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Old 08-06-2013, 03:27 PM   #1
tricia keegan
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Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: Just need to vent - scared

Cathy I'm sorry you had that experience which would have angered me no end, I had my port out a month after my last herceptin and my Onc only does scans in the event of pain or symptoms as why risk the extra radiation small as it is??
Your Onc is not calling the shots here, you are, it should be a team effort and in your case I'd be looking for a new Onc, insisting my port come out (you pay his bills after all) and refusing these six monthly scans unless there's a good reason for them!
You'll read here many times that Herceptin has changed the whole dire diagnosis for those of us who were fortunate to have it with early stage BC, it sounds like your Onc is living in the past to me, and while of course the risks of recurrance are still there we need to go forward with confidence and live our lives, not be reminded of the risks from the person we trust to keep us safe!!
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 08-06-2013, 06:33 PM   #2
Cath
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Re: Just need to vent - scared

Thanks everyone for your support. I knew if anyone would understand it would be all of you.
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Cathy

Routine mammogram 6-29-11
Ultrasound 7-5-11
Biopsy 7-11-11
Right modified radical mastectomy 7-18-11 with 7 out of 24 lymph nodes positive
Stage IIIC, Grade 3, Estrogen + 100%, HER2 +
Had 5 tumors in right breast, none of which showed up on the mammogram (What showed up on mamm was a lymph node)
Lymphatic vascular invasion
Lymphedema right arm (started shortly after surgery)
TCH started August 15, 2011
Finished Taxotore and Carboplatin 11-28-11
Radiation x 36 - finished Feb. 3, 2012
Herceptin weekly for 1 year - finished 8-13-12
Arimidex started Feb. 2012 for 5 years
Left prophylactic total mastectomy March of 2012

Arimidex stopped August 2014 due to side effects
Aromasin started Sept. 2014
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Old 08-06-2013, 06:50 PM   #3
starwishn2
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Location: Utah
Posts: 124
Re: Just need to vent - scared

WOW... I am angry as well! I changed oncologist's several years ago, when I was dealing with platelet issues, because of the way she treated me and talked about me (called me her "problem patient"). I have been so much happier with my current oncologist. You deserve to be treated with the utmost respect! Maybe if you don't feel comfortable switching right away, you could at least go to another oncologist that is highly recommended, (for their knowledge and empathy) for a second opinion. I agree - if your doc thinks you are high risk - why aren't you on Herceptin?? What is he waiting for.

Hang in there!!
Jeri
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Diagnosed 16Dec1993 ITP (auto immune disease - low platelets)
Splenectomy 11Nov2009
Rituxen May2011
ITP playing nice
Diagnosed 3Jul2012 BC

2 cm - Grade 2 - Stage IIB
HER2+++

ER+/PR+
bilateral mastectomy 20Jul2012
Metastasized cancer found 1 lymph node
expanders placed during surgery
TCH chemo "cocktail" started 24Aug2012
every 3 weeks - 6 treatments
Herceptin - 18 treatments
LAST treatment Taxotere & Carboplatin 7Dec2012 -yay!
Continue with Herceptin 26Dec2012

Started Arimidex 01Jan2013 (for 5 years)
Surgery to remove expanders/reconstruction 18Jan2013
Infection in left breast from reconstruction/infection in most nails - SO many meds! 22Feb2013
Left implant not playing nice.... might need to remove and try again - blah! 04Apr2013
3Jul2013 - one year since diagnosis - booo cancer!

15Aug2013 LAST chemo infusion!! YIPPPEEE!!!
13Sep2013 2nd reconstructive surgery.. the FOOBs are looking good!



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