Scared

tanya01 · May 2011

I have triple negative breast cancer. I also carry the breast Cancer Gene. I had my double mastectomy on April 25^th. I start my first Chemo treatment on June 1^st. I am freaking out. I am just 29.. I really cant find a lot on stage two Invasive triple negative cancer online. I feel like I am fighting a battle that cant be won. They already took both my breast and are telling me at some point I will need to have a hysterectomy. I am stage two grade three. Please tell me there is hope out there that I can beat this and live a normal life. I keep reading about how the treatments are not great for my kind of cancer and it has a high rate of coming back. I was told I had clean margins and they go it all. I had NO lymph nodes affected. I would appreciate any incite you can give. Thank you.

Anonymous · May 2011

Tanya, I can't give you alot of specific information about what you are asking-my situation is very different. what I can say is that you are going after this proactively and that's the best thing to do. It's scary, no matter what the situation-and you are so young. Having hope is really important for your recovery, so I'm sending you hope and hoping you can maintain some of your own. Pat

tanya01 · May 2011

Thanks Pat. I am doing my very best... Just very very scared. Wish i knew someone that went through this and could help me understand a little more of what I can expect.

37antiques · May 2011

Hello Tanya,

Take a deep breath. I know this is scary, and yes, there is a lot of information on triple negative that doesn't sound good. However, triple negative tends to respond BETTER to chemo than any other kind. And you are treating this very aggressively, so you are doing all you can. Plus the fact that you had no node involvement is very good. Yes, it is aggressive, so it grew fast and you caught it early. Try the link below, it is from this site, where you will probably find the most reliable information.

http://www.breastcancer.org/symptoms/diagnosis/trip_neg/

Try to breathe easy, you have done the hard part and have made a very positive start to your treatment, and now you have all of the girls here holding your hand while you go through it.

((Hugs))

DebRox · May 2011

Tanya01: one of the first women I met at a support group was a triple negative woman who had cancer 20 years ago. She is now in her late 40s. She is the picture of health. Quite an inspiration.

tanya01 · May 2011

Thank you all so much for the info. I will take a look at the link. I am trying not to go crazy.. but i am stuck at home all day. I am off work for the next six months. I still can not drive do to the lack or arm range. I still cant feel my armpits. I am really hoping the surgery was the worst part of all of this...

WOW 20 years ago.. Thats amazing... that is a great insporation!!! I hope to follow her inspiration!!

Suze35 · May 2011

Tanya - I'm always hesitant to post for the newly diagnosed, because my story can be frickin' scary! But here is the good news - I'm rare! Most TNs do very well with chemo, and with your stage and node status, you have a great chance of never seeing this crap again. One of the downsides of coming to a message board like this is you meet women who are looking for support - the newly diagnosed, and those with recurrences. What you don't see are the vast majority - those who have been treated and are living their lives, with no recurrence. And on a positive note, with TN once you hit 3 years, your chances of recurrence drops dramatically.

And even with my scary story, I'm still here, fighting away - and plan to be as long as possible. You can do this, and you CAN beat this.

Hugs.

bak94 · May 2011

Hi Tanya, I am a stage 2b triple negative survivor of 8 plus years. I had grade 3, in one or two nodes, I think micro in one node. I had lumptectomy and rads and did not get genetic testing at that time. Now, I was diagnosed with a new primary in my opposite breast. I wish I would have done what you did and have a bmx. I think you have done great in going for aggressive treatment, and there are long term survivors. I am brca 1 positive. My first diagnoses I was 36, a little older than you, but you can do this! Chemo was doable the first time, and I am doing it again and seem to be just fine. WHat you have done has drasticly changed your chance of local recurrance or a new primary. I don't know if you have children or want children in the future, but you might want to talk to someone about what you can do, preserve some eggs. All of this is scary, but for some reason, it gets quite not as scary once you are on chemo. Join us on the may or june chemo threads and you will get great support and find out what to expect.

tanya01 · May 2011

Thank you so much for sharing your story. Its very helpfull!! I hope i do well with chemo. I start on June 1 and i go every two weeks for the next two months and then i start a second phase of chemo after that for 4 months. I hope you do well with your next set of chemo. I am very sad to hear that you have to deal with this again. I had a great surgeon and basically she was not letting me do anything but have both my breast taken. She didnt want to take any chances. I am glad she had that mind set, otherwise i might have talked myslef out of it. I am sending you good thoughts!! Have you thought about having both breast taken now? To be honest the first two weeks suck after surgery. But i also had expanders put in as well. I am feeling prettyn good now. I am off all pain meds.. woohooo. again thanks for sharing your story and i am wishing you all the best of luck with your new chemo!

Luah · May 2011

Tanya01: I was scared beyond belief when I heard I was triple negative. Now I've learned more about it, and realize there is some silver lining - like how well it usually responds to chemo. It sucks that you are facing this at your stage of life... you may want to also introduce yourself to the "young women with cancer" thread, for some inspiration and support there as well. http://community.breastcancer.org/forum/27

angelsaboveus · May 2011

Hi Tanya,

Our profiles are very similar other than I had 5 nodes involved. I also tested positive for the brca1 gene. . I had surgery first (just on one side as at the time did not know I was brca positive)., followed with chemo & radiation... so got the full meal deal ! Just this past December I did get my ovaries and tubes taken out as a precautionary measure. I am also thinking about removing the other breast.

Chemo is a great arsenal for triple negs as it is supposed to respond well to it, so even though it's not a walk in the park it will be kicking your cancers butt !

I am now 3 years past all that now and doing great......this battle can be WON !!!

Good luck as you start chemo !

tanya01 · May 2011

Thank you so much for the info, It is good to hear that somone with my same kind of cancer is doing well. I cant seem to find alot out there. I wish you the best.

Cydz · May 2011

Hey Tanya!! Your dx is identical to mine! I am also a stage 2 TN with no nodes involved and BRCA 1+. I am now 2 years out and doing just fine. I am suprised to say that I almost don't think about it every day anymore.

In addition to a double mastectomy, I have opted to do some pretty serious life style changes, like watching my ph balance and trying to follow a vegan diet, (I was already vegetarian). There is alot more in your control than you would think.

What everyone else has said about the chemo kicking TN's butt is true! This battle CAN be won!! Good luck tomorrow with the start of chemo!!

And know there are alot of TNs out there doing just fine!!

and btw I just moved last year from Minneapolis to Phoenix!!

yellowdoglady · June 2011

Hi Tanya!

I'm Stage 2, grade 3, with 4 of 14 nodes involved. I'm also clean after 2 1/2 years, and expecting to live happily ever after. Just got married in October on Magens Beach in St. Thomas, USVI. Find something wonderful to look forward to and you will see the time pass so quickly.

Good luck to you!

livinglarge · June 2011

Tanya I know exactly how you are feeling, scared and maybe a little overwhelmed to say the least. It might seem odd but when I was first diagnosed I trusted my doctor and did absolutely no research on TN. Sounds like I stuck my head in the sand but it was a survival technique as so many good wishers wanted to show their support by always telling me about everyone in the world they knew who died from BC. That's a completely different topic.

I have found this to be a great site with very knowledgeable and supportive survivors. I wish I knew about this site a year ago. Hang in there and just breathe. You will get through this. Find humor anywhere you can as laughter does help.

It's been over a year since that horrible day when my world seemed liked it collapsed. My doctor and I have had a chuckle over my initial reaction to my diagnoses. First I informed him that he had made a mistake. I explained in great length how my 5cm tumor was just a fatty cyst. Once we got past that issue I swung the other direction and asked how long I had to live as I was sure I had only a month to live.

We (TN) are a special group but there is a lot of research being done for TN BC patients and there is a lot of encouraging studies. Once again hang in there this fear will pass (I promise). No one was more scared than I. Don't read so much and there are a lot of great stories but for some reason those stories don't get told or passed along.

ellipses · June 2011

Tanya,

I would like to second the statements that chemo is more effective for triple negative tumors than it is for hormonal positive ones. My doctor told me that at the first appointment, and now, at the halfway point, she told me that it feels softer, which means that the chemo is killing off parts of it. She described the effect like swiss cheese, with the chemo making holes in the tumor as it works on it.

ThingsChange · June 2011

Hi Tanya,

Just wondering how you are doing with your treatment...I have my first on Friday 6/17 and am scared to death. So worried about the side effects and how much this is going to change my life. I am having AC every 2 weeks for 4 treatments followed by Taxol every week for 8 weeks and then radiation. Seems like sooo much treatment for this Stage 1 early diagnosis. I was expecting radiation only but of course the Triple Neg changed the game plan. I had a lumpectomy but will consider a double mastectomy. Sometimes I feel like I am falling apart - like I am in a nightmare. Hope you are well, be strong. This is my first post but I've been reading all month and this forum really helps. Thanks to everyone for all the encouragement and tips!

Babs37 · June 2011

ThingsChange- I understand you are scared. I went through AC DD and 12 weekly Taxol from last september to january of this year. I remember going for my first AC infusion crying. So afraid of what would happen to me with SE and not knowing if I would be able to take care of my then 4 years old son. But you know what, I did just fine. I took all my meds like the doctor ordered and didn't have nausea at all. Yes there were days that I was achy and tired, most of all because of the Neupogen shots (for WBC), not from the chemo. But overall I was ok. You might be suprised on how good you will do too. Everyone is different for sure. But alot of women don't have too much SE and can continue living a somewhat "normal" life on chemo. But I know it's a long road. I started my treatments last September and yesterday was my last rads. If I can give you 1 suggestion, accept the help that family members and friends want to give you. The more you feel supported, the better you will go through it all. You can do it. Wishing you strenght, courage and calmness. (((hugs)))

ThingsChange · June 2011

Thank you Babs...your words are so encouraging...Friday is coming so quickly and I think I just need to get started. Thankfully, I have a wonderful family and support system, and my children are 24, 21 and 16 and they've been supportive as well, husband is great. So in that regard, I am truly blessed. Wishing you well and (((hugs))) back!

tanya01 · June 2011

hey!! I hope your treatment went well. I first one i was a mess. I just had my 2 one on wed, today i am a little sore and very very tired, overall it has not been as bad as i thought it would be. the best advice i can give is keep up on the meds they give you. they really help. Please let me know how you are feeling in your third day, That always seem to be the worst days for me. Also be ready to lose your hair. I had to shave mine last week, It was so hard. I cired for hours, but i was better than seeing it fall out. Hope you are doing well. Stay strong

ThingsChange · June 2011

Tanya, how are you feeling...I started on Friday and so far so good, honestly felt great, I woke very early this am feeling a little nauseous. I had aloxi iv and Emend but took a compazine this morning with 1/2 xanax as I thought I was getting anxious, making the nausea worse. Had ginger tea with lemon and went back to bed...I am feeling much better now. I am hoping I can keep this going a few more days and then be okay til treatment #2?? I also have Zofran if I need it. What works for you??

Hope you are doing well, enjoy your day, it's beautiful right now in CT...Cheryl

tanya01 · June 2011

today I am feeling great!! I normally feel good the first two days and by the third day i need to lay down most of the day. Today i am on the upside..; woohoooo. I am very lucky i have not gotten sick just very very sore. I am glad to hear you are feeling well. Keep your head up and moving forward!!

Fighter_34 · July 2011

Tanya01

You can do this and get through this. Focus on something and stay motivated. There is a wealth of knowledge on these boards. Take what applies to you and run with.

curlygirl614 · July 2011

Hi Tanya,

Just wanted to say I completely understand what you're going through. I was diagnosed in March at the mere age of 25 with TNBC, stage 1 (or 2, tumor was 2cm but no node involvement). I am also BRCA 1 positive and have known about that for a couple of years now. I, too, have been reading a lot about TNBC, especially in young women where it tends to be more aggressive, and I've really been freaking out about the future. This totally sucks and I feel resentful toward other young women my age who don't have to go through all this crap. I'm halfway through my chemo and it hasn't been terrible, but it's no walk in the park. You can definitely get through it and I'm cheering for you!

I know I'm here posting on a message board so I'm kind of a hypocrite but I have to say that reading message boards tends to cause a lot more fear than necessary. If you are ever trolling the internet feeling really terrible about your situation (which, believe me, I did a lot!) just take a break and do something else. Not everyone who posts is a typical case, and there is a lot to be said for positive thinking especially now while you're in the thick of your treatment!

Hugs.

http://youngbrca1.wordpress.com/

Annamomof2 · October 2011

Hi Tanya:

I am now 48 years old. I was first diagnosed with breast cancer at 31 and again at 36 so I totally understand how you feel. I too have the BRCAI gene. When I was first diagnosed at 31 I had a single mastectomy. Back then, there wasn't any discussion of a double mastectomy or genetic testing. I have since had the testing. I was diagnosed again at 36 and had a mastectomy of the other breast. I had a grade 3 tumour and estrogen negative. The first time around I had 1 positive node out of 5 and the 2nd time I had 0 positive nodes out of 13. Your story sounds very similar to mine. The only difference is that you had the double mastectomy at the same time. Back in 1995 I wanted to have both breasts removed at the same time but it was unheard of then. It would have saved me the heartache of having to have chemotherapy twice. I also didn't have reconstructive surgery at the time because it was almost unheard of back then. As you can see I've been cancer free 17 years from 1st diagnosis and 12 years from 2nd diagnosis so there is hope for you. Keep strong - you will get through this and you will survive! My treatments the 2nd time around were horrible. I lost all of my hair, I had constant diarahhea and I threw up after each treatment. At the time, I didn't think I could get through it, especially the 2nd time around - but I did and you will too! Good Luck!

Scared

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