Progression rates from stage IIIC to stage IV?

bejuce · 09-02-2009, 02:41 PM

Hi there,

Just saw something online (on the Ask the Expert site at Johns Hopkins) that scared me. It said that most (70%) stage IIIC patients progress to stage IV. Is anyone familiar with this number? I know I'm not supposed to look at statistics, but now I'm very, very worried about what the future may bring.

How many of you stage IIICs out there who are still doing strong after 5/10 years??

Thanks!!!

Marcia (bejuce)

Lien · 09-02-2009, 03:00 PM

The thing with stats is, that they can scare you or give you a false sense of safety. When I was first diagnosed, early stage, good prognosis, I "met" a woman with a similar diagnosis online. A year later she had developed mets. I hadn't. I know several women who are NED after a stage IV diagnosis (more than 10 years later!!!). I know women who recurred when their prognosis was excellent, and who didn't with a lousy prognosis. In the end it's a crap shoot. Why did we get BC in the first place? We just don't know.

So I decided that I might as well make the most of my NED days, as I had no idea whether they would last or not. I'm lucky. I'm five years out and got to spend time with my kids, my husband, my friends and my relatives. I went skiing again, for the first time in many years and taught my sons to ski. I try to start each day with a smile on my face. I try to sing in the shower (have you noticed it's very hard to feel bad while you are singing?).

The first year is just so hard. I think the fact that your tumor (gosh, it was huge! My breasts are not even 10 x 12 cm, I'm a B) responded so well to chemo is a very very good sign. I bet you have a pretty good chance of being one of those miracle girls.

Keep taking deep breaths. This too shall pass.

Hugs

Jacqueline

chrisy · 09-02-2009, 04:45 PM

Hi Marcia,
I see (and second) Jacqueline's comments about stats being meaningless at the level of any individual, and raise her that even the stats on a macro level - particularly for Her2+ cancer are not even correct any more since the use of Herceptin in adjuvant therapy.

The story has changed since Herceptin - Her2 pos bc is now viewed as a "favorable" prognosis compared to not Her2+. This is a complete reversal!

(I didn't have the option to get adjuvant Herceptin - which may or may not have made a difference in my particular case)

Becky · 09-02-2009, 06:55 PM

Dear Darling Dear

I would keep my face to the sun. First off, who knows what your real stats are as you are in an important trial - receiving both Tykerb and Herceptin in the adjuvant setting (thank you for doing this for future Her2+ women).

Second, even if the stats are right (and they do seem high to me), it means that out of 100 women "just like you" that 30 do just fine. Why don't you think you are one of those 30 (because you are) and you shouldn't think differently. There are many, many women on this board who were just like you and doing fine (one even having a baby after treatment was over).

Trust yourself that everything can be fine. You are a hero for the trial you are in - I just want to let you know that.

Jackie07 · 09-02-2009, 10:02 PM

Marcia,

I thought I had replied to you - since I couldn't see it on this thread, I'll just say it here again.

I agree with everyone that stats really is just a 'reference' number. When I had my brain tumor diagnosed, my surgeon was sure that my neurologist's guess was not correct. Sure enough, after sending the sample to another institution, it turned out to be a very rare type of brain tumor. Something like less than one percent of all brain tumors diagnosed (it's not even in the textbook - according to my doctors) Taking into account that any primary brain tumor is considered rare, mine became really, really special.

If you look at the stats of all brain tumors, the odds for me to be still here and typing all these messages would be very slim. But it so happened that I had a great surgeon who worked on me 23 hours straight. And when the 3 residue tumors grew again Gamma-knife Radiosurgery was available everywhere and mine have been well under control ever since.

But then I got breast cancer, and then I got recurrence... So what - my oncologist just commended on my being a fighter for 6 years (against breast cancer) and I reminded him to add 13 more years for my brain surgery.

I'm typing this while reading Becky's quote right above: "... you
are braver than you believe and stronger than you seem and smarter than you think."

Check out the 'long-time survivor' thread by using the 'Search' button on top of the Gold bar. I'm sure you will find plenty of stories of stage III or even stage IV survivors there. And remember that people who are 'cured' usually don't seek out this board or continue to hang around. Since we are all survivors here, you know you belong to the 30 % winners' club.

Jackie07 · 09-02-2009, 10:20 PM

Check out the thread 'Stats I need help with' started by PattyF. She posted the same question and got several replies.

Cathya · 09-02-2009, 11:28 PM

Marcia;

I am stage IIIc and coming up to my fifth year (found first lump in late October 2004) NED. Be encouraged.....I am!!

Cathy

MJo · 09-03-2009, 06:42 AM

I would also want to know if these stats included Her2s treated with Herceptin. My Her2 buddy was Stage 3b treated with Herceptin, and she's NED four years now.

Sandra in GA · 09-03-2009, 07:21 AM

My two cents worth. When I was trying to decide to have radiation - I was hesitant because my left arm is my "work horse" because I had Polio at age 18 months that affected my right arm and have very limited use of that arm and hand and if I developed severe lympodema in my left I could not retrain my right to do my daily care duties - I prepared a list of questions and concerns I wanted the rediation onc to answer. (Of corse, my cancer was in my left breast and they removed all 21 nodes from under my left arm.) Included in that list were several that I wanted answered concerning survival and recurrance rates with Herceptin and Tykerb alone and with traditional therapy. I wanted empirical statistics!! Well, when the questions came out of my mouth, I realized that these have not been collected and documented yet! My radiation onc said, "You guys are writing that information now!"

So now the stats are old. Herceptin has only been available around 10 years and Tykerb was only approved by the FDA in '07.

Live everyday to the fullest! Dance when you want and love everybody!

Sandra

PS As you can see in my signature, I did go ahead with the radiation treatments. I am glad I did. And as someone has already posted, the stats don't mean anything unless you are one of the positive numbers no matter how high or low the percentages. I believe in doing all I can and then putting my life in God's hands.

Audrey · 09-03-2009, 10:34 AM

Hi Marcia,
Just wanted to let you know I was diagnosed at Stage IIIb with a very large tumor and positive nodes and after chemo, surgery, radiation and a year of Herceptin I am doing great eight years later! Herceptin has really changed the stats on this disease...best of luck to you-stay hopeful and keep the faith!

Nancy L · 09-03-2009, 11:33 AM

I too am a data person and want to know the stats. My last understanding was that Stage IIIC recurrence rate is around 50% for those who receive Herceptin. However, the reality is that there are very few Stage IIIC diagnosis each year and it is a fairly new classification.

The next time I see Dr. Slamon, I will ask him for a current stat. If anyone knows, he will. My goal is to stay one step ahead of the next Her2 discovery. When Dr. Slamon told me there is a lot of hopeful research going on, that gave me hope. I think it is really important all Stage IIIC patients get connected to a top breast cancer oncologist who will know what to do if you have a recurrence.

My story is listed below.

9/2004 Age 57 at diagnosis/Post menopausal/Stage IIIC focal high-grade ductal carcinoma in situ of the left breast with invasive component (7x5x3cm tumor with 11 of 11 tested lymph nodes positive for metastatic carcinoma with extranodal spread).

Estrogen/Progestrerone Receptor negative
Her2neu positive by FISH (HER2

17Z1 ratio of 4.03)
CT post surgery identified a single prominent left axillary/subpectoral lymph node measuring 11 mm/ Ki-67 staining was 70%

10/04-4/05 Dose Dense---4 AC; 4 Taxotere/Herceptin; 35 rounds of radiation.

5/05-current Herceptin every 3 wks;

3/2009 Recurrence to right neck nodes. Currently on Herceptin and Tykerb

Laurel · 09-03-2009, 07:36 PM

Marcia,

I do not think cancer will dare darken your door again. With that million dollar smile of yours you can light up the darkness and radiate that nasty cancer away. Just keep smiling and try to live each day. Cancer has changed us all for the better. Oh, maybe not our bodies, but our souls are kinder, out hearts bigger, our spirits gentler. Stats smats.....!

bejuce · 09-03-2009, 10:22 PM

Thank you all for your support and encouragement. I honestly don't know what to make of stats anymore. I've seen so much inconsistent data online that I'm not sure which number to believe.

Add to that the fact that I had less than 1% chance of getting breast cancer and here I am fighting this, when I hear that I have anywhere from 30, 50 or 70 % chance of getting it again, it sounds so very high to me that I feel numb and afraid.

I love to hear all the survivor stories out there -they definitely strengthen my hope.

Nancy, let us all know what you find out from Dr. Slamon. My oncologist at Stanford told me after running through the Adjuvant Online program that I had a 70% chance of making it to 10 years with Herceptin added to the mix. Because I'm 38 with young kids at home, I have to believe that I have at least 20-30 years left...

Thanks again!

Marcia (bejuce)

lkc Gumby · 09-05-2009, 08:29 AM

hey marcia,
another stage IIIC here. 4yrs and 4 mos out( but who's counting!)
NED, I don't look at the stats I find they are oudated and are pretty much flawed. Besides we're all unique and have unique health histories( other then BC ), etc , etc., which stats do not account for.