Just need to talk about the recurrance thing

Diane ~  After posting to your other thread, I'm going to take a stab at this question for you.  In the time I've had bc, I have come to this unscientific conclusion re. recurrences.  I feel that, unfortunately, some women probably are not adequately dx'd from the get-go.  In other words, they are dx'd as Stage I or II when there may be something more going on.  I believe I read a medical paper that reached this conclusion somewhere in my early research, and it makes perfect sense to me.  The other possibility is they are not given adequate or aggresive-enough treatment.  This is JMHO, but I can tell you from my own experience that I started out with a lumpectomy when I clearly needed a mast -- which, thank God, I got several tests and months later.  Or they just have a very virilent form of bc that is going to dodge chemo and recur no matter what treatment plan is followed. 

So I firmly believe it's important to find a breast surgeon and an oncologist who specializes in breast cancer about whom you have absolutely no doubts regarding their knowledge, experience and ability to do the very best for you that any doctors can do.  Also, do your own research.  Understand your options.  Ask questions -- especially if something doesn't sound right or make sense to you.  Examine lifestyle changes you can make to support your treatment.  And as others have said on your other thread, after you've done all that, trust that you've done everything you can to hedge your chances of NED survival, and that what happens after that is truly out of our hands.    Deanna

Hi Diane --

Fortunately or unfortunately, recurrence is not as much due to inadequate treatment as Deanna suggests. Staging goes by how rapidly the tumor cells are dividing, how big the tumor is, and whether or not there are cancer cells in the lymph nodes. That doesn't seem to be the whole story. It used to be thought that distant recurrences - metastases - always moved through the lymph nodes, so if the nodes were clear there would not be any risk of metastases...  Unfortunately, this is not true. In fact, i've read that it is quite likely that all of us with invasive bc have some tumor cells lurking somewhere in our bodies -- cells that moved through the bloodstream and evaded the immune system. These can start new tumors. Or they can be killed off by our immune systems at some time, and we'll never know they were there.

 But the result is that even for the smallest invasive tumor, there are no guarantees that we won't have a recurrence. There have been studies following women for 30+ years -- and every so often a woman comes down with a recurrence, even after 30 yrs. Crap shoot -- and maybe it is really blind luck that makes the difference.... 

The problem with treating every cancer with maximum possible treatment is that the treatments aren't so good for us either. Chemo has very real long-term effects - including an increased risk of some other cancers, heart failure, etc. Tamoxifen increases the risk of stroke (especially in older women) and of uterine cancer. The AIs have some nasty SEs also -- even if they are not as obviously lethal, they can destroy quality of life: bone thinning can lead to fractures; joint pain can be crippling. And so many stage 1 or 2 women *don't* have recurrences and *wouldn't* have them even without chemo, AIs, or mastectomy that just throwing the whole arsenal at really early cancers isn't the answer either.

And then, of course, there are new cancers. Whatver caused that first cancer is probably doing its thing in the rest of our breast tissue also; so we are at higher risk of a brand new cancer --  in the same or the other breast if we opt for lumpectomy, in the other if we opt for mastectomy. The oncs don't consider that a recurrence -- apparently those stray cancer cells don't generally wander into the other breast (worse luck - it's easier tofind and get rid of them there than in the spine or lungs or liver...). 

So there are no definitive answers, and each of us has to decide which risk we are more willing to take...and then go on living.

Diane64 - worrying about recurrence is IMHO almost unavoidable - one would have to be a robot NOT to worry. However, despite all the research and clinical data, the reasons we develop BC in the first place are not known and the reasons it recurs remain elusive....and anxiety feeds on the unknown. I was told that I had no chance of recurrence and found the SEs of tamox intolerable - I was young and strong and determined - had the mx and went back to my life of hard work, self-sacrifice and bad diet...oddly and this is REALLY weird for me - I NEVER worried about recurrence - fancy that!!!! Of course, it did recur. All the palaver about being node negative about it being low grade etc etc...meant nothing... in terms of recurrence - what was significant was that they were right about the type of cancer - it has (with some failures) responded to treatment and I am still around - anxious as all get out due to recurrences - BUT still around and you know - I preferred my state of utter ignorance - I was busy with the kids, the job, the DH who was not so D when it all happened....now - I take time to rest, I carve out a little me time AND I let people know that I serve when I can, but when I can't they must look to themselves. I take my drugs - I eat healthy - I come here a LOT and I manage - JUST...bottom line - time spent worrying about this is not helpful - if there were a course of treatment that would guarantee no recurrence - and no lasting damage you would take it and move on. Until the medical profession catches up with the disease - how we live is up to us....anxiety thrives when your mind is over stimulated and you seek solutions to everything - just to catch a break.

Work with your dr - go to an onc for a consult if required - go over the pathology and get them to give you a risk rating - if you know you are doing too much - try to do less - if they tell you its hormonally responsive and you have all your fertility sorted (kids if you want 'em) consider doing the hormonal treatment - it will certainly guarantee you the best chance of not getting a recurrence of that sort of cancer - and if there is HER2 involvement - consider adjuvant treatment - I mean - as long as the tx is not too hideous - there are sound reasons to take a reasonable path - BUT as mmm5 points out - really consider stuff that will not give you more problems and cannot guarantee complete safety - but take this chance to sort out ANYTHING in your life that you can - take a bit of control of things that are getting to you....put them in order and then give yourself space to consider your strategy.....having a plan and having some space gives you the best possible climate for dealing with whatever life throws at you....balanced and ready....anxiety has it's place - it's a warning that you have too many fronts open...you cannot take THE right path with avoiding a recurrence - but you can take many better paths ....and let's just hope you are in that 75% of very lucky ladies for whom the one event is the ONLY event.

best wishes

Fidelia