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05-26-2008, 01:20 PM
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#1
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Member
Join Date: Jun 2006
Posts: 12
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follow up testing
What follow up testing is recomended after an all clear Pet Scan? What will the doctor let you do if no symptoms of spreading? Just want to know nothing is going on.
Stage III B, Her 2 ++, chemo, radiation, mastomy
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05-27-2008, 06:12 AM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Lynn
It somewhat depends on the oncologists....soem will run a Pet or CT scan, bone san and brain MRI every year, some every 6 months, some only if you have symptoms, others refuse them. Some do tumor marker blood tests, some don't. You need to ask for what you are comfortable with, and aleways, if you notice something "different" that doesn't go away, (cough, pain, headache, dizziness, fatigue etc.) contact the Dr and get scanned. I would demand a brain MRI yearly, this type of cancer has a high incidence of brain mets, and if found sooner, the results are in our favor....we have had several members here get diagnosed with brain mets.
Hope this helps.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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05-27-2008, 07:41 AM
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#3
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Lynn,
Every Onc. is a little different and mine is the type that goes on symptoms more so than testing...however, I did have tests at the end of my year of herceptin. Since then he would order tests only if something felt wrong (which luckily I haven't needed) ~ I do have 6 month mammograms on remaining breast and bloodwork done. Where are you in relation to treatment?
Hugs ~ Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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05-27-2008, 08:30 PM
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#4
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Member
Join Date: Jun 2006
Posts: 12
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Thanks for your replies. Where am I in treatment at this point.
April 06 Started Herceptin and Taxol
Then Adrimycin & Cytoxen
Mastestomy Oct. 06
Radiation Nov. & Dec. '06
Jan. 07-Sept. 07 Herceptin
Oct. 07 clear Pet/Ct scan
Oncol. wants me back every 6 months now, but I think 3 is a better time. He once said I could have a CT scan every 6 month, so I'm asking for it tomorrow. I'm not sure a CT scan of what, whole body, or just chest area. And then one said yearly MRI of brain. I will be asking him about that also.
Thanks so much, Lynn
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05-27-2008, 08:44 PM
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#5
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Hi Lynn,
It really depends on the oncologist. Mine was big on following up with scans but that's because I had positive lymph nodes.
Each situation is different.
Best, Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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05-28-2008, 12:32 AM
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#6
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Member
Join Date: Apr 2008
Location: Finland
Posts: 19
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Hello all
I’m wondering how common it is that there isn’t any symptoms of brain or liver mets? I know some women whose blood doesn’t show if their cancer is proceeding and therefore they demand scans at least once a year. Even so, Sheila described perfectly the situation how it is. For instance, my follow up protocol consist originally blood tests and mammogram 1, 3 and 5 year after the operation, but as a Stage IIIb I definitely need follow up more often!!! Therefore I demanded mammogram and blood tests every year but should I also ask brain scan or MRI, I keep wondering, knowing that the risk of brain mets is high. In one year follow up my mammogram was clear and CA 15-3 very low, all values (blood, liver and kidney) were excellent.
All the best!
__________________
Kind Regards,
Ursula
Diagnosed 05/07 at age 42
Ductal Invasive Carsinoma Gr III, Stage IIIB:
Primary tumor 35 mm, secondary 21 mm
Node positive 13/23
Er/Pr negative (15 % /15 %)
Her 2+++
Ki-67 80 %
Mastectomy and node evacuation (rt) 05/07
3 x Taxotere + Herceptin (9 weeks)
3 x CEF
6 x Neulasta during chemos
23 x rads
Celebra for joint and PMS pain
NED
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05-28-2008, 07:46 PM
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#7
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Member
Join Date: Jun 2006
Posts: 12
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my calandar looks like it did 2 years ago with all the test
Just returned from my oncologist visit. He was somewhat concern with a small lump by my scar. He said he was pretty sure it was scar tissue, but wanted testing. Will have a Pet/Ct, & biopsy next week. So I guess my question got answered this time about testing. Also had blood work done today.
I asked about brain mets being a concern. He said it would usually spread to bone or something close to original site before going to brain.
Has anyone had little lumps by thier scar that their doctor was concern about? But just was scar tissue.
_______
April 06 Started Herceptin and Taxol
Then Adrimycin & Cytoxen
Mastestomy Oct. 06
Radiation Nov. & Dec. '06
Jan. 07-Sept. 07 Herceptin
Oct. 07 clear Pet/Ct scan
May 08 start test for small lump
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05-28-2008, 07:57 PM
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#8
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Senior Member
Join Date: Oct 2005
Posts: 823
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Lynn, yes I have a BIG lump that is on the scar line. I had PET Scan last year (June) and also a biopsy this past January. It has all been only scar tissue.
I do still have 3 month follow up's and blood work every 3 months. I am very comfortable with my schedule.
If any thing seemed out of whack my Onc most probably would have tests done.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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05-29-2008, 10:36 AM
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#9
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Lynn ~ Me too. A bump not exactly on scar line but just a little below it. It is scar tissue and formed as a result of implant reconstruction but nonetheless was worrisome. Hope yours turns out OK.
Hugs ~ Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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