Jumping the Gun Ooph?

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MiniMacsMom
MiniMacsMom Member Posts: 595

Ok, so I am one of those who likes to know everything upfront.  I know what my hospital here recomends, but I still have to wait on Houston.  So lay the details on me.  I am 27, stage 3a aggressive HIGHLY estrogen Positive breast cancer.  My Drs said if I was BRCA positive they would be all for a ooph at 35.  What about those of you who are not BRCA + why did you decide to get an ooph.  Was it worth it?  What did your doctors say or did you have to push for it.  I know there are different factions on having more babies, but I won't.  I have one beautiful happy healthy son, and I won't do anything that could limit my time with him even by a little bit.  I want to be there to see every part of his life :)  So again, whats the pros and cons on ooph.  I searched a little, but I got bogged down with all the different forum posts. 

Comments

  • KerryMac
    KerryMac Member Posts: 3,529
    edited November 2011

    I had one. and I'm BRAC negative. I am older than you and we were already done having kids (my husband had already had a vasectomy) I have read there can be health issues down the road if you have one early. But I did weigh everything up and decided on one, and have not regretted it for one second.

    My Onc initially was going to put me on shots to shut down my Ovaries and put me on Tamox. I am highly ER+ too (100%) and my gut told me that stopping the estrogen was probably more important for me than chemo. So I brought up the possibility of having an ooph, and she agreed without hesitation.

    I had mine right after finishing Rads and it was pretty easy recovery. I strangely had a bit of unexpected feelings of loss, it was funny, I wasn't expecting it, and I never had it after my Mx, but I did feel a bit sad about the loss of fertility. etc.

    There are studies that say early menopause can cause heart issues, and also bone loss - I do have osteopenia, whether that can be attributed to my ooph or to Arimidex, I don't know. 

    But all in all I have no regrets at all. There has also been a recent study that compared Femara to Tamox, and the survival benefit was substantial - 20% or something. So, I do feel by going on an AL I have  given myself the best possible chance.

  • pejkug3
    pejkug3 Member Posts: 902
    edited November 2011

    I've been wondering the same thing...

  • jennyboog
    jennyboog Member Posts: 1,322
    edited November 2011

    I had one in June...did it at 35.  I was done with babies too (DH had vasectomy), I have no regrets so far and have had no issues.  I am BRCA+ but I also did it for the ER+ factor so it was a "knock two birds with one stone" for me.  I was on Lupron injections & they were being shut down anyway so what was the purpose of having them.  Since you're ER+ they will most likely put you on some type of injection, until you decide whether to have one or not.  I was asked before chemo did I want to freeze my eggs for the future, they might be able to do the same thing for you since you are so young.  The surgery wasn't bad either, I was a little sore for a few days but other than that I had no issues.  I understand the future health problems but I got to get there for them to be a problem....I'll worry about the now right now and the future in the future.  Hopefully MDA will have some answers, I can't wait to hear what they tell you.

    I had the same thing about fertility Kerry Mac...didn't bother me until now, my SIL is expecting and being around the baby stuff is tough.

    IBC & BRCA1+ Let me not pray to be sheltered from dangers, but to be fearless in facing them. Let me not beg for the stilling of my pain, but for the heart to conquer it. HE>i
    Diagnosis: 7/28/2010, IDC, 5cm, Stage IIIc, Grade 2, 5/16 nodes, ER+/PR+, HER2-

  • karen1956
    karen1956 Member Posts: 6,503
    edited November 2011

    My onc actually recommended an ooph for me....but I was already perimenopausal and 50, so well past child bearing age.....I had my ooph 5 years ago and have never once regretted the decision.....sure it slammed me into menopause faster than my body was going, but for me its one less worry.....I endured AI's for 3 1/2 years......been off of them for 1 1 /2 years...and hot flashes have returned....but I figure at 55, they would be a part of my life anyways.....btw...chemo had stopped my periods and onc didn't think they would come back at my age, but he still gave me a shot of lupron so I could start the AI's soon after chemo....then had my ooph following rads....it was a whirl wind 7 or 8 months!!!!

    Even though AI's are thought to be "superior" to tamox....tamox is still a very good med.....if you have time, take it to sort it all out.....you can do lupron and take AI's...or you can start of tamox then look at lupron or oooph for AI's.....then decide later if you want to do the ooph.....For me being 50, it was a much easier decision.....

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited November 2011

    We started the egg freezing process, but I know too much about science and femara (what they put you on to block the FSH hormones from your cancer doesn't work right in pre-mena women we decided it wasn't worth the risk.  I was set on one kid, my hubby was still vollying for 2, but has since decided that this must be a message for us.  I was playing with my GF 9 month old and didn't have any twinges.  I had more issues passing Dereks clothes on and thinking about all those memories.  Also I loved being pregger, but thats not something I will ever feel is "really" safe for me.  I just don't trust the scientific literature I have read.  It would be worth the risk if we didn't have any, but one is a blessing.  Some women pay many 1000s for rounds and rounds of IVF and they don't have cancer issues just to have one, so I figure I'm done.  I just worry about the estrogen and tamox side effects.  I also have PCOS which also has its own cancer risk :( I guess MDA will help ;)  Thanks for the fast responses, my brain doesn't really shut down without answers :)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    Well, I was past childbearing age when I had my oophorectomy. I had it in 2008 when I was 55. Six months later I was dx with HER2+ breast cancer on the right. I had the oophor because the doc found a large cyst, which turned out to be benign. After surgery I went through immediate hot flashes, fatigue and emotional ups and downs. I'm not sure how much of the oophor symptoms were related to the subsequent surgery and double mastectomies, all emotionally and physically draining. I do not regret having the oophor, but then I had a hyster over 10 yrs ago so have gotten used to not being able to have kids anymore. I have a beautiful daughter and am thankful for her. Because my bc is also a little estrogen positive I cannot take anything for hot flashes - prescription or over the counter. Just grin :) and bear it and the hot flashes, if you get them at all, will lessen over time. Sorry you have to go thru this. You can get thru it though.  I am 3 years past bc now and my energy is great, thanks to lots of supplements. I do recommend that you build yourself up before surgery by taking vitamins and supplements. I had a huge incision from belly button on down but likely you would have a laparoscopy.  The important thing is to reduce estrogen and saying bye to the ovaries will definitely help!

    Take care,

    tuckertwo

  • jennyboog
    jennyboog Member Posts: 1,322
    edited November 2011

    @ MMM....I might need to be more specific with my previous answer.  I do have hot flashes, we're put into menopause overnight...it's going to have SE.  But I don't regret my decision and like KerriMac said, I feel I've done all I can to prevent a reoccurence and that's more important to me than the SE's or future SE's.  Best of luck with your decision and please let us know how it goes at MDA.

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited November 2011

    This is an area of intense controversy in the onc community, and there are currently some long term clinical trials to see if ovarian suppression (ooph, or shots like Lupron) helps in younger women.

    There has been no information formally released, although acquaintances (i.e., people in my support group who are on this trial) say that their docs say they are seeing no added benefit, although the trial hasn't been running long enough to have good answers.

    It's a really tough spot to be in - there is no definitive research, and there are serious consequences to premature ovarian suppression - heart and bone issues, mostly. That doesn't seem very important now, but, dying in your 50s of heart disease is a pretty scary thought too.

    Early results from AI trials - AIs shut down the last trickle of estrogen in postmenopausal women - are starting to show that it decreases the likelihood of recurrence, but doesn't increase the survival - in other words, they are dying of something else. Again, this is very preliminary, so we don't know exactly what it means.

    You might want to consider injectable ovarian suppression, if your test results indicate that your ovaries are returning to normal after chemo. Hopefully, in a few years, there will be more definitive information.

    Good luck to you. This is a tough place to be.

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited November 2011

    ICan:  Thank you so much for that perspective!!!  I really appreciate, its hard to sort through all the differing and long winded articles an a subject, but that definately approaches it from a new angle.  Again, Thank you!

  • faithfulheart
    faithfulheart Member Posts: 544
    edited November 2011

    Hi all,  it's been  a while,  I would like to chime in here too.... I had my ooph at 41 in between chemo and rads,  I have no regrets..... 2 small kids to  raise!!  I was 98% er pos, my onc. was the one who suggested it to me, we went back and forth for a while being that there is not alot of data. However, my onc. is of the team that believes if you are that highly er pos. it's your enemey in this battle against reacurance!!!!  My bs agreed with him 100%. Here's how I feel,  it is a hard decsion, at any age,  but,  really hard when your young.  I know there are risks involved, I try not to think about or project them,  my gyn. who also has been telling onc. for 15 years Er pos women should have there ovaries out, he feels it's a no brainer, despite the side effects. He said to me, when explaning the risks involved, one being bone issues, down the line, maybe 10 years from now .

    I looked at my doc and said,  I would love to be here in ten years to deal with any issues related to the surgury that very well could have been the ticket to saving my life!!!!  My point is that yes there are risks involved in all we do along this journey, but I think lack of est is a very important defense for us, more so then chemo, I will deal with the side effects if and when they come. I am doing great, no hot flashes, I have lost weight, I am a little moody, but who knows, I have always been a little moody!!!! Do what you feel in your heart, I say we are going to find it to be a really great thing in the long run........... You will be in my prayers, it's not an easy road, but It's our road!!!!!

    God bless you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  • mcsushi
    mcsushi Member Posts: 174
    edited November 2011

    Hey MiniMacsMom: I'm close to your age (32 now, 30 at diagnosis) and I also had stage 3A, highly ER and PR + (100% and 90%) and I did not have an ooph. If I had been BRCA+, my doctors were going to push a little harder, but since I was negative for any genetic mutations, they put it on the back burner. At such a young age, an ooph and such dramatic estrogen withdraw can lead to serious problems with bones (in addition to bone loss from an AI), the heart and cognitive functions. I had an absolutely miserable time with hot flashes and night sweats during chemo, I couldn't and didn't want to imagine what an ooph would do. I'm on tamoxifen now and doing well. We are going to revisit having an ooph in a few more years, at which time, I probably will go ahead with it so that I can move to an AI after my 5 years of Tamoxifen. That was the decision I made and I stand by it 100% (as do my surgeon and 2 out of the 3 oncos I met with). Whatever decision you make, best of luck to you. 

    ~McSushi 

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