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Old 06-07-2014, 01:10 PM   #1
Lani
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Join Date: Mar 2006
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Thumbs up Re: please help! is my cancer worse than anyone else's because it has never went away

Actually your cancer is MUCH better than most

Your cancer has remained Loco-regional rather than distantly metastatic

Almost everyone who dies of breast cancer dies of distant metastasis rather than local or locoregional disease.

It appears your breast cancer likes to travel to lymph nodes which drain the breast via spread via the lymph system rather than than distant metastasis in bone, liver, lung, brain, adrenal or leptomeninges via the normal circulatory system which consists of arteries, veins and capillaries.

You may also consider yourself lucky that the areas your tumor seems to have spread to are easily accessible for biopsy so that it becomes clear quickly if treatment is working or not, so that other treatments might be substituted which may prove more effective. Tumors may change when they spread and it is possible that these nodes are her2 negative (in which case herceptin won't necessarily help) or their ER status may have changed. Again, you are lucky as your tumors seem to pop up in easily visible areas and areas easy to biopsy

From what I have learned in my reading and at conferences, these tumors utilize different strategies/pathways to spread to the lymph nodes than via the circulation.

You seem to have what they call LABC (locally advanced breast cancer) , more correctly LRABC (loco-regionally advanced breast cancer rather than distantly metastatic breast cancer. Again, stats seem usually much better for LABC than MBC.

Perhaps one of your doctors will send the tumor and representative nodal metastasis specimens for genetic/pathway testing to find the best combination of treatments. Not standard of care, but there seem to be more trials involving such testing and in light of the fact that various treatments have not yet proved sufficient perhaps more information on what drives your tumor might help pick your next therapy choice(s)

Chin up-- many reasons to consider yourself lucky!

PS I hope I posted this on the right thread--when I started the post I saw clinical information which perhaps has now been deleted, or perhaps I have posted on the wrong thread. The clinical info I saw showed no evidence of distal mets, only "spread" to the neck.

If I have misposted, please forgive me.
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Old 06-15-2014, 03:00 PM   #2
k1982
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Join Date: Jun 2014
Posts: 16
Re: please help! is my cancer worse than anyone else's because it has never went away

Hi lani, I was wondering are you in the medical profession?
__________________
January 2012 - itchy nipple on right breast
February 2012 - lump appeared in right breast
March 2012 - diagnosed with breast cancer in right breast, mastectomy on right breast found that 12 of 13 lymp nodes in armpit were positive. Her2+ ER -
May 2012 - fec t chemotherapy
September 2012 - herceptin began and fec t ended
November 2012 - radiotherapy to breast, neck and armpit
March 2013 - healthy left breast removed and reconstruction on both breasts
May 2013 - lump appeared on neck at right side, surgery removed two nodes and one showed cancer her2+ er Started vinorelbine chemotherapy along with herceptin
July 2013 - cerebral venous sinus thrombosis diagnosed, hospitalised for one month
August 2013 - continued with vinorelbine chemotherapy and herceptin
November 2013 - vinorelbine chemotherapy ended and continued with herceptin on its own
February 2014 - lump appeared in neck in same area and tdm1/kadcycla chemotherapy began
June 2014 - have received 3 x tdm1/kadcycla and await body scan this week
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Old 06-16-2014, 07:18 PM   #3
mamacze
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Location: Madison, Connecticut
Posts: 638
Re: please help! is my cancer worse than anyone else's because it has never went away

Once again Lani comes through with a comforting truck load of facts. All relevant points and I hope K1982 - maybe you are starting to feel a bit better? Either way - I am sending love and light directly to you and hope to hear soon about a dance with NED
XO
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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