In the wake of sad news about Elizabeth Edwards passing,

miki
miki Member Posts: 22

I am reconsidering my treatment options.

I will be finishing up my 5 years of Tamoxifen in April. (I'm pre menopausal)

Before yesterday, I was leaning toward stopping further treatment since if I want to continue on to AIs, I either have to have ooph or shut down ovaries... I had doubts about taking out or shutting down perfectly healthy organ, and what kind of effects that would have to my body's overall balance. Since I am feeling great and strong, I was going to just stop here and take my chances...

 Who was I kidding???

Yesterday's sad news made me realize once again how serious, unpredictable, and deadly this disease is. It made me realize I need to use every option available while it's available...in order to increase my chance of growing old...

I talked to my onc and he conferred with 2 other onc. They all are recommending I have ooph and take AIs. So I guess that's what I'm going to do...

I'm sure there are many of you out there who had ooph in order to take AIs. How are you doing? and do you have any regrets?

How long does it take for me to recover from ooph (microscopically)? I can not afford to take many days off from work.... ( I work in a restaurant so my work is pretty physical...)

Anyway, any feedback is appreciated.

Comments

  • Texas357
    Texas357 Member Posts: 1,552
    edited December 2010

    Miki, I had a laproscopic hysterectomy and oophorectomy the year before I was diagnosed with breast cancer. It was my first major surgery and I was very worried about down time. In reality, although I was sore and a little tender, the surgery didn't slow me down much at all. I stayed one night in the hospital, and very little time resting after that.

    I will say that I was otherwise in great shape, healthy and very active. That may have had a lot to do with how well I tolerated the surgery.

  • Pure
    Pure Member Posts: 1,796
    edited December 2010

    I had an oomph right after having my son so if anyone should have had horrible side affects its me-and I didn't. I didn't even have a single hot flash. I am very very very into health food and working out so please no that...I know that has got to be the reason but the surgery itself was simple-the recovery very simple and to tell you the truth it was probably the best thing I ever did. i feel so even emotionally. Remember MOST women do fine and have no SE"S.

  • Pure
    Pure Member Posts: 1,796
    edited December 2010

    PS-my skin looks amazing as well. I had oily skin so that cleared up:)lol got take when you can get with this bc crap.

  • KerryMac
    KerryMac Member Posts: 3,529
    edited December 2010

    I've done it too - and I don't have any regrets. Not one.

  • azs40
    azs40 Member Posts: 99
    edited December 2010

    Miki...I finished treatment for BC in 4/09. I went on Tamoxifen at that point (I was 39 and "pre-menopausal" - but chemo had essentially shut things down anyway). I had a laprascopic oopherectomy last November, because of ER/PR+ status, and BRCA+ status. I had discomfort for a couple of days, but took the drugs that were offered and can honestly say I was ready to go back to work after a week. I'm "lucky" in that I haven't had huge issues with hot-flashes, menopause, etc., and although I have achy joints from the AIs, I consider it a small price to pay for doing everything I possibly can to stay alive. 

  • azs40
    azs40 Member Posts: 99
    edited December 2010

    And...I don't regret it. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2010

    Ok everyone, here's my question.  Should I have switched from Arimidex to Tomoifen because it has less SE"s.  I do feel much better than I did on the Arimidex.  I actually felt like I had bone cancer the SE's were so bad, not to mention how much it was ruinning my sex life.  After switching to the Tomifen I do feel better.  Like you miki, I want to stick with the treatment that will give me the best chances of not recurring.

    image

    Barb

  • holtbolt
    holtbolt Member Posts: 625
    edited August 2013

    I had an ooph (so I could start Arimidex) and the recovery was so quick and not a big deal at all.. compared to bmx, recon, chemo.... it was a non-event.  Being thrust into early menopause caused hot flashes and mood swings but they are tapering off and inevitable anyway (my opinion)......  I've had no SE's from Arimidex except maybe achey feet in the morning... once I get moving, that goes away... the peace of mind knowing the ovaries are gone (and can't get cancer or put out estrogen) is huge for me..... .good luck!

  • karen1956
    karen1956 Member Posts: 6,503
    edited December 2010

    I took a week off work when I had my ooph...it was day surgery done laprascopically....fatigue was the biggest side effects....but then again I went from bilat to chemo to rads to ooph!!!  I took AI's for 3 1/2 years....

  • arubajan05
    arubajan05 Member Posts: 140
    edited December 2010

    Hey, I am having a daVinci hysterectomy on Monday.  (uterus and ovaries) I am on Tamoxifen now (since July) and I am having a great deal of bone pain. My onc mentioned she may change my meds a few months after the surgery... do you think this will be to Arimidex?  What are the SE's? 

  • miki
    miki Member Posts: 22
    edited December 2010

    Thank you all for your response!!! I'm relieved to know that recovery time is not so long... and "no regrets".

    I can just take a week off from work and work half the following week or something. That...I can afford to do.

    I guess I won't be able to do much of vigorous exercise for a while?   Yikes.  Hope I won't gain back the weight I lost...

    When I talked to my onc, he said hysterectomy is not necessary at this point. Is that true? Isn't it better to take all out and get it over with? 

    As for SEs of AI; I will have to deal with it, won't I? What's the alternative... I survived 5 years of Tamoxifen so I can do this!!!   

    Hot flashes, join pain...I already have them

    Mood swing...I will tell my DH, "watch out!!" ha ha

    And Barb had said something about AI ruining her sex life... Sex life? What's that? lol   Mine is almost non-existent as it is, can't get any worse... Well it's a story for another thread!  I will be reading "I want my mojo back" thread!!

    Anyway, on a serious note.... I truly were leaning toward stopping further treatment. Sometimes, moving forward, beyond, does that to you. Gives you a false sense of security... If you don't face it, If you ignore it long enough, it will go away...And boom, one day you get a wakeup call.

    The news about Elizabeth Edwards passing really shook me up. It was the wakeup call for me.

    RIP Mrs.Edwards......

  • KerryMac
    KerryMac Member Posts: 3,529
    edited December 2010

    The recovery is really easy. I was up and about the next day, if you have a sedentary job you might not even need a full week off. And, as it is done laproscopically, you can exercise fairly soon afterwards. It is not like having a Hysterectomy.

    I really don't think you will have too many problems. I have been on Arimidex for over a year and it is fine. And, too much info, but we still have pretty regular sex. I bet it won't be as bad as you think.

  • miki
    miki Member Posts: 22
    edited December 2010

    Thanks, Kerry!!  Very encouraging. I'm just starting to get comfortable with my new life style where I workout 5-6 days a week. I was afraid if I get sidelined for a long period, I'll go back to my old way...lol.

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2010

    I had my ooph in October.  It was my last step in my active tx so I was very happy to have it over with!  The worst part of it was that we ended up waiting in hospital from 9:00 am till I finally got called in at 5:00 pm!  The surgeon's office ended up sending me a thank you card with an apology for the wait.  That was so nice!

    The reason I had the ooph was because of my BRCA+.  We briefly discussed the uterus but since I never had any problems we left it alone.  It adds structure and there can be problems if it's removed.

    I have a desk job but I did take the week after off.  I was pretty worn out after going through a year of treatment.  Since you've been working out and a long ways from treatment I think you'll be pleasantly surprised at how quickly you'll be feeling good again.  I was told not to lift anything heavier than 10 pounds for a month but by the second week I was just being careful how I lifted things like my cat (12 pounds) and the following week my grandson (30 pounds!).

    And you're getting the optimum treatment.  Five years of tamoxifen with 5 more of AIs is great.

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited December 2010

    Barb..... I think you made the right decision.  The important thing is to take something, and relatively less important which one works for you.  So going from feeling hit by a truck to normal is a major thing.  You will probably exercise a lot more, which is a major benefit by itself.

    Miki.... Thanks for the reminder about adhering to treatment.  Really important.  Unlike Barb, I have had minimal SEs with Arimidex, including my mojo being just fine.  My skin is a bit finer, but that could be from Taxol as the major change was then.  Anyway, the plan is 5 years, but that could change based on what they discover.  The jury is still out.

    Sherri....  I had also picked up on the fact that Elizabeth Edwards discontinued AIs.  There are some other things that she could have done differently.  I don't think she exercised that much.  I am saying this based on her upper body which was not toned.  I still wonder if bisphosphonates would have helped?  The jury is still out on that one too.  Also wonder if she had the most aggressive chemo?  She was very coy on that topic.

    But a major lesson to the rest of us that completing the therapy is the best thing we can do for ourselves.

    Note: I had already noticed this in the survival statistics of those participating in clinical trials vs everyone else.  Something like a 5% difference at the ten year mark for "high risk" patients.  This is major, and I ascribed it to the fact that all patients counted in the clinical trial statistics had completed the assigned protocol.

  • jenn3
    jenn3 Member Posts: 3,316
    edited December 2010

    Chemo sent me into full blown menopause and I am still experiencing hotflashes (the upside in the winter is I am not cold).  Initially I was told I should have an ooph, but then it seemed to fall through the cracks, the last time I asked I was told it wasn't necessary since I was in menopause.  My skin is much drier now, due to menopause and I have to work harder at keeping the "middle" off, but it's part of the whole battle and a small SE that I can live with.

    I am still somewhat worried and will probably ask about the ooph again, but I guess that paranoid feeling is something that comes with the territory.

  • Tg5471530
    Tg5471530 Member Posts: 111
    edited December 2010

    Jenn3-  I am in the same boat as you.  I finished chemo sept. 5 had Bilat. Mast Oct.5 started Tamoxifen 3 wks later.  Taken off of it 3 wks later because of horrible side effects.  Dr. discussed having an ooph after Rads.  Well last wk he check my hormone levels and discovered that all of them showed that I was Post Menopausal from the chemo at the age of 36.  I know I will have to go on the other type of hormonal therapy but not sure what to do with the ooph.  I hate these hot flashes, skin changes, and emotions (but the holidays and separation dont help either).  I have till my Rads are done the end of Jan. to decide.  Keep me up to to date on your decision.

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