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Carol Ann · 11-29-2016, 02:59 PM

I don't think there is any diagnostic test that will tell you specifically what your own risk is. Stages 2 and 3 get scans ... to check and make sure the cancer has not come back/spread. There are overall stats you can discuss with your doc that depend on your own diagnosis, treatment, etc ... but no one really knows for sure.

No scans for Stage 1 is pretty much the standard, I have never had one and I am three years out now. My doc has told me of symptoms to be aware of that may indicate mets ... ongoing pain being the main one.

Having said that ... in general, approximately 30% of early stagers will eventually become metastatic. I do not have the handy cite for this stat, but it is one that is pretty much accepted in the breast cancer community. Your particular risk, again, may be lower or higher.

In the end ... no one really knows who will become metastatic and who won't. It is all a crapshoot. And you are never really out of the woods, no matter how much time has passed. Women have become metastatic after 15 years of being "cancer free."

Check out www.metavivor.org for more info about the need for breast cancer metastasis research. They donate 100% of their donations to research grants specifically for Stage 4 breast cancer patients and metastatic research. Everyone is a volunteer. They are the only breast cancer charity I donate to.

Also, has your doctor discussed either Tamoxifen (if you are premenopausal) or an aromatase inhibitor such as Arimidex (for postmenopausal women) with you? I am also triple positive and I have been on Arimidex since my last chemo treatment, starting while I was still getting Herceptin every 3 weeks. The data for Arimidex says that it cuts the risk of mets in half ... but again, it depends on what your individual risk is to start with , something you would need to discuss with your doctor. Many docs now are urging their early stage patients to stay on it for 10 years vs 5, because there have been studies to show benefit to doing so, over and above the crappy side effects Arimidex and other drugs of this type have.

I wish I could give you a cheerier answer. But there it is.

Carol Ann

11-29-2016, 02:59 PM	#13
Carol Ann Senior Member Join Date: Dec 2013 Posts: 1,045	Re: Her2 + and Oncotype???? I don't think there is any diagnostic test that will tell you specifically what your own risk is. Stages 2 and 3 get scans ... to check and make sure the cancer has not come back/spread. There are overall stats you can discuss with your doc that depend on your own diagnosis, treatment, etc ... but no one really knows for sure. No scans for Stage 1 is pretty much the standard, I have never had one and I am three years out now. My doc has told me of symptoms to be aware of that may indicate mets ... ongoing pain being the main one. Having said that ... in general, approximately 30% of early stagers will eventually become metastatic. I do not have the handy cite for this stat, but it is one that is pretty much accepted in the breast cancer community. Your particular risk, again, may be lower or higher. In the end ... no one really knows who will become metastatic and who won't. It is all a crapshoot. And you are never really out of the woods, no matter how much time has passed. Women have become metastatic after 15 years of being "cancer free." Check out www.metavivor.org for more info about the need for breast cancer metastasis research. They donate 100% of their donations to research grants specifically for Stage 4 breast cancer patients and metastatic research. Everyone is a volunteer. They are the only breast cancer charity I donate to. Also, has your doctor discussed either Tamoxifen (if you are premenopausal) or an aromatase inhibitor such as Arimidex (for postmenopausal women) with you? I am also triple positive and I have been on Arimidex since my last chemo treatment, starting while I was still getting Herceptin every 3 weeks. The data for Arimidex says that it cuts the risk of mets in half ... but again, it depends on what your individual risk is to start with , something you would need to discuss with your doctor. Many docs now are urging their early stage patients to stay on it for 10 years vs 5, because there have been studies to show benefit to doing so, over and above the crappy side effects Arimidex and other drugs of this type have. I wish I could give you a cheerier answer. But there it is. Carol Ann __________________ July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts. Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies". Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow. Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed. Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed. Nov 25, 2013 Begin 6 rounds TCH. March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY! March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks. March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :) April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :) June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia Nov 17, 2014 FINAL Herceptin! Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy. Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend. Dec 17, 2014 Port is OUT! January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)