to be ok. I will get back to you after my appointment . I hope to survive this. I will fight it , win the batleand I will be back to my life and my dreams. I can do this and so can all of you! Thank you for all the replies. And another question... Do you think about the future ... are you afraid that it will come back in the future in this form or another?

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  • VL22
    VL22 Member Posts: 851
    edited April 2018

    Vasotz - I am so sorry you are here and have to deal with this. I know everyone says it, but you are truly at the toughest time emotionally. It is terrifying and sad and unfair. Freak out, rage, ask a million questions. But don’t blame yourself. Also, understand that the process of diagnosis is rarely smooth for anyone.

    I didn’t have clear margins either after my lumpectomy. Reexcision did the job.

    Try to have someone at these Dr appointments with you - it is very hard to take in everything when you are in shock- yes, I believe we are in shock for the first few weeks.

    Come here for support and advice, reach out to doctors with questions and be very careful googling about TNBC - a lot of “the sky is falling” information that will do nothing to help you.

    And yes, I think about the future. I have fears. But you will see - once you have a plan in place you will settle and continue to live your life

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  • TraceyLou
    TraceyLou Member Posts: 16
    edited April 2018

    Vasotz - how did your appointment go? did the MO answer all of your questions?

    We all understand and can appreciate your fears. the unknown is very scary. I agree with the other ladies that you should continue to come here for support. I found it very helpful when I was diagnosed. I actually started with chemo also but that took a little spin for me and I ended up having surgery and radiation, which I just finished. I have started taking Xeloda, which is a chemo pill and will be on that for 6 months. I think regardless of whether you do surgery or chemo first, it's a long road but you CAN do it and you WILL do it. You'd be amazed how strong you are and where you draw strength from.

    Lots of hugs being sent your way..

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  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 190
    edited April 2018

    Vasotz, I am so sorry that you are here but this is amazing community and you are never alone, thats how I feel when I read through these messages.

    Its over whelming the weeks before the chemo starts, you go through so many tests and I for one felt I was going through all of it mechanically, my mind had still not grasped that it was really happenning. Talking to close friends, communicating helped it feel real.

    I was given a choice to either go for surgery on the 5th or start chemo on 3rd. I chose to go neoadjuvant as triple neg responds to chemo well.

    Do not read online about tnbc. Its not all vetted and you will read something negative to fixate on.

    Rather come over here, read the threads on tnbc survivors, they make me feel better, hopeful. The first day I felt normal after 3rdday of chemo I cried. I was so over whelmed. I did not think I would feel normal ever again or be happy and do all the things we take so for granted.

    Also, great tip from VL 22, take someone with you or record your convo with the doc. I spaced out multiple times on my first visit to the Onco.

    Once you have a plan with your treatment, have faith in it. Dont doubt it. Lots of hugs to you.


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  • Vasotz
    Vasotz Member Posts: 9
    edited April 2018

    Hello... to all of you! I am back! I have completed all my tests today and waiting for the results tomorrow. ( MRI, bone scan, C/T etc). I am a bit worried but I am handling it. If everything goes as planned l will begin my first chemotherapy on Wednesday. I won't hide it. I am worried and I am scared and I am sad that I will loose my hair, but it will grow back better. I hope my body responds well to chemo. I used to run 10k, go to zumba classes, aerobics etc and I eat very well , I hope it helps with how my body handles the side effects. I also preserved ovarian tissue with a laparoscopy, and the wounds are now healing. I don't have any children and this was the fastest solution for me , in order to start chemo right away. I hope chemo does not change many things in my life. I am also very worried about my personal life , sex , intimacy and how Chemo will affect those. But I just want to live and be able to do everything for many many years to come. I can win this fight and I really want to, and I want to thank you all for the support. The hardest thing about cancer is handling my emotions , the ups and downs , the ugly thoughts. Having someone to talk to is important. The psychological rollercoaster is difficult ... I hope and pray that Everything will be ok for all of us!

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  • KSteve
    KSteve Member Posts: 486
    edited April 2018

    Vasotz - There's a very active thread on this site called "Calling all TNs". It's a great resource for triple negative sisters and there is lots of great support and women in all different stages (from newly diagnosed to those that are many years out, like myself). You've got this! Yes, triple negative is aggressive, but it also responds very well to chemo because of that. All of your concerns are valid, we all had them. It just becomes a ""new normal" for a while. You will feel more in control when you have your complete picture and begin treatments. Hugs to you and don't hesitate to reach out.

    Kathy

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  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 190
    edited April 2018

    Hi Vasotz,

    Good to know that you have a plan and are getting into fight mode. I feel you in regards to the other tests. I hope your first chemo went okay. You will start to feel better as the drugs leave your system. Drink lots of water. Keep a diary of SEs. Speak to your MO or Onco nurses if you have any questions. And come over here to this wonderful helpful community.

    There is a group for people who have started chemo in April. Its pretty helpful in regards to what others who have started around the same time are going through.

    Lots of hugs to you. We can do this

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  • KittiesWarriors
    KittiesWarriors Member Posts: 3
    edited May 2018


    • Is Triple negative the worst cancer? Is it true that it does not respond well to treatment. I am afraid I might die
      • (that is not true, it does respond to treatment and basically from what my onco told me after you are five years clear if it hasn't come back they basically say it's not coming back)
    • How do I know what is my tumor stage
      • (your onco will tell you that once they complete more tests)
    • I am afraid that it might have reached the lymph nodes, which I do not know ....can this be evolving so rapidly?
      • (from what i have been told it takes time to evolve, depending on the grade it could be anywhere from 30-90 days for any changes to happen)
    • Is there a chance of full recovery? Do you ever get rid of cancer? Has anyone survived for many many many years ? Reaching old age?
      • (yes, there is always a chance to cure and yes people go on to live normal and full lives after treatment)
    • If I do a double mastectomy do I have less chances of recurrence and getting rid of the cancer? Is the breast recurrence score reliable?
      • (slightly, from what my team has told me the percentage is not much different compared to a lumpectomy with radiation. It's really a mindset thing for alot of people. I opted for mastectomy because i wanted to know i did everything i could to get rid of it.)
    • Should I do chemo, then surgery and then radiation or in another order?
      • (listen to your medical team. I did chemo first and then surgery)
    • How long will it take until I am back to normal ... finished with all therapy?
      • (everyone is different as chemo and surgery affects everyone differently, i'm a month out of chemo and feel relatively normal)

    God Bless You and I hope everything is going okay for you.

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2018

    Thank you so much for your kind words and reassurance, KittiesWarriors! And welcome to the community!

    The Mods

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  • Vasotz
    Vasotz Member Posts: 9
    edited May 2018

    Thank you very much for your reply ... you give me courage and make me think for a beautiful futute. I am 10 days post my first chemo (AC) ... I am waiting to lose my hair ... they told me that it happens after the 14th day. So i decide to shave them on Monday and put on a wig ( they say it kind of permanent ) ... they put it on with a silicone glue and it stays of for a month or so and I can style it wash it normally etc., It is natural hair close to my color and style and I really do nor want to see my hair fall ... so that is why I am shaving it before I see them fall.

    My side effects so far from chemo are to the minimum ... the worst thing is fatigue ... I used to run , do aerobics , zumba , work , have fun party and now some days are bad. I am tired , then I am ok , I sometimes don't sleep well. Out of the 10 days only 2 were that bad. Some days it is like I am normal , like everything is as it was. I hope it gets better though. I assume it is because of the white blood cells. I had my first blood test and my white cells were 2.0! It has to go up in the next 4 days in order to do my next chemo. I want to get it done and move to the next one until I am over this.

    I am very happy that I have lots of friends and family that care for me and they are around and they keep me busy with many things so I don't get bored or think about cancer all the time! I try to have my psychology boosted and have only positive thoughts and think about the future and live today to the fullest.

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  • cdelzafiro
    cdelzafiro Member Posts: 1
    edited May 2018

    Hey Vasotz! 

    I had the same diagnosis a year ago, I am also in my 30s.

    Typical chemo for TNBC is 12 x Taxol weekly and 4x AC every 2 weeks. This is a golden standard. Sometimes they start with taxol. 

    If you have a BRCA1 mutation, they add carboplatin to Taxol. Did you check if you have the mutation? I think, it is mandatory, you have a TNBC and you are young! If you do have it, ask for carboplatin or a PARP inhibitor option. 

    Did they see something on your MRI? That is important, if there is something, they can monitor if chemo worked. 

    In general, it is doable! I was extremely healthy and active before the dx. During chemo I had no energy, gained weight and was sure my life was over. And you know, life comes back, I can hike now, I go swimming, cycling, stay up all night with friends, go clubbing, work 14 hours per day lol. I wish I could tell it to my past self.. Just take your time and don't get depressed. PM or write me if you have questions!

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  • Vasotz
    Vasotz Member Posts: 9
    edited May 2018

    Hello everyone !

    I had 2 AC treatments already and The update is this :

    1. First of all , thank you to each and every one of you that gave me all these tips , they helped a lot!
    2. I only experienced mild side effects , a bit of fatigue for a few days, but after the Neulasta I had serious headache and neck pain, it only lasted a couple of days. My white blood count was down but I survived
    3. I saved my hair 3 days before they started to shed and I wore a permanent wig which stays on my head with a glue, it is the exactly same color and style as my hair and no one can tell that I am on chemo.
    4. I started Arvekap for ovarian suppression ( an equivalent to Zoladex) , but I haven't got any hot flashes yet etc.
    5. Also I got my BRCA tests yesterday I am negative for all the genes. I don't know if it is good news or not but it is knowledge!

    My last MRI showed that I have a remaining 1cm tumor in, the MRI showed no pathologic or enlarged lymph nodes. I had another test where they tattooed 3 lymph nodes but they told me that it is as a precaution , because they will need to check them when I do surgery. I really hope it has not reach the lymph nodes. Do you have an MRI after the treatment to see how the chemo affected the tumor?

    I have had some pinches and pain where my tumor is and sometimes in my arm as well. Has anyone experienced this ? Is the chemo working or is it getting bigger?

    I have my third AC on Tuesday I hope it will be as easy as the last two , thought they tell me the fatigue is added as you go from one to the other. I hope it doesn't. I am a bit worried about the Taxol treatment because I read that the most serious side effect is peripheral neuropathy. Did anyone have it and how did you manage? Is there anything I can do.

    I am thinking about the surgery and trying to decide on lumpectomy vs mastectomy. It is very troubling. I wish there was a direct answer. I wish I could do a double mastectomy with immediate reconstruction with implants , but I don't know yet if I am eligible.

    I am going with the flow , try to be busy and have fun and be myself and so far it is working apart from a few days after the infusions everything seems to be in a new normal. I will win the battle , so will all of us and many years after this we will remember this as a parenthesis in our lives that made us stronger!

    Thank you all for the support so far you are great strong women who diserve to have it all . All our dreams will come true the only thing we have to do is believe in ourselves. Let kick this cancers butt!

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  • JCA1984
    JCA1984 Member Posts: 4
    edited June 2018

    Hi Vasotz,

    My wife just completed her 1st of 12 Taxol sessions after doing 4 sessions of AC

    I am not sure if this is standard practice or not but our Cancer Center has these ice mittens and booties to keep your hands ICED during Taxol. They say this helps to reduce the chances of developing neuropathy.




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