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Old 08-22-2015, 03:45 PM   #1
Heathcliff4
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Posts: 52
To PET or not to PET?

Hi Ladies,

I'm coming up on my 2 year anniversary and my oncologist has me scheduled for one last PET scan next month. The last time she and I spoke, we mentioned that after this scan, we do a blood test or wait for symptoms because studies show that it does not improve your odds if you catch it sooner.

So, my question is: Why do the PET at all? I know one other gal who was treated at UCSF while I was who is also HER2+, stage 2 and her doc doesn't order scans anymore and actually hasn't in at least a year. Although, I do love getting the results that say everything is fine, I dread the lead up to it. And, I've been pretty happy the last 6 months getting my health back. I don't want to feel amazing but be told my body is quietly destroying me (as it was when I was diagnosed).

You ladies are experts, so I'd love your feedback before I reach out to my doc about it.

Thanks,
__________________
Kathryn Ellman

8/2013 Diagnosed age 42 with boys aged 2.5 and 6, Stage 11b, 1 cm her2+++, 30% ER positive, 5% PR positive, Rt Breast. Also DCIS in second spot of rt breast, high grade.
9/2013 Bilateral mastectomy, 3 nodes positive
10/13 Started AC/TH, Perjeta and Herceptin
1/14 Finished Chemo
3/14 Radiation, 5 weeks
4/14 Started Tamoxifen
6/14 Discontinued Tamoxifen due to extreme joint pain, exhaustion and depression
6/14 Started Exemestane and Zolodex shots to suppress ovaries
11/14 Finished Herceptin
11/14 Discontinued Exemestane due to similar side effects as Tamoxifen.
1/15 Reconstruction
3/15 CT Scan (routine) shows possible liver mets.
3/15 PET/CT scan shows no mets - huge sigh of relief
4/15 Began Letrozole. Knee and hip joint discomfort but minimal. Otherwise, knocking on wood - so far, so good!
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Old 08-23-2015, 10:26 AM   #2
thinkpositive
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Join Date: May 2014
Location: San Diego
Posts: 411
Re: To PET or not to PET?

Healthcliff4,

Looks like we were diagnosed at the same time. My onc told me that hitting the two year mark without having any recurrence is an important milestone and improves overall prognosis rather dramatically.

As far as scans go, my onc only did them while I was on chemo and immediately after completing treatment. She said that there is no evidence that routine scans improve life expectancy and/or outcome. I'm comfortable with this approach. However, it would be reassuring to get a scan to confirm that all is good.

Take care,
Brenda
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 08-23-2015, 12:01 PM   #3
tricia keegan
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Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: To PET or not to PET?

Hi Kathryn,

My Onc never does scan's unless I have some pain and/or symptoms which suits me fine. I think its just various Dr's have their own views on this but I don't like having a scan and more radiation for no reason so I'm happy to inform her if I'm overly concerned about something and investigate further then.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 08-24-2015, 09:03 AM   #4
Heathcliff4
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Posts: 52
Re: To PET or not to PET?

Thanks Ladies. I emailed my oncologist to see if she wants to do this one. I had a suspicious CT Scan 6 months ago (which lead to a PET scan to show all was fine), so she may want to do it. But, maybe not.

As always, I'm so appreciative of this group!!
__________________
Kathryn Ellman

8/2013 Diagnosed age 42 with boys aged 2.5 and 6, Stage 11b, 1 cm her2+++, 30% ER positive, 5% PR positive, Rt Breast. Also DCIS in second spot of rt breast, high grade.
9/2013 Bilateral mastectomy, 3 nodes positive
10/13 Started AC/TH, Perjeta and Herceptin
1/14 Finished Chemo
3/14 Radiation, 5 weeks
4/14 Started Tamoxifen
6/14 Discontinued Tamoxifen due to extreme joint pain, exhaustion and depression
6/14 Started Exemestane and Zolodex shots to suppress ovaries
11/14 Finished Herceptin
11/14 Discontinued Exemestane due to similar side effects as Tamoxifen.
1/15 Reconstruction
3/15 CT Scan (routine) shows possible liver mets.
3/15 PET/CT scan shows no mets - huge sigh of relief
4/15 Began Letrozole. Knee and hip joint discomfort but minimal. Otherwise, knocking on wood - so far, so good!
Heathcliff4 is offline   Reply With Quote
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