What sort of tests

bobbiw · 03-26-2007, 06:02 AM

I am nearing the end of my Herceptin journey (should be done in June) and have always wondered what sort of tests are done to assure that a reccurance has not (or has) happened. I ask my onc and he says not to worry. I really dont worry that much, if it does happen we will deal with it. But I would like to be educated you know?
Bobbi

Mary Jo · 03-26-2007, 07:33 AM

Hello Bobbi,

My oncologist does not do any tests once treatment is over and neither do most. Some will agree to them but most do not. Me and my onc. (who is also a breast cancer survivor) had a lengthy discussion about it. She explained how most tests aren't very conclusive. For example a pet/ct scan will not find a "clump of cancer cells" about 1/2 the size of your fingernail and there are many false positives. The stress of going through these tests and many false positives also needs to be weighed. It is very stressful to go through this. My onc. does routine blood work - looks at liver counts - something with the bone and basic routine blood work. She examines me thoroughly - asks me lots of questions and that's it.

Although, I'd love to know that "what ifs" associated with this disease and have concrete answers ALL OF THE TIME -

that just isn't the way it goes. As you said - what will be will be. My onc. also went on to explain that doing tests and not doing tests statistically shows no increase in survivorship. So.................I guess we all have to do what we're comfortable with. I for one, agree with my onc. HOWEVER wishes there were better ways to check for recurrence with flawless results BUT so far that just doesn't seem to be the case.

Living for today.............................

Mary Jo

Mary Anne in TX · 03-26-2007, 07:52 AM

Hi Bobbi!
I finish Herceptin in June also and have wondered all the same things. I appreciate you starting this thread. I see my onc on Friday and will ask him the plans for me. I wish I trusted myself more to notice any changes, etc. ma

suzan w · 03-26-2007, 08:42 AM

I finished Herceptin in Oct. My onc. does not believe in 'routine scans', she feels that there are too many false positives, etc. I see her every 3 months and have blood work-including tumor markers. I am always on the alert for anything that seems "off", although I will admit that there are days when everythng feels off and I worry about a hangnail. I think one of the most important things I do for myself is stay current with all the news, and with all the courageous women on this board who are blazing the trail!!!

Jean · 03-26-2007, 09:06 AM

I am finishing my herceptin soon also. Gee, the year went fast!
(I guess it is true that time flys when your having fun)

I will check with my onc. as to what he plans and not plans on?
But, for me I am certain that I will be doing some form of scan
at least once per year. We should also consider a Brain scan
at least once per year. Will update you. I am finding that most
dr. DO NOT recommend scans without some smyptons being
present. I know my onc. does not do markers.

I already have in place a schedule of breast MRI and Digital mammo.
every 6 months alternating between the two. (hoping that covers
any local recurrance issues if needed).

Congratulations on your up-coming completion of herceptin!
HUgs,
Jean

Hopeful · 03-26-2007, 09:38 AM

Here is a link to a timely abstract: http://jco.ascopubs.org/cgi/content/abstract/25/9/1074

Hopeful

lexigirl · 03-26-2007, 02:20 PM

My onc will only do a scan if I have a symptom. I was a bit shaken at first at the thought of no routine scans. However, as more time passes since my diagnosis, I am more comfortable with it. I get really anxious around scan time. I guess I will continue to play the wait and see game!

Congrats on finishing up your tx! I hope that you do something nice for yourself!

Lexi

Marlys · 03-26-2007, 03:15 PM

I believe I missed seeing my oncology nurses the most. Especially after every 3 weeks for nearly 2 years. So far I am getting regular follow up with both the medical & radiation oncologists and am quite satisfied with that.
My medical oncologist has left and I haven't met the new one yet so I don't know her approach to treatment. I do believe that my treatment center pretty much follows the route of no scans unless indicated and rarely does tumor markers as they are considered to be to unreliable much of the time. I firmly believe that stress is the greatest ally my disease can find and I refuse to give it any advantage!! So for me it is one day at a time and trust God to see me through.
Love & hugs,
Marlys
P.S. That does not mean I don't do the footwork that is expected of me. I take better care of myself as to diet, excercise, and signing on this forum every day for my strength and hope!!

hutchibk · 03-26-2007, 11:47 PM

When I finished my initial cycle of chemo in 04, my onc told me he wanted to keep me on a 3 month check-up schedule until about 7-8 years out. He doesn't like to take chances with Her2neu.

We did tumor marker and blood work every 3 months. (the tumor markers have saved my life twice, as they have corresponded directly with both of my recurrences and have given us very early indication to follow through with scans). We also did bone scans every 6 months. About 6 months out I had pain across my chest and under both arms as well as the unaffected breast. We did a breast MRI and nothing showed up. I went to my Plastic Surgeon and he said that I had formed scar tissue around my implant and that it was causing the pain. He could remove most of it surgically and it would relieve the pain. (He was right)

I waited about 6 months to do the surgery. About a month before the surgery, we noticed in my 3 month check up that my tumor markers had started to inch up. My onc said to get the surgery out of the way and then we would talk about what to do or if we would just be on "watchful waiting". Well, the surgeon removed the scar tissue and sent it to pathology and the pathologist found a very small spot of tumor that had come off of the muscle under the implant when he took out the scar tissue. So small that the surgeon didn't even notice it. Well, this sent us on a frenzy of scans (CT, MRI) that revealed nothing else until we did a PET, and it revealed very small mets in my lungs, chest nodes and a small rice size tumor in an under arm node. Jumped right back into chemo, Taxol/Herc/Carbo.

After 6 months on that cycle, my tumor markers had dropped down to below 10, so my onc kept me on Herceptin and 3 week check-ups, and when nothing new showed up, he decided it was OK to move me to 6 week check-ups. On my first 6 week check-up we found again that my tumor markers were inching up. We immediately did bone scan and PET/CT. Sure enough, the 3 small chest nodes were shining again, as well as a little spot of bone mets on my cervical spine at about C2. And here I am today... Taxol/Herceptin indefinitely.

I don't know if tumor markers are as accurate for everyone as they have been for me, but I love them. They have saved my life twice now, by giving us the earliest possible indication that we had activity.

bobbiw · 03-27-2007, 12:20 PM

Thank you all for your replies it is all very helpful to me.

We are all, each and everyone of us, a bunch of couragous gals arent we.

Bobbi