risk of recurrence after 4 years out

Hello Tibet,

I was glad to know that you are still doing so well. You posted on my thread when I first started it two years ago, Calling all triple negative breast cancer patients in the UK.

I am over seven years since diagnosis with TNBC and still doing well. We can live normally and put cancer in the corner, but we still have to be vigilant. Cancer can come back anytime.

Wishing you well,

Sylvia.

I really do not want to be a debbie-downer but it CAN still happen.  By the time I got to 4 years cancer was in my mind very little.  And then at 4 years, 1 month and 3 days (mammogram) they told me it was back.  So it can still happen.  But the ODDS are very against it happening.  So take that and run with it!  Live!!  Give cancer the boot from your heart and mind.

I pray you never have to deal with the beast again.  Namaste'. 

Tibet - My ONC recently told me to pop the bottle of champagne at the 2 year mark for TN.  Other breast cancers are at a higher risk for reoccurence up to 5 years.  Having said that, nobody has a crystal ball, and not everyone fits into the statistics.  However, I'm choosing to pop that bottle and go on living!  Good for you on reaching four years . . . Here's to all of us turning old and grey together!!

Kathy

I'm gonna TRY to stay positive and think like mine will be the same....years out. In less than two weeks I have all my first tests after my treatments. Y-I-K-E-S!! ONE question. For those who took chemo treatments, how long does the port have to stay in. I had someone tell me hers has been in for 7 years but she didn't mention recurrences, which I am sure that was the case for it being in so long.

THE ONES THAT ARE AT LEAST TWO YEARS OUT, did you have a chemo port and if so how long did you have to keep it? Prayers for those who are going through recurrences and CONGRATS & Prayers for those who are surviving no recurrences. Gives me hope

Karen

Yellowdoglady

I would have panicked without a port. I watched my mother go down fast with her treatments and at that time they didn't have ports and her veins collasped. I hated watching her go through what she went through. I was happy for the port and will be even HAPPIER when it come out. haha

Congrats on your four years WOW inspirational and gives me tons of hope. PRAYERS for all of us to get past this monster

Karen

I was 4 1/2 years out when mine came back. I had just put cancer behind me and living life...then bam...back at it. My oncologist told me when I first diagnosed the first two years are the most critical....that is usually when it comes back...if you make 5 years your risk of recurrence is very low....so put cancer behind you, live your life to the fullest...but always pay attention to any signs your body may give you and when in doubt, get it checked out!



Cathi

Prayers for you too Kane. I do have to move on. I already need to learn how to breath/exhale all over again. I drained from worrying all the time. Will cross my bridges as I come to them and just deal with what I have to deal with. Again ALL Prayers.

Karen 

To all of you,

At the beginning, I was given really bad odds.  I imagine a lot of you were as well.  To be here some years later is a gift in my mind.  We probably all do our homework, sit down and cry and decide that we should be stronger than that.  We get busy and get the best help we can find, and stay strong and do our level best to stay alive.  Our window of doubt is huge, but it is shorter in time than the positives.  At five years, we are maybe better off than others because if it comes back, it's a true anomaly or it's just us growing a new thing we already know we can because we have done that before.

I was told that at 5 years, the risk of recurrence is nearly zero. After 3 years, it drops like a rock.  The largest risk is in the first year and a half, when half of all of us who will recur, do.  It's a bunched group, as most wait until they are out of treatment to recur, and treatment takes a lot of time.

So we all have to be vigilant.  Probably for the rest of our lives.  But that does not mean we aren't meant to live happily and well.

Although it happens, statistically, recurrence of tnbc after 3 years of NED is unusual, especially for early stagers.

Of those of you who recurred, did you or your onc monitor your vitamin D3 levels?   Any other life style changes such as modulating dietary fat, exercise, or any evidence based supplements like curcumin, D3, EGCG(geen tea), blueberries, etc?

I'm wondering if there are ways to help nudge the odds in our favor in addition to the traditional allopathic methods.

I am approaching 4 years post dx and I had no choice but to try these little extras since I could not do chemo or rads.   I can't help but hope that they have some positive effect.

MsBliss:

You are a great inspiration to all of us!  Thank you for sharing that with us.  )

It's awesome to hear that you are doing so well without rx or chemo.  I know of someone else who also has gone over 10 years so far, no recurrence with a lumpectomy and no adjuvant treatment. I have never heard of SonoCine until I researched it just now.  

I know what you mean by the 'no choice' but to try other things. I felt lost not being able to go on Tamoxifen, although my Onc tried hard to get results to justify it.  

This has been my new life since Jan:  No Diet Coke / No Coffee / Drinking Water and Green Tea 

Diet: Steamed brocolli, cauliflower, spinach, carrots with dash of tumeric for lunch or dinner with protein

AM:  Blueberry/Blackberry/Kale/Celery Smoothie blended with water and whole ground flax seed

All other foods:  Low fat - up to 30 grams a day -- I know I am over that at least a few times a week, not by much, but a little.  Fruit, steel cut oatmeal, sockeye salmon, wild caught shrimp, 99% fatfree turkey and chicken. Spaghetti with spaghetti squash in place of noodles.

It's getting easier to get the meals made and stay into a routine.   I've started sneaking in chocolate, will have to weed it back out soon.  lol

Exercise:  Since June:  90 minutes every day - 10 miles on the EFX machine

Vitamin D3 came in a 12 units - now I take a Vitamin D3 supplement each day - goes into my smoothie after I blend it.

I might add in Milk Thistle ... but I think it has Estrogen and forgot to ask my Onc about that today.  

I was 4 1/2 years from original diagnosis. Thought I was clear....guess not.



My onc was good about not giving me a timeline....just told me 50/50 shot at remission. I think just researching and seeing stats made me think not much time. I still have those thoughts but try not to dwell on it....just take each day I am blessed with.







Cathi

I have to agree with Cathi (bottkota) ... insist on a scan.

I'm having a redo with BC after 12 years. This time ... going to get scan(s) ... I don't want to hear how well I'm doing anymore. That's all I heard the pass 12+ years from MO. BTW ... found new MO that likes to use scans or agrees with me. Yes, I have no trust in a MO that just talks and looks at my labs. I just want a scan on 2nd & 5th year ... 7th ... 10th ???

I always joke with my husband and dr ... the odds are ... 0% or 100%. I have never asked any of my dr about odds on anything. They would tell me and I have to correct them ... 0% or 100%.  Life happens ... I smile & laugh everyday.

~LA

Checked in today after a long absence - I guess it is on my mind since my yearly followup with my oncologist is next week.

Haven't been able to read through the threads but for those with questions about recurrence it is about 6 years, 5 months since my diagnosis and no problems other than the residual aches and pains remaining from chemo and radiation.

I kept my port in five years!  Mainly because I had not had it put in right away initially and my veins are basically unaccessible so I dread all the bloodwork we still have to have routinely.  If I had do-overs I would have had a port placed immediately so my veins were not damaged.  I have finally found one person at the lab who can get a vein in the top of my hand.   

Maya847, try not to worry too much. I'm 3 and a half years out and have never had a scan.  Most TN's go by the 2 week rule.  If something hurts or is bothering you for 2 weeks straight, go see your Onc. and have it checked out.  The farther out you get the easier it gets to be patient and not think every little ache and pain is a recurrence. (Although it never goes away completely) Good luck to you.    

Well a distant recurrence means the original cancer spread (mets) and is stage 4. A recurrence in the breast suggests the first treatment wasn't entirely successful, but additional rounds or another regime may wipe it out. A new primary probably means your last treatment was successful, but your body grew another cancer. As for treatment options, it may not make a lot of difference, but the prognosis may vary. Being 12 years clear is a good thing, though.