Women on Ovarian Suppression + Hormonal Therapy Unite!
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Mocame, that is completely unacceptable! That makes me so mad. We've gone through enough. The least our healthcare providers can do is make our treatments as easy and painless as possible. I would bring it up to your oncologist or the manager of the practice you're going to.
It is very easy to numb you beforehand. It is literally a spray that feels really cold. They spray for about 5-10 seconds and it totally numbs the area (I get the injection in my stomach). I'm not sure exactly what product they use, but it's similar to this:
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I was not checking in to this thread much this month, since I had an insane amount of physical therapy appointments for my lymphedema, plus was bandaging. One-armed typing is not so easy! Anyways, was going over previous posts and saw a couple of questions that were never answered.
Garnersuz77: You asked about the Oncotype DX and the Breast Cancer Index (BCI) test. It's my understanding that they only use the BCI at minimum after you've been on hormonal treatment for at least 4 years. Its purpose is to assess your risk of late recurrence (between 5-10 years) and whether you'll benefit from 10 years of hormonal therapy, as opposed to the standard 5. I asked my MO about doing it now, but she said she wants to wait because there may be even better tests out there by the time I need that question answered. Oncotype is asking a different question: what is your general risk of recurrence and will you benefit from chemotherapy?
A relatively recent JAMA study did a comparison of several different tests, including Oncotype and BCI (https://jamanetwork.com/journals/jamaoncology/fullarticle/2672388). They found that BCI, among others, provided more prognostic information about distant recurrence 5-10 years after diagnosis for node negative women with hormone-positive, HER2-negative disease. But for women with 1-3 positive lymph nodes, the prognostic information was limited. I think once you have a few positive lymph nodes (as I did), things are more unpredictable.
Walden1: This is the first I'm hearing of buserelin. That wasn't an option offered by any of the MOs I consulted with. I'm curious what you've heard about it and how it's different from Zoladex, etc.
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Do Lupron shots hurt? I had the first one, no pain at all. Second was so painful for 3 days where the injection was. Is it normal?
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Mocame
I totally agree with melee, I had my first Zoladex injection today. When I got back to the infusion area, the nurse handed me a bag of ice and advised me that she'd like me to hold it on the injection site for 10-15 minutes before they give me the injection. The Zoladex needle is HUGE, but I didn't feel anything. She said holding the ice on the area for a time ahead of the injection numbs the skin and just below the skin.
I'd insist that they at least give you a baggie of ice to hold on the area ahead of time. It doesn't cost a dime, and it makes the experience a lot easier. You have to wait for them to get it prepared anyway....
Tracy
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Wow. Nobody has ever offered me ice or numbing. Never occurred to me to ask. The monthly lupron I get doesn't bother me though. The injection hurts but it's quick and then it's fine. The three month one was a different formulation and was the kind given in the belly and that one HURT. For a week or so the waistband of my pants was uncomfortable and I had a hard lump there for months after it was supposed to have worn off. I might be asking for ice if I'd stayed on that one.
Lily, I'm guessing it might have to do with location of the shot. I find that some spots are more sensitive than others.
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Does everyone get their Zoladex injection in the stomach? I was told that is where they give it. It would be so much better if it was a shot and not the injection, which takes longer. I'm going to meet with my gynecologist in a couple days to discuss the possibility of an Ooph instead of getting the injections every month. We will see.
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I get mine in the stomach, and it’s an injection that inserts a pellet that dissolves over a month
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Yep, I get Zoladex in the stomach without any numbing. It's a big needle and all but I barely feel it. I usually don't even need a bandaid unless the nurse hits a vein.
I thought about gettin an ooph, but my OB/GYN said that women who keep their ovaries tend to live longer than women who have them out. Plus, I've been getting my shot for 4.5 years now. Only 5.5 more years to go! JK; we'll probably test my estrogen levels again in a few years to see whether I'm menopausal.
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Hey all
I have been having my zoladex injection since June its not bothered me at alll used to watch it going in stomach yes maybe I'm odd but ha but last month it hit me how big needle was and some reason maybe I subconscious tensed up but hurt like helll and hope now this month has come around on Wednesday doesn't hurt me as much xxx
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I'm wondering if it was more about the nurse who did it than the actual injection? My injection bled almost through a bandaid and I turned black and blue (it's now yellow). I might have been a little tense but I was expecting it to be less painful that it was so I don't think I was too tense and worked up about it. I'm 50 so I know I don't have too many years left before menopause would hit. That is why I'm considering the ooph. If I was younger, I probably wouldn't consider it yet.
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Well had my zoladex today barely felt it and its same nurse who does it as I go to my doctors surgery and nurse does there my next one is new years eve. I may been tense we were discussing my mums csncee who knows or fact I realised how big needle was ha
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I don't know what the injection feels like without numbing, but with the numbing spray it is 100% painless, which is just the way I like it! I have bruised really badly 3 out of 9 times. And last time I was literally gushing blood from my stomach (the nurse must have hit a superficial vein). But never any pain.
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Thank you. I assume your shot was on the stomach area. I am getting mine on my buttocks. Thank you for getting back to me. I will ask for numbing spay next time.
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I was diagnosed with IDC in September and had a DMX on 10/7. I was supposed to start Zoladex shots this month, but have so far chickened out. I have two other health conditions that cause me a lot of difficulty on a daily basis (POTS and migraine), and after a lot of research, I think the chances are too great that the Zoladex would cause one or both of those conditions to worsen. The thought of it worsening my tachycardia is particularly worrisome to me. So now I have a surgical consult for an oophorectomy on Monday. This might be the best way to go for me, because I am still menstruating every month like clockwork, but I turn 54 next week. That's younger than I'd like to be when I enter menopause, but not unthinkably young.
Does anyone here have tachycardia or palpitations, or any other heart or neurological symptoms with the Zoladex?0 -
Hi Angela, I am not sure what stage you are but I would give Zoladex a try. I don't have most of side effects the meds I am taking have on their list. You never know, you may not have any side effects at all. Your headache may go away once your periods stop.
I am also meeting a doctor for oophrectomy option as well even though will be too many surgeries in a very short time and I am not sure how much my body can handle all this stressful situations.
Good luck and let us know.
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Millee- I don’t know that much about buserelin, except that it is one of the injections that is used in Canada for OS. Zoladex is more common, but when that isn’t an option buserelin is an equivalent alternative. In my case, I had a period on Zoladex and the MO said perhaps I wasn’t metabolizing Zoladex well. It didn’t seem that she was certain about that and simply said it was rare that I wasn’t fully suppressed on zoladex. Studies I read suggest about 30% are not fully suppressed, but they are usually obese or have not had chemo. I am in the recommended BMI range and did chemo so i guess that makes me a unicorn. It may take 3 months to know if buserelin is working, but got my period today so perhaps I am out of options. To early to tell. This OS plus TAm feels alright so far. Wish I had an Oncotype to tell me if I should do an oophorectomy
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Hi! Last year around this time I was diagnosed and tomorrow I go for my one year mammogram and I'm not sure what to expect? Been pretty nervous the past month or so for obvious reasons, this is a stressful time. I don't feel anything in my breast but I'm still very anxious. My husband is traveling so one of my girlfriends is coming with me so I'm wont be alone. I get the mammo first then I see my doc after. Will I get my results that day? Please share experiences, Thanks
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So about a month ago I started getting trigger finger in my right thumb. I have been using a splint at night, since that's when it's the worst, but it's starting to get bad during the day. Anyone else have problems with this? I'm waiting for my doctor to call me back about what, if anything, we can do about it.
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I had trigger finger a while back. My doctor said to do stretches to keep my range of motion. I think he said they could do a steroid shot or surgery if it didn't get better but luckily it did. You may want talk with an othopedic dr. Hope your thumb gets better soon.
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Alden, here is a link to a thread about trigger thumbs that might help you. The thread title specifically says Aromasin, but as I learned, any aromatase inhibitor can cause this.
https://community.breastcancer.org/forum/78/topics/872097?page=1
I have been dealing with this problem for about six months, and it has still not totally resolved for me. I didn't take this problem too seriously at first, but it has actually had a HUGE negative impact on my life and ability to do normal things. Definitely don't ignore it. I highly recommend seeing a hand specialist doctor. I hope you get some relief soon.
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Hi Ladies! Question about Ovarian Suppression for you. I am in the weird gray area....no periods, but I have had hormonal values indicating that I am still not in menopause. For that reason I have not switched to an AI - still on tamoxifen. I was in the gyn office late last year & he gave me a printout of something from the Journal of Clinical Oncology about the SOFT and ASTRRA trials, which basically are ovarian suppresion with tamoxifen. I am going to talk to my MO about this, but wondered how many are doing this here? Most people I know doing Ovarian Suppression are on an AI so I wasn't sure. Thanks!
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Sammy- I am on OS + Tamoxifen. It was recommended for me due to the risk of incomplete suppression. I’m doing ok with this combo. I was having Lupron shots and switched to Zoladex because I wasn’t tolerating the Lupron well.
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Sammy,I have been on Lupron shots for 3 months to push me to artificial menopause and Letrozole for over a month. Today I canceled all future Lupron shots since I was having weird side effects and I decided to have ovaries removed instead. I am trying to remove the number of medications that come with various side effects and replace them with surgeries. Not easy, but we are back on the old days since billions of dollars on cancer research have provided few medications that work 50% of the times and create many dangerous side effects. Please ask your oncologist what other paths can you take to reduce the amount of medications you are taking. Best of luck!
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Ladies, I'd like to hear what your thoughts are re: staying on Lupron or Zoladex vs. oophorectomy. It appears to me that the MO supports ovarian suppression, but GYN supports oophorectomy. What makes you decide to choose one over the other? One reason is inability to tolerate the side effects of Lupron/Zoladex, as indicated by LillyWasHere. I am sort of on the fence, since I am 48, but have a value of Estradiol by TMS around 8.
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Thank you SavingGrace. I would like to know other Ladies opinion as well. Lupron shuts down the pituitary gland, thereby reducing the amount of estrogen. Oophorectomy will remove the ovaries that produce most of the estrogen. I am nervous of the idea that there is an injection that tells my brain what to do. And this is not a fiction movie
. I am close to menopause and I am not planning to have other kids so the operation may work better than drugs. However, I would like to hear other Ladies experiences on this.0 -
SavingGrace and LillyWasHere - I am on Zoladex and have been contemplating this same issue. I am 50 but my mom didn't hit menopause until she was 53 and then it was chemopause. Until then she was still getting normal periods so she could've went more years before hitting menopause naturally. My MO didn't care if I had the surgery or have the Zoladex injections. When I pushed her on the issue, she suggested the surgery. I had one appointment with my gyno and she said it was up to me. I'm getting a 2nd opinion because they don't seem to have much experience with breast cancer drugs and the surgery. She never heard of Zoladex. I have my 2nd opinion in February with a gyno oncologist who has a lot of experience and comes highly recommended. We will see.
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Hi Ladies,
This thread has been super helpful as a reader, so now I'm going to jump in. My oncologist is fairly checked out so I'll be switching soon, but for my med history - I had a left mastectomy, oncoDX score low enough to skip chemo and I did the full rad treatment. My aloof oncologist prescribed Tamoxifen and said 'see you in Feb'. Prior to being diagnosed with breast cancer, I was dealing with some fairly large fibroids and heavy bleeding. I'm going to circle back w/ the OBGYN who did a little uterine cleanup during a scan (back in August) to discuss some fibroid removal. From what I am reading, Tamoxifen is quite possibly the WORST thing I can take because it could make my fibroids even bigger & lining thicker (I swear I'll bleed to death!)
My oncologist doesn't seem to care about my past med history or have a convo w/ my OBGYN.
SO, When I switch oncologist, I want to have all my info lined up - I am pre-menopausal - did your Oncologist do tests on you? To measure estrogen levels? Bone density? ( I see lupron can affect bone) or any other blood work?
Why did you choose the Lupron & Zoladex route vs Tamoxifen?
If any of you have fibroids as well, what long term management did you discuss w/ your onco?
I would really like to take out the offending fibroids and keep my uterus, as I am worried about prolapsed organs & bladder/poop/vaginal issues with removal as my uterus is somewhat large *so eloquent lol
If going w/ ovary removal - do you have to do additional meds? For how long?
Thanks! I'm a mess ;D
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I'm on ovarian suppression rather than tamoxifen because of endo. My MO did a good job of listening and though she was pro-tamoxifen initially, after a few conversations and reading the notes from the GYN, she agreed that I would tolerate suppression better. The only test she did before was a DEXA. It showed osteoporosis, so I was sure she was going to go back on that plan, but she didn't. She didn't start blood tests until I'd been on lupron a few months. Lupron and anastrozole are her typical starting drugs, so that's what we did- there wasn't really any discussion there. Not having my period has been an amazing relief. The side effects of the meds are starting to ramp up now and part of me wants to just quit, but I really don't want my period back. I think the big thing for you is to find a MO that will actually listen and discuss options with you in a big picture way rather than just looking at age and cancer type.
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Thank you, OTMom! Very helpful. I'll get a fibroid gameplan w/ my GYN & then find an oncologist that will look at my history and have a discussion!
So do you stay on Arimidex now? Will your ovaries stay 'shut down' or does that wear off? (from Lupron)?
What type of side effects are problematic for you?
It's so difficult to navigate all of this - put out one fire, another one possibly pops up. Blah!
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I get a lupron shot monthly, otherwise it does wear off. There is a 3 month version of the shot, but it didn't play nice with my body, so I stick to the monthly one. I take arimidex daily.
Side effects haven't been terrible until recently and I don't know if what I'm dealing with now is side effect or something else. Hot flashes, sleep disturbance, and some joint achiness have been the only things and they've been manageable. Lately I've had intense facial and head pain that seems to possibly be stemming from my jaw, so maybe I'm developing TMJ? I already had degenerative stuff in my back and I think the lack of estrogen isn't helping that. I also have a cough/worsening asthma that I can't kick and in reading through side effects it seems that cough is one potential arimidex side effect. Unclear though if either of those are related. Still sorting through possibilities. And yes, dealing with all of the ups and downs of this is insane.
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