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11-15-2013, 07:08 PM
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#1
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Member
Join Date: Sep 2013
Posts: 24
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experience with aggressive HER2 cancer
Dear Ladies,
I was diagnosed with HER 2 positive breast cancer in September 2013, with a 2 cm lesion.
On October 25, the mass measured 3 cm and they detected two new masses
On November 15, the mass is 4.5 cm
my breast surgeon said this rapid growth is unusual.
Did you have experience with such aggressive form of breast and ca and what is the best way to approach is? Chemo first? which kind? Or surgery first?
thank you
Olga
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11-15-2013, 08:58 PM
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#2
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: experience with aggressive HER2 cancer
Olga,
I am sorry that the cancer is growing aggressively.
I am also curious as to the recommendation of the surgeon.
Personally, with this history I would schedule a double mastectomy as soon as possible. The cancer is thriving, and either spreading, or new primaries are forming.
I realize you had hoped to avoid chemotherapy. However, the time for choice has been taken away. It is time to take action, surgery, radiation, chemo, targeted therapy. Don't delay. Monday morning call and schedule.
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11-15-2013, 09:52 PM
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#3
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: experience with aggressive HER2 cancer
http://www.rationaltherapeutics.com/
With cancer this aggressive you might want to consider going out of the standard of care box.
Get your surgeons to work with you to send a live sample of tumor cells to Nagourney at Rational Therapeutics. They test possible treatments to see which end in the greatest cell death. Personalizing which treatment that would be most effective against your cancer instead of following what works best for the masses.
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11-15-2013, 10:02 PM
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#4
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Senior Member
Join Date: Jun 2012
Posts: 129
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Re: experience with aggressive HER2 cancer
My tumor was 2.5x3 cm when i first found it. By the time chemo had started...about 6 weeks later i guess, it was 4cm. My onco said we had poked it and made it angry. You can read my course oftreatment in my signature. God luck!
__________________
Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year anniversary of last Herceptin.
Sept'14- bloodwork good, return to onco in 8 months.
Oct'14- surgeon will see me in April '15. Moving on.
May '15- mammo unchanged, keeping same schedule. Tumor markers soon and if all is well port comes out.
July '15-tumor markers normal. See onco in a year. Appt. for port end of month. First grandchild born July 1st- for today, life is good.
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11-15-2013, 11:07 PM
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#5
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: experience with aggressive HER2 cancer
Hello -
I guess I do not understand why the wait to do ANYthing. HER2 positive breast cancer is nothing to sit with. Best get on with treatment RIGHT AWAY.
Have you had diagnostic scans such as CT and/or PET? I would have them ASAP.
All the best to knock this back into a small and manageable box!
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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11-15-2013, 11:39 PM
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#6
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Senior Member
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
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Re: experience with aggressive HER2 cancer
Olga,
My lump was 4.5 cm on first scan and when I had my mastectomy - surgeon cleared her schedule to get me in 5 days after consult - it was 6cm.
Please do not delay and seriously consider getting a more proactive breast surgeon - yours sounds to me like she/he has failed you already!
Good luck
Jenny
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy
Praying the Herceptin is as good as its hype!!
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11-16-2013, 04:25 AM
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#7
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Senior Member
Join Date: Jul 2013
Posts: 260
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Re: experience with aggressive HER2 cancer
Dear Olga,
Yes, I would get get the surgery done ASAP, if surgeon believes he can get the tumor all out at once. Chemo before surgery (neoadjuvant chemo) is used if the tumor is large or located in a spot that makes surgical clearance difficult. This can be very effective and is becoming more common. It is possible the oncologist will favor this in your case. Which ever is done first, treatment needs to start soon.
If your tumor is growing quickly, it is likely to be very sensitive to the chemo, which targets growing cells. I am hoping this leads to a good response in your case.
Please keep in contact because we will all be thinking of you and will be by your side holding your hand (metaphorically) as you face this challenge.
Aussie Girl
__________________
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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