Stage I: Disease free life?

shlee

Hello,

I am writing to find out what my chances are for living a DISEASE FREE life with Stage I breast cancer???

I have only seen the one statistic for 5 yr that says 92%.

I hear others say it is 98%. I hear other say that 1/2 patients eventually develop mets.

Please, does anyone have accurate statistics compiled for disease free survival long term? If these are not available, how can we know that there have been any improvement in treatment like we always hear? Is it all a lie?

I am feeling very pessimistic because i don't seem to get the true story from anyone or my doctors. I know more women who die with this than who live and i feel doomed. I want to know how much of a worry i have for Stage I coming back ever. I am also worrying about every other cancer in the book too now-pancreatic, colon, melanoma, sarcoma. Does anyone find this? If i could get one, what is preventing me from getting another? is there anyway to prevent this before it occurs? 

peggy_j

shlee, I hear you. I think everyone goes through this period of really worrying about our survival rate--I know I did. (my counselor called it an "existential crisis.") I don't know the sources of data that you quote, but keep in mind that some sources quote the survival rate and some quote the rate of recurrence, which are different things. Also, my MO reminded me that that overall stats for Stage 1 covers a large group of patients.  If you look at just Stage 1 IDC data, for example, it includes patients that are HER+ or triple negative. It also groups patients with tumors that are 2 cm and those that are less than 1 cm. So there is some variance within the group.  The Cancer Math website is helpful for a more specific estimate. (your doc should be able to discuss this too).

http://www.lifemath.net/cancer/breastcancer/therapy/index.php

That said, all that data can drive you crazy. When I first met with my cancer docs, everyone was quoting the risk of recurrence over the next 5 yrs or 10 yrs. No one spoke of anything after that so my mind decided...aha! I will only live 15 years. Of course, that's completely crazy. The science is changing so quickly that we'll have advances 10 years from now.

Personally, I am very optimistic about Stage 1. I also know many many long-term BC survivors. I know women who are 30+, 20, 15+ year survivors. I know two people who were Dx'd as Stage 3, (including one with many many lymph nodes) and they are now 12 and 16 year survivors with no end in sight.  Plus keep in mind, treatment today is better than it was 10, 20 and 30 years ago. Stage 1 has an even better prognosis.

Yes, it is possible to survive BC and then get another cancer later. It's not a vaccine (I wish it were!). When I finished Tx I was freaked out about this, too, but...I've read enough to tweak my diet (there are cookbooks that can help. I like the CANCER FIGHTING KITCHEN) and change the things I can (reduce my BPA intake). When I was really freaking out I spoke to a counselor again. There's no magic bullet on coming to terms with this, but for me, I eventually learned to make peace that there are some things out of my control and I can only focus on what's in my control. For all I know, I could have survived cancer treatment and then be hit by a car while I take my daily walk. Unfortunately there are no guarantees. I think this is where some people turn to their spiritually or life philosophy. In my experience, these fears are reduced over time. (you're still in the thick of Tx)

Overall, I know that Dx and Tx can be discouraging and, realistically, I doubt there's anything I can say to assuage your concerns. They are real. But...in my experience, I found it helped to get a little support. I'm not a support-group kind of person, so instead I went to a Guided Imagery group for cancer patients--it's like meditation and we have a quick check-in at the beginning of each meeting. It's nice to be around my tribe. Also, my local BC support center has free private counseling sessions. I spoke to the counselor just twice but it helped a lot!!!! Good luck. It's a challenging journey but one you can get through. Take care!

Beesie

shlee,

Someone else asked a similar question recently.  Not exactly the same, since she was asking about survival, not disease-free survival.  But I pulled up some data for her that might also be helpful for you. The best long-term data is from the SEER database, but the important caution is that when you are looking at 20 year survival numbers, these women were diagnosed more than 20 years ago (it takes a good 3 years or more to gather and report all the data).  20 years ago, screening was not as advanced as it is today and women tended to be diagnosed at a later stage.  And treatments were different.  So 20 year survival data provides you with some information but you have to remember that the 20 year survival rates for you and your peers, women diagnosed today, will be much higher.

Here's a link to the other thread:

Topic: Is there any hope for long term survival?

Take a look at my post in that thread.  And check out the SEER database that I've provided the link to.  There are a lot of other very good answers in that thread too.  

And I agree that LifeMath is a good database to get an idea of your own situation. I always prefer to display the results as a Pictogram rather than a graph, because I find that easiest to understand. You can select that option right under the box where the results are displayed, if you click on the drop down menu next to "Display as"

Shari0707

Am I crazy to b so neurotic? I am constantly scared and worried but let me tell you >I was told I have a90% chance of being cured. Cured! Or having it ne'er come back! It's hard to remember that at times but that was from my oncologist.. A doctor! I am doing pre chemo before surgery but they already biopsied a lymph node and it came back positive, so I know I have nodal involvement and my tumor is around 2.5 cm.... So with all this being known, my doctor staged me at stage 2 and then gave me my prognosis, which was pretty darn good I think. I have a lot of rough days still, because of what I read on the Internet, but I also know doctors tend to try and tell it like it is.. And she was pretty friggin positive... I am scared but it is also because I am going thru it right ow, and when I look in the mirror I have no hair and I feel like I won't get thru this... But I will... I am 31 by the way and have my whole life ahead of me! So try and be positive because I am trying over here too...

10/8/2012, IDC, 2cm, Stage IIb, Grade 3, ER+/PR+, HER2-

wrsmith2x

Shari and Shlee, 

I wish I had more words of wisdom like the ladies that responded above.  There is nothing worse than not knowing something.  I'd much rather know so I can plan....I am such a planner....but really in our lives how do we ever really know what we will die of?  Nobody in this life gets out alive.

You are both still in the midst of treatment.  When treatment is over, most likely, you will go through a period of time with much fear.....they said you are done and now come back in three, four, six months......what do you do now?  With time that fear will fade.  Cancer will not be in every thought......just every other one....then a few times an hour, then a few times a day, and then you'll find periods of time when you don't think of it at all.  And as the years pass it will fade from your mind.  

Please know that this place is a great place to vent.  These ladies here are the most wise women and they totally understand what you are going through.  Live your life, worry if you need to but don't over do it.  Life is too short to let cancer win.  Hug your kids, love your parents, friends, siblings a bit more.  But mostly, laugh every moment you can.

I pray the beast never darkens your doorstep again.  Namaste'.

Shari0707

Wrsmith2x,

Your words are beautiful, poetic. Thank you so much. Your post is most helpful and inspiring. I plan to read it and reread it for hope and positive thoughts. Thanks ten times over.

Shari