Is Anyone Considering Oophorectomy instead of Tamox?

DFC1994

Leklovessrk,

I am happy to answer any questions you have.

I had little time to make my decision since i had the deep vein clots and the BS and ONC said it was too much of a risk giving me the tamoxifen due to clots and clotting disorders(genetics) so I was pretty much left without a choice to lose the ovary,the ONC said it needed to be done ASAP and that freaked me out, but all in all I would gladly do it again if I had to. My thoughts are ,now I can't get ovarian cancer plus I don't have the side effects of the pills and was told I recieve the same protection as if I took the pills.

The side effects of losing my ovary(had the other one taken out 10 years ago) are hot flashes,vaginal dryness,painful sex and insomina. I am currently using ambien a couple times a week to help with the insomina.My Dr is checking into if I can safely take effexor for the hot flashes along with my clotting disorder. If he finds I can he will prescribe it to me.

I did start taking Vit E after I got off the blood thinner I was on and the hot flashes seemed to have slowed down.At least they are more bearable now.

Good Luck with your dicision.

Dee

CrunchyPoodleMama

Dee, be careful of Ambien... I took it fairly often before my dx and later found research that linked breast "changes" and possible heightened breast cancer risk with Ambien. It also caused (for me) heightened extreme depression.

Also, although I'm convinced Effexor saved my life at a time when I was chronically depressed years ago, it also is HORRIBLE to get off of... I've heard it's similar to heroin addiction withdrawal. That's not to say "don't take either of those," but rather, know the risks of anything you take, and don't rely on just what your doctor says about them. Every medicine that treats side effects has its own side effects and interactions with any other drugs you're taking... and often these interactions are not known by the medical community. It's always better to treat with natural means rather than drugs (e.g. your taking vitamin E is great!) whenever possible, and that goes for side effect treatment.

Shrek4

I have to confess I am extremely biased agains Effexor. I had a very good friend who died because of it.

Member_of_the_Club

I know effexor's reputation but I've been on it twice and had no problem at all going off.  The first time I tapered very slowly and the second time I just stopped.  It helped me tremendously while I was on it.  Like everything else, we all react differently.

SISKimberly

I chose to do a complete hysterectomy (ooph and uterus).  I, too, did not want to be on Tamox for 5 years after reading all the research.  I've had very few SE's other than the usual menopausal weight gain, but I was in chemopause for over a year when I chose to do my surgery.  Good luck with your choice and your decision. 

leklovessrk

Hi Ladies and Happy Friday!

DFC1994 - Thank you for offering to answer my questions.  I don't know what I would do without the valuable information I get from other BC women.  I have had months to think about what to do next but I think sometimes that is worse.  I have been so consumed with this that I hardly think of anything else now.  I am anxious just to make a decision and get on with it - whatever that might bring.  I have my appointment this afternoon.  I am armed with a giant list of questions.  You should ask your doctor about clomazapem or xanax to help you sleep.  I take one every now and then to help me shut off my mind and fall asleep.  My doctor prescribed clomazapem when all this stuff happened.  It really helps when I need it.  Won't help long term with insomnia but can help you get a good nights rest once in a while.  Not sure about SE but I certainly haven't experienced any and like I said, I don't take it everyday.

CrunchyPoodleMama - I took Cymbalta for about 8 months a few years ago.  I was having a really hard time after the death of my brother in February then the death of my mother in July. I was having physical pain along with depression.  Depression can cause physical pain.  I did really well on the Cymbalta.  I at first was against taking it because I just don't like taking anything longterm but my doctor convinced me to take it.  It really helped and quickly too.  Not much SE other than a little weight gain and I had no problems getting off of it. 

Siskimberly - Thanks for responding.  Glad to hear you are doing so well.  How long ago did you have your Hysterectomy?

Anonymous

Deirdre- Just wanted to tell you that my BS at the Arizona Cancer Center, Dr. Ley, just told me I did not need Tamoxifen after BMX with DCIS so maybe their new research is showing otherwise.  I agree with what you wrote, wholeheartedly, about needing to step back and get perspective of what each procedure will mean to us.  Well said.

jessamine

I am all over this site saying this, but I'm keeping it up, so here goes. I do NOT advise the ooph! I had it because I am BRCA+ but it has been really hard- sure you have some of the same SEs from tamox, but at worst, it's for only 5 years (and most people only have them for a few months)- after the ooph it's forever! You say you're afraid of the health consequences of Tamox? Having an ooph is not neutral! It increases chances of heart disease (the #1 killer of women in the US) and osteoperosis- how much? They don't know b/c we're the guinea pigs! They're recommending them to everyone this year- I predict 5, 10 years from now it'll be looked back at as a terrible mistake.

Since the ooph- I have had terrible hot flashes, every day, for almost a year now and no sign of letting up. I don't sleep the way I used to. I was unable to have sex for months, until I finally got prescribed and estring- it works but I'll have to use it forever, every few months, and it's not the same, it never will be. My skin is dry. I'm aging visibly- and I'm 36. There are times when it's really worth it- I had a big fast growing tumor and they were worried, plus there was the gene peice- I would maybe do it again. But I see young women with tiny tumors being urged to just go ahead, it's harmless and I think it's horrible!! That's my piece, again....(didn't read all the posts hope it's not too redundant)

Anonymous

jessamine- I read something you had written about this on another post and I have to say that your emotional posting did figure into my equation when deciding not to have an ooph so thank you.  Don't worry about being redundant because you never know who you are reaching on all the different threads on here.  Thank you for your honesty.  I'm sorry you are going through all that but you've probably helped a lot of other women (like myself who had DCIS) from having to as well.

Deirdre1

Kate33:  Did you go through the genetic clinic @ AZ Cancer Center?  In 2007 after having the genetic counselor review my family history she wrote recommendations (it was a book!) to the bs within the AZ Cancer Center and that's how the doc's came up with their recommendations.  But I agree with the new doc's perhaps they have lessened their aggressive approach.. That recommendation, to have my ovaries and uterus removed (that and the fact that at the time they did not have a ps on staff for reconstruction), was the reason I didn't have my surgeries done at that AZ Cancer Center - .. I'm glad to hear they have changed - they really needed to!  So glad you have the benefit of the "new" cancer center!!  Best!  Deirdre

Anonymous

Deirdre- No, I never did the genetic testing or counseling.  My BS said if I wanted to do it she would order it.  I found out my insurance didn't cover it (don't know if anyone's does) but it was going to be several thousand dollars according to my GP.  I weighed the benefits with DCIS and decided not to do it.  

jessamine

Kate- thanks! It's ok, b/c I think I would have decided to do it even knowing, but I just can't stand the idea that people who don't need to are taking this drastic step... I really didn't realize how lucky I was to be able to get the genetic tests done so quickly and easily- I got funneled into a study so quickly as part of my early treatment that I thought it was standard, but I've heard many stories like yours since...

Deirdre1

Kate, Genetic tests are expensive, and almost all insurance will reject them or the request for them until you pursue it.. My guys said "no" but I pursued it (noting a copy of my request would be going to my Congresswomen and eventually they covered all the expenses related to the genetic piece of it..  It's a complicated story but I actually had the genetic tests going (along with a breast MRI)  when they found DCIS.. My daughter's doc had asked her to ask me to have them (for my daughter's sake) because of our strange history (to protect my daughter) and so because she asked I was going to have the counseling one way or another .  So they paid for the genetic testing, the breast MRI and THEN several other tests that normally they would have turned down.. I'm glad I had them done for my kid's sake but truly they weren't anything but a problem for me - they created more fear in the doc's that reviewed the case even though I was BRCA-!!!  Sometimes this cancer stuff is just strange!!!

Take care

Deirdre

CrunchyPoodleMama

jessamine - I'm so glad you weighed in on this... sadly, your experience is exactly why I was so vocal earlier on this thread that this should not be considered a "quick 'n' easy fix" for someone with DCIS, unless they have very definite grave risks that only an ooph can amend. I'm SO sorry for the awful experience you've had -- although, like you said, it was more likely to be a worthwhile trade-off for you since you were stage II... very different situation for someone with DCIS. I hope things get much better for you!!

rgiuff

Jessamine, I know this is a controversial subject, but maybe you could just get a little low dose hormone replacement of estrogen and testosterone, not the usual dose given to most menopausal women, but maybe half, just enough to alleviate some of your symptoms.  Most doctors will probably say "No way."  But reading the results of the Women's Health Initiative, which shows that estrogen replacement  without progesterone does not significantly up the risk of breast cancer, I think I would want to give a little estrogen replacement a try if I were going through what you are going through.  And I have seen some women on these boards whose doctors are letting them do that, due to the severity of their menopausal symptoms.

I'm so sorry to hear what you are going through at such a young age and I understand if you think my idea is nuts, but if you are suffering that much, quality of life is important too, and it might be worth at least researching the subject.  After all, if you hadn't had the oophorectomy, you would have still had these hormones in your body naturally.

mollyann

Rose, I think you mean the "synthetic" progestin, Provera, was the culprit in the Women's Health Initiative. NATURAL PROGESTERONE WAS NOT USED in the Women's Health Initiative.  

The hysterectomy group using estrogen alone (Premarin) got significantly less breast cancer.

Oh, Jessamine, I feel for you. PM me if you need to talk.

joyceva

I just found out today that I have the BRCA gene.  A hysterectomy and bilateral mastectomy are one of the options - the other option suggested is being checked up on every 6 months.  I've gone through surgery, chemo and radiation and haven't gotten my period back.  Does anyone know if the oophorectomy/hysterectomy will not be as bad since I'm already in a chemical menopause?  Just hoping on that one.