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Old 02-01-2008, 10:40 AM   #1
Sherryg683
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Low PET intake?

I finished my PET/CT scans last week and Oncologist told me everything was still great, I was still NED. He showed me the scans on the computer. On the scans, I noticed a red dot on my effected breast. I asked him what that was. He said that the PET was detecting where the surgery had been done, the tumor bed and the surgical staples were and that there was nothing to worry about. He showed me the different colors that the PET puts out that determine whether or not the intake is high or low. Mine was pink, he said which shows it had a low PET intake. The scale went all the way to a maroon color. On the radiologist report, it indicated "low to intermediate PET intake of 2.4 at surgery site, similar to previous scan of 1.4".. CT scan clear. Now this was a different radiologist who read my report than the usual one and he had a lot more stuff on it. On all my other reports it never mentioned a PET intake of 1.4 or anything. I really can't help but worry about this and almost want to ask my oncologist for a biopsy of the area or something. I know that PETs can pick up lots of other things but my surgery was 2 years ago, you wouldn't think it would still be an active area...although it still hurts like crazy. I don't know why I have such a hard time trusting what my Oncologist says, he's a great doctor. I just have a trust issue period. He's moving my scans back to every 6 months now and I just worry that if it is something there, it could spread in 6 months. What do you all think, ever had something similar...sherryg
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 02-01-2008, 01:36 PM   #2
Mary Jo
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Hi Sherry,
Of course I can't answer why your surgical site showed a bit of uptake but I can tell you that I believe you can trust your oncologist on this one. I believe (because you tell us he is a "great" doctor) that if he felt there was reason for concern he would be the first one to tell you that. Why wouldn't he? He knows how concerned you are and how you worry about these things. If he felt something should be done I'm SURE he would recommend that to you. As far as an every 6 month PET scan, I also feel that is fine. You are at the 2 year mark now and although PET scans don't pick up a cancer that is very, very small, it wouldn't grow that much in a 6 month period. As far as that goes, I always thought a person could only have so many PET scans in a lifetime? Is their any truth to that - anyone?

Well anyway Sherry, I'm answering your post not because I know what's best - because I don't - just responding to help put your mind at ease. I know that after a cancer diagnosis it is hard to trust our bodies again but trust we must. There really is nothing else we can do until a problem arises. You are aware of your body - you get scanned on a regular basis and you have a "great" doctor. All that being said, my advice to you would be to enjoy the NED status and try to trust that if your doctor felt there was a problem he would tell you. Like I said before, why wouldn't he? He's there to help you.

Praying for God's Peace to hold you close today.

Mary Jo
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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

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Old 02-01-2008, 02:52 PM   #3
Sherryg683
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tks Mary Jo

Tks Mary Jo, you are right..I need to relax and enjoy my clean bill of health. I just have never seen it mention on all my reports any indication of PET intake, although this radiologist seemed to go into much greater detail than any other one I've had. I usually have the same guy that reads my report and I'm kind of use to his terminology. Even so, this recent report said "no marked change since last scan", so I guess I should take this as good. My husband says that I always go looking for the worst. I just feel like I need to prepare for the worst and hope for the best and enjoy every day that I am healthy. When I was diagnosed, I had just had a visual breast exam from my GP. He missed the lump in my breast and didn't take me seriously when I called him a week later saying I had found something. I guess I now feel like I have to be on top of everything and second guess everything. I do need to believe in my Oncologist because in 2 years, he has never steered me wrong and has been right about everything. As far as frequency of PETs, I don't think there's a limit...if there is, I've used probably most of mine. I have had scans every 3 to 4 months. It's nice to know that I don't have to do it again for 6 months but a little scary. Tks again for responding, sometimes you just need someone to say "relax"..sherryg
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 02-01-2008, 02:57 PM   #4
Mary Jo
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Oh, you're welcome Sherry and I hope I didn't come across as unfeeling or trying to insinuate to you that you shouldn't worry. Of course, we ALL worry - that's a given - BUT - like you said, all I was TRYING to do is to help you relax and enjoy your NED status.

Love & Peace,

Mary Jo
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"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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Old 02-01-2008, 03:35 PM   #5
chrisy
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Sherry,

I agree, accept the good news as that. Sounds like you had a different radiologist do this read, and he is more detailed. That just means more information (and of course, there is that fine line of "too much information). That it reads at all may just indicate that there is some inflammation, which jives with your comment of it hurts. The change in uptake could be anything, and it is not significant. So I agree, relax, enjoy the good news~
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 02-01-2008, 09:40 PM   #6
hutchibk
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Sherry - does this help? It sounds like low uptake is not a bad thing or something to worry too much about...


"Different tissues in your body take up different radionuclides, and therefore the radioactive substance used during a PET scan depends on the organ your doctor wants to investigate. The radioactive substance gives off tiny amounts of energy (radiation) in the form of positrons. These positrons are detected by a device called a PET scanner or gamma camera. The number of positrons emitted by an organ or area of tissue indicates how much of the radioactive substance the organ or tissue has taken up and, therefore, how chemically active it is. Areas that take up more glucose are more metabolically active and appear brighter on a PET scan. Areas that don't use much energy or that are damaged don't take up as much glucose and therefore aren't as bright on a PET scan.

Information from a PET scanner or gamma camera is processed and converted into images. A PET scan portrays chemical activity in parts of your body as images, or colors, of intensity. Areas of more intense color, or high uptake of the radioactive substance, are called hot spots. Areas of less intense color, which indicate a low uptake of radioactive substance, are called cold spots."

http://www.mayoclinic.com/health/pet-scan/CA00052
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 02-02-2008, 12:32 PM   #7
Donna
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Hi Sherry

Hi Sherry,

It's easy enough to take the bad news at face value, take the good news the same way and live the best, happiest life you can - that's what I try really, really hard to do. It's so easy to get caught up in the "what ifs" after what we have been through and very difficult to ever get back to a normal life.

Just want you to know I am thinking about you and wishing you well.

Donna
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Donna in the Sierra Foothills of California

Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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Old 02-02-2008, 08:58 PM   #8
Sherryg683
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Thanks all. And thanks Hutchibk for that article. That set my mind at ease. I was trying to find something on the net about the PET intake myself but couldn't. I can always count on you gals. I will now enjoy the next 6 months before I get back to my worrying ways again...lol..sherryg
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 02-02-2008, 09:09 PM   #9
Bill
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It sounds like good news to me, Sherry. Like my friend often tells me, "Don't borrow trouble". You rest easy. All of our prayers and well wishes are coming your way. Love, Bill
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