I need to know if anyone has the same Dx as me? I need answers!

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tooandrea
tooandrea Member Posts: 7
edited June 2014 in Triple-Negative Breast Cancer

I am 37 years old. 1.5 cen. Stage 2 for size I'm told, but Stage 1 because it did not spread to any nodes. Lumpectomy with 5 nodes removed (7-11-08) Triple negative. No mutated genes BRCA 1 or 2. Had a MRI and no other signs of cancer. Cancer doesn't run in my family. 

The oncologist wants me to do TAC and rads. 40% chance of recurrence becoming chronic (in breast or other parts of body) without doing chemo and rads. AND 20% chance of recurrence becoming chronic with chemo and rads.

My problem is why do I feel like doing chemo and radiation would be killing myself. I feel like it is going to do more harm than good to me.

I'm getting a PET scan before agreeing to this regimen.

Please help me do what's best.

Thanks, Angel

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  • ggoff0124
    ggoff0124 Member Posts: 25
    edited October 2008

    Hi Angel. My dx was IDC, 2.6cm, grade 3 and I am HER2+++. Because I chose a lumpectomy, I am in the 3rd of 12 weeks of Taxol/herceptin (pre chemo). I'll have surgery next (they are trying to shrink it), then i have 4 rounds of A/C followed by 9 months of herceptin after that. I was also tested for the BRCA 1&2 but both came back negative. 

    I tell you all of this to tell you what my surgeon told me about chemo and me - because my tumor was over 1cm (2.6) and i am under 50 (i'm only 40) - chemo was in my future.  He said that to me at least twice during our first 3 visits, maybe trying to prepare me.  There was always a second  opinion I couldve sought out, as there  is for you, but I have a really awesome surgeon and I just couldnt Imagine him telling me anything that wasnt so.  If you feel comfortable with your doctor, let him do what he thinks is going to be best for you. I know everyone is different, but the way my surgeon said that about the size and the age, it sounded like that was some kind of baseline that they go by for everyone...not sure....why dont you ask your doctor when you see him again if it has anything to do with your age and the tumor size?  i'd be interested to know...meantime, I hope this helps you a little, and  I will be praying for you as you make your decision. Undecided

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  • pennylane
    pennylane Member Posts: 177
    edited October 2008

    Hi Angel, Well, I find myself up in the middle of the night too, so I thought I'd touch base with you for a while.  I'm 3-years out and like so many ladies here doing okay. I think based on your tumor size and node status, you are indeed stage 1...Perhaps you are Grade 2?  The grade of the tumor speaks of how agressive it is and can be 1, 2, or 3...with 3 being the most agressive.  I was 1.7 cm, grade 3, triple negative not that different from you, however your numbers sound a bit better!  I have to say, the numbers your doctor is throwing around are really kind of off compared to what you usually hear for Stage 1...Average numbers after node negative successful lumpectomy seem to be 80% chance of no distant reoccurance after 5-years with no treatment, and additional 5-10% with treatment (chemo that is)....Radiation is part of the deal when you do lumpectomy....that's to eliminate the chance of local reoccurance... 

    Pet scans don't pick up spots less than about a cm, and chemo is meant to go after any micro little buggers that might not even show up on a pet scan...

    You are so young for all of this...it is so unfair....However, at your age I'm sure your Doctor's will encourage you to be agressive and to be proactive in your treatment.  If you have triple-negative bc, it is believed to respond very well to chemo....I heard this over and over again when i was dx, and ultimately it helped me make the very difficult decision to take the AC treatment.  I so understand your feeling that you are poisoning/killing yourself with such strong treatments...However, if it is any consolation, there are really effective anti-nausea drugs now (emend is great) and you will most likely never get sick to your stomach like in the old days...Also, with time, your body will filter out the toxic effects of chemo...

    Keep posting Angel....There are so many brilliant women here....They will help you through this difficult time....Stage 1 is early!!! I have a strong feeling you will be just fine....Best Wishes, P

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  • sueps
    sueps Member Posts: 2,266
    edited October 2008

    Angel xxx

     I am trip neg...was 38 at dx last year.... I had a mastectomy...no nodoes involved grade 3....I did chemo but didn't warrant radiation.... hope this helps.....they told me I needed to do chemo because I was so young and there were no other treatment options after...ie hormonal etc xxx

    Please Keep posting.... we will all help you through xxx 

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  • debk55
    debk55 Member Posts: 108
    edited October 2008

    Angel,

    I just went to Onc. yesterday and got my path report. I had surgery 10-2-08. I had 2.5 cm tumor,  stage 2, grade 3(fast growing), and triple negative, no postive nodes out of 6. I had a mastectomy and since the were good margins I do not need radiation. But with a lumpectomy you do. The Dr told me I needed 4 rounds of AC and 4 of T.  HE also told me without any other treatment I had a 30 % chance of reoccurance and with the Chemo it would be about 15 %. And with triple negative if nothing happened in 3-5 years it would go to almost zero.  Hope this helps. It seems he is being pessimistic. Not what you need now SORRY. I was told in the beginning that I would have to radiation if I chose a lumpectomy but the stats for cure were the same for mastectomy or lumpectomy as long as you did the radiation with the lumpectomy.  Prayers & postive thoughts to you, Debk55 :)

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  • VickiG
    VickiG Member Posts: 536
    edited October 2008

    Asking questions is the right thing to do, no matter where in your treatment you find yourself, so good for you ~ always remember that YOU are your own best advocate!  You should definitely consider a 2nd opinion, particularly since you are not completely comfortable with what is being recommended.  For that matter, however, a 2nd opinion is a good idea even if what you are hearing sounds reasonable.  When my family doc's nurse heard I was getting a 2nd opinion she seemed shocked ~ "Don't you trust your doctor?"  Yes, I do ~ but this is my life we are talking about.

    What you fear chemo & radiation will do to your body is nothing compared to what this aggressive cancer can.  Rads is fairly standard because you had a lumpectomy, and chemo will hopefully zap anything else that is floating around out there; since we are trip neg we do not have hormonal options.  The PET will not necessarily pick up anything smaller than 1cm, so a clear PET does not guarantee that nothing is out there.

    Good luck as you search out your options ~ and definitely ask every question you can think of.  Your onc will not have a pblm w/ your wanting to really understand what he is recommending ~ if he does, you need a diff doc anyway.

    Hugs,

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  • Peggy5
    Peggy5 Member Posts: 3
    edited October 2008

    Hi Angel,

     You are asking all the right questions and now you need to lister to the answers. With your  DX chemo seems to be  right on target. I was Dx with triple negative 3/28/08 and had a lumpectomy followed by 4 cycles of CT then 7 weeks of radiation. The chemo was not nearly as bad as I thought or feared.I think the anticipation is worse than the reality. I felt punky on days 3 and 4 but that was about it. I never missed one of my daughter's lacrosse games and 1/2 way thru my chemo treatments I spent 5 days in DC at my son's graduation from college.

       Keep a strong support team and don't be afraid to ask for help. Remember people want to help they just don't know how so tell then. My friends made meals for my family on day 3 & 4 of chemo week - that was such a big help.

       If you are ever unsure go for a second opinion, I did and both doctor's said the same thing so I knew I was on the right track.In fact my 1st doc. encouraged it! Good luck and tons of prayers, Peggy

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  • pattypoo53
    pattypoo53 Member Posts: 46
    edited October 2008

    Angel,

    I have a similar diagnoses to yours, do all the treatment they recommend, ask alot of questions, get as many opinions as you want. I am almost five years out from my diagnoses. You will get through this, keep coming here for reliable information, and support. I was diagnosed in Dec 03, 50 yrs, atypical medullary, they they treated it as an invasive ductal breast cancer, 2.8cm, triple negative, no nodes involved out of 28, no vascular invasion, clean margins, lumpectomy, 4xac then 4x taxol every three weeks, then 33 rads. My onc is very optimistic about my prognosis, the further out you get with the triple negative the less chance of reocurrence. I am sure there will be more ladies coming to the board to reasure you. Hang in there!

    Hugs

    Patty

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  • bunnyrabbit
    bunnyrabbit Member Posts: 22
    edited October 2008

    Angel I also had the same DX but stage 3. I'm doing Chemo #2 on Monday and Rad after that...My Onc said 10% between 1&5 years of CA  coming back...I am 54.  Know that doing the treatment is a way to fight and fight is what we all must do. I just have to think of the ones I would leave behind and I say to myself I will do anything! Have faith....bunnyrabbit

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  • peachwater
    peachwater Member Posts: 16
    edited October 2008

    Hey there,

          I am pretty close to your dx.  I did the chemo.  I have researched like crazy about triple negative.  My Pet Scan was clear.  My nodes were clear.  Finished treatment June 25th.  I am now going in for a Cat Scan because I have a knot on my Mastectomy Scar.  I hope it turns out to be scar tissue.  Triple Negative is a very aggressive cancer.  Any and all treatments need to be done---even at an early stage like ours.  For me....I had to know I had done everything possible.  If I had not done chemo  and then had this lump  I would have been very upset with myself.  But this is a very personal decision that you have to make. I have a friend who did the total natural stuff and never did chemo.  She is still alive today.  One day at a time is my motto and I never look back anymore. Just keep jumping over the next obstacle.  I am sure that you will look back and be amazed at the decisions you have made in the next few weeks---and feel you are stronger because you have survived making them. Let me know how it all works out.

                                         Barby

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  • tooandrea
    tooandrea Member Posts: 7
    edited October 2008

    ggoff0124, pennylane, sueps, debk55, VickiG, Peggy5, pattypoo53, bunnyrabbit..., peachwater:

    I just want to THANK all of you for understanding my fears and worries, and giving me more info, I so desperately need.

    I'll take any story, opinion, knowledge I can get.

    Thanks again, Angel

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  • cheranthia
    cheranthia Member Posts: 65
    edited October 2008

    Hi Angel,

    I understand that it's hard to put yourself through chemo when you probably feel just fine at the moment. Chemo just seems like the villain because it makes you feel sick while your cancer isn't causing you any trouble at all- for the moment. But remember, it's the cancer, not the chemo that threatens us. The reality is that chemo is your friend and your best weapon against triple negative cancer. My 4+ cm tumor completely disappeared after chemo. That's not an unusual response for us TN girls. I was pretty freaked out about radiation, too, but it turned out to be much easier than I had anticipated. The few months of treatment will go by more quickly than you might think and are nothing compared to the rest of your life you have ahead of you! It's always a good idea to get a second opinion, but I would be suspect of any oncologist who would NOT recommend chemo for a triple negative tumor- regardless of its stage. Whatever you decide, my thoughts are with you. You can do this! 

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  • shellybelly
    shellybelly Member Posts: 3
    edited October 2008

    Hey Angel;

    My room mate was diagnosed with triple neg. also. Her tumor was measured at 2cm.  There is no cancer in her family. She decided to chemo. before having a lumpectomy or mastectomy. She was started on TAC , 6 rounds every 3 three weeks. She did have a port put in and the 'nodes checked and no nodes were affected ( out of 9). She also has a 40% reoccurance chance w/o chemo. Let me tell you, I was scared to death...all the horror stories I have heard about chemo made me wonder how we were going to make it through treatment. I could not sleep, eat or even think straight before she started treatment, she was a little nervous about it but she she just wanted to get it overwith. She will be going for her 4th round of chemo on wednesday.  Her tumor has gotten a lot smaller and she has done great with the chemo treatments! She has not had any nausea, vomiting or diarrhea. She has been able to work her full time job, eat whatever she wants,and we still are able to go out. The only side effects so far are hair loss (she still has some but it is really thin) and she has the side effects from the neulasta injection that she gets 2 days after treatment. The side effects from that are pretty easy to deal with..very tired, no energy,and only after the first injection she had a bad backache.  The tired, weak, achy feeling lasts about 2 days. She has trouble sleeping for a few days after chemo but she takes Ambien when she needs to and that helps. She took a pain killer for the back ache but has not used them since her first round. Her doc. gave her the nausea pills but she has never had to take any. SHe also had mouth sores only after the first treatment and has not had them since. Her doc gave her a script for a mouth rinse (Nystatin) that works wonders on mouth sores.  We are careful for 7 -10 days after chemo to not go out unless we have to, and if she does go out she wears a mask and does not touch anything! We keep hand sanitiser with us. When her blood counts come back up ( usually 10 days) she  can go anywhere she wants w/o the mask. I ride horses so she goes with me to some of the horse events and she is around a lot of people, horses and dogs. We do keep the hand sanitiser with us all the time. Also a little tip if you have a port, ambesol (for toothaches) works really good to numb the port injection site! After Chemo is over she will have a mastectomy and therefore will not need radiation. I feel much better now about chemo than I did before we started it. I wanted every answer to every question, I had a meeting with the chemo nurses and her oncologist, I asked about a thousand questions and was still scared to death to let her start chemo. I kept looking for an easy way out and that meant having no treatment at all and we could not do that. I feel much better about her chemo treatments and I know we will make through treatment and come out on the positive side of triple neg. cancer. I think that if we ever had to go through this again neither one of us would have second thoughts about chemo.  It is not my favorite way to spend a day but it is worth it. You too will make it through to the positive side. We wish you all the best and remember, when the going seems all uphill just think of the view from the top!

    Hope and prayers

    Shelly

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  • tibet
    tibet Member Posts: 545
    edited October 2008

    I am going to start chemo. Any one can tell me what the difference it is between TAC and AC T?

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  • PDXmom
    PDXmom Member Posts: 6
    edited October 2008

    I had a similar Dx as you and had the very same questions about chemo and radiation. I was Dx in Feb 08. The thought of putting my body through all that was difficult to wrestle with. I ended up doing chemo first, then lumpectomy, then radiation. In the end, it wasn't as bad as I had made it out in my mind to be. Chemo was rough, and radiation was no cake walk, but realistically, it wasn't half as bad as I worked up to be in my head. I still have a few lingering side effects and problems, but not really anything that is beyond my ablility to handle. I think we all find out we can handle a lot more than we believe. I hope you find this to be true. Good luck.

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