doctor called today..unsure what to do!

[summer22]

I have bilateral cysts/nodules the gyn has been watching since April 2006. The last u/s showed a slight increase of both and calling them "hypoechoic solid lesion and a solid nodule"
The ca-125 went down from 41 to 25 but the doctor said even though that is reassuring it is not for diagnosing.
He said I could either be conservative and wait 6 weeks for another trans u/s or he could remove both ovarian lesions along with the ovaries (i am 48 yr).  He said he is not worried about them, but it was up to me. I asked his opinion and he said he advises waiting 6 weeks and getting a repeat u/s.
I told him I would wait 6 weeks for another u/s .
I was surprised that he said when and if surgery happens, it will be removal of the ovaries. Which opens a whole new bunch of questions for me. I am thinking that the doctor feels with my age, it is best to just remove them to avoid cancer risk later. I don't know if I should wait 6 weeks. He said the lesions are small (2.4 x 2.3 x 2.2 cm for one) and (2.2 x 1.5 x 1.9 cm for the left ovary)
Is it better to just get the ovaries out now since I will be going through menopause in the next year or two???
I'm afraid of hormone replacement too, but that is something I would have to face in 3-5 yrs anyway. I was thinking about looking into bio-identical.
I also have a fibroid on my uterus that is 1.2 cm, grown since last u/s. Should I get the uterus removed as well.
ANy info or similar experiences out there?
Why don't guys have to go through all this decison making as they get older!!!!???

[mariak]

At 47,I was dx with ovca. For 20years I had fibroids on my uterus and cysts on my ovaries. I also had many U/S done.The fibroids were getting bigger and I was not feeling well so we started to dicuss doing a hysterctomy. the last U/S showed a mass and it was cancer. I have 3 grown children, 25,23 and 19. For 2 years my dr and I talked about a hystrectomy.I wish I would have done it then. I know it's major surgery,and you have to deal with menopause and hot flashes but I might have caught it before the cancer.Just something to think about. Also,many women have hysterectomys for reasons other then cancer.

[summer22]

I think since the cyst is complicated, and the radiologist is calling it a "nodule",  the gyn dr might feel removing the ovaries would be the best thing to do.
My sister is 49 and is starting menopause symptoms, so I am not far behind. Maybe removing the ovaries will be the best thing to do since I will start menopause soon.
I am always getting cysts.

[Gatsby]

While synthetic hormone replacement has been shown to cause cancer, this cannot be said for bioidenticals.
~Tascha

[mariak]

I ageee with pamnyc. I'm pretty new to this site so I'm not familiar with those who have actually had OVCA. Ne'chee what stage of cancer were you dx at? I was stage 3cand In also have a family history of breast cancer, fibroids and cysts. If I could have maybe prevented the cancer by getting a hysterectomy sooner,I would have done it in a minute. I don't take any hormone replacements.I've dealt with the night sweats and hot flashes. I wish I didn't have to deal with the chemo though. As far as needing any of these organs to have pleassure when I have sex,well, just ask my husband, we've had no problem there.I'm not saying that a woman in her 20's or 30's should jump into surgery, but at 48, 49, a woman with all these problems should really consider it.

[mariak]

If you don't mind me asking, I'd just like to know if you had OVCA and what stage you were dx at.

[turtledovemom]

Gentle reminder to you both....
It's highly unfair to summer22 to have her thread hijacked.  As women who have either experienced ovca firsthand, those who are facing the potential of it, as well as some of their family members, we speak from legitimate first-hand experience AND don't hesitate to tell each other its time to check with a doc.  

This isn't the time or place for a "voiding" contest.
In case you missed the header:
The Ovarian Cancer Forum

This is an unmoderated Patient-to-Patient Support Forum
For emergency, please see your doctor or call 911
By continuing, you agree to the usage  Terms and Conditions of this site.

Please also visit our new Ovarian Cancer Answers forum, moderated by by Dr. Annekathryn Goodman from Massachusetts General Hospital (MGH) in Boston, Massachusetts.

peace,
Anne

[Gatsby]

My ovaries had to be removed, not because of cancer, but because of 2 softball sized dermoids.  They had totally ingolfed the ovaries and the ovaries could not be saved.  Are you suggesting that since it was not cancer that I should have kept my ovaries and dermoids?  The dermoids could not be removed without taking the ovaries...This is not a one size fits all type of situation.  You need to be more compasionate and understanding of the women here.  No one needs to be bombarded with your negativity.  This is a SUPPORT forum, no judgements to be made.
~Tascha

[Mary 53]

THANK YOU for being the voice of reason on this thread. I too was feeling badly for the origional poster. My goodness. This particular thread has preoccupied my mind since I read it late last night... and I am supposted to be getting ready for my first vacation in three years. Before I take off, though, I just wanted to add my suggestion. Many of you have heard it before.

The suggestion: Research...research, and then research some more. Do your own research. I did. I thank goodness I did. Nothing is perfect. I didn't want perfection. I wanted a life. After my surgery for ovarian cancer in 2000, I looked for answers as to how to improve my quality of life which started dwindling rapidly approximately three months after my radical hysterectomy. About a year later, I got my life back and felt the best I had ever felt in about 5 years.

Many of you know that I use bioidentical hormones. I would not give them up for the world. It surprises me that there is still so much controversy about them. My doctor and I occasionally need to make adjustments in the doses. We look at the research, the statistics, my current health status, and what works for me.

Only I have walked my life path...and, I cannot claim to say that I understand exactly what others have gone through. But, I can definetly stand up for myself and share what I have learned. These work for me. The information is out there. If I had stopped studying ways to improve my quality of life, I am not sure where I would be today. I have worked out for thirty years, eaten healthfully since age 11 (long story)...Diagnosis of ovarian cancer at age 47 was a stunning surpise. More surprising to me was how difficult surgical menopause was/is. I found answers and added this to my healthy routine and the results have been better than expected.

My best to all. Off to vacation. Yippee!

Mary

[mariak]

Apparentally you didn't have OVCA which made your decision to keep your ovaries easier to make!!!!!!!!!Also, I never once thought of myself as being CASTRATED. Unfortunately, I did have cancer. But if I didn't, at 47,with 3 grown children trying to keep my ovaries with all other kinds of problems going on down there, that would be the last thing on my mind.I want to be here for my children and grandchildren without worrying constantly about anything turning into cancer.

[Mary 53]

I thought we were all done with the word "Castrated." Thought we put that to bed, so to speak. At this point, those are sounding like fighting words. We are smart women. We know we have no ovaries if we have no ovaries ....we get it. Too many threads have already address the offensiveness of the word "Castrate." Let's let it go and continue to support other women, as I see you are wanting to do.

Thanks. Now I am leaving for sure...vacation :)

[turtledovemom]

I really find the concept of any doctor performing unnecessary surgeries, including hysterectomies to be offensive.  However, it's not nearly as offensive as the thought of my lifesaving surgery being considered a castration.  The operative term here is LIFESAVING.  Is it possible that there are some individuals who are equating this treatment for ovarian cancer to be an elective procedure?  Are you putting this on the same level as a nose job, breast augmentation or lip plumping?  Given the alternative, I'd readily accept my doctor's removal of my diseased organs anytime.  

You're right.  We have choices in life.  I choose to preserve my life for as long as I can.  I also choose to help educate other women about ovca, not to terrorize and intimidate them.  There's a difference, don't you think?
peace,
Anne

[Linda J]

Hi there, because the cysts are on both ovaries, the doctor may be suspecting serous cystadenomas...they often appear on both sides. While usually benign, they have the potential to become malignant. They are not really cysts, but actual tumors, originating from epithelial cells on the ovaries. This may be why the doctor is suggesting removing the ovaries as well? Also age is a factor too.

Linda J

[ne'chee]

My doctors and the gynecology/oncologist researchers I have interviewed use the term castration. The medical literature uses the term castration. I chose not to have the castration that was recommended for me. I may change my mind at some time, depending on future evaluations.

[AnotherKatie]

You are severely passive aggressive and should seek treatment for your emotional and social behavior pattern issues, which have nothing to do with ovarian cancer....

[mariak]

AMEN!!!! I COULDN'T HAVE SAID IT BETTER THEN THAT.

[Tybear]

Oh lord, are we back to this castration business again??? I have Ovarian Cancer - To keep my ovaries would have killed me. My gyne/onc never once used the word castration to describe what I went through - it's called being sensitive to ones struggles. This is an Ovarian Cancer site. Let's be a little more sensitive to the women like me, who have been through enough already. I highly doubt you would go on to a testicular cancer site and correct all the men there, by telling them that they are now considered castrated - why must you do it here???

[Linda J]

Hey tybear, I agree with you completely. I've lost one ovary and do not feel the least bit "castrated". That terminology is archaic and an insult to many of us.

I say we ignore her.

LindaJ

[summer22]

I'm the original poster of this thread. I can see there are more opinions on this than I had expected! I've been reading, surfing, googling and my head is spinning with all the information.  I have an appt for an EMB for hyperplasia (not atypical) coming up in early August and will discuss the ovary problem at length with my Gyn Doc.  I've been taking provera for the hyperplasia,  hope that is all  cleared up.
I really don't want to get my ovaries removed, but I would rather have them out if there is a risk of growing complicated cysts that my end up cancerous some day. I'm thinking of getting another opinion if this next u/s shows an increase in size. My husband thinks that the ovaries would be safer taken out.
I'm really bummed out (pmsing to the max this week) and worried. I have alot going on in my lifet besides this medical issue. I have no idea what I will do as far as replacing hormones. I'd like to do bio identical but not sure of the cost, doubt if my insur will cover it.
Thanks to everyone who has responded so far.

[turtledovemom]

summer...
I understand how overwhelming this entire topic can be...especially when you're presently in the middle of it with a big question mark hanging over your head.  Mary hit it straight on when she said that research is the key.  We're so fortunate to have the www available to us, even though the amount of information is mind boggling. Stay strong and keep an open mind.  We're here for you, regardless of your decision.   Please stay in touch.
peace,
Anne

[Tybear]

I will be the first to tell you that trying to sort out all this hormone stuff is unbelievable. I had no idea how many types are available. You have to be your own advocate on this issue. Everytime I have had a concern about my HRT (currently I'm on .625mg of Premarin) I was the one who initiated a change in the dosage, not my Dr. In Canada, my family Dr is the one who is managing all of this, and even he doesn't really know what to tell me. I requested to see an endocrinologist and will get the results back from all those tests this afternoon - I'm very curious as to what my hormone levels are at now. I'm 27yrs old and realize I have a long life to live - I will not settle until I find the combination that works for me. Find out all you can about it now, so you are really aware of what you will be going through when the time comes. Good luck!
Becky

[ne'chee]

Summer

There's a wealth of unbiased information here which you can use to formulate your questions to your doctors.

If you have ovarian cysts:
http://www.gynsecondopinion.com/ovarian-cysts.htm

[turtledovemom]

summer...
I just reread what's left of the posts to your original thread.  There sure are an awful lot of things for you to consider.  If your cysts/nodules aren't resolved by the time you get back to the doc, you've got some options.  As Mary said, and we've repeated (because we really believe that you're an intelligent woman), research is the key.  Unbiased research might seem hard to come by, but it's out there.  Two sites (among many more) would be:

www.asrm.org/Patients/mainpati.html
www.cdc.gov/CANCER/ovarian/spot.htm

Neither one of these sites is affiliated with any one specific physician.  We'll be posting more of these in the near future.  

I hope you're feeling well, and staying strong!
peace,
Anne

[ne'chee]

Ooops meant to post this link too. From "Menopausal Medicine" the newsletter of the American Society of Reproductive Medicine. For Clinicians Who Provide Care for Women


RISK-BENEFIT ANALYSIS:
WHAT CONDITIONS MERIT
OOPHORECTOMY?

There are few if any conditions, except
ovarian cancer, where removal of normal
ovaries has been shown to have a greater
benefit than risk profile.

{...}

Physicians should seriously consider the
positive benefits of ovarian conservation
for patients at any age.


Article headings include:

THE POSTMENOPAUSAL OVARY:
MANY VALUABLE FUNCTIONS

DOCUMENTED ADVERSE EFFECTS
OF OOPHORECTOMY

Also includes a table which says (paraphrased)

Documented changes following oophorectomy

* increase in cardiovascular disease
* increase in osteoporosis
* increase in hip fracture
* difficulties with thinking and memory
* skin loss, wrinkling accelerates
* increased depressio
* libido and sexual function difficulties
* urinary tract atrophy


http://tinyurl.com/qy6j5

www.asrm.org/Literature/Menopausal_Medicine/Menomedfall99.pdf

[Mary 53]

Hi Summer,

For all the symptoms that were just listed...this is why I take the bioidentical hormones. I am protected as best I can be if I keep my eyes on things and stay balanced...I work with my pharmacist and my doctor. Things are good. Insurance is now covering about half the cost of the bioidentical hormones. Most I now get at a compounding pharmacist (they are great resources!!!) but I have also had scripts filled at regular pharmacies for some of the bio's I have taken in the past. There are many different formulations and doses....

Take a look at Christian Northrup's book, "The Wisdom of Menopause"...great resource. Dr. Uzzi Reiss's book too on Natural Hormones....I would suggest you get both if you can. I still refer to these books and I have been on the hormones for six years. My sister was on them for approx 12 years. She just went off all hormones about six months ago...just to see (she is 65)and she is ready to go back on. She wants her old self back...she just took up baton twirling about a year ago and she has been in local parades....what a hoot!

Take care...I am out of town, so if I don't respond right away if you have a question...you will know why. Borrowed a computer...I am thankful but it is SLOOOOWWWW....

Mary