advice

survivorchick2

G'Day from oz......My name is Celia, I was diagnosed with DCIS in '98...had area removed followed by 6wks radio. It returned, so had mastectomy in 02. Had "bye bye boobie lunch" and took it in my stride, life's too short to let it get to me. Cos of the radio couldn't have implant and not into having Flap method cos I firstly don't fancy further major op and don't have enough skin on tummy to use! Do find the prothesis a pain in the butt tho and so wish I didn't have the radio now and rather been better informed and had the mastectomy first off instead of thinking I could beat it and get away with the area removal & radio only to preserve the boob.

I've been on Tamxifen since 98....and my doc monitors me with blood test for cancer cell markers, since 03. The levels keep going up and down, always above the max too...in 03 it got over 100....37 is the max & I was sent for all sorts of tests that showed up neg.

I'd be interested to hear from anyone else who is being tested, it's called Carbohydrate Antigen 19.9?.....and what about being on Tamoxifen for 7yrs now??? My understanding is it only works for 5 yrs...but when I mention that to my doc, he says he wants to keep me on it indefinately.

I'd be interested to hear from any other survivors who might have a similar history.
Cheers,
CB

I'm 56 but lead v. active life, work p/t and enjoy living exercising by the sea. Go bush regularly with my hubby, am only oz female hardcore 4x4 driver to compete with all the blokes. Have. 2 adult sons

I'd really like to know if any other survivors have same test? cos I really find it so disruptive.....having to front up every 3 months, yet on the otherhand it could save my life!

inspiewriter

I thought after 5 years you would be switched to something like Arimidex, but things change all the time.

Never heard of the carbo-antigen, would be interested in hearing more about it.

jetj

Hi Celia,
Have you thought about getting another opinion?
Janette

fancy2

Quote:

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Have you thought about getting another opinion?

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Good idea. Tamoxifen becomes increasingly ineffective after 4 years. I would think that a switch to Arimidex or Femara is in order. I don't have the study at my fingetips, but I quit Tamoxifen after 4 1/2 years--stuff scared me to death. How old is your oncologist? How up to date is your oncologist?

Mithel

Blood tests for cancer "markers" are unreliable. They basically test for expression of an antigen that is common in cancers, of course your normal cells also express these antigens. Thus the blood tests are just hints of "more likely - less likely" or "improving vs getting worse".

I've heard of (for breast cancer):
CA 125
CA 15-3
CEA
CA 27.29

"Carbohydrate Antigen (CA) 19-9" is used to monitor gastrointestinal, pancreatic, liver and colorectal malignancies. Why would they be testing for it on a breast cancer patient?

Since Tamoxifen is a "blocker" for Estradiol (bad estrogen) I could imagine if you had ER+ cancer active then your oncologist might want to continue the Tamoxifen. What about using I3C or Soy as a natural alternative Estradiol blocker instead?

Beesie

For DCIS and other early stage BCs, several studies have shown that there is no benefit to taking Tamoxifen for more than 5 years. The most recent studies suggest that there is a benefit to switching to Letrozole (Femara) after 5 years of Tamoxifen.

Here's an excerpt from the National Cancer Institute website:

How long should a patient take tamoxifen for the treatment of breast cancer?
Two studies have confirmed the benefit of taking adjuvant tamoxifen daily for 5 years. These studies compared 5 years of treatment with tamoxifen with 10 years of treatment. When taken for 5 years, the drug reduces the risk of recurrence of the original breast cancer and also reduces the risk of developing a second primary cancer in the other breast. Taking tamoxifen for longer than 5 years is not more effective than 5 years of therapy.

As others have suggested, you may want to get a second opinion about your treatment.

jajll

Post-three surgeries for DCIS, six weeks of radiation and two years of Arimidex, I quit.  My hair was falling out/thinning; my nails were paperthin/soft.  Pharmacist friend recommended I3C as a substitute for Arimidex.  Oncologist refused.  Any thoughts?