STAGE-3C

I get physically sick when I read about statistics.  I think about reoccurence when I wake up every day and I think about it when I go to sleep every night.  I feel positive about my treatment and progress thus far, but reality about the node involvement scares the Heck out of me.   I take tumor marker test every four months.  Yeah I know lots of doctors don't use them as they say they are not reliable. But if the numbers start to teeter back and forth, its an indication that something might be wrong.  It doesn't hurt to have it done, its just a simple blood test.   But I'm curious about treatment for ER/PR+  I had a mastectomy two months before starting six rounds of Taxotere, adriamycin and cytoxan, 33 rounds of radiation and now Tamoxifen.  Whats the difference between Taxotere andn Taxol?

Your Oncologist should run them periodically for you, have not ever rec'd your lab reports? You need to start saving them. The markers are CA 27.29, CA 15.3, CTC (Circulating Tumor Cell) BRCA, chemo sensitivity and functional cell profiling are done by specific companies which insurance may or may not pay for but the tumor marker tests should be covered.

Your Oncologist should run them periodically for you, have you not ever rec'd your lab reports? You need to start saving them. The markers are CA 27.29, CA 15.3, CTC (Circulating Tumor Cell) BRCA, chemo sensitivity and functional cell profiling are done by specific companies which insurance may or may not pay for but the tumor marker tests should be covered.

Kathleen--thank you for posting this calculator. Do you (or anyone else) know what is meant by a first versus second generation chemo? I'm not sure which one I had. It was DD A/C followed by DD Taxol.

I am a stage IIIC er " out" 7 years and well!

 It is totally normal to be concerned with " stats" and have fears of recurrence in the early days after our dx.

The reality is the "stats" are not accurate  for a slew of reasons and anxiety is perfectly normal after the stress of our dx. Also, please keep in mind, as a stage III BC we are given the " big Guns" for tx, which ultimately helps in the long run.

I promise you all that with time the fear diminishes and you will get your life back.

I wish you all better days ahead!

Ladies,

I know nothing about the tumor marker blood work.  I would always have blood work before chemo, but nothing was ever said about this.  I also had NO scans prior to surgery other than the MRI on both sides.  Mastectomy on left with node involvement and I had clean margins as far as I can see in my pathology report.

My report is in complete and says that ER/PR results were done previously.  I am in the process of retaining those records because now I am concerned when I read this.  I do have a copy of all blood work done and going to go check that now to see if I can find anything about the tumor markers......but I already had surgery so Im confused as how it works.

If someone could help me sort this out before I go to my 6 month appointment, I would appreciate it.

Cindi

See, that's what Im saying.  I had very little of that.  I had surgery, followed by A/C and Taxol, then rads.  Finished that in January and started Tamoxfen in February.  I am also ER+, premen.

I had a spine MRI due to stiff joints (which disclosed 2 buldging disks and one herniated)  Brain MRI because of headaches (and I told him that it was allergies/sinus)  But he wanted to run it anyway.  However, when I ask about a PET scan he says that it is bad med.  There are several women on here that say they have NOT had any scans.

I would also like the hysterectomy, but he frowns on that.  Says that it causes everything to start dropping......Really? Do I care?  Just how stupid is that?  I am left with one boob to drop, why would I care if my guts were sagging....I just want to live and cant seem to get past the fear and how much I want to be with my family.  I know I have to move on, but cant.

Above Vacationbound talks about markers,  I see nothing that looks like that on my lab work from my tx days. 

This posting has encouraged me to call my onc and push my July appointment up.  I will be seeing him tomorrow.  I shared with the nurse that sometimes not knowing was more painfull than waiting for test results.  She was confused also as to why he doesnt want to do the scan.  She said typically a scan is done in the beginning to use as a baseline and then again when treatment is done.

PLEASE, offer me suggestions as what to talk about with my onc and what type of educated ?? do I need to ask him.

I am making a copy of my address/saved members from BCO to show him a list of all you wonderful ladies that have been fighting this to win the pink battle.  I will check back later tonight.

I wish I knew how to start a new thread "be prepared to meet with the doc" "stage 3/living well"

If nothing else.....thanks for listening.

Hugs to all

I've never had my tumor markers taken. The ASCO (Society of Clinical Oncologists) guidelines are for them not to be done in non-stage IV patients. They are just too unreliable.

Cindi, the CT scan is not used by all docs, and I am inclined to talk mine out of it. It is a lot of radioactive exposure and apparently has a lot of false positives. So the scanning business is not so simple.

As for the hyster, talk to a proper gyno. If they take everything, you can have problems with your bowels and bladder, that is what your onc means. He is right, and it is  not something to take lightly. BUT, if they leave in the cervix and the neck of the uterus, you can ususally prevent this. So you need to talk to a surgeon who knows his stuff. I had the partial hyster done with da vinci surgery and it was easy and I am fine. 

Cindi - I began my journey as a stage IIIc with a very aggressive tiny tumor (1 cm tumor and over 17 positive nodes).  I was BRCA tested due to family history (negative).  After mastectomy, I had a PET/CT scan, blood marker test.  Blood marker test showed no irregularities and scan showed no cancer presently detected.  After that, I went into a pretty aggressive treatment (dense dosing of 4 A/C, then 4 DD T - 8 total infusions), then onto 35 rads.   Began Arimidex in February.  

In April 2012 (one year later) I had a clinical exam by GYN, breast surgeon and radiation oncologist when I was released by all of them after treatment and then moved onto the tests.  I had a mammo/ultrasound, pap smear, colonoscopy (these last two were overdue procedures which they cancelled while in treatment).  I had to have a bone scan baseline since I am on Arimidex.  The onc said he does not run scans or blood marker tests because of the false results.  If I have a specific problem, we will revisit a scan but he says, as above, they don't want to expose us to any more radiation than is necessary.    I was advised to have my GYN appointment and my breast surgeon appts spaced 6 months apart.  That allows for two clincal exams a year by medical doctors in addition to what you should be doing yourself.  My mammos are on a 6 month schedule unless there is a problem.

My first oncologist explained everything along the way as he was doing it.  He retired and I find that with the new Onc, the only way to find out stuff is to gather questions before I go in and I have to ask.  This new onc is good but just doesn't offer information freely like the first one did.  Sounds like your onc is the same and if so, you will have to be your own advocate and ask questions.  I have a friend who battled cancer with another onc and I bounce stuff off her also and from what I've seen, most of this stuff is protocol stuff based on each of our situations and receptor testing from our tumor dissections.  So, one size may not fit all but my friend is not having scans or blood marker testing either and she's seeing another onc from another medical group.

I'm a 3C and I had great doctors yet always felt like they weren't as quite as hopeful as I was-one did tell me my prognosis was poor-I had 22 pos nodes. Well, that was almost 6 years ago- no recurrence- no mets.



I think several years ago 3C was a very poor prognosis (3c is a new category-like someone said above it lumps a lot of people together), Even though they don't have the cure and the treatments have a lot of side effects, the drugs are more effective. The Aromatase Inhibitors are powerfully effective.



Ignore the data - it always lags behind the current state of treatments!

You ladies are all so great.  You have really picked my spirits up.  I guess it is just time to move on and try to stop worrying about everything.  Wishing everyone the best of health.

Weesa, thank you for the PM it was great to hear from you.

Hugs,

Cindi

Cindi2011 -



does one of your bike trips happen to be to the Sturgis Rally?

Cindi -



Many times. I'm a "lokel yokel" though who drives there. Live about 30 miles from Sturgis. Definately an experience worth doing! If for no other reason than to say you've 'done Sturgis'.



I can understand wanting to have a Harley to come BUT why not do it with what you have and enjoy it and then come back later and do it again when you have your Harley? There are many (if not most) who are not on Harleys.

This is a govt guideline that say's tumor marker testing is accepted in Breast Cancer