Do you want to know your prognosis?

I'm wondering why someone with tumor stats like yours would even be asking such a question?? It appears you've got an excellent prognosis from what you've listed in your bio line. Don't you realize this??  I can understand someone not wanting to know their prognosis if it's likely to be distressing news because sometimes ignorance really is bliss - but small size, grade 1, stage 1 node negative and hormone receptor positive is about as good as it gets with invasive breast cancer.  It appears that my BC was very similar to yours except I only had a single node removed during my surgery. To share some words of optimism told to me by an oncologist shortly after my diagnosis "this kind of breast cancer isn't going to kill you." 

Some people see the glass as half full - others as half empty and when the line is drawn midway, it's understandable that the views can fall either way. But then again, there are sometimes those who see it as half empty even when the glass is nearly topped off and virtually anyone else viewing that same glass would call it full or near full.  It's all a matter of personal perspective (and sometimes personal choice).  As someone with an equally good prognosis as yours appears to be, I have to say that I certainly would and DO want to know that my prognosis is good because not knowing this very important fact might lead me to live a life unnecessarily consumed by fear. 

Deb, like you I wanted to know everything. But at no point was I given a prognosis other than the onc said I had a 95% chance of no recur when originally diagnosed 1993. Did have RECUR 2001. I am always puzzled when persons with any kind of cancer say the doctor tells them they have xxxx amount of time to live. I don't truly believe anyone can say how long someone will live. Live each day to the fullest, take care of yourself. And you are right knowledge is power and give you extra encouragement to keep on keepin' on.

God bless!

Susan

Hi Ailenroc

In the beginning, I wanted to know everything about my cancer.  I couldn't get enough information.  I researched until I couldn't read anymore because my eyes were blurry and burning.  I, too, had Stage 1, Grade 1, ILC, 0/4 nodes, ER+/PR++, HER2-.  So, again, a good prognosis.  I am now 3 years out and just turned 51 a week ago.  I had a bilateral mastectomy with no recon (fear of more surgeries), 4 AC treatments, and am now on tamoxifen for another 2-1/2 years.

Now, at this stage, I don't want to know anything.  I have osteoporosis (onset since chemo) but barely drag myself in for my bone density tests.  I had back pain and only went for the MRI because my husband went with me.  I barely make it to the oncologist's office for my 6-month checkups.  I am scared to death of finding out any more information about my health.  I truly think my coping skills are just burned right out.  I had a lot of trauma/drama throughout my life, and I think the breast cancer, loss of my boobs, and a profound aging of my mind, body, and soul were the last straw for me.  My GYN doctor always wants to do uterine biopsies because of the tamoxifen and I have literally not gone for them.  I am sick of being sliced and diced and poked and prodded.

So, I have a great prognosis but that is just what it is, a prognosis.....a guess at the outcome of my diagnosis.  There is no rhyme or reason to who recurs and who doesn't.  Yes, we have a "better" prognosis but we did have invasive cancer too.

i did alot of reading after i was dx'd and searched the net for all kinds of prognosis info....then when i asked my onco about it he gave my husband and i the answer 50-50...well hell i knew that before i ever walked in the door!!!! He went on to explain the treatment plan, doing all we could do to fight it effectivly..and giving it our best shot. He is an encourager and cutting edge...BUT you can read between the lines because he wants my port to stay in for at least two years...I knew why..hubby asked and got a sheepish look. I turned to him an told him..because it's a high chance of recurrance...we need to make two yrs.

You just have to come to terms with your dx and know that noone knows what causes it to come back. I have a friend who had a very poor prognisis with over 20+ nodes and so far she is a over 12+ yr survivor. Another only had two pos nodes and hers came back quickly in the nodes in her neck. The bold truth is while we may want to look at the figures, they are just that, figures and doctors, scientists and research CANNOT predict our outcomes. We just have to live our lives and take things as they come.

I worried about prognosis when first diagnosed and researched endlessly, but after reading here at this site I have found that so many prove the stats wrong it is better to just use them as a tool like tumor markers, and other tests like my oncologist does. we will always worry, is our nature

Sure, I want to know my prognosis.  For me, numbers help me determine what choices to make. 

I have LCIS (with about a 1:10,000 incidence for my age group), and a type of systemic scleroderma (lcSSc) , which one paper says has a 5-20:1 million incidence (I think this includes both systemic types).  So there isn't a whole lot of information because they are unusual conditions.

I was told at a major NCI institution my risk for bc is somewhere 'between 10-60%, but a lot closer to 10%'.  I think that's a rather large range. 'They'd have to look at journals to find a more accurate number' (which of course I had done. A major reason why I got the consult. Oh well.)   The latest paper I could find on systemic scleroderma gave a mean survival of about 11 years after diagnosis for my type.  

One paper opined that the famous modified Gail model for bc gave a prediction for an individual (no previous history of bc) as better than a coin toss - but not by much.   http://www.ncbi.nlm.nih.gov/pubmed/17148763

I have a PTSD-like syndrome too, from many traumas.  That predisposes you to have increased anxiety and feelings of decreased lifespan.  

If I had a better idea about my bc cancer risk, and my risk for lymphedema with lcSSc and BPMs, it would help me make a decision about whether or not to get BPMs (assuming I could find a surgeon to do them and my insurance would cover.)  I cannot have rads (if I got DCIS/invasive) due to the lcSSc.

So, sure I'd like to have a better idea of my prognosis, but I don't think its going to happen.

At first, when I was first told of my BC, and was very very afraid........I wanted to know everything. .............especially my prognosis.  Perhaps this was because I have a family and wanted to make certain that my affairs were in order .......just in case.  If you havent done so there's nothing worse than dying without havng made a will and provisions for ones family. 

Knowing ahead of time gives an advantage over not knowing.  You get to prepare.  You get to do your best for the ones you love, you have time to realize that if you haven't already.........you had better get out and start finding meaning in and enjoying life.  

Knowing your prognosis and if it is not good...........means you have time to decide whether to pull out or make your  'bucket list.' 

Being taken by surprise, especially death by surprise, is not a pleasant surprise at all......not for anyone.   Knowing ahead of time gives the same advantages for friends and family as it does for you.  Sometimes they need time to prepare as well. 

I also agree with Debonthelake in that knowledge is power.  Knowledge will help one to advocate for oneself.  Knowledge makes one a co partner in ones own care! 

Yes, the recent development of my wanting to hide my head in the sand is different from wanting to know my prognosis in the beginning.  I think my problem is that I do not truly believe my prognosis.  Mentally, I am preparing myself (if that is even possible) for it to come back...I tell myself it is not "if" it comes back but "when".  Maybe this is the pessimist in me (which more than one person has told me I am) or maybe it is my way or preparing for the worst and deep down hoping for the best.....I don't know.  So, even though I wanted to hear that I had a good prognosis, I do not believe it.  And, this way of thinking is probably based on all the experiences I have had in my life.  I always used to be happy-go-lucky, optimistic (when I was much younger), and a dreamer.  Now, I am quite the opposite.  Life has a way of beating you down, I think.

So, in a nutshell, yes, I wanted to hear my prognosis but only because I found my cancer early and had hopes that it was a good prognosis.  What I have done with that information is probably quite the opposite of what I should be doing though.  My prognosis is based on the fact that I did everything my onc told me to do....bilateral mast, chemo, tamoxifen.  Supposedly, each of these steps made my prognosis better.  Now, I am still being told to do things, but as I tell my onc, I have become a very bad patient.

Edited to say:  Baywatcher, I totally agree with you.  I am the exact same way.  I just don't want to know anything.  It only brings it all back when you have to have tests or walk into the doc's office.  I don't think you are weird.  I just think there are different ways of dealing and this is the way we have chosen.

I'm getting there - almost burnt-out - but I have no choice right now but to go to my follow-up visits with my plastic surgeon after my surgery on July 10th to repair the hernia; hopefully he'll remove my drains. At this point in my life, my mind has detached emotionally from my body - I make doctor appointments like I'm just a secretary - I've become much more organized. In the past I used to "forget" to make appointments (including my yearly mammo, which I "forgot" for 3 years in a row - all because I felt healthy, wealthy and wise back then, lol! Nowadays I can't afford to be "forgetful" - at least not until my body is repaired. The benefit to being better organized and emotionally detached is that I'm more organized in helping the rest of my family make their doctor appointments - not an easy feat considering my two daughters are 5 hours away in college and my DH hates to go to the doctor. So..........in a nutshell.........even though I emotionally feel burnt out, my brain won't allow me to nuture that feeling. I don't have the luxury of good health right now to ignore my doctor appointments - and I for one am grateful that I have good enough health insurance and live in a metropolitan area where there are outstanding doctors who can help me - and that includes my oncologist who is always optimistic about my prognosis - which helps me to stay optimistic (even though I get scanxiety - and continue to find scary medical articles online about how BC can spread to mediastinal lymph nodes, etc, etc) - I try to keep things in perspective and do what I can within my own power to stay healthy - with knowledge comes power - oftentimes, I feel like putting my head in the sand, abandoning BC.org and just "move-on" but I can't.

I just finished radiation, after having a lumpectomy and chemo earlier this year.  It felt good to look at my calendar and actually have four weeks before my next doctor appointments!  Right now I seem to be completely obsessed with my prognosis.  Since I have an aggressive form of bc (triple negative), I'm almost expecting a recurrence.  Also, I'm waiting for my BRACAnalysis to see if it's genetic.  I made it through treatment with a very positive attitude, but now it's hard not to be negative sometimes.  I'm hoping that this anxious feeling will fade with time and that I can go on with the rest of my life without the feeling that the other shoe is about to drop.

"Do I want to know my prognosis?"

Well...I do know my prognosis.

And, I (eventually) learned that whatever it's going to be...it ain't today.

tl