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Old 08-29-2009, 05:51 PM   #1
Patty F
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STATS I need help with

I read this on another site.........risk of recurrence for stage III breast cancer (and with 15 positive nodes this is stage III) is about 70%. the highest period of time for recurrence is the first two years after completion of treatment, excluding hormonal therapy.
Is this true??????
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10/15/07: Diagnosed at age 46 lymph node removal (2)
ER/PR - Her2 +++
11/07: Port Installed
11/07 - 1/08: AC
1/30/08: Right Mast Stage lllC
2/28/08: Start Taxol and Herceptin weekly.
5/15/08: Finished Taxol
8/12/08: Finished 33 Rads
1/29/09: Finished Herceptin
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Old 08-29-2009, 07:29 PM   #2
DianneS
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Re: STATS I need help with

I guess it depends upon several other factors too. Not sure, but size of tumour is one factor, ER/PR status, grade of tumour are other factors as well as lymph node involvement, vascular invasion present or not. There may be more and I'm sure there will be other members on board soon to point them out? Oh, whether or not the person is her2 positive, and how much, is a determining factor as well.

Percents are difficult as they do not take into consideration such important things as lifestyle and diet which can either increase or decrease the odds.

That's my two cents worth.

Diannes
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Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 08-30-2009, 04:55 AM   #3
Midwest Alice
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Re: STATS I need help with

Herceptin is changing everything. How old are your stats?
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 08-30-2009, 06:33 AM   #4
Cannon
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Re: STATS I need help with

I have never seen these stats - and I looked for everything. Also, as others have pointed out, many of these stats are OLD, and do not take into account the widespread use of Herceptin.

The other thing to remember is that even if the cancer recurs - that is not always a death sentence - well at least not a quick one. My sister used to remind me that you just have to live long enough for the next treatment - a sorry thing to be grateful for, but it's true.

I am now 3 yrs out from dx and NED. I was also Stage 3, and I am grateful.

Also, as I like to remind people - for individuals, the stats are either 0% or 100% - so I assume you wil lbe the one with the good outcome!

Best,
Rebecca
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 08-30-2009, 09:03 AM   #5
Brenda_D
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Re: STATS I need help with

I don't think that takes Herceptin, into account.
I don't remember seeing any stats that do.

Also stage 3 here too. I am now about 1 and 1/2 years out from the end of active treatment and ned.
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12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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Old 08-30-2009, 09:16 AM   #6
karen raines hunt
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Re: STATS I need help with

I was also stage 3.........with a huge tumor (12 cm). My oncologist reported my risk of recurrence as 68%, but with Herceptin these stats are changing. I am 4 years and 4 months out from my diagnosis date and appear to be NED.

Karen
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Karen Raines Hunt
Dx April 2005 at age 46
stage 3A, very large (12cm) tumor
2 positive axillary lymph nodes
ER+/PR+, Her 2 +++
Bilateral mastectomy, radiation, reconstruction, A/C, Taxol, Herceptin, Tamoxifen, Aromasin
5 yrs since diagnosis and NED
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Old 08-30-2009, 12:50 PM   #7
Karen Wheel
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Re: STATS I need help with

Only wanted to comment and say thank you for those who have weighed in on being NED for 3-4 years - as I keep wondering what the odds are of staying healthy.

Are any of you doing any special diets (I became a strict vegan and gave up all animal products) but wondering if this is something you are doing too...?

Or just the typical Herceptin and chemo....?

Thanks for giving me hope!!!!

Karen
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Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!


7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!

2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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Old 08-30-2009, 01:49 PM   #8
Mary Jo
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Re: STATS I need help with

Hi all...

4 years....NED.......and counting!

Things I do different, well, let's see.......I enjoy life wayyyy more........I try to stay focused on what's truly important and realize none of us are getting out of this life alive so might as well live, love and stay close to God.

As for diet and exercise. I always was an exerciser and that hasn't changed....still powerwalk about 4 miles a day - sometimes more sometimes less but that's a pretty good average. I take some supplements......lots of D3....CoQ10......fish oil........grape seed extract.....milk thistle......magnesium......turmeric ...I think that's it. I also eat more veggies and fruits....make my cookies now and use whole wheat pastry flour. Buy dark choc. instead of milk choc. (almost always) but does eat sugar and sweet treats. My motto is everything in moderation.

Like I said....I enjoy my life......and if I gave up everything I still wouldn't live forever (down here anyway - it will be eternal in Heaven though) and part of enjoying my life is treats on occasion...so I do it.

It's gotta be whatever works for you though.....we all have a life to live......we all should take care of these bodies God gave us BUT we all should enjoy each and everyday we have breath!!

Off to enjoy the day................................Oh ya, one more thing......I don't like red wine but I do like beer. I read that dark beer has more of whatever red wine has (can't remember what it's called) so I switched to dark beer when I do have one or two.

Cheers.....

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 08-30-2009, 05:01 PM   #9
sassy
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Re: STATS I need help with

Stage III, 4 1/2 years out. Don't do that much different. Take fish oil, calcium, eat more veggies. Still enjoy food, but less sugar.

Enjoy life.
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 08-30-2009, 06:16 PM   #10
Cannon
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Re: STATS I need help with

Great question about diet. There are lots of threads on supplements, etc.

I think anything you want to do for yourself is good, but I know there are people who have gotten cancer despite having been long time vegans, and there are people like me, who can't get a whole lot healthier in their diet (ok, except for the chocolate).

I am unable to eat more than a smattering of fruits and veggies because of having Crohn's also. Also b/c of the Crohn's, I have iron issues, so need to eat red meat. I was unable to exercise much until recently, due to fatigue. In addition to a slew of rx, I take CoQ10, glucosamine & chondroitin (helps with aches from Femara), baby aspirin, calcium +D, and fish oil. Right now I am also taking potassium b/c it came up low on my last bloodwork (I think also from the Crohn's).

So, do what you can, but don't beat yourself up for what you can't or don't do.

Rebecca
__________________
Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 09-02-2009, 08:23 AM   #11
Joan M
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Re: STATS I need help with

Patty,

There's a formula that I used to calculate my own chance of recurrence that takes positive nodes into account. I found it on the Internet, but that was about 5 years ago when I was first diagnosed and I can't now recall where.

In general, chemo reduces the chance of recurrence by 30% and Herceptin reduces it further, I think, by roughly 50% (so for only chemo, if your onc said you had a 12% chance of recurrence before chemo, for example, you would have a roughly an 8 1/2 percent chance after treatment).

Joan
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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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