Don't we deserve diagnostic follow up?

I'm only 32....but I am completely ok with the idea of no scans unless a symptome arises. When I had my first mammo on my healthy breast last year..I was a wreck! The techs had to take me to the back door. The anxiety that comes with scans ect are tooo much for me.

Like Annanne said, the false positives are common too. I know others wh o feel like you will come shortly, I guess I'm a minority..lol

Be well.

I just happen to see this in the active topics and I hope I can give you a little reassurance on this.  I have mets to my bones and I had found the disease on my own.  The oncs don't like to run annual or semi annual scans for numerous reasons.  Your body has been thru alot during your initial run with breast cancer.  Exposing your body to more radiation is not a good thing and that in itself can increase your risks of developing more cancer in your body.  Most people that get dx with mets tend to find the disease on their own from symptoms of the disease.  The norm is usually bloodwork to watch for any cancer activity that may be going on in your body but that isn't reliable either.  PET scan are notorious for false positives so why put yourself thru the anxiety of scans.  Even without the false positives, every time you have a scan it will throw the cancer in your face and interupt your life.

It is better to get back on with your life and try to get past the cancer world.  Don't live your life waiting for the cancer to return.  The stats show that most people take care of the initial cancer and you will nevere see it again in your life.  Wouldn't you rather just live your life and turn the page on this awful chapter in your life.

I was dx initially at age 36 and my mets were found at age 43.  I had 8 glorious years before cancer darkened my door again.  When I had my first round of cancer the internet was not in every household yet and was expensive to have monthly memberships for.  Needless to say there wasn't sites like this then either.  I had no clue that there was such a thing as mets or to watch for this disease could do what it is doing to my body now.  Personally I am glad I had those 8 glorious years not knowing anything about mets.  My life would have been miserable if I would have been at the oncs office constantly just waiting for cancer to return.  You just have to have confidence in your onc that he will pick up on something if it is happening to you.  Also if you do become symptomatic your onc should order scans for you.

I know this isn't the answer that you want but that is how this game works and I agree with it. 

Joanne,

I agree with what has been said above about the merits of scans, but I also hear what you are saying about not wanting to "throw in the towel."

There's a physician/author who felt the same way you do and set out to learn what he could about lifestyle changes he could make to reduce the risk of recurrence. He combed the medical literature and compiled what he learned into a book, Anticancer: A New Way of Life. The author is David Servan-Schreiber.

I think the positive steps Servan-Schrieber describes in his book (including diet, exercise, stress management) are helpful whether or not the cancer comes back and the exercise especially helps reduce anxiety so you can get on with your life.

Good luck, Joanne. I hope you never meet mets, but even if you eventually do, there is still a lot of fighting that can be done. May you live long and well.

Anne 

My onc doesn't do scans routinely either......makes em nervous but she is supposed to be one of the best in the States so I have faith in her.......She once told me she would not let any mets get too far before diagnosing them so I guess she knows what she is doing......I think the world of her....Oh and the funny thing about her is she looks and sounds just like Martha Stewart!...I kid you not!......And she is s weet heart too....She takes as much time as you need to discuss things with you.......

There has to come a stage when those who have been treated succesfully can attempt to move on and try to live life as normally as possible. Routine testing can't be practical, for the reasons already explained-nor desirable for many. By the nature of it, those who would want closer follow ups are going to be  worriers by nature (or they'd try to put their illness in the past, until/if  there was cause for further concern!) The systems are stretched and over worked. We often read posts about people getting anxious as they have to wait several weeks for screening-imagine how much worse it would be if everyone who had had cancer had routine testing too? 

Joanne, if your real dilemna is accepting that if you get a recurrence it will be terminal-that's a slightly different issue. Sadly, metastatic cancer is terminal,and no amount of testing is going to stop it happening. Even if found early, the consequences will still be devastating. Perhaps if you work to seperate out these two issues-try not to focus on the disease returning. Live your life as best you can. If it does return, and you have continued in the intervening years to stress and worry, then you'll have nothing but regrets for wasting the "good" years when you were healthy and could have been enjoying life. Good luck,x

Joannem65,  I feel the same way you do...and since I was dx with bc over 3 yrs ago I've seen this discussed several times and some rather not have scans due to the anxiety it causes.  But my way of thinking is I RATHER know if I have a recurrance...and the sooner the better IMO.  To me its like walking into a house and you have a SMALL stove fire...do you wait to call the fire dept after it spreads to the roof.  (No...the sooner you put water on it the better your chances are that you'll save the house.)

What this boils down to in my opinion is its all about "Profit over Patient".  Scans are expensive...so they don't want to order them unless they absolutely have too.  I've been with my primary doctor for 30 yrs and he admits to me how things are for doctors these days. (Insurance companies get inbetween the doctor/patient relationship.)  With HMO's lots of doctors get in trouble for ordering too many scans...some times they are threatened they will be fired if they don't keep them down.  So some doctors are willing to take chances with YOUR life that the symptoms your complaining  about are NOT a recurrances.   

I've been concerned about my lungs since last November but CAN'T get any of my doctors to order a scan and I have been scared to death.  The anxiety this has caused me is in excusable.  I would NOT want a PET/CT scan unless I REALLY felt it was necessary...and right now I need one.   I realized lots of woman rather not deal with the scan anxiety...or possible false positives...and that I DO totally understand.  But speaking only for me...I personally feel better when I have a scan and get the all clear...especially when I'm having symptoms.  (Its all about saving money.)  JMHO    I feel just like you...we go thur heck and back to beat cancers butt...then they send us on our way...its just not right.

 Chelee