I will not put my head in the sand

pip57

I don't want regular tests and scans.  I did get annual mammos and when the 'small lump' was finally seen it was followed up with US and assumed that we got it early.  Ha Ha.  When the eventually removed my breast (bad margins) they found it FULL of cancer.  So I don't put a lot of faith in scans.

My other reasons are:

1. I do believe that over testing can be harmful to our systems. Studies are starting to support this.

2. I have heard of too many women who get 'clean' scans just months before experiencing new symptoms. My close friend celebrated her clean tests done at Duke.  She came home to Canada and 2 months later was found to be stage IV. My lesson from that was...clean scans today only means the tests did not pick up anything today.  Tomorrow is a new day.

3. Scanxiety is stress.  Cancer feeds on stress. 

4. Stage IV is stage IV. Nothing good about that.  If I can live life a little freer with my head in the sand, then that is what I choose.

However, I do believe it is a personal choice. Our life experiences dictate our choices and mine have lead me to limit my tests to only check out suspicious changes or symptoms.  

DebRox

Cool breeze: thank you for your insightful post. It couldn't have come at a better time. Thank you for taking the time to post. Wish you all the best.

coraleliz

Hmmmm, they let us decide to do chemo or not, rads or not, AI/Tamox or not, so why not let us continue to dictate our care. We should be pretty good at weighing  +'s & -'s. Just my thought reading these posts............I'm still in RADs so I might be speaking prematurely. I'm not sure I trust "anyone",  to make decisons  Actually, I hope I can move away from cancer as it's been suggested here.

Foxlairfrm

I don't think anyone here should tell anyone else they are wrong. This is a difficult journey - a personal journey. One which we all handle differently. I am confident that most here can discern which information is right for them. Whether it is to be scanned or not, to do chemo or not. Ultimately the choices are YOURS and yours alone. The information gleaned here is exactly that - information on choices others have made, what is available currently that you may not have heard or know of.

The choices others make about their healthcare in this silent killing disease is not wrong if they have made that choice.

An aside for non stage lV's. I was not always stage lV. I was VERY attuned to my body. I did not obcess about having cancer for 14 yrs. I lived a great life but kept an eye on things. There were NO symptoms to report until my arm broke. Scans and bloodwork may not be the answer but you cannot depend on feeling something strange to report. It's a silent killer. My point is - do whatever is comfortable for you to keep an eye on things - but DO keep an eye on it.

May all of us live long and healthy lives!

Foxy

annettek

Thank you Foxy- you said it all. I really freak when I read anything anywhere on here or anywhere saying DO THIS DO THAT.....not only is it irresponsible it could be so wrong.

mebmarj

This is just my opinion. I was dx in 2003 at the age of 32. IDC 1.8cm, grade3, no nodes. Did lump, re-excision, snb, chemo and rads. Standard tx with follow up every six months for the last 7 years. Last fall we agreed to go yearly, well past 5 year mark, right? Saw onc, gyn and pcp in between with each doing clinical breast exam, no one felt anything. 4 months later I found a lump, same breast, different characteristics, so it's a new primary. BRCA negative. So lump, margins clear, PET shows hot ovary, BMX, abd hyst and now in chemo and i'll be 40 soon.

This has been hard, but I knew when I found the lump in February, it was going to be a bumpy ride.

I can't agree there's a cure. There is tx and I'll gladly dance with NED forever. But having a new dx makes you really question how, why and what the hell happened for this occur to me again?! So, I'll do my follow up again and hope for the best while doing what I want when I want because I have today to enjoy, no one is guaranteed anything.

Half empty, half full? Just pass the sweet tea on ice and I'll keep enjoying it all whatever comes down the pike. Best wishes to all.

K-Lo

I agree with Coolbreeze.  The best advice my onc ever gave me was, "Go live your life.  Get your checkups, but don't think of yourself as a cancer patient."  I had some really great, worry-free years. 

 The Mammography doctors were vigilant about checking my chest carefully.  They found my recurrences.   I don't regret forgetting about it as much as possible.  First chemo and rads did enough damage to my life at 42; sudden onset of menopause, damage to the "preserved breast".  Not that i blame anyone, its just enough loss of natural living.   The cliche is true: you could get hit by a truck, too.  

Foxlairfrm

Mebmar, sorry about your re-dx. It had been 14 yrs for me. Recurrence not new primary. Both stink.

Wishing you the best.

Foxy

SelenaWolf

All of the above are valid anxieties, but I would offer two things:

1) Many of the women on this site are on this site for the support it offers as they are going through treatment, moving beyond treatment and picking up their lives again, or suffering a recurrence.  Many, many, many more woman come- and go because they successfully complete treatment, do not suffer a recurrence and feel no more need for the information/support that they needed while going through diagnosis and treatment of their original- and only breast cancer.  Yes, there are a lot of women here, but there are many, many more who have moved on.

2) Sometimes, when I read of women who were early-stage one minute and advanced/metastatic within months, I wonder... were they misdiagnosed in the first place?  Did the doctors miss something?  Did they downplay the seriousness of tumour biology just because it was "small" and "node negative" not check everything out thoroughly enough?  Breast cancer can spread in many ways, not just the nodes, so being "node negative" is not as "safe" as many people seem to think.  And some breast cancers, even when found "early" and "small", are great, big fat bullies and should never be underestimated just because they are "early" and "small".

And, finally, there are a number of people out there who - when they find out you have breast cancer - will let loose with their "horror stories".  Without fail.  Heard quite a few myself and got scared to pieces.  Sometimes it gets worse when they find out you are in treatment: I wish I had a dollar for every "chemotherapy-killed-my-[define relationship here]-he/she-may-have-lived-without-it-it-was-horrible" story I heard when I was having chemotherapy.

Yes.  Once you get breast cancer, it is possible to get it again.  You move into a higher risk group than you may have been in before.  And you will, always, need to be vigilent about your health moving forward.  You have no choice.  But... statistics are just numbers, in the end.  Sure, they give us ideas concerning trends and valuable information about who should possibly have more aggressive treatment, etc...  But statistics are not carved-in-stone and are, usually, compiled based on very structured- and diagnosis-specific groups.  The world is a big place peopled with all sorts of women with all sorts of breast cancers with all sorts of outcomes.  And, yes, sometimes the luck-of-the-draw is what helps you survive, but a lot women survive breast cancer nowadays; more women survive than not.  Grab it, run with it, have your annual screenings/checkups without fail ... and don't look back!!!

exbrnxgrl

Selena,

Great post! I love these boards but when one reads about women who have bad se's from this med or that or hating their TE 's, it's not good to generalize that is what happens to most women. Since these boards offer support, I believe that those having problems are more likely to post than those who aren't. I don't think this is a fair sampling of all women on a particular tx.

Many who read my story my think, " Oh no, she went from stage II to stage IV in only two months with a grade 1 tumor!" But I believe, as do my docs, that I was always stage IV. There simply was no reason to suspect a bone met which was asymptomatic. Now, that does make things a bit scary, the accidental discovery of a met, but such is the nature of bc. Could this happen to you? Maybe. Will it? Probably not.

Caryn