3+ Year Survivor Stories PLEASE!

crs319,  Absolutely, but I do hold your opinions in high regard   I'm fine with no radiation.  I've heard that it can damage  tissue making reconstruction difficult.  I can't wait to be rebuilt - stronger, better, bionic... lol.  Three more infusions to go.  My next is Thursday.  I hope the side effects are milder than last time.  I have the state-of-the-art nausea meds.  I think I'm extra-prone to nausea.  Well, I've got 3 glorious days until then.  I'm going to enjoy them and get some things done around the house.

Lisa

Congrates to your 2 yr out with 10 positive node. This gives us all hope...Did you do a genetic testing? For a TN, after 2 yrs, the risk of recurrence drops....What was your chemo treatment? Did you have chemo first ?

hi Violet 7 -- I have two things for you here

1)  I have had a LOT of the same feelings that I you write about! I also had one positive node, I think it was 1cm, and they said that they got clean margins on it and the tumor.  I had a bilateral mx, and they also removed 11 other nodes and said they were all clean ... and yet, the radiation question my Onc. wants to wait and see  ... I dont know how to feel about that. I would be happy not to have rads. because chemo is supposed to mop up all those strays,right?  And they said clean margins all around ... so wouldn't rads be kind of over-kill due to the damage to the skin etc. that it would cause?  If they could pull up some stats that said rads would increase my odds by like 30-40%, then yes, I would do it ... i still have yet to get any stats on rads done on a person with a dbl mx, clean margins, and one LN involved.  I also eat the very same way as you, and I was wondering if I was doing the right thing.  I eat kind of junky right after chemo becuse it is the only thing I can tolerate.  But days later, as I fell better, I eat better and start taking my D3 and calcium, and Omega 3's again.  I wonder sometimes if we feel nausea for a reason...kind of liek morning sickness does .. it is like the body is telling us exactly what it needs (and does NOT need) at that time.  If the body is craving only mashed potatoes and mac and cheese, or only crackers, then that is what is needs at that time?  Oh , and I too am totally getting a little freaked out about my #3 treatment on Wednesday.  We are little peas in a pod, aren't we? ;-)

2)  Since I just started this b/c rollercoaster ride, I am not yet able to jump on the 3 year survivor band wagon, BUT ... my mom had BC at age 43, in 1992, and had a bi-lateral mx with immediate recon, and took no chemo until a year later after her lymphnodes swelled up.  It was a light chemo, for only a few weeks, and her hair only thinned.  She is still alive and well today, 20 years later.  Her mother(my grandma) was dx with b/c in her mid 60's, had a single mx, with no chemo, or rads, or meds, and she lived to 93.  HER mother (my great grandma) had b/c, and lived until her mid 70's, with no treatment what-so-ever.  Those three survivor stories are the golden thread that I am clinging to.  Despite all of that, my Onc. doubted that my BRCA test would come back positive .. WTF?  Really?  I mean seriously, could ther be any more of a RED STRIPE painted through a family tree?  I told him that if my test came back not BRCA+ then I must have  a BRCB, or BRCD gene that they just dont know about yet! He laughed.  The test came back +.

Thank all of you for your survivor stories.  I cling to them when things get rocky.

Meece,

Did you have lumpectumy before thus they saw calcufication on Mamo?

11tybillion, your story of your Mom, grandma, great grandma is just amazing and gives us hope....do you have BRCA1 or 2? Do you plan further surgeries to reduce risks?

Was your Mom's ER+? Did she take anti-hormon meds?

Newalex ...

 My mom passingly mentioned that she thinks her Dr. said that her b/c was "highly hormone receptive..." but there are a couple of things about this ... I did not think that they coudl test for hormone responsiveness 20 years ago (I wonder if at that time, Dr.s used to assume that all b/c, since it was a "Female thing" was all estrogen related?), and if it were hormone responsive, wouldn;t they have prescribed her soem sort of meds for it?  Considering her young age (43) and the fact that I am TN BRCA 1+, I wonder if she was actually TN as well and they jsut did not have the proper testing at that time?  I dunno....   My mom took NO meds after her chemo at all.  Nuthin'.  She walked out and never went back.  As far as I know, she might not have even finished the treatments that she was supposed to finish.  She really will not talk about this stuff at all in any way that I can actually use.  I really want to know from her if they told her that the reason her lymphnodes under her arm swelled up exactly one year later was because of cancer reoccurence, or some other reason ... because if she truly had a reoccurence exactly one year after her bilateral, and she was able to wipe it out with chemo (chemo that she refused to take the year earlier after her mx) then it gives me/us all hope that even a re-occuring TN b/c can possibly be effectively taken out with chemo.

I wish we could find more 20 year folks out there to talk to, to learn how things have changed with hpw they treat this disease ...  but I bet they got their NED dx 20 years ago, and they all took off to live their cancer-free lives, and never think of looking back !   And I dont blame them!  I think that there are a lot more TN survivors out there than we will ever know ...  

Meece, I sure hope you know I wasn't minimizing the fear that comes with each new test. I am certain nothing will ever be normal again and am praying for good results and sending you positive energy. Sometimes I do wish I had gone the double mastectomy route just so I wouldn't be sitting in waiting rooms in the future with that dread feeling in my stomach of not knowing.....

Newalex-my node was less than 2 mm and was completely contained with no breakthrough in the lymph wall. My primary tumor was 1.9 cm. The thing I like about adjuvant on line is that the stats haven't even been updated in a few years so the survival rates are actually a little higher within the past several years.

Violet-I was 10% for estrogen when they first tested but they repeated the tests (twice) and it was a false positive. So I'm 0% positive.  I've given up wondering why I got cancer, for me I think it may have been stress related, I was in a bad marriage for years, got divorced, my sister developed a brain tumor (and is fine for now) and the stress was overwhelming. I know, for me, my mind is tied so closely with my body. I do believe where the mind goes, the body follows. Not to say that people who don't survive this disease aren't strong minded...sometimes our bodies can heal and sometimes they can't.  I just know I won't waste any more time waiting to be happy. You know, the old if I could loose ten pounds or if I had a better position at work or the right guy, etc., I could be happy.

 I am happy (nauseated and don't feel physically well sometimes) every time I get up and see my kids. Or can eat lunch with my friends. I get angry and grumpy but thats just life. You sound strong and I'm praying for you every day.

Leprechaun-thanks for the info. I had forgotten about BBB and can't say I was happy to remember but I do like knowing the facts. I'm curious to know your opinion about antioxidant therapy (specifically resveritrol) and how it might or might not encourage apoptosis.

I've stopped looking at the chemo thread because I get sick just thinking about it and some are saying Taxol is worse than the AC (how I can't imagine). So I'm going into denial about chemo and adopting Scarlett O'Hara's "I won't think of it just now, I'll think of it tommorow..."

Crs, I didn't think that.  Yu know, it doesn't cross my mind that my TN might return.  I just  worry that a new type might appear.

Geez, I sound so negative today.  I have chemo tomorrow.  I totally agree that where your mind goes your body follows.  I am going to make time to meditate today, and to infuse my mind with positive thoughts that have nothing to do with chemo and cancer. 

YEP....I so do the WHAT IF's.......Going to my #30 radiation treatment today. After this I have 2 more left.....then......OMG......hope I can keep it together.....I am afraid of ENDING treatment. I have been doing this since APRIL.....How do we MOVE ON?????

MAY GOD BLESS US ALL 

I will be a 3 year survivor in less than 2 months.  April 6th

I was recently introduced to a woman who was dx metaplastic triple negative.  She is four years out with no recurrence.  She was able to take only one dose of AC.  She did not have rads.

She is a nurse and said that oncs put a lot of stock in Adjuvant Online but remember, for certain subgroups, especially with triple negative, the numbers come from as few as 27 PATIENTS!!!!  The data is also old and does not take into consideration new information, ie, vitamin D levels.

Violet..my onc.said to eat whatever I wanted to eat during chemo...the thing is to keep your weight on and not lose it..so eat whatever...maybe you will crave healthy foods..or not..doesn't matter..just eat...I tried to eat healthy..would carry a bag of spinach around as a snack..but don't freak outabout eating healthy now...you can do that later..I also did not take any vitamins..or anything until 2 weeks after chemo..didn't want anything at all to interfere with the chemo action..now I take low dose aspirin, 5000 iu D3, biotin (for my hair), calcium, and a women's every day vitamin...I have my D3 level taken again in 2 weeks..I'm very anxious for this..last time I was a 40 and hoping that I moved it up to 70 or more

It's amazing that the comfort food that we like during chemo..mashed potatoes, noodles, mac and cheese...maybe our bodies are telling us that is what we need...whatever..go for it!

Congrats, I hated the AC days, the Taxol days were much better, I slept through much of them.

Hi lovely TN sisters!  Congrats watersprite!  MsBliss, I stopped the cream the moment they found the lump.  I do believe it was Premarin.  And I do believe that my vajayjay has indeed atrophied as a result - I now have the vagina of an 80-year-old.  I hope there is another way to shore it up because obviously the hormones produced by my own body and the hormones in a tube are not my friend.  I go to my gyn-oncologist again after chemo.  My last pap was abnormal as it was taken during chemo.  And I think I'm atrophied which will cause abnormal reads.  I don't think my endocervical cancer has come back because they took everything - cervix, 1/4" of my vagina, ovaries, uterus, surrounding tissue - I can't imagine that it would come back while receiving chemo for breast cancer.  Thanks, crs and carolinachick.  Crs, I hope your side effcts are few.  Mine were pretty bad again, and I managed to get a chest cold   Titan, thanks, you know, I think I've now let go of the hope that I will lose weight during chemo.  You are right, afterwards would be better for my immune system.  I wanted to be at my goal weight and get my reconstruction underway, but I'll be on coumadin for 6 months anyway as I have a blood clot in my arm.   Even when it is dissolved they keep you on coumadin for a 6 month total.  They probably won't do surgery until I'm off of it anyway, so I'll have the summer to get into shape.  Crs, keep on thinking about the Kentucy Derby.  I keep thinking ahead too.  I'm going to take the kids to the beach everyday this summer.  We are going to have a lot of picnics at the beach to watch the sunset.  I'll be baldish, fat, and wearing a bra w/ boob inserts but I will be so glad to not be doing chemo I think it'll be the best Summer ever.

Pure, did your dr. say that it was a chemo, or post chemo drug?