Confused Follow Up Onc Visits

People,

It's not just a curse, it is a gift as well.  Tell me, do you now take that moment to see a sunrise or sunset?  Do you make the effort to hit the family reunion?  Do you find it in yourself to say you can't do that thing you don't want to do?  Find it in yourself to do that thing you want to do?

As women, we so often live for others that it sometimes takes a large pointy stick to show us it is time to look after ourselves.

On that topic, I'll share.  I'm clear for now, and am planning to spend every moment on this earth in a way I'll be proud of.  No more working weekends.  No more waiting years for a vacation.  If I want to cook all day on a Saturday, well, that is just fine and no one complains when they sit down to dinner.  If I make a double batch of lasagna, I box some up for the neighbors who are out of work.  My 84 year old neighbor fell and had to have her head stiched up.  I sent over flowers and then took warm cookies over a couple days later when she was home from the hospital and up and around.

I have two children to consider.  My stepdaughter is 21 and doing really well,  My dogchild is probably about 4 years old and is doing really well.

Livinglarge, Yes, my puppeh is a golden retriever, and he was a rescue puppy.  If you have any interest, his name is Corona, and he is Mr. July on the Golden Retriever Club of Greater Los Angeles Rescue Calendar for 2012, which has not yet been released.  He was Mr. July for 2011 and 2010 too, all because he was found starving in the forest in July 2009 after it was guessed that he ran from the 4th of July fireworks.  He is happy now, and saves other lost dogs.

New guidelines have now come out regarding the CT and Pet scans of stage 1, 2 and operable stage 3 breast cancer patients. 

http://www.medscape.com/viewarticle/718398 

It is very interesting reading.  And extremely confusing.  I had  a CT of the pelvis, ab, lungs and head and a bone scan.  To me that was way too much radiation but I needed to know.

Now my onc wants me to have another series of scans because I was unable to tolerate tamoxifen.  I have been waivering on it and now I think I'm going to fight her.  It seems like lots of false positives AND false negatives!  

I do get the tumor marker tests each time I go in every 3 months -they do all the bloodwork, etc.  I know many doctors refuse to \use them as they are not accurate - not sure how I feel about it, but insurance is paying, and the way it was explained to me is that they are a "tool" that can point out problems if they continue to rise time after time.  I will say the anxiety is horrible.  I put off my visits, etc., because of the anxiety of returning there and getting bloodwork and waiting on the results.  Last time I didn't call for my results - I didnt want to know; I guess I will get them when I go in on Friday. 

 But I don't know what to think about the scan thing - weird since some doctors insist on routine scans looking for mets

 No Longer Silent About PET/CT

Previous NCCN breast cancer guidelines were "silent" about positron emission tomography (PET)/computed tomography (CT), said Dr. Carlson. But not any longer, because Dr. Carlson and his colleagues felt compelled to make a number of recommendations about the imaging technology in the current update.

"PET/CT is overused in breast cancer," opined Dr. Carlson, providing an overview of the recommendations for reporters.

PET/CT should not be used at all in early breast cancer, he said.

The use of PET or the combined PET/CT is not indicated in the staging of clinical stage I, II, or operable stage III breast cancer, according to a footnote added to the invasive breast cancer workup section.

The reasons for the exclusion include one of the "major problems" with PET/CT, said Dr. Carlson. "There is a remarkably high frequency of false positives" with the technology, he explained.

Dr. Carlson cited a breast cancer staging study from the University of Kansas as part of the evidence. Fifteen of the 83 women in the retrospective study had a "suspicious" FDG-PET/CT. Of those 15 women, 2 (13%) had confirmed metastatic disease, but the other 13 (87%) had false-positive scans.

Dr. Carlson also cited a set of studies that indicated that PET/CT was "not sensitive" in detecting nodal disease in early breast cancer. "The sensitivity is very poor," he said, referring to 5 studies in which the sensitivity of the technology was as low as 20% and no higher than 61% in research that used SLNB as the comparator, mostly.

For whatever it's worth, there is no magical number of years and then you're free and clear.

I celebrated my five years and was still going every six months for labs and mammos.

Last fall I saw three docs who did clinical breast exams. None of them felt anything. The mammo did not see anything. Within 5 months of hearing, great we'll go to yearly appointments, I found a new primary tumor. At that point I was 7 years out. I have no family history, not a drinker or smoker, and BRCA neg. I'm not brave or strong, just doing what I have to in order to see my kids grow up. Mammo still didn't see my palpable new tumor. US said it was worth getting a biopsy given prior dx, gee ya think?

So now I'm down two boobs, uterus and ovaries and a little testy when people say did they get it all? Sure I look good, otherwise I wouldn't leave the house. But like barb said, before I got the official second dx, I was waiting for the other shoe to drop and said as much to my surgeon's office.

No typo seven kids. And at one of my deliveries (not even the last one) the nurse said,"Well you'll never get breast cancer."

Yes life is precious and I enjoy it the best I can.That is why I stopped Femara. the muscle joint and bone pain and the dizzy spells were making life too hard.

With breast cancer you never know if it will come back. With heart failure it is the same thing. 10% of people live ten years and they do not know the long term outlook if it is induced by Herceptin.

 I am not a better person. I am a person trying to push aside two illlnesses that limit my life and live it as fully as I can. When people say be positive, I just think I'm positive cancer sucks. It debilitates good people and takes them well before they have lived to a ripe old age. I see no upside to that,

livinglarge, you are triple negative. When you get to 5 years you can celebrate. I'm hormone postive. Mine is a slower growing cancer and is apt to turn up again AFTER 5 years! Why is the time going so fast????

It really does, livinglarge.  

I'm in the "if it recurs will do so with lightning speed" category unfortunately (IBC), but I don't know yet what my follow-up will be.  The last PET was in May, and I am scheduled through October so I know they're not planning on additional scans until then.  I've had the CA 15 test twice - at diagnosis in September and in May.  I am not really done with active treatment until February - that's my final herceptin.

This is all assuming that nothing pops up in the meantime!  Fingers, toes, legs, and eyes crossed! 

I wasn't put on Tamoxifen or any AIs. My doctor had emergency heart surgery just after my double mast and my file fell in the cracks. It was only from this board that I learned all I did! Now they can use Tamox as a first line if I recur. Doi!

rosemary-b and livinglarge:

I didn't mean to offend.  I went from a 65 hour week down to a 40 hour week.  I started out so angry, only my stepsister who was Stage IV could understand.  She said if I wasn't angry, I wasn't trying.  I lost her in March.  She had gone nearly 8 years as a Stage IV, and wasn't TN, but did turn up with a BRCA gene she had no idea she might carry as she was adopted.

I don't think you need to have seven children to have your life turned upside down.  I never suggested that cancer was a "course in self improvement."  All I said was that that really bad experience made me see things differently.  My Dx was not nice.  I lost my sentinal node and another 4 of the fourteen they took.  I went from a healthy person to Stage IIB in a heartbeat and was told my prospects were not good.  I had a 29% chance of seeing five years if I did nothing beyond surgery.  A 34% chance if I did radiation.  A 66% chance with chemo and radiation.    That made me rethink all those years I worked like a dog six days a week and never took a vacation.  I do things differently now, and for good reason.  FYI, I chose to do extra chemo and extra radiation, and I am still here today three years later.  And I take a vacation of a lifetime every year.  That's my choice, and I'll stand by it.

PS  Nothing pisses me off more than people whose lives are not on the line whining about how no one understands their grief.  That means you rosemary-b.  Stage I, 0 nodes, all positive.  You don't even belong on this board, but you bark loudly, especially about your seven (7) children and how hard that is.  Did anyone ever tell you how to have less than seven (7) children?

Wow dog, that's quite a punch!!! Did you not realize that more stage I and II ladies go to stage IV than stage III's do? Stage III's get the kitchen sink thrown at them. The other stages don't. Now there is a phenomenon of earlier stages moving on and late stages not!! Check out some of these threads. And, node negative? Big deal!! Cancer moves through the intramammary nodes and the blood stream a LOT quicker.

We are ALL just ONE diagnosis away from Stage IV. Cancer is cancer, my dear. Something you didn't happen to learn on your life-altering 'trip'. You failed.

Oh boy yellow dog did you misunderstand. Seven children did not turn my life upside down. It turned  it right side up.It was a great way to learn new priorties. And they were all planned and provided for Yes I know where babies come from It's not like you're the first one who said that to me and no welfare here just a couple of people who worked really hard to have what to us is the most precious thing on earth, children My point was cancer is not the only way to learn new priorities

My diagnosis looks really good doesn't it?  Herceptin almost killed me. My heart function was down so low (LVEF 15 low end of  normal is 50-55) no doctor knew what to think about if or when it would return to normal or how well I would be able to function. Heart failure is a b!+ch too.So are the other life threatening things that have happened since diagnosis

I won't go into any more details because I never meant to minmize your experience, merely to say I do not see the positive in this and can think of more enjoyable ways to learn life's lessons.

Oh and if this thread is a no whining zone I'll leave it. Enjoy life.