Use PET scans aggressively for recurrence and NED status!!!!

Actually, current research doesn't support the use of routine scans like PET scans for women who don't have symptoms of metastasis.  That's because they have high rates of false positives and earlier diagnosis of metastasis doesn't result in longer lives.

http://www.breastcancer.org/symptoms/testing/new_research/2006_07_19.jsp

I'm glad that they found your recurrence and that you're getting the treatment you need.

Lisa

I believe in the yearly scans to check for mets,  I do not understand when they say it does not matter when you catch it, early or late.  How can that be.  My doctor does not believe in scans unless you present with symptoms, well you bet that every year I present with symptoms just so I can get scans.  I have insurance and that is what it is for.  I get so pissed that the insurance companies don't want to pay for a scan...........

I say lie to the doc if you want to get a scan.  This is your body and you are the one that has to live iwth this not some stupid doctor or insurance company.

sorry I get very heated over this topic.

Randi

ravdeb - I agree with you completely.

I agree with using PET scan aggressively as well. I don't understand how someone can say that if it is has spread it doesn't matter if you catch it sooner or later??!! Is a cold not easier to treat before it turns into pneumonia?? I realize that is simplifying things but my cancer was found in my lymph nodes and I find it hard to believe that I will not live a lot longer life if I can contain it before it spreads to soft tissue organs. BTW... I will be having another PET done in about 2 weeks so please keep your fingers crossed for me!!

I know the last comment here was a while ago but after reading this thread I just have to put my 2 cents worth in.

GET A PET SCAN-clear and simple. They may not show the really small tumors but any ones that are metabolically active will show.If herceptin isn't working you will know that earlier and can move on to Tykerb. So many doctors are going by the old models of treatment (and old these days may be just last year)



Make sure your PET scan is a PET/CT scan



There is a new way to do bone scans PET bone scans with Sodium/Fl-18. The scans are much better than regular bone scans. The cost is more but many imaging centers will do them for the price of a regular bone scan. I know these are being done in seattle and portland for sure.



There is also a new way to image breasts. PET breast scans(called PEM scans) and BSGI breast scans. (for those who still have breasts of course- Not for me anymore). With these scans you get injected with either the PET tracer or a another tracer and then get imaged just like a mammogram. These scans are now being used by some surgeons to see if there are any metabolically active tumors that don't show up on mammos, ultrasound or MRIs. I actually had a second unknown tumor that was found on the PET breast scan so I opted for a double mastectomy instead of lumpectomy.



I think we all have the right to ask for the most up to date treatment whether it's chemo, imaging or what ever is coming up. I get mad when I head of docs poopooing our asking for the latest.

I do have more info on these newer scans if anyone is interested



Let's stay strong



Henny

I couldn't disagree more.  Studies show that women who had regular PET scans actually lived a poorer quality of life than the women who were only scanned if they presented symptoms.

PET scans can have a lot of false positives, and create anxiety and stress in the days leading up to and after the scan.

I think in the case of the original poster, to be dx her2+++ back in 2004 was a scary thing.  I know, I was there.  We had to fight, b/c the FDA had not yet allowed early stage BC the use of Herceptin.

I, like the original poster, did 8 rounds of dose dense chemo, and had bilateral mastectomies, HOWEVER, I finished in early 05, and finally the FDA came to their senses and approved Herceptin.

The rate of recurrence after getting Herceptin is so small, that it further supports NOT having scans unless you present a symptoms to your oncologist.

When I finished Herceptin, I felt like many of you do.  I thought I needed to be scanned, and I was scared, and sometimes I would think I had a pain, that might have been real, but certainly wasn't cancer, and I would make my onc give me a bone scan.  I used to justify it to myself by saying, oh I need peace of mind, so it doesn't matter.

Then time went on, and I stopped feeling like this.  Now, as I approach my 4 year anniversary, Not only do I NOT want to be scanned, I FEEL 100% normal. 

Studies show that the rate of survival does not change, whether you find mets from a routine scan, or if they were found out another way (like breaking a rib from coughing, or something to that effect).

I know the fear of mets is scary.  We see sisters here that are fighting every day, to manage the beast, and get their mets stable, if not NED.  But, uneccassary scans are not the answer to overcoming your fears.

JMHO.

Like everything in life you have to weigh the benefits vs the risks or discomfort. It is no different with trying to decide the best course of action to keep yourself as healthy as possible.

That said, I need to comment on the utility of PET and other imaging. PET has a very high sensitivity(the probability that if one does have disease it will show up) and specificity (the probability that if nothing shows on the scan there is really no disease).Sensitivity and specificity are greater on the PET/CT scans than they were on the older PET only scanners.  The study referenced on this site by Carr et al is using an older scanner-not a PET/CT scanner so I take that study as good for its time but better things are available now.

Medicare just put out a study last week with 22,995 patients (who had all kinds of cancer) and PET changed planned treatment for 48% of the patients.

I know this is a lot of detail, but I am a huge believer in using our technology to find out as much as possible-imformation gives us power over our disease. We have to understand that no one test (and sometimes none of the tests) have a 100% batting average.

I do agree with you Beth, that tests can cause a great amount of anxiety. No one ever wants the bad news that they can give. Also the further you get out from diagnosis the less necessary the tests are. At 4 years out I most likely won't get yearly PET/CT scans. But if I had breasts I certainly would get yearly mammos and MRIs for the rest of my life.

Goops, I am thrilled your tests all came back ok. There are a few things that could cause your lymph nodes to light up on the PET scan- like bad injection, being very cold before the scan, or muscle uptake from lifting weights. Thank goodness your onc followed up and didn't just say lets wait and see.

So my final thought now is that we all have to do what is comfortable for us and for the doctors we trust. If having to deal with sorting out false negatives and positives is too stressful then don't go looking for trouble but if you want to know as much as you can then stress is ok to get to the bottom of things.

Henny

I posted a thread without much response, yesterday asking the difference between a PET and a bone scan.  So..this thread has been very enlightening.  I have had 2 PETS within the past 2 years, and a bone scan and several MRI's.  My GP has suggested for me to get another PET and bone, but my onc has ordered just the PET.  So I have been doing some research as to what the PET does.  I guess it fits what my symptoms are.  I have been going to my GP for 3 months now, and trying all other options.  I also feel like I don't want these things done unless its the last option.  For me, it does take a mental toll every time I have to undergo a test.  I've been trying to get to a point in time where I don't have to do any of this.  So..in that respect I do agree with Beth.  The more I can stay out of that office and away from the hospital, the better for me.  But..I guess when needed, I am glad the technology is there.  A double edged sword for me. 

g

Pam,

The Breast Book by Susan Love used to be THE book you always got and read when dx'd with bc.  I don't see as many people referring to it now as they once did.  There is a wealth of info packed into her book. 

I am so sorry that you are having to deal with mets.  I hope Herceptin is working for you.  It scares me because I was dx'd last May at age 51 with congestive heart failure from the Adriamycin.  Herceptin can also be toxic to the heart so if I developed mets, I doubt I would be able to take this wonderful drug for HER+ women!  Like I said....it doesn't make sense.

Debbie