 |
07-28-2009, 02:34 PM
|
#1
|
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
BRCA 1 2...it's Suzan again!!
Well, just got back the results of my BRCA 1 and 2 test...the one that my oncologist said was not necessary because Her2 breast cancers are usually BRCA negative//...and my BRCA 2 was 'positive for a deleterious mutation'. What a perfectly ugly word, deleterious!!! And the recommendation is for a prophylactic oophorectomy. I know that this subject has been discussed here before, but rather than look through all the old posts etc. I am asking for advice/suggestions/comments from any of you that have gone through this. I am making an appointment with a gyn/oncologist/surgeon for a consult and want to go in armed with my usual list of a thousand questions!!
Thanks in advance!! XO Suzan
__________________
 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!!
|
|
|
|
07-28-2009, 06:11 PM
|
#2
|
|
Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
|
Re: BRCA 1 2...it's Suzan again!!
Dear Suzan
I am very sorry about your BRCA 2 status. Although I tested negative, there is ovarian cancer in the family so I had a propholactic ooph 4 years ago. Please go to a BRCA savvy gyn as they have to be more careful in a BSO just in case. I also belong to FORCE - another online bc group for heritary cancers. I joined because I am seriously contemplating bilateral masectomy with immediate reconstruction and the BRCA positive ladies really know the score there as many get the surgeries propholactically. I would go on their site and ask away about BSO - they really know the score and other tests you need to get to watch yourself. They can be found at:
www.facingourrisk.org
Post on the main forum. You need not register to post.
I don't post there often (this is my place) but I am Becky H there. Soccermom is there too as Soccermom.
I know they will be great with all the questions to ask - especially BRCA ones and you can ask their board about recommendations for BRCA savvy doctors (gyn or others) and they'll lead you to some great recommendations.
Love and a hug to you
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
|
|
|
|
|
07-28-2009, 07:31 PM
|
#3
|
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
Re: BRCA 1 2...it's Suzan again!!
what is BSO? :-)
__________________
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!!
|
|
|
|
|
07-28-2009, 07:34 PM
|
#4
|
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
Re: BRCA 1 2...it's Suzan again!!
oops...ps Becky...knowing what I know now, if I were you I would go for the maastectomies!!!
__________________
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!!
|
|
|
|
|
07-28-2009, 09:55 PM
|
#5
|
|
Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
|
Re: BRCA 1 2...it's Suzan again!!
Susan,
I have not been tested for BRCA, but if I were you, I would seriously consider an oophorectomy. It is recommended that you see a gynecologist oncologist for better advise. Ovarian cancer is a more aggresive and silent killer, so don't doubt and start looking for answers. Best of luck,
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
|
|
|
|
|
07-28-2009, 11:26 PM
|
#6
|
|
Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
|
Re: BRCA 1 2...it's Suzan again!!
Suzan,
July 2006, I tested + BRCA2. Oct 2006 I found out I had invasive DCIS. Was small, but I opted for the bilat mastectomy with DIEP reconstruction. If you look at my profile, you will see that I had DICS twice before.
Dec 1006, I had an oophorectomy. It was a simple out-pt procedure.
Annually I have skin examination for melanoma since the risk for that is slightly elevated with the BRCA2.
Also, will have a colonscopy done every 5 yrs instead of the regular 10 yrs.
By the way, if I did not have the bilateral mastectomy, I would be monitered every 6 months with alternating mammograms and MRIs.
My surgical oncologist specialized in genetics. So she was the counselled and tested my sisters, my daughter and myself (actually she counselled me, but i was tested elsewhere)
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
Last edited by harrie; 07-28-2009 at 11:32 PM..
|
|
|
|
|
07-28-2009, 11:35 PM
|
#7
|
|
Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
|
Re: BRCA 1 2...it's Suzan again!!
I'm not up on the issues here but give kudos for pushing for the tests that grant you informed decisions.
|
|
|
|
|
07-29-2009, 05:03 AM
|
#8
|
|
Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
|
Re: BRCA 1 2...it's Suzan again!!
BSO is bilateral spaginal (spelling is wrong - it means the tubes) oophorectomy. The tubes need to be removed too - structurally the tubes and ovaries look different but the cells that make them up are the same. Many ovarian cancer patients were probably fallopian tube cancer but it looks the same and the surgeons can't tell.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
|
|
|
|
|
07-29-2009, 06:06 AM
|
#9
|
|
Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
|
Re: BRCA 1 2...it's Suzan again!!
I read a few weeks ago about a link between HRT and ovarian cancer. I think you mentioned taking HRT. I'd ask an oncologist about that link, since you are also BRCA positive.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
|
|
|
|
|
07-29-2009, 04:55 PM
|
#10
|
|
Senior Member
Join Date: May 2008
Posts: 28
|
Re: BRCA 1 2...it's Suzan again!!
Hi Suzan, as you see in my signature, I am BRCA 2 + also and deleterious is a truly awful word! On June 15 I had a total hysterectomy(uterus & cervix) and removal of ovaries and tubes. My surgeon was a Gynecological Oncologist, my onc suggested one as they will be more attentive to removing all the tissue. I was able to have the DaVinci, which is a robot assisted laproscopic procedure. For me, it was the easiest surgery I have had.
__________________
Found lump 3/07 at age 44
Surgery: 7/07 rt-MRM, lt-Simple Mast. w/ immediate implants using Alloderm
Tumor: 3 cm., grad III, poorly diff., Stage IIA, IDC, ER/PR-, HER2+++(FISH 3.2) 0/14 nodes
Chemo 8/07-3/08 AC x 6 DD, Taxotere x 12
Herceptin 3/08 weekly for 1 year-done 2/17/09!!!!
Brca 2 +, complete hyst 6/15/2009
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 08:23 PM.
|
Linear Mode
