ovarian ablation or drugs?

smvargo
smvargo Member Posts: 39
edited March 2014 in Breast Cancer #1
Hi all, I am once again in need of some wisdom and experience. When I first joined this discussion I wrote that my bloodwork showed that I was post-menopausal. Well low and behold I had a regular old period about one week ago. I was taking arimidex with no side effects or problems. I was initially precribed tamoxifen and had a strange reaction after taking only 10 mg., racing thoughts, problems with movement, trouble breathing and was instructed to take benedryl (sp?)and finally got relief. I was told by my MDs that no one had ever heard of this happening.
Now I am faced with being pre-menopausal. I am so sick of drug side effects that I am considering an ovarian ablation. My Dr. prefers to stop my periods chemically. I was told by my radiologist and PCP that I shouldn't do anything that radical and should try tamoxifen again. Has anyone had an ovarian ablation? Would you recommend I take this route and continue with Arimidex? I will be seeing my Onc. next Friday to look at the pros and cons. He mentioned Lupron as an option. My radiologist told me that if I had an ovarian ablation I would lose my sex drive. What's the real scoop? Thanks. Stephanie (smvargo)

Comments

  • smvargo
    smvargo Member Posts: 39
    PS-I wanted to add one more question. I know I should be happy I'm alive but I'm terrified of weight gain (was a fat kid and teen who was brutally teased!!!). Gained about 10 lbs through chemo. and radiation. With ovarian ablation is weight gain part of the deal too? Stephanie
  • llange
    llange Member Posts: 54
    I've also talked to my onc. about ovarian oblation using Lupron or Zoladex, as I am also pre-menopausal. He is against doing it, since it isn't proven to help survival rates, and is a very invasive treatment. There are very serious consequences with bone loss, heart problems and other side effects of going into menopause early. He feels the Tamoxifen is protecting me from recurrence without being as invasive. I'm seeing him again next week and I'm going to ask him about it again, because it seems more and more younger women are getting Lupron to put them into menopause. Let us know what you decide.
    Lisa
  • jamjar62
    jamjar62 Member Posts: 135
    Hi Stephanie, I haven't started my tamoxifen yet since my onc wanted me to wait til I was done with radiation which will be the end of this month. However, I also mentioned ovarian ablation to my onc and he was very resistant to the idea. He thought it was too radical....as if infusing poison into your system for 6 months isn't?? Anyway, I don't have anything much to add except to say that I think most doctors use ovarian ablation only as a last resort. My friend had ovarian ablation only after she had a reoccurence on Tamoxifen.

    As far as ovarian ablation making you lose your sex drive....what's a sex drive??? Ha ha ha ha

    Karen
  • marytres
    marytres Member Posts: 144
    Dear Stephanie, I took tamoxifen for 2 years and then found out about Arimidex and asked my doctor about it. My oncologist did switch me over and I now have less side effects. I had my periods stopped and was put into menopause during this time and I had to have a shot of emantone(?) every 3 months to stop them. Last September the oncologist told me he was going to stop giving me the shots. My periods came back 2 months ago and I did call the oncologist and he said since I'm still young, it could happen in 20% of women to get their periods back. I told him I didn't want them back. Sex drive? have to agree with the other lady who responded to you. What's a sex drive? Anyway, he told me to see an gyn. and I had some tests done and all he gave me was some pain killers for my ovaries that hurt now when I get my period. I told the oncologist I'm not too keen about this and will wait until after the summer to either stop them chemically or have them removed. He said since I 'm on Arimidex I should feel safe but I don't. Arimidex stops the estrogens from developing which cause other cancer cells. So, in Sept. or Oct. I'm going to have that done. Need to talk more or hear what I finally do (would like to hear what you decide too) here's my address:[email protected] so please write. take care, hugs, Marie
  • smvargo
    smvargo Member Posts: 39
    It appears there are several of us in the same boat. What I don't understand is the fact that with drugs or an ovarian ablation, you're still thrown into menopause and will have menopausal symptoms. That also means, that either way, bone density loss and increased risk of heart disease are risks for all methods of stopping estrogen production (except tamoxifen and other drugs that bind to estrogen receptors). I don't know if any of you have experienced MD's being cavalier about side effects? My understanding is that arimidex is not effective if your ovaries are still producing estrogen. I will let you all know what I decide. After watching my younger sister, who passed away last summer, endure horrible side effects from chemo. and other drugs and procedures for 3 years, I do not want to stay alive at any cost. My sister had 3 children and I can understand her decisions. She probably gained an extra year of survival on (sp?) taxotere and carbaplatin (I should have a PDR next to my computer for drug spellings) She also had an ovarian ablation because her estrogen levels were still sky high on Tamoxifen.
    Thank you for your responses. I know about the Tamoxifen studies and the Arimidex studies. Anyone know about ablation and Arimidex survival rates? Any hard science on why ablation is "a last resort?" My thoughts are with all of you. stephanie
  • marytres
    marytres Member Posts: 144
    smvargo said:

    It appears there are several of us in the same boat. What I don't understand is the fact that with drugs or an ovarian ablation, you're still thrown into menopause and will have menopausal symptoms. That also means, that either way, bone density loss and increased risk of heart disease are risks for all methods of stopping estrogen production (except tamoxifen and other drugs that bind to estrogen receptors). I don't know if any of you have experienced MD's being cavalier about side effects? My understanding is that arimidex is not effective if your ovaries are still producing estrogen. I will let you all know what I decide. After watching my younger sister, who passed away last summer, endure horrible side effects from chemo. and other drugs and procedures for 3 years, I do not want to stay alive at any cost. My sister had 3 children and I can understand her decisions. She probably gained an extra year of survival on (sp?) taxotere and carbaplatin (I should have a PDR next to my computer for drug spellings) She also had an ovarian ablation because her estrogen levels were still sky high on Tamoxifen.
    Thank you for your responses. I know about the Tamoxifen studies and the Arimidex studies. Anyone know about ablation and Arimidex survival rates? Any hard science on why ablation is "a last resort?" My thoughts are with all of you. stephanie

    Stephanie, the oncologist told me the opposite. That Arimidex works on the estrogen. Arimidex is suppose to stop the estrogens from reproducing. He says it works fine on me and I shouldn't worry because I take it. There are less side effects with Arimidex but everyone is different. And yes, you go into menopause either way. Hope you do write to me.
    Sorry to hear about your sister. How old was she? I think we all think of our kids first even though it's a nightmare with the chemo and all. My friend passed away in 2001, two days after the Twin Towers thing. She was fighting for 5 years and lost. She left 2 kids, a small girl and a boy my daugter's age. That year at Christmas time, her husband already had someone else and still does. So it's hard for us and our children. I guess most men overcome it quickly more so than if it was the other way around. Take care and hugs, Marie
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    marytres said:

    Stephanie, the oncologist told me the opposite. That Arimidex works on the estrogen. Arimidex is suppose to stop the estrogens from reproducing. He says it works fine on me and I shouldn't worry because I take it. There are less side effects with Arimidex but everyone is different. And yes, you go into menopause either way. Hope you do write to me.
    Sorry to hear about your sister. How old was she? I think we all think of our kids first even though it's a nightmare with the chemo and all. My friend passed away in 2001, two days after the Twin Towers thing. She was fighting for 5 years and lost. She left 2 kids, a small girl and a boy my daugter's age. That year at Christmas time, her husband already had someone else and still does. So it's hard for us and our children. I guess most men overcome it quickly more so than if it was the other way around. Take care and hugs, Marie

    I'm 41 and I elected to have a hysterectomy at the age of 40.
    Long story short....diagnosed 6/00 at age 38, tamoxifen quit working 8/01. Found bone mets to arm, radiated, switched to aromasin. MD recommended Zoladex, also had met to low back at this time. Package insert warned against 'tumor flare up'. Didn't like the sound of that sooooo I refused Zoladex. Went to Gyn doc, asked for hysterectomy, since tumor was ER+ and grows in response to estrogen. He said sure. That was 10/01 praise God.
    What's up with these Oncs? I mean duh-huh! ER+ tumors grow in response to estrogen, ovaries produce estrogen, so take them out. Don't they get that? My radiation onc said, 'You sure are electing to do an invasive procedure.' I asked him if he had ever seen Zoladex? It's a needle the size of an icepick and has a pellet that is injected under the skin of your stomach...EVERY MONTH! Talk about invasive!
    Personally, I would look for a gyn doc to do a hysterectomy. The onc docs are so contradictory. You need estrogen to prevent bone loss, but we are going to give you meds that stops either the production of estrogen or stops the receptor sites from picking up the estrogen produced. Well why don't we stop the source of the production AND take the meds to cover any alternate estrogen production? (Muscles produce a small amount of estrogen).
    Anyway, that's my 2 cents. LOL If ER+ I say take out the ovaries and uterus and take aromasin/arimidex... Especially if you don't plan on having more children. God bless and good luck on making a decision. hummingbyrd
  • smvargo
    smvargo Member Posts: 39
    marytres said:

    Stephanie, the oncologist told me the opposite. That Arimidex works on the estrogen. Arimidex is suppose to stop the estrogens from reproducing. He says it works fine on me and I shouldn't worry because I take it. There are less side effects with Arimidex but everyone is different. And yes, you go into menopause either way. Hope you do write to me.
    Sorry to hear about your sister. How old was she? I think we all think of our kids first even though it's a nightmare with the chemo and all. My friend passed away in 2001, two days after the Twin Towers thing. She was fighting for 5 years and lost. She left 2 kids, a small girl and a boy my daugter's age. That year at Christmas time, her husband already had someone else and still does. So it's hard for us and our children. I guess most men overcome it quickly more so than if it was the other way around. Take care and hugs, Marie

    Marie,

    Tried to email you at the address you provided and my email was returned. Is there supposed to be a .com or .net at the end of "inwind"? My email is [email protected]
    I would love to correspond. Stephanie
  • jfsnowflake
    jfsnowflake Member Posts: 15
    Hi! I guess I've done it all! : )
    1995, age 33,mastectomy, chemo and tamoxifen.Periods came back. 2000, chest wall recurrence. Chemo, Rad, Arimidex and Zoladex. As I remained premen., Zoladex was to take care of the ovarian function and Arimidex the estrogen from other sources in body. After 3 years of Zoladex shots, this past week I had my ovaries removed (smooth laproscopic procedure) and had them take the other breast too. No more Zoladex, but staying on Arimidex as other sources still produce some estrogen. I suppose there have been menopausal symptoms, but I had some of the same feelings with Tamoxifen. I have also had bone density tests, and my have been great...of course I love exercise and milk, so those are two good things! So many decisions to be made....!!
    Hope all goes well for you!!
    Jane
  • SCmom
    SCmom Member Posts: 46
    I just wanted to say that I am learning so much from reading all of the e-mails. I had a partial hysterectomy when I was 30 (left those darn ovaries. I'm 43 now. They expected me to be in menapause by now, but am not. Guess from what I here from you, now I will be. Great!!!! I want to continue reading so when I see Oncologist soon, I'll be educated enough to discuss this. Just wanted to say thanks to all of you. laura
  • smvargo
    smvargo Member Posts: 39

    Hi! I guess I've done it all! : )
    1995, age 33,mastectomy, chemo and tamoxifen.Periods came back. 2000, chest wall recurrence. Chemo, Rad, Arimidex and Zoladex. As I remained premen., Zoladex was to take care of the ovarian function and Arimidex the estrogen from other sources in body. After 3 years of Zoladex shots, this past week I had my ovaries removed (smooth laproscopic procedure) and had them take the other breast too. No more Zoladex, but staying on Arimidex as other sources still produce some estrogen. I suppose there have been menopausal symptoms, but I had some of the same feelings with Tamoxifen. I have also had bone density tests, and my have been great...of course I love exercise and milk, so those are two good things! So many decisions to be made....!!
    Hope all goes well for you!!
    Jane

    Jane,
    Thank you so much for sharing your experience. So I gather that you did not wake up after the lap. with horrible hot flashes and your life changed forever. (That is what my brother-in-law told me happened to my sister after she had an ablation---tamoxifen not effective) What was your experience like on Zoladex? I've already had menopausal symptoms twice--pre-chemo, during chemo, and when I went on arimidex. Definitely something I can handle better than drug side effects. You sound happy with your decision. Please let me know how you are doing. My email is [email protected]