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Old 10-01-2008, 01:07 PM   #1
Mary Anne in TX
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Hi Debra! Peace and encouragement to you! Thank you for starting this thread. Brenda, you always cut to the chase. Thank you so much for the info. I see my onc on Friday & will make arrangements for CT and bone scans. Can't predict the future, but sure can do my part. ma
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 10-01-2008, 01:59 PM   #2
Mary Jo
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Hi Debra......

Thanks for sharing your feelings/fears with us who care about what you think AND never think your questions would be thought of as "frivvy!" There is no such thing as "frivvy" around here.

I hear ya on the "NED" talk and all that goes with that. Sadly, there is no crystal ball and none of us truly every knows if cancer is lurking "in their somewhere" unless of course a scan or test of some kind picks it up.

I am of the other extreme and do not want regular scans. I know there are some reading that statement that will say "she's nuts....OR....she's hiding her head in the sand" of which I'd have to reply, I'm neither (well, maybe a little nuts). It isn't about "hiding my head in the sand or being in denial" but for me it's about living my life, the quality of my life and what I can or am willing to endure.

My life would be greatly diminished if I subjected myself to regular scanning. It's just way to stressful for me. Now, don't misunderstand me, I have had scans (2 PET/CT's/1 abdominal CT/1 bone scan and a transvaginal ultra sound) and believe in them (for me personally) when I feel the need...like when I feel symptoms warrant it. However, more than that would make me nuttier than I already am I just can't live in that "mode" ~ the always looking for and waiting for cancer mode!!! I just can't.

My onc. also is not a believer of routine scans because of "chasing" what isn't cancer and the emotional havoc that can cause. He also "buys into" the NCCN guideline BUT that being said he is of the mindset that if the patient wants them he will order them. The patient, in his eyes, is what determines what tests are ordered as he believes that all patients require different "things" for their particular quality of life to be good.

I know many reading this are thinking that 'IF' my cancer returns I will regret my decision in not wanting regular scans but I honestly don't believe I will. What "comes next" I will handle when I get their. "IF" I get their and I'm not planning on it!!

I know it sounds as if I have an "I don't care" attitude or an attitude that says "if I say it 'aint so, it 'aint" but I truly do not have that kind of attitude. I am very diligent in how I care for my body and do all the things (or I should say TRY to do) all the things to stay healthy AND happy.

So Debra....I know I was of no help to you but hope that my opinion is just another of many opinions that will be given here for you to understand that you are not alone in your cancer fears. We all have them AND we all have different ways of living with those fears. This is just my way. It's what works for me.

Blessings of Peace I send to you......

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 10-01-2008, 04:51 PM   #3
StillHere
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Mary Jo
Your posting stated all that I feel, but much more eloquently than I ever could. As I have stated before, I am sure I would be doing everything possible to stick around if my kids were not grown and independent. Right now, while I am feelin fine (Except for joint pain & crazy hot flashes) I am taking lots of vacations, trying to savor each day and create as many pleasant memories as possible for my family. I do try to walk a lot, but I also eat whatever I want because I really enjoy foods that I fully realize are not the most healthy. Bottom line is we all need to find out as much information as we can to make INFORMED life decisions that we can live with - Hopefully for a very long time. OK all my health nut sisters & brothers out there - let me have it ! Just call me fat and sassy. Peace Karen
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04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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Old 10-01-2008, 05:28 PM   #4
Patb
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My oncologist and internist are at odds now about scans
and tests to have. I tend to agree with Brenda to have
the scans even though I am a nervous wreck that day.
My oncologist says ok to have, my internist says too
much radiation that could cause something else. I insisted on full body CT scan in May, two year anniversay and had one. One small lung nodule showed
up that should be followed. I feel if I had had a base line we would know if it was new or had been there all
along, but we don't. I'm having another CT scan on
Monday to check the lung nodule and then we will go
from there. I feel if found early, treatment is easier
and I have already had a lot of radiation with my
lumpectomy and radiation so whats a little more.
patb
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Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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