Topic: 3+ Year Survivor Stories PLEASE!

May 4, 2009 12:45 AM Kathy_R wrote:

I am also in the San Jose Area.  I am 7 + years post DX.  In fact, the date passed this year and I almost forgot. (Almost, but not quite)

May 5, 2009 10:48 PM PatriciaPrijatel wrote:

Janet:

Try to do as much as you can to take care of the whole you while you go through this process--this means eating well, exercising, and focusing on your spirit with whatever works for you--yoga, prayer, acupuncture.  Rally your friends and family, and let people take care of you.

As to your questions:

Triple negative can come back as positive, and vice versa. 

I wish I had had my tumor retested.  I may still see if I can do that, even though I am almost at the wonderful three-year mark.  Being weakly positive for PR has always been confusing to me and I sometimes wonder how the tests would look if redone.  There was a huge uproar in England about tests coming back wrong.  So, if it is possible to retest, it might be worthwhile doing. One sad thing I had learned throughout this process is to question everything.

Yes, survival rates are different for triple negs. The bad news is that this cancer is more aggressive and has a higher risk of recurrence within three years.  The good news, is that the risk goes down signficantly after three years and, according to some research, triple negs who reach five years disease-free have a lower risk of recurrence that those with hormone-positive disease. 

In 10 days, I will celebrate my third year disease free.  So we're out there.   I still worry, of course. We all do.  It does get easier with time.

Take care.

 Pat 

May 6, 2009 10:33 AM PatriciaPrijatel wrote:

Alex:

I have a lot of stats on my blog, but probably the most appropriate post to answer your question is below: 

63 percent of women with triple-negative status survive progression-free for three years, compared to 76 percent of hormone-positive women. That’s a lower number, but it still means most women survive. This comes from research in the International Journal of Cancer.

Women with hormone negative had a lower risk of recurrence at five years than hormone positive, according to research at the University of Texas M.D. Anderson Cancer Center. Five years after beginning therapy—chemotherapy, radiation, tamoxifen (for hormone positive) or all three—those with hormone negative disease faced a seven percent chance of recurrence, while those with hormone positive had a 13 percent chance. Or looking at it another way, 93 percent of those with hormone negative survived after five years while 87 percent of those with hormone positive did.

Docs say that, because more hormone-negative cases relapse within the first three years, women with this disease who are disease-free at five years have especially good odds. And at five years post-diagnosis, they have a better prognosis than women with the less lethal form of cancer.

 Does that make sense?  I have links to the research on this at hormonenegative.blogspot.com/2... 

The studies I have found about the prognosis for BRCA carriers are somewhat contradictory.  Some actually say the prognosis is better for them.  Whooheee.  I will do some more research on this and will blog when I have enough information.

Take care of yourself.  You are all in my prayers. 

 Pat 

May 6, 2009 02:14 PM Shirlann wrote:

Hmm, I don't know how Frances knew about her TriNeg so long ago, but she was deep into medicine, with members of her family docs/oncs, maybe she had her slides tested recently.  I have my slides, I don't trust anyone .  AND all my mammos, just in case.

Hugs to all, Shirlann

May 6, 2009 10:02 PM PatriciaPrijatel wrote:

May 18, 2009 04:25 PM tibet wrote:

yowyow

congrates to your 3 yr NED! You did great!

May 19, 2009 10:44 PM scutles wrote:

May 20, 2009 09:38 PM suzan_survivor wrote:

I am a survivor of 19 years. Upon diagnosis I was told ER- and PR- and now the doctor says I was probably HTN- also. I have done great. I had radiation and chemo concurrently and was never sick but one day--the one day I decided I did not need the nausea meds with my oral chemo...

May 21, 2009 10:31 AM FloridaLady wrote:

suzan,

Did they do a her2 test...I don't think they were around when you were diagnosed?

Flalady

May 30, 2009 11:34 PM Godsgirl wrote:

Hi Meg,

  All my Drs. were depressing from the start. I was even accused of being in denial. I use to have to remind them of who's in control. Only God knew the day I would be born and only he knows the day I will die.I guess it wasn't my time because I'm 3yrs. and 7mths out. Now they smile and have some hope for me. I'm still reminded i'm not cancer free etc. But they still look at me like i'm a miracle.It blows me away when I know just as much if not more then they do about trip neg.

Oh ya, at the time of diagnosis I had told my daughter that I didn't care what the Drs. told us. I promised her that I'd be at her high school graduation even if I was bald and in a wheel chair. I'm keeping that promise this June 11th, but definitly not bald nor in a wheel chair. Praise God I was able to keep that promise. With God there is always HOPE.

May 31, 2009 04:09 AM tibet wrote:

hi Godsgirl

Do you mean, you had many nodes involvement or just 2 nodes under your collar bone? 

Jun 3, 2009 03:44 PM KelBel wrote:

I was dx in Sept 2003 at age 33.  No recurrences though I thought every ache and pain was cancer in the first couple of years following my dx.  I had very supportive doctors who sent me for bone scans, MRIs, MRI-guided biopsy, etc., whenever I was concerned. After hitting the five year mark, I can now go days without thinking about bc. BRCA testing was negative which is a good thing because I have two beautiful daughters (12, 14) who certainly don't need the bc beast in their lives. 

Jun 8, 2009 09:53 AM bar62 wrote:

 Morning, I'm a newbie to this thread...but I did meet a 12 year survivor on the bus uptown... she proudly talked about her reconstruction...we had a great time. Thanks for the stories...I will read  them when I return from radiation. She had her breast reconstructed way after her diagnoses and couldn't get over how happy she is now.

Jun 8, 2009 10:39 PM brando wrote:

Hi Meggy,

I think what you may want to hear is that you have a good chance, a good shot...to make it through this with what card you have been dealt. I think what it is that we are all after once we get diagnosed is some sort of control of our life.

It is good to read the good, the really bad, and the really great stories. You need to hear all the multi-faceted sides. But I know that what really seems to help more than hearing about individual stories is to maintain some sort of control in your life.

For me, it has been taking care of myself. Make it your daily goal everyday and every single moment in your life to care for yourself. Start by eating clean---yes, a lot of veggies, a little fruit, some good carbs, and some protein and a lot of water. Then, every day work out in a nice sweat with some form of exercise you enjoy. Learn to calm yourself in stressful situations. Be around positive influences. Make huge goals and try to reach them. Focus on the things in your life that give you complete joy. And, when you feel the despair at times, let it wave over you just a little and then let it go---it will come and go, but just learn to deal with it peacefully.

All this, my friend will provide you with a better frame of mind than to gather each piece of story from each one of us 'survivors'. In life, regardless of being diagnosed with cancer, we are all survivors. For us formally diagnosed with cancer, we are truly aware of it and we can choose to live in fear or get in harmony with ourselves at peace.

Truly,

brando

Aug 18, 2009 11:02 PM Meggy wrote:

Godsgirl, thank God they found those color bone nodes.  Sounds like taking out all three layers was necessary.  They sure did the right thing.  You are very inspiring...all of you are. 

 I'm glad to hear that many feel our 3 year mark begins at DX....just realized I'm more than half way there.   My new oncologist said you count from end of treatment but I think she's wrong.  My treatment ended 11 months after diagnosis so I don't like that date.....the earlier one seems so much nicer.  Plus now that I realized I've let so much time pass, I'm getting even stricter on the low fat diet and exercising more.