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12-12-2011, 12:08 PM
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#1
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Member
Join Date: Nov 2011
Posts: 14
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Another question..
What type of tests, if any, did your onc. run while you were going through treatment? I've had 4 cycles AC and now on weekly Taxol/Herceptin, with 3 to go before they re-run a PET. That will be the 2nd PET I've had, only goes from neck down to hips. No brain MRI, no tumor markers (first onc. said they "weren't relevant"!). I've now changed oncologists and see new one tomorrow. I've felt nodes and tumor shrinking myself, and old onc. agreed they had by her feel too, however I can't look into my body to see for sure. I've seen others on here have had bone scans, full body MRIs, etc., and now I'm worried I'm not getting the best care from this major cancer center out here in Calif. that I'm going to!! Haven't had surgery yet either, they will depend on PET apparently. I have 2nd opinion schedule for January.
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12-12-2011, 12:52 PM
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#2
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Another question..
I never had any scans during treatment. Had Echocardiograms every few months to be sure no damage from Herceptin. Also get tumor markers. But not all oncologists think they are valid and they can result in false positives, apparently. I believe my doc is ambivilant about them. Still have blood work done.
I believe the tests we receive are based on individual situation. Have a discussion with your doctor as to the reasoning used. And of course, a second opinion will offer peace of mind.ETA: keep the faith!
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
Last edited by BonnieR; 12-12-2011 at 12:53 PM..
Reason: keep the faith
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12-12-2011, 02:02 PM
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#3
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Senior Member
Join Date: May 2010
Location: Elizabethton, TN
Posts: 418
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Re: Another question..
My experience with testing was the same as Bonnie's- bloodwork including tumor markers (CA 27-29). It wasn't until I had finished Herceptin a year after diagnosis that I had a PET scan (which showed arthritis only) and a CT of head/brain. My onc said the chemicals from treatment and the radiation could give false results on the scans, especialy the PET. Hope this helps.
__________________
Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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12-12-2011, 02:14 PM
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#4
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Another question..
I had a bone scan and CT scan as part of my initial staging. The CT showed lesions on my lungs and liver. The liver was biopsied, and they found breast cancer cells there. I requested the brain MRI after the second CT scan, which was also after I learned that chemo doesn't cross the blood/brain barrier. I asked my oncologist how we knew I didn't have brain mets and she said there was no way to know without an MRI.
At least one other person on this site had surgery first, then a CT scan that showed that her cancer had metastasized. It would have been good for her to know that before going through surgery. One good about being Stage IV at diagnosis is not having to go through that--and the side effects, lymphedema, anesthesia, risk of infection, etc., etc.
I don't actually have any tumor markers, so they are not part of my monitoring. They did look for them as part of the initial staging, but have not done it since.
It doesn't sound like you're missing anything, but it's good you're getting a second opinion. That should help ease your mind.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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12-13-2011, 10:11 AM
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#5
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Member
Join Date: Nov 2011
Posts: 14
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Re: Another question..
Thank you ladies, good to hear what your experiences were. I still think I'm going to push for the brain MRI, just to be sure. That is the only area not checked w/ a PET and tumor markers don't cover brain. I see new onc. today, am hoping he is more empowering, encouraging, and compassionate than the last one was. PLEASE GOD, this is hard enough!
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12-13-2011, 10:13 AM
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#6
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Another question..
which major cancer center is it, if I may ask?
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12-13-2011, 01:47 PM
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#7
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Senior Member
Join Date: Sep 2011
Location: Mt. Prospect, IL
Posts: 177
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Re: Another question..
I wish my oncologist would give me a PET scan. I only get bloodwork (including tumor marker #s) and an annual Breast MRI with my annual mammogram. also get a mamogram on my "bad" breast every 6 months.
__________________
10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
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12-13-2011, 03:41 PM
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#8
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Senior Member
Join Date: Nov 2010
Location: Doylestown, ohio
Posts: 334
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Re: Another question..
I just finished 3 weeks ago and just had a chest xray, bone scan and labs (tumour markers). All clear, some arthritis. I was told that there will be no other scan unless there is a reason to warrant it. Just lab works on follow ups. It is a scary transition but we will get past this. I had my scans done on wednesday and then had reconstruction on friday and I still had all the crap from the scans in my body when I went into surgery. That is alot of stuff that our bodies are trying to tolerate. Glad to be done and hope to stay that way. Good luck.
__________________
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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12-13-2011, 04:44 PM
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#9
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Member
Join Date: Nov 2011
Posts: 11
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Re: Another question..
Careful what you wish for too...I swear my bc is from many xrays as a child. The tests themselves can be dangerous. i had a PET done with my initial dx, and then a CT scan of the brain when, on chemo, my nausea could NOT be controlled for a couple of weeks. All clear! No other scans are planned unless I have symptoms.
__________________
Diagnosis: 3/1/2011, IDC, 2cm, Stage II, Grade 3, ER+/PR-, HER2+
16 weeks of Taxol/Lapatinib 4/2011-8/2011 (trial)
BMX with TEs 8/23/2011
4 rounds of AC ended 11/10/11
Tamoxifen started 11/25/11
Herceptin starting 11/28/11
Exchange surgery 12/19/11
Nipples in May!
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