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02-20-2008, 01:27 PM
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#1
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Senior Member
Join Date: Oct 2007
Location: Portage, IN
Posts: 198
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PET Scan
After my mastectomy 3 weeks ago my surgeon ordered a PET Scan for me. Today was my appointment. I got about a foot into the machine and I had a panic attack. Yes I am afraid of the machine. So I came home and called my surgeon and asked if he could give me something for my nerves. He said NO. So tomorrow I see my oncologist and I am going to ask him for something. I can't believe that the surgeon said no. I was so mad at him.
Sorry I am just venting here.
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02-20-2008, 01:37 PM
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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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Patty
As long as you have someone to drive you home, they can give you an Ativan....ask your oncologist.....demand it, there is no reason to feel claustrophobic on top of all the other BS we endure.....they always ask me before the MRI.....I laugh, like I could drive in Chicago traffic after that!. Make sure the onc. writes the order, get it filled and take it 1 hour prior with a sip of water.
__________________
"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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02-20-2008, 01:39 PM
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#3
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi Patty
I can so relate to this. It is very common
to have panic attacks inside these "tunnel" machines.
I "over" drugged myself for an MRI but I'd do it again
in a heartbeat - as long as you have someone with
you to get you home safe and sound, take whatever
you need to get through it.
I took 2 ativan and 2 benedryl and they could have
left me inside that thing forever. I was happy as a
clam. But I now have no memory of anything that
happened that day. Who cares?
Your family doc or your oncologist will give you some
"happy" pills to take. You are not alone on this one -
lots of people can't handle those tests.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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02-20-2008, 02:28 PM
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#4
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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The goal is to get you that scan. I can't believe the surgeon said no. For crying out loud, he could have prescribed one pill if he's conservative about anti-anxiety meds. Shame on him.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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02-20-2008, 04:34 PM
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#5
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Patty -
It's 2 ativan for me before an MRI - couldn't do it without 'em!!
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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02-20-2008, 04:57 PM
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#6
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Senior Member
Join Date: Jan 2007
Location: Massachusetts
Posts: 82
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I take Ativan 0.5 mg and Benadryl 25 mg an hour before any kind of scan or MRI. (I had my eighth MUGA scan last week.) A blindfold helps a lot, too, in an enclosed place.
I hate the injection more than anything, though.
You'll be fine with medication. Good luck!
__________________
IDC Stage IIIA
Diagnosed Nov 2006 (routine mammogram), age 51
Lumpectomy, lymph node dissection Dec 2006
3 cm tumor, 8 cancerous lymph nodes
Grade 3, ER/PR -, HER-2/neu +++ (by FISH, average 20 copies per cell)
A/C x 4, Taxol x 12, Herceptin x 47 weeks
35 radiation treatments
Completed treatment on April 3, 2008
Chest port removed October 2009
11 years since diagnosis NED
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02-20-2008, 05:34 PM
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#7
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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I agree with the Ladies here, Patty, you're not just venting, and it shouldn't be any problem at all to get an Ativan or something. Good Luck, Bill
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02-20-2008, 06:00 PM
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#8
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Before both of my PET/CT scans valium was ordered and I never even asked. I am not claustrophic and I suppose could have done the test but geez, especially after initial diagnosis when I had my first one I was so anxious, nervous, depressed and didn't know what to expect I truly appreciated those valiums. As a matter of fact they said "we'll give you 2 because you are so nervous" and boy did I love those valium. I remember that I felt so happy and calm and truly loved the feeling (this was 2 weeks after diagnosis and trust me I hadn't felt happy OR calm once in those 2 weeks)
So, Patty, you go for it girlfriend..............and kick that surgeon of yours to the curb. Geez, does the guy have a heart......obviously not.
Sending love and hugs your way,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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02-20-2008, 11:10 PM
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#9
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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I cannot fathom why your doctor would refuse to give you something for your scan. I have never asked for anything and I actually tolerate the scan quite well but I'm given a scrip for Ativan every time. Your complaint is valid, make them give you something to relax you.
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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02-21-2008, 08:26 PM
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#10
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Hi Patty -
For sure on the Ativan. It is a great drug - takes the edge off anxiety and is has anti nausea properties as well. Just want to say that I also DO NOT like these machines - BUT I'd take a PET to an MRI any day. The PET is quiet and quick. The MRI is banging loud and I can't hear myself think or breathe so be glad you can do the PET scan.
Think of all of us on this site sending you protective and calming energy - that is how I got thru my gamma guns.
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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02-21-2008, 09:11 PM
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#11
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Senior Member
Join Date: Jan 2008
Posts: 305
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I didn't think the pet scan would bother me but I felt anxious when I was in it - I made it through but I hoped I would never need another one.
I can't believe that the doctor wouldn't give you anything - cancer patients go through enough, doctors should do their best to make us as comfortable as possible.
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02-22-2008, 07:49 AM
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#12
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Senior Member
Join Date: Jul 2006
Posts: 869
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That was really counter-productive on the part of your surgeon, but I know they can be that way sometimes, Your onc. should be able to prescribe something to take the edge off. Good Luck, Ceesun
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02-25-2008, 07:50 PM
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#13
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Patty, I'm sorry to hear about your awful experience and the insensitivity of your surgeon. Vent all you want!
When I have scans, I take a .5 Ativan the night before and since my PET scans have been early in the morning, I take another .5 pill just before leaving for the test. My the time I sit in the quiet room for about 50 minutes and then go into the scan room, I'm pretty mellow.
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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