Zoladex, lupron, oophprectomy or…?

[HbbM]

I tired Zoladex this last summer. It was torturous. My Onc said it would be a monthly shot. I got it. When I got home and looked at the chart notes from the nurse who administered it, it turns out they gave me the 3 month shot.

overnight it was like all the anxiety I’d ever experienced in my life was rolled into a ball and multiplied by a thousand. That last for months and months. I could barely leave my chair. That’s obviously was bad enough and could just be a result of lack of estrogen not necessarily the chemicals. But I also had tongue swelling. Looking back I probably should have gone to the hospital but my own medical trauma and Covid stopped me from going and I just hoped I would wake up every morning and not suffocate on my tongue. It eventually went away after about a month or two.

So, here we are again months later and I’m willing to give all this medicine another chance since I’m running out of options.

So, do I risk Zoladex again but at the lower monthly dose? Do I try lupron? Or since I have such an aversion to drugs anyway should I just get the oophorectomy and then it will be one less drug I have to take?

I’ll be talking to my amazing oncologist about all of this next week but wanted to get some thoughts here.

Were the AI’s ever effective even without completely shutting down ovaries years ago?

[Ntash01]

When I had zoladex at the start of my mbc journey-BC nurse told me under no circumstances should I have the 3 monthly shot! If you decide to go for it, make sure they don’t give you that again, you cannot risk the same effects a second time - horrendous!

Nx

[HbbM in reply to Ntash01]

did she tell why?

[Ntash01 in reply to HbbM]

Because she told me that they are usually given to men in their thighs. I just remember her reiterating… do not get them even if sounds better than monthly ones!

[HbbM in reply to Ntash01]

wow! That makes me angry. Why in the world did they give me the 3 month one then!?!ugh!

[Ursula_I]

Hi

Poor you, that sounds awful.

I had Zoladex monthly for nearly five years until my cancer came back (and it turned out it had metastasised from ER+ to ER- which must be why the Zoladex / Aromasin stopped working). I had no side effects at all. I *think* the three-monthly shot is for men with prostate cancer - could be wrong. But I also was told not to have the three-monthly one - the nurses used to offer it because they thought it would be more convenient but the oncologist said absolutely not.

So maybe you should try it and see how you get on?

I think the oophorectomy can be done as keyhole surgery so that also might be a good option.

Can you ask for the opinion of the oncologist to help you weigh up the options?

Wishing you all the best and I hope you get some good support in making the decision

Lucy

[HbbM in reply to Ursula_I]

thank you.

[Jenniferp2122 in reply to Ursula_I]

what is wrong with the 3 month lupron shot?

[Ursula_I in reply to Jenniferp2122]

i don't know about Lupron which I think has a different active ingredient from Zoladex, but I was advised by the oncologist only to have the monthly version of Zoladex.

[Fiercefighter13]

When I was diagnosed with Metz, I immediately got in touch with my gynecologist, and had my oncologist call her as well. I had my ovaries removed within 10 days of the Metz diagnosis. It was a super easy surgery, I was back on my feet and went out to eat at a restaurant with my friends 5 days later. No regrets! When they biopsied my ovaries, they found metz cells in them......it was a Godsend I had them taken out! Plus, it's the only way to 100% guarantee there is no estrogen breakthrough from the ovaries so that the AI's work optimally. Best wishes for your journey, take care!!

[HbbM in reply to Fiercefighter13]

thank you so much. I’m leaning in this direction.

[Andersl]

You're very brave to have said nothing to your consultant before your next visit. You experienced an adverse reaction. He/she will need to take this into account when deciding whether to stop, or change the dose I would urge you to inform them as soon as possible and if anything like this happens again report it straight away.. if your tongue had got worse you may have struggled to breathe.

With warm regards x

[HbbM]

yes you are so right! I should have. Between Covid and my severe medical trauma (death in family due to medical malpractice and an aunt whose life was completely irreversibly destroyed due to stupid careless doctors over medication) I have a real aversion to doctors, hospitals and drugs. Thankfully I have an amazing and understanding oncologist who is patient with me and not judgmental. But I do need to be more careful with side effects. I’m learning….

[TwithBC]

my votes is oophorectomy… I had it 5 years ago at age 45; I do not regret it all.