Odds of recurrence of cancer?

I was just talking on another thread here about the difference between understanding statistics intellectually and emotionally.

Statistically yes - between the lumpectomy, the radiation, and the endocrine therapy, there is a really good chance things will be kept at bay. There is good solid experimental evidence that the therapies work inidivually and cumulatively and make a real impact on women's cancer-free longevity.

But even if you only have a 5% chance of recurrence, you can still get recurrence. *Someone* is going to fall on the unlucky side of the statistics, and it could be any one of us.

While a low risk number can be comforting and a high risk one can be alarming - they are ALL just probabilities.

I feel like learning to live with uncertainty is the grown up life lesson we get hit with again and again and again. Cancer is insistent we better learn this skill!

There's also data showing that moving from active treatment to long term passive treatment (which the hormone drugs are considered, for better or worse) is a hard transition emotionally. We have time to ponder, time for things to hit which may not have hit before, we don't have such a clear checklist of next steps, and we're essentially in an extended watch and wait mode and get hit questions and doubts just like yours. I think the support of this board, support groups in real life, or therapy/pharmaceutical support can be really helpful for finding a new equilibrium.

(Another thing you can always do is get a second 'opinion'. Sometimes another MO explaining things in their own way, in a way that better suits you, or just better, can be really helpful).

Salamandra, that was beautifully written. I’ve been hanging around the boards a few years now and I don’t think I’ve seen this whole cancer experience summed up quite so succinctly.

Learning to live with uncertainty is certainly the challenge

Sweetp, I think you didn't fill in there correctly the node involvement. You obviously had node involvement since you're IIb and had ALND. Do you happen to know your Ki67 and if you had lymphovascular invasion or not?

I think in your situation, what is the higher risk is your grade, but on the other hand, that also means that chemo was more efficient than for a lower grade. The fact that you were triple positive means you had more treatment options.

Now, as a piece of advice, from who has lived through this hell for over 9 years: you will stress yourself to pieces worrying about recurrence. I know it's easier said than done, it took over 3 years for me to not have the first thought in the morning upon waking up "cancer". I still worry about any new pain.

The horrible truth is that nobody will be able to really answer your question. Look on this forum: there are ladies who were diagnosed DCIS and within a year they went to stage IV, ladies who were diagnosed IIIc 20 years ago and are still no recurrence, and ladies who were stage IV to start with and have been living for a long time. It seems that, after all, our diet doesn't matter, our lifestyle doesn't matter, nothing really matters, we make changes in our lifestyle just to feel we're a bit in control - but the truth is, it's Russian Roulette. Nobody really knows.

Live one day at a time. Gather the pieces of your shattered life and try to find hope for tomorrow every day. Don't let it rule your life - don't give it that power. I know how hard it is. But like the Irish song says: " and the cares of tomorrow can wait til this day is done"

Salamandra, great post.

Seachain, in my 13 years on this site, I have never seen anyone diagnosed with pure DCIS (i.e. Stage 0 DCIS with no associated invasive cancer) who has moved to become Stage IV within a year. In those few cases where someone with DCIS eventually moves to Stage IV, in almost all cases, in between there is a local recurrence (in the breast area) of invasive cancer. It is this invasive cancer that eventually develops into mets. None of this is relevant to sweetp's concern, but I wanted to offer up some reassurance for anyone reading who does have DCIS.

Thank you so much LuckyNumber47 and Bessie, that means a lot to hear from you two

It is a situation where sometimes you are damned if you do and damned if you don’t. If you don’t take the meds are you more likely than not to have a recurrence? Is it really the extra insurance against a recurrence it purports to be? Are the debilitating side effects some women have worth continuing for the sake of warding off a possiblerecurrence? Tough call. I didn’t question taking them - I just did. I didn’t want to second guess myself or look back and wonder what if...

I was early stage IDC, Stage 1b, Grade 1. I did have a lumpectomy, 33 Rads treatments and 1 year on Arimidex and 4 on Tamoxifen. My MO changed my meds because Arimidex attacks the bones and I had osteopenia. I was fortunate not to have unmanageable side effects from either drug.

We all know there are no guarantees no matter which way you go with treatment, meds, etc, but I do have a positive outlook because I was 7 years out last August and had an Oncotype score of 11. 8% chance of recurrence. I’m holding on to those positive stats.

While I don’t dwell on having BC admittedly when it’s time for my annual mammogram I go into anxiety mode. That will never change since I was that way before I was DX since my mom had BC.

There are plenty of reasons to be optimistic about recovery and not experiencing a recurrence- just don’t let the fear of that happening consume you. That’s hard because there’s always a chance. I think women and even our medical teams don’t understand why we are forced to live with the fear factor forever. We are branded with the C word. Is what it is.

Just do what you think is best for you. QOL is important. It’s your body and your life.

Diane

santabarbarian,

that Fitzgerald quote is so apt! Yes, that captures the challenge of breast cancer decision making so well.

Polly pCR is "pathological complete response" ... this applies when you have neoadjuvant chemo first, and when the surgery is done after chemo the tumor has died and disappeared, and there are no micromets or live cells to be found at tumor site or nodes, only scar tissue.

santabarbarian - That's an excellent description of the problem of cancer with our decision-making. I always find myself oscillating between the positive while simultaneously considering the negative. It makes my head spin.

SweetP, I had my mammogram in April 2018 and it was "normal." In June, my breast was red (my husband noticed this) and my primary care doctor sent me to the breast surgeon, who did punch biopsies that were benign. While all this was going on, a large lump developed that I felt and told him about, that is when he noticed something on that April mammogram he thought was suspicious and he sent me for an MRI that confirmed BC. He also decided to do another punch biopsy and it was benign too. I questioned my oncologist about my "normal" mammogram, and he said they had taken it before the tumor board and discussed the fact that it really wasn't something you could see. It makes you doubt trusting folks sometimes, and I already have enough doubts in my head, if that makes any sense. I have not had a 3D mammogram and asked the BS about that and he said we will do that when we start monitoring things after surgery. I worry if there is something in my other breast.

I'm going to ask my ultrasound tech today about MBI, and read up on Ki67, I'm not sure what all that means. Thank you so much! Lisa