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Old 05-10-2014, 03:50 PM   #1
tricia keegan
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Secondary Angiosarcoma to the breast?

I just heard yesterday a patient is at risk of this once they've had rads after a lumpectomy for breastcancer, an old friend then posted that she had indeed just been dx with this condition ten years after her initial BC dx, it has a poor prognosis too, just wondering if this is more common these days since more rads and lumpectomies are done???
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Tricia
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 05-10-2014, 06:57 PM   #2
suzan w
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Re: Secondary Angiosarcoma to the breast?

Yikes...I have not heard about this. Certainly something to be aware of. Somehow does not seem quite fair, does it?
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 05-11-2014, 07:27 AM   #3
Debbie L.
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Re: Secondary Angiosarcoma to the breast?

Yes, I first learned of this when an acquaintance was diagnosed with it. Since then I've known of 2 others. Two are alive at >5 years out and apparently okay, but one died quite quickly.

And it's not just limited to after lumpectomy -- lots of us got rads after mastectomy.

But the main thing is that it's REALLY rare. Here's a systematic review from 2012, which states: "After radiotherapy, the cumulative RIS incidence is 3.2 per 1,000 at 15 years (versus 2.3 per 1,000 for primary sarcoma in a population without radiotherapy)"
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3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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Old 05-12-2014, 10:18 AM   #4
Lien
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Re: Secondary Angiosarcoma to the breast?

I think I know two of those Debbie L. mentioned. I would like to add that the person who died had a lot of trouble getting adequate treatment, due to all kinds of hassles. I've been on two breastcancer boards for over ten years, and I've rarely heard of it. It is a serious type of cancer, but it is treatable.
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 05-12-2014, 04:14 PM   #5
tricia keegan
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Re: Secondary Angiosarcoma to the breast?

Thanks Debbie and Lien for your input, I only heard of this while researching for a friend dx with a primary Angiosarcoma of the spine and had not come across it before this, glad to hear its rare as I had read but hoping it stays that way as many people over the past ten years decided on a lumpectomy with rads over a mast.
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Tricia
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 05-13-2014, 07:16 AM   #6
Hopeful
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Re: Secondary Angiosarcoma to the breast?

What patients may not realize "in the moment" of making decisions about early bc tx is that pretty much all cancer treatments are toxic, and many cause other cancers "down the road." AC chemo, for example, can cause leukemia. My philosophy has been to avoid the piling on of therapies "just in case," and accept those I think provide the optimal benefits when balanced against the potential long term side effects. I did have lumpectomy and radiation and still believe that rads were the right choice for me, even though I would have foregone the tx if I could not have found a doctor that promised me she could keep my heart out of the tx field. Everything in this disease is a trade off.

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