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05-28-2011, 11:45 AM
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#1
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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a bit of a scare
Had my yearly diagnostic mammo and all was fine. Followed up with my first yearly appt with breast surgeon, (was seeing her more often until this year). She was a bit concerned about an area on other breast and asked if I could stick around for an ultra sound. You of all people know how I was feeling in that moment. Thank goodness all was okay but she wants me to come back in 6 months instead of waiting the year. So much for sigh of relief at reaching 5 years NED. Back to feeling not so safe again. In addition to this, I am facing yet the possibility of another surgery for yet another tumor in my other parotid gland due to my Sjogren's Syndrome, (had the other done in 2004). It was a grueling surgery taking 5 hours vs the 2 surgeon predicted. I have had 6 surgeries since 2002 and enough is enough. With that said, it shouldn't get any worse right?
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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05-28-2011, 06:47 PM
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#2
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: a bit of a scare
Rina
Your doctor is probably just being cautious. I try not to worry about anything "medical" anymore unless I'm given a reason to. Relax and breathe. I'd be thankful for having such a vigilant doctor, too!
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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05-28-2011, 07:02 PM
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#3
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: a bit of a scare
Glad the ultrasound turned out OK. You must have the so-called 'dense' tissue. I'd give your doctor credit for being cautious...
Take care and take it easy.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
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1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
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Last edited by Jackie07; 05-29-2011 at 07:42 PM..
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05-28-2011, 09:22 PM
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#4
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: a bit of a scare
Hi Rina,
Do you know if you have dense breast tissue? Can you get a breast MRI? Don't want to alarm you, but a mammogram and ultrasound missed my 1.7 cm. tumour, only because I had a breast reduction was it found by my plastic surgeon, 3 months later. Then before my mastectomy I had a breast MRI and another 1 cm. tumour was discovered.
After my mastectomy I had a breast MRI once/year and a digital mammo once/year, alternating every 6 months. At my last check up with my oncologist he had my latest breast MRI report which determined my remaining breast was no longer dense, so I only have to have the mammo now.
Please push for a breast MRI if you have dense breast tissue.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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05-28-2011, 10:12 PM
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#5
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Re: a bit of a scare
Thanks Caya, I thought of that as well. I do have dense tissue in my breasts. I will definitely ask for an MRI at next visit in 5 months. Do you think it can wait until then?
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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05-29-2011, 08:52 AM
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#6
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: a bit of a scare
You know what Rina - why wait? It's probably nothing, but why not get it over with - why should you have to worry about this for 5 more months? I'm way more aggressive and demanding now since BC - we've been through enough, and you certainly have been through alot with all your extra surgeries.
I'd start the ball rolling, I know down in the States you gals sometimes have to fight with insurance companies for certain tests... Women with dense breasts are 4 - 6 x more likely to have BC. You get the breast MRI, then you'll know. There can be false positives, but I'd take that over the false negatives I got with just the mammo and ultrasound.
Keep us posted.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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05-29-2011, 06:53 PM
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#7
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Senior Member
Join Date: Oct 2010
Posts: 123
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Re: a bit of a scare
Rina,I agree w/KDR.......Try not to worry,everything may just turn out wonderful. Joanna J
__________________
found susp.lump Feb 2009
DX Feb 2009 ...Her2+ stage IIa ER/PR- grade 3
partial mast. Right breast,clear margins
chemo (2) carboplatin & Taxotere
could not finish chemo (hospitalized because of infection)
37 rounds radiation
Herceptin (1 yr.)
No clinical trials
Jan.2011 BRAC 1/BRAC 2 Neg
Aug.2011 clear bone/catscan NED
Apr.2012 clear digital mammo
& ultra sound of breasts
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