Completed Bilat surgery, now getting ultrasound on ovaries
Comments
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I am currently recovering from a bilateral mastectomy with reconstruction. Tomorrow it will be 2 weeks. I am doing GREAT!!! I am very happy that I decided to have this surgery. I had DCIS and tested positive for the breast cancer gene. My pathology report came back clear - no new cancer, nothing invasive, no hormone receptors.
So, I visited with my breast surgeon yesterday. I asked him about my ovaries since I was BRCA1+. He recommended that I have ultrasounds on my ovaries, just to be sure. And I might consider having a prophilactic surgery and have my ovaries removed. I don't have children and I've been on birth control for years. I don't plan on having children, so that part doesn't bother me.
He recommended I follow up with my OBGYN. I got an appt with her on Thursday and they're going to do the ultrasound then! WOW! Did I mention I love my OBGYN'S office? I am kind of nervous for this ultrasound. Probably because last time I was being "proactive" since my sister had BC, I ended up finding out that I had BC, too.
Has anyone had their ovaries removed after finding out they had BC? I feel like I just got through this roller coaster ride with BC and hope the ovaries are okay!
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Hey kittycat!
Congrats on the new girls! I see my OB/GYN friday......I am BRCA neg but am very high risk and am having prophy B LM w/ immed recon sep 22. My IDC from last oct had ER and PR each 98%pos and her2nu neg......I've been on tamox since feb and have been so incredibly erratic (periods) since....the last one was I think 40 something days ago. So yes, I'm nervous....probably just irregularity due to the Tamox but I want all checked out. I'm like you-no kids and ok w/ it. I'm hoping to keep my ovaries(since I'm neg BRCA but have really bad fam history of heart disease) for now but have pretty much decided I'm ok w/ losing the uterus for now if recommended. At any rate......I readback what I'm saying and honestly had anyone told me I'd be doing this stuff, making these decisions a year ago I'd not have believed them! Let me know how your gyn appt goes..as will I on Fri!
jennifer
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Congratulations on your clear pathology!
I had a preventative double mastectomy and an oopherectomy as I am BRCA2+. Ultrasound and CA125 for ovarian cancer is a good place to start, but it is important to know that these tests are notoriously unreliable for detecting ovarian cancer, and thus it is often not found until it is late-stage. Hopefully better surveillance tests will be available one day, but for me removing the ovaries and tubes was the right choice! Keeping them just seemed too risky!!
The ooph surgery was day surgery, and recovery was easy for me.....especially when you compare it to the mastectomy and reconstruction!!!
Good luck with all the tough decisions!
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Hi everyone,
I am also recovering from a bilateral mastectomy. Two weeks and one day ago and I got my drains out today. YYYeeeeaahhhh. That was the worst part. I have to go back to outpatient surgery Friday because he said that he has to reclose one of the vertical sutures because there is a little dead skin. I am glad he is all over it. I am now worried about the ovaries as well. I had a pelvic when I got my mammogram prescription back in the beginning of July. A medical oncologist said that an ultrasound and pap every six months is the standard of care and that my risks are not that high because I have noone else in my family with a history of either breast or ovarian cancer. I still think that I am going to discuss this with my OB/GYN next week. I have also had my tubes tied which also reduces my risks and I have one child. There is just so much to think about. I also read one article that said that the reason that people find ovarian cancer late is because the symptoms are size specific and most have bloating before they get it checked. At that point it is large and late-stage. Who wants to take that risk after what we've all been though?????
Smirks44 - how long were you out when you had your ovaries removed?
Julie
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Kittycat,
Glad to hear all is going well post surgery. Since you mentioned you are BRCA1 +, you may wish to consult with an gyn/oncologist and not a regular ob/gyn. They are BRCA savvy, whereas ob docs do not often have the experience/knowledge. If you plan on preventative surgeries, there are certain protocols/peritoneal washing that are done by these surgeons as well. You should also consider heavy surveillance with TVU's and Ca125's every 4-6 months in the interim. Knowing there is no early detection currently available makes surveillance rather difficult. Best wishes to you, no matter what you decide.
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Hi Julie!
I kept the uterus...tubes and ovaries were removed laproscopically. My recovery was about 1 week. I had no complications, and very minimal pain. There were only 4 tiny incisions, about 1 cm each.
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Hey girls, I have a similar problem. I had my bilateral with immed recon w expanders two months ago (after I finished chemo) and my path was great, stage 1, no nodes even though I had bilateral BC. I had a tumor in my right that completely disappeared with chemo and ended up with a 1.2cm tumor in the left (it had shrunk). All was good news. I am into my expansion process and have one left. I was started on Tamoxifen about a month ago and was having no problems. I am BRAC neg. I thought all was going well and I could head off into my five years of Tamoxifen and move past breast cancer. Then I had the CYP2D6 test. My insurance company called my doctor and asked if he would approve me taking it and then they called me and asked if I wanted to take it. I was shocked because I thought that I was going to have to fight with my ins. to get it. Anyway the results were in and I had an onco follow up last Thursday. Poor metaboliser. Now I am scheduled for a complete hysterectomy on Monday. I could of just had the ooph but I thought what was the point of leaving the uterus in and worry about that getting cancer one day. I am crushed because this is another surgery and we did want kids and had been trying before the big C diagnosis. I am afraid of the early menopause thing. Does anyone know how this affects your skin, hair, bones, etc.? I can only imagine that we need these hormones for something besides feeding breast cancer. This sucks.
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Thanks everyone on the great advice. I am so glad that I am keeping myself informed. There are a lot of questions and this road can be so difficult. I am going to ask to see a gyn/oncologist. Today is my ultrasound at my regular gyn's office. I get to drink 32 oz of water starting in 20 minutes for an hour! I am seriously praying that there is nothing wrong with my ovaries.
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I find it interesting that you have to drink water! I had to do that for ultrasounds during pregnancy, but not for ovarian ultrasounds! Wonder why???.......
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Good news! No masses on my ovaries! Yeah! I had 2 clear cysts. Gyn said it was normal and they were going to do a follow up ultrasound in 12 weeks. I stopped by my oncologist's office today to give them my path report. I'm not sure if he'll recommend any treatment, since I was such an early stage and no hormone receptors. They're having me meet with him tomorrow AM.
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kittycat,
Are you having CA125's done? Was your breast cancer triple negative?
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My oncologist ordered a CA125 today. He wants me to wait a little bit before I have the test, mainly because I just had surgery. So, I'll be getting that test done in October.
Also, all I know is that I did not have any hormone receptors. So, the oncologist doesn't want me to take Tamoxifen.
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Yeah, my oncologist said that taking out the ovaries doesn't necessarily mean eliminating the chance of ovarian cancer 100%. There is a lining in the abdomen that is the same kind of cells as the ovaries. For now, they are going to do ultrasounds (pelvic and vaginal). I have a follow up in 12 weeks and will be doing the CA125 test, as well.
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Hi there, just saw your post on the top and wanted to tell you my experience....
Since I was super high ER++++ I was told that YES removing ovaries affords quite a bit of protection. (I had chemo also and a unilat lat flap and mtxmy and recon).
I pulled the whole thing out, uterus, ovaries, tubes.....for me, it was a no brainer. While I know this does not super guarantee no cancer anywhere, it should help alot.
I am 53, was no where near menopause. I had lupron to shut me down for 7 months so that I could have arimidex as I had already taken 5 years of tamoxifen for the 1st go round (lumpectomy and rads). I have not had ANY
hot flashes, horror stories that you have heard about emotional meltdowns, significant bone loss (I do weight bearing and take tons of calcium and D) or any cognitive difficulties other than being my usual goofy self. It's vastly overrated, this surgery. no big deal. I am not my plumbing, any more than my husband is his. I have one daughter, 20, and the baby shop has been closed for awhile so i have a different perspective on this.
If you do need to go the surgical route, no worries. It was done laparoscopically, I only ever needed tylenol and that, only occasionally, other than being bored out of my gourd during recovery when you can't do much. it was a walk in the park. I was sick and tired of worrying about cancer in my girl parts. For me it was an easy choice, easy decision. Liz Taylor had her entire girlie bits out and no one could call her non feminine
.Best of luck to you all!!!!
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oops: NeNe: (cute name)
Yup, you will need to protect your bones with at least 1200 mg. calcium daily, 800 mg. vitamin D(make sure it is D3) and a good multi. You will need an hour of weight bearing exercise daily. I use an air stepper, but walking is excellent. You may also want to lose weight if you need to, make sure your cardio is good in that you get some each day, and so far, I am 53, and generally mistaken for early 40s. It may be good genetics, but I have seen nothing happen as far as my skin or hair at all.
I am really strong, I feel great, tons of energy, and sex with hubby without protection! Yay!
As far as kids: under your heart or in it. Adoption is a wonderful thing. So is surrogacy.
Best of luck and PM me if you have any other questions on all this stuff.
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Thanks, Athena, I like yours too!
We are all warrior goddesses. Kids are great, whether store bought or home made. So is choosing to be kid free!
I like to think of breast cancer as becoming a phoenix. We emerge much stronger, and truly, deeply feminine. We know we are more than our "eggs". Gosh I've flushed so many each month, I can't imagine. The world does not need more of my eggos!
Whatever you do, do it with your heart and all will be well.
God bless all sisters and valkyries.(my scandinavian is showing
xoxo
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anniealso, Thanks for all of the info and your attitude (and I suspect you) is FABULOUS! You make me not afraid of all this crap. It has just been a big year with the BC diagnosis and treatment so I will be happy for everything to calm down. You are right about children. I have a younger brother that is adopted and he truly grew in all of our hearts. Thanks again for the advice and you are now my inspiration.
xoxo Nene
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I had the ultrasound on my ovaries today as well......each has a 2 or 3 cm cyst(kitykat-what does 'clear 'mean?).....apparently not to worry, we'll re-check in a couple mos.....no period(or sexlife....waaah!) since beginning of july. Bloodwork sent off for FSH, prolactin, TSH. Periods shorter and stretched out since Tamoxifen started in Feb for me.....med onc had said if I had cysts I'd probaby stop tamox, recheck ovaries to see the cysts gone then decide to resume or go w/ injections....feeling very premenstrual......enough to consider 'yanking the plumbing'....Hey a month from now I'll have no more ducts or lobules!
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My obgyn meant "clear" that they were not masses on the ultrasound (which would be worrisome). Anyway, I am happy to not have something to worry about right now (other than dealing with my expanders)! I may choose to have my ovaries removed. We'll see. One of my cysts was over 3 cm in diameter. My obgyn said that at 4 cm they might look at removal, if it's painful. But then again, it could be hormonal and shrink.
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What are the side effects of removing the ovaries? I'm surprised I didn't ask that question!
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kittycat, I just had my ovaries removed in June. This just shuts most of your estrogen down, so it's like I'm in menopause now, although I already was because of chemo. (I'm 46) So, I had to get a bone density test, which showed I had osteopenia. Thin women tend to have this problem. So I have to have IV Zometa every two mos. I also have hot flashes, but nothing I can't handle. I have a little bone/joint pain, but I think that is from the Arimidex I am also on, which blocks any estrogen that is left in my body.
Since you are triple neg, they are taking your ovaries to prevent ovarian cancer from your BRCA+ status, not to stop feeding any stray cancer cells, such as er/pr+ women have to do, so you shouldn't have to eliminate all of the rest of your estrogen, which will be better for your body.
That's all I can think of. Stay strong!
Deen
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Kittycat-----I had immediate surgical menopause after my TAH/BSO (not by choice---due to ovarian rupture)--- I was initially dealing with a lot of SEs due to major abdominal surgery, but the night sweats and hot flashes from the estrogen depletion were pretty rough the first year; they did level off over time, but they still persist now even over 4 years later, but are much more manageable. Some people say Effexor helps them a lot; I just didn't want to deal with any more SEs from any other meds, so I just live with them. I do have arthritic achiness/ stiffness as estrogen lubricates the joints, so now I'm trying glucosamine to see if that will help.
Anne
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Thanks Kittycat! Good info......I really don't think mine(cysts) are painful....I have been sore this week (I'm pretty sure) from doing alot of core strengthening at workout class, so honestly wasn't sure i t was crampy/premenstrual...but more than likely from workouts......I'm 3 weeks out from DIEP! Who even knows if I had these cysts previously too.....as I've never had my ovaries ultrasounded.....never a reason before......
Annialso-you are so funny and TRULY an inspiration! God I love when people mistake me for mid 30's! HUGE compliment from my PS during eval for DIEP"planning on having more children?" Dude, I'm pushing 45! not to mention I don't even have a current hot and heavy manfriend-But! How nice to be put in that category!.... I swear it's the immaturity!.....tho now have decided maybe it has been the estrogen? And thank god for hair color......actually, I am just so freakin happy Ive been able to keep my hair!
TXBadboob we're close in age...just out of curiosity..were you ever on Tamox and any hot flashes then? guess I've alway considered the tamox a warm up for real menopausal symptoms....be it natural or medical/surgical induced......since not sure and too early for me to know....
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Hi everyone: Just chiming in here. I had bilat-MX in June and am presently undergoing recon with TE's. I had an ultrasound last week for a right ovarian ache I've been having off and on for ages. I used to have regular ultrasound's because of the pain and I was always told they are "functional cysts" and nothing to worry about. But since my diagnosis with BC I'm naturally more concerned, well let's just say more WORRIED TO DEATH that it's something else! So off I go to have this abdominal ultrasound and also an endo-vaginal ultrasound and they see absolutely nothing on my right side (the one that's giving me pain) but they see a cyst on my left ovary! Go figure.... apparently, it's just a cyst and my follow up is in 6 months. I had a hysterectomy 10 years ago but left in my ovaries. I've since regretted doing that but my ONC GYNO says it's better to leave them in than to remove them. He says that I don't have any more chance of getting ovarian cancer now than I did before I was diagnosed. I'm so confused, I don't know what to believe!
Terri
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Be sure to check out the website: www.facingourrisk.org
The organization is FORCE and is dedicated to hereditary breast and ovarian cancer and BRCA+ issues. There will be a wealth of information there for you.
As others have mentioned be sure you are seeing a gyn/onc for your ovarian surveillence.
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I already joined FORCE, but haven't done much with them yet. Thanks!
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