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09-24-2011, 12:19 PM
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#1
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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NCCN Breast Cancer Guidelines
Here are the guidelines from the National Comprehensive Cancer Center, which are used more or less by oncs:
http://www.nccn.com/cancer-guidelines.html
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 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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09-24-2011, 03:06 PM
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#2
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: NCCN Breast Cancer Guidelines
(less when Joan takes the wheel  |
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09-25-2011, 08:49 AM
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#3
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: NCCN Breast Cancer Guidelines
Joan!
What a fabulous resource!!! I wish I had had this little booklet 10 months ago. I would have made some better, more informed decisions. All's well that ends well...but there's a LOT of great info for me to keep in mind for the future too!
Thanks for posting this! I recommend it highly to anyone on this journey.
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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09-25-2011, 11:25 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: NCCN Breast Cancer Guidelines
It is interesting to see that the "health care" practice by oncology specialists continues, of not providing newly diagnosed patients with the simple and considerate courtesy of informing patients that this information exists online for them to consider. It existed in 2002 also when I was diagnosed, but no information regarding it was provided to me about it back then, either, and I discovered it on my own only after beginning a particular recommended treatment plan.
There are advantages to providers in avoiding providing patients with reasonable information to assist them in making decisions about the basis for the various options they are expected to choose from.
Whatever your decision process is based upon, a helpful book to read is "Your Medical Mind", by Jerome Groupman and Pamela Hartzband.
http://her2support.org/vbulletin/showthread.php?t=51449
or
http://www.npr.org/2011/09/21/140438...ecision-making
AlaskaAngel
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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09-25-2011, 11:57 AM
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#5
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: NCCN Breast Cancer Guidelines
Thanks.
It is good for patients to be informed as much as possible.
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09-25-2011, 01:38 PM
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#6
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: NCCN Breast Cancer Guidelines
I highly recommend clicking the download button (7th icon from the left at the bottom left after the book finally loads).
It is much easier to navigate as a PDF than it is in book form. Also, saving the PDF means offline access as well as the ability to print if you're inclined to read in computer-unfriendly places.
I mention this because the online format had me tearing my hair out...well, it would've had me tearing my hair out if I still had hair (way too slow).
Finally, thank you for posting this. I've read the Clinical Practice Guidelines, and the way the NCCN put it all together is ridiculous. The Patient Guidelines are a much less frustrating, but equally informative, read.
Thanks again.
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