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07-06-2007, 06:04 PM
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#1
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Ooph was all for nothing...
I had my ooph back on 4-5-07 and since then have had my FSH & estradiol checked and for some reason my FSH dropped way down to peri-meno once I had the ooph? My onc didn't care & said to just take the Femara anyway. But I did my OWN research & found out there is something called Ovarian remnants syndorme. Its can happen when you have a ovarian cyst removed which I DID when I had the ooph. You end up with some small bits of tissue that get left behind that can be stuck to the bowel, uterus, pelvic wall, etc. It says even though these bits of tissue don’t have a normal blood supply, they can remain viable and even proliferate in size. In some cases, these bits of ovarian tissue may even ovulate or produce "normal" amounts of estrogen.
I've had a 2nd opinion about this and seen an Endrocrinologist and they say its not worth going back in and doing surgery to find out if all this is the case...so they want me to go back on Zoladex and Femara. That means I did ALL this for nothing! I didn't want to be on Zoladex. I did this because my onc was playing GAMES with me and NOT giving me my Zoladex on time. Now I have an ooph and I'm right back where I started. ARGH! I just can't win. I am waiting to see the recent results from the Endocrinologist I just went to last wk. He took all kinds of blood work. He's looking for other things too that can cause this. But he said this is NOT right. Lucky me. Any of you women that have had a ovarian cyst removed at the SAME time as an ooph...you better double check to make sure your FSH is really in the meno range. Just because your estradiol is low is no guarantee. Especially if you were peri-meno to begin with like I was. My onc asked me if I was SURE the GYN really took both ovaries? All I know is he said he did...his medical records say so too?
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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07-06-2007, 07:53 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Chelee
It seems if its going to happen, it happens to you. I did have 2 cysts when I had my ooph but it all came out and my gyne and onc tested me 3 times to make sure (as you are correct on the cyst situation). But Chelee, I know God loves you and is just testing your sense of humor because if I were you, I wouldn't be worrying about breast cancer anymore - a stroke comes to mind instead. I would have to be on serious bipolar drugs by now.
You are weathering your storms gallantly dear girl. Do the Zoladex and Femara. What choice do you really have right now? Soon enough real menopause will come. Get your hormones run every 6-9 months so you know for sure. Gosh darn it. I know you will just take this - my motto is that you can make life easy or you can make life hard and there's nothing you can do about this. However, I would insist on a pelvic ultrasound at your gyne to see if he sees anything anywhere that "might" be easy to remove. Insist on seeing that he removed BOTH ovaries and BOTH fallopian tubes too.
I think of you often Chelee. Your name makes me smile.
Love,
__________________
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"
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07-07-2007, 09:52 AM
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#3
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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what a weird bummer
but I agree with our wise and wonderful Becky and all of her advice. I'm sorry about all the extra doctor visits and having to still be on zolodex, etc. I am glad you have consulted an endocrinologist as they are the experts in what is a very complicated specialty. And please know that I am sorry about the nonsens, but I am also somewhat fascinated in the info you shared. I would hope that you will share your learnings with us.
Meanwhile, let go a bit and enjoy these summer days-please.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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07-09-2007, 03:30 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Becky, I had to laugh at your reply. You do have a great sense of humor and believe me...I'm *trying* to KEEP mine. I've made alot of jokes to family about things that have happened to me during all my surgeries, trts, labs, etc. But this one takes the cake! I thought one of the best was when I had my port put in. The surgeon installing it is working away and while I lay there he says outloud, "OOPS"! (That's the LAST thing you want to hear your surgeon say.) I've made MANY a joke about that one. Thankfully the port has worked great. 
I really am not happy about going back on Zoladex after having a ooph. Even my 2nd opinion onc felt bad for me. But, I don't have many options. However I do want to SEE if this GYN really took both ovaries? I am starting to wonder? He is NEW to me. My old GYN retired. This GYN sure made me wonder after my LAST post-op appt. He says, "Ok, everything is great...so take this paper work outside to the girls and there is NO reason for you to come back to see me" We are done with everything...it looks good".
Now HOW strange is that? I still have my uterus. I did NOT have a complete hysterectomy. He doesn't want me to come back for pap smears, nothing? Very strange I thought. Now in hindsight I can't help but wonder if he didn't have a quilty conscience about something? He knew he was going to remove my cyst on one ovary...but now I wonder if thats all he really did? These people are driving me crazy...soon the men in the white coats will have to take me away. lol
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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07-09-2007, 03:46 PM
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#5
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Joy, Thanks so much for your post. I appreciate the support. I am glad I finally got to see an Endocrinologist as you mentioned. I can't wait to get the results from all the lab work he just did on me.
And yes...I will be more then happy to share with all what I find out. At least my journey has been anything but routine. lol I never know what's going to happen.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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