30 yrs old with triple negative IDC

LillieRose

just got the call.. Triple negative... I am freaking out! Not only and I 30.. I have a 4 month old baby... I am so scared! My docs at Dana Faber are recomending chemo first? Thoughts? Advice? Can I beat this?

Moderators

(((((((((hugs)))))))) Take a deep breath and know that you are not alone. When and if you feel ready, here is some information on triple negative: Triple Negative.

We're all here for you. Vent any time you need.

CherryHill

Hey You can beat it. Odds are on your side. Triple negative is less scary than its reputation

I was diagnosed when my youngest was 9 months old, the oldest just turned two year-old. I know how you feel. Hugs.

LillieRose

thank you so much cherryhill! May I ask your course of treatment?

They are saying chemo first, surely, radiation... I am nervous about leaving it there

SA8PG

LillieRose I am sorry you are here but know you will have a great support team. Don't google TN it is mostly negative. Search the truth and remain positive. One day at a time one step at a time. I was diagnosed when pregnant back in August. I had chemo first. Sending you lots of prayers, hugs & love. 😊

G

breastcancerhusband

Hi Lillierose

So sorry to hear of your diagnosis. My wife was diagnosed in Oct 2014 with TNBC while 15 weeks pregnant.

You can beat this. Despite what you might read online and in the media, this isn't the death sentence that sensational headlines would have you believe. The FACT is that the majority of women will make a full recovery from TNBC. Indeed with your age TNBC isn't actually the worst one to have. And i use the word "worst" although nowadays most women survive any sub-type of breast cancer.

As said above stay clear of Google, stick to the facts and fight this fecker all the way. The woean and a few guys on this site have been amazing in supporting me, and I'm just a husband, I'm not actually the one taking the treatment. The same wonderful group of people will also support you.

Stay strong and you'll come out the otherside.

Hugs and prayers

 

Beachbum1023

Hi breastcancerhusband, I am pretty sure that you are way more than just a husband. While being treated for breast cancer is a game changer, I think it could be far worse to be the loving husband watching and waiting. Since everyone in treatment knows exactly how it feels, I know how hard it is to describe the feeling. But we all know that actions speak louder than words, and we all have a lot of living and loving left to do. I am sending a huge basket of hugs to be shared as needed with your lovely wife. And the hug basket is bottomless!

Take Care. Cheryl

LillieRose

thank you all for your support. I am trying to stay postive my I keep worrying it's spreading through my body... Like my back hurts... Bone cancer... I'm having cramps and bleeding... Ovarian cancer.... Headache... Brain cancer.... It's like I can't turn the fear off....

I'm so afraid to die and leave my baby girl... I'm afraid she wknt know who I am since she's so young... Cancer sucks. It's terrifying and awful and I want it out if my body...which is why I'm nervous about chemo first... Just leaving it there to grow and spread? It seems wrong...

Thanks for letting me vent

YoungTurkNYC

LillieRose,

All of your fears are normal.  I believe all of us felt the same way and had all these fears, especially when we were initially diagnosed.  Once you have your treatment plan in place and once you start treatment, the fears will lessen and you will feel more in control.  I understand the fear of leaving young children behind as I have young kids as well.  All of this is normal, but the drugs are strong, and TNBC is extremely sensitive to chemo.   I do not have TNBC but know people who are still living without any recurrence over 20 years later! 

gingeel

Hi LillieRose, I just found out that I too am triple neg. I'm 36, and originally thought it was ER+. I just went in to meet with the RO this morning, and he showed me my Oncotype results and he said because it's triple neg my score is like a 70! I've already had a lumpectomy and SNB, but I'm pretty scared too. I knew there was a possibility of chemo, but now that it's a definite, it's frightening. I'll find out what sort of treatment I will need on the 17th. I had plans to go to Mexico in June, I wonder if I can still go? I know, it's so silly, but these are the stupid thoughts that are going through my mind. I know how you feel. Everything is happening so very fast.

CAmomof4

Hi LillieRose - So sorry you're having to deal with this at such a young age,  and with a new little one to care for!  Treatment goes by quickly,  and you'll be through the other side  before you know it. 

It is typical with triple negative to do chemo first.  I believe this is so that the effectiveness of the chemo can be measured. The cancer isn't still growing inside you during treatment! 

I am at the end of chemo,  only one more to go!  My tumor was  big enough that I can tell what is going on with it to some extent.  I've experienced the softening and shrinkage over 12 weeks of Taxol (+Carboplatin every 3 weeks).  Recently,  when it seemed like the switch to A/C was causing growth,  we did a scan and found out that the tumor is dead!  Apparently,  it was just swelling from die off. 

I was actually arguing with my doctor over whether to go right to surgery if it really was growing, or to try another chemo first,  so we could know if it worked or not.  I was afraid if we took the tumor out and he wanted to do more chemo after surgery,  I'd have no way to know if it killed anything.  

We all go into this shocked that it happened to us,  and afraid of the treatment and outcomes.  You're in the right place for real information,  and getting it straight from the people who have been there. I pray a goes well for you. 

Mel

LillieRose

Hi CAmomof4,

I'm scared that whatever chemo they start me on won't work and my cancer wll spread. From what I've read if triple - cancer spreads you are shit of luck treatment wise... Part of me feels like they should just get it out but they said they want to see the response to the chemo....

How fast could it move through my body? I have stage 2 IDC grade 3. Could the chemo bit work and in 12 weeks when I go to survey be a stage 4? That is my biggest fear.... I'm scared to do the wrong thing.

ElaineTherese

LillieRose,

I'm not triple negative, but my cancer was grade 3, too. I originally wanted surgery first, but am glad I did chemo first. Surgery is a localized treatment -- it only treats the cancer in your breast. Chemo treats your entire system. It can shrink the tumor to the point where it disappears and you could get pathological complete response (PCR), which is associated with a better prognosis. It also treats the cancer cells that are traveling through your bloodstream, looking for a new home. My chemo went well, and it destroyed all of the active cancer in my breast and lymph nodes. I hope you respond well to treatment and have the chance to be an awesome Mom to your little one.

CAmomof4

LillieRose - Sorry for not responding sooner, I just saw the reply. I know it's scary. And you're right in that cancer that has metastasized in general is harder to fight, triple negative especially. However, I don't think it spreads quite that fast, and the neo-adjuvant chemotherapy is VERY common. They wouldn't do that way it if it were likely to hurt you. I have read of some people who had progression while on chemotherapy, but my experience was that the chemo shrunk my tumor and killed it. I personally feel better knowing that, than taking my chances without having the tumor as a guide. But people have received successful treatment with both methods, and you have to do what will make you most comfortable. You being a basket case through treatment won't promote healing, so if getting chemo first will make you too nervous, then arrange to have the surgery first. Do you know if any nodes are involved? For me, that could make a difference. If nodes are involved, I'd be more concerned about making sure that the chemo is working, so would want chemo first. But again, people have been successfully treated both ways! Hope this helps...

Mel

placid44

Lillie,

I was triple negative stage 2. I had chemo first because for TNBC they want to: 1) get going right away on killing any cancer cells that may already be circulating in your body (waiting until after surgery theoretically would give it more time to take root somewhere) 2) shrink the tumor for surgery later and 3) see how then tumor responds to the chemo...if it doesn'trespond, then they can no switch chemos. It was scary to worry, but think I chemo first is better.

tanyah

Hi Lillie...thought I would add my experience as well to hopefully make you feel a little better.  I was 37 when diagnosed this past Fall and had surgery first, then chemo.  My twin sister was diagnosed in Jan 2015 while pregnant.  They induced labour and she had her son 5 weeks early.  She started chemo that week and will have surgery later.  We both have the exact same diagnosis...triple negative with lymph node involvement.  The only difference in treatment is that she is having chemo first, then surgery and I did the other way around.  Of course, this has caused me to really look at the pros and cons of the order of things.  On the one hand, I was pleased to have the tumour out of me ASAP and had more accurate staging/pathology etc because I had surgery first.  However, I have no idea how effective my chemo was since I had no tumour to monitor.  My sister has had to mentally deal with the fact that her tumour is still there.  However, very early on her oncologist was able to feel the tumour shrinking.  He is now no longer able to feel her tumour at all and she is not even half way through chemo.  He was able to tell her that based on her response to chemo, she has a low change of recurrence.  Long story short, there are definitely pros and cons, emotionally, to each treatment plan.  Hope this helps some.  Please know that once a plan is in place and you settle in to treatment, it all becomes much less overwhelming.     

Alibeths

I'm 37 and was also tn. This is my 2nd time. Honestly, I would flow your drs!!!!!! You got this.

beattnbc2014

Yes,you can beat this . I was diagnosed last year at the age of 34 and I too had the same worry and concerns. I had to take 3 cycles of chemotherapy first and then a lumpectomy plus lymph node disection.My pathological reports showed that the tumor was 2.5×1.4×1.5 and 1 node was positive. my medical oncologist said that I have to take 3 more cycles of chemotherapy which I did.I have also taken 30 sessions of 3dcrt.

Chemo will make you feel very sick but you will feel better after 10 or 12 days.Make sure you take a very healthy diet and keep yourself adequately  hydrated. 

I had vomiting and loose motion and I used to go to the hospital for supportive care.This is definitely doable and l would tell you one thing. ..be positive and have 101%faith that your treatment will work.

One more thing,if you are starting the chemo first make sure you visit a good wig shop and give measurements if you are planning to use wigs.

Please keep us uoxated

Praying for you. XOXO.

LillieRose

Hi all,

Thank you so much for your responses! I feel so supported by all if you!

I went with chemo first... Started last week! Plan is Taxol for 12 weeks then surgery then more chemo and rads. First taxol.. Went bad! Severe allergic reaction... Lucky yesterday went great and I'm actually feeling really good! Slight headache but no other side effects so far! I hear the Taxol goes a bit easier then the rest so I'm glad we are starting off. I am in a clinical trial testing the weekly Taxol and Cisplatin. I got Taxol first. I'm comfortable with me choice... But of course I have doubts.

I'm just nervous with chemo first because they clinically stage you... So I'm afraid I'm getting all this hope to beat this and then when I get to surgery I will be staged worse... I'm sure it's normal to always worry about spreading but I hate it. My doctors said they have no reason to think it's anywhere else since my node biopsy came back negative and they look clear... But I am still nervous since I have not had an MRI or PET. My doctors say we don't go looking for more cancer and since I'm doing chemo first it wouldn't change my treatment plan... I understand the reasoning (false positives) but I'm just so scared all the time... It's like everyone says Breast Cancer is curable but if it's so curable why are people dying everyday? Anyone I've ever know who got cancer young died... I'm just terrified of the "what ifs"

Thanks for letting me vent and all your support! I'm hopeful but scared!

Alibeths

you haven't had an MRI yet???

LillieRose

nope they said no need for one...

JustKeepFighting

Hey girl! I was diagnosed with stage 2, grade 3, triple negative breast cancer September 9, 2014 at age 29.

Two weeks later I had a bilateral mastectomy and two weeks after that, I started chemo. I thought my head was going to fall off because it was all happening SO FAST!!!!

I ended chemo (4 a/c, 4 taxol) on February 5th of this year and am one week away from my last radiation!!!

fight the good fight and never give up!!

Newgirls

LilillieRose. How are you doing? What did you decide for treatment? I was also treated at DF and have been going there for years due to family history and multiple biopsies before my actual diagnosis. It's a tough disease but you are ingood hands there -the best, best wishes

Sjacobs146

LillieRose, one thing to hang on to is that you are being treated at one of the best Cancer hospitals in the world. wealthy people from other countries travel to Dana Farber for treatment. Not only have they treated cancers like yours thousands of times, you also have access to the very latest treatments and trials. The chemo treats your whole body, and it's a really good sign that they didn't find anything in your lymph nodes. Cancer spreads through the lymphatic system, so they'd see it there first. Try not to obsess and focus on getting through chemo. I'm keeping you in my prayers.

CiaraNicole

Hello I'm Ciara

Just had surgery April 13, 2015. Partial. Stage 1 tn. No lymph node. Tested 5 all clear. I have to do chemo for 12 weeks and the another round every three weeks after that for 3 months. I don't want too. I'm afraid not to do chemo. I'm praying. But angry. I'm. 33 years old and a mother of 3.

Moderators

Hi Ciara-

We just wanted to welcome you to our community here at BCO. We're sorry for the circumstances that bring you here, but we're so glad you've joined us, and hope you find the support you need!

We hope you're healing well from your surgery, and wish you luck on your chemo! Please keep posting, and let us know how you're doing!

The Mods

Shellbeach7

Hello everyone. . .

I had my surgery April 13 also. Stage 1, Grade 3, no lymph node involvement. I get my port a cath this Friday and I start chemo May 28 and I have to do 16 weeks, followed by radiation, but have not met with radiology oncologist yet, so don't know how much. I'm scared of the chemo & the unknown, because I'm a self employed single mom, but I'm tryingto stay focused and strong. My friend just had a mastectomy and will start chemo in about 5 weeks, she's stage 3 and it was in her lymph nodes. She has an incredible attitude and I am so very proud of her. Cancer truly is scary, and there is no way to explain all the feelings, fears and emotions that go through your mind, but try to stay focused and strong, do not let it control or break your spirit, focus on chemo killing the cancer and healing you. Sending everyone positive energy and great big hugs.