Oophorectomy, anyone?

[alana303]

Hello everyone!

I just had a scan and feel really grateful that so far the Ibrance and Letrozole have reduced the lesions on my rib and pelvis. I am 50 years old, and am premenapausal, so I get a Lupron shot every month. I have been thinking about getting my ovaries removed since 1.) I'm not using them, never will use them, and 2.) They secrete estrogen, which my cancer loves.

My onc said that since my disease is stable, now would be the time to have an oophorectomy because I can safely go off the Ibrance for a month to have the surgery. It would be a laparoscopic procedure, so I would have minimal down time, and then we would know that my estrogen is controlled.

Have any of you had this done, or do any of you have any advice or thoughts?

Thank you - I am so grateful to have found you all in our club none of us wants to be in. But at least we have each other!

Alana

[illini9]

Hi - I had an oophorectomy after almost a year on Ibrance and Letrozole. Same thing - stable and a good time to take care of it and no reason to keep getting Lupron. I was 47. I only took one extra week off of Ibrance - actually not even sure I did that. it was a week at most - same as I did for my gall bladder surgery. I timed them so it was at the end of the off week and then delayed the start by a week. I did take one full month off once and it was fine too - felt great getting some energy back.

My surgery was laproscopic and out patient with very little recovery time needed. I'm glad I did it and doing it while "healthy" is a good way to go.

[alana303 in reply to illini9]

Thank you! I'm just not seeing a down side. I teach full time, but think this spring break would give me a week recovery.

[Justme153]

I was diagnosed in Jan 2017 officially ( I knew I had it for years before) I was 59. I was already done no monthly crap any more some hot flashes . I had a mastectomy of my left breast and an axillary removal done. I had radiation for 35 days. I took arimadex. My gynecologist wanted me to have the oophorectomy because he felt strongly that since I wasn't using it it wasn't worth the increase risk for other cancers. So I agreed to it Dec of 2018. All my pet scans and CT scans had come back clear and the thing they do I can't remember what it's called biopsy of the uterine wall that they do before they do the procedure all showed no sign of cancer. So they send everything away to be checked that is removed. Sure enough they found a spec of breast cancer in my right ovary. It was to small to show up on scans yet. At that point they switched me to Letrozole instead of Arimadex . They did redo pet scan Ct scan and an MRI to check for cancer but all came back clear. Just had CT scan again on Jan 9 and it came back clear. Needless to say I'm counting my blessings!!

[alana303 in reply to Justme153]

I'm thinking that it removes another level of risk of cancer somewhere else. Thank you!

[Moon-and-Stars]

Hey Alana,

I’m 37 and had the ovaries removed in 2018. Unfortunately medication couldn’t control my oestrogen levels so I had no alternative.

Like the other girls have said, it was pretty straight forward. It’s only a day procedure all going well. Recovery for me was a little slow. I over did it a couple of days after the surgery and did a bit of damage but it all healed up after a few weeks.

You will start menopause immediately. There isn’t a gentle lull in to it. But it’s all manageable . . . a means to an end.

I’ve no regrets. My only advice is to take it easy for a week or two and give yourself a chance to recover.

Best of luck ☘️

[alana303 in reply to Moon-and-Stars]

Thank you! I'm also thinking it's a smart move!

[Libra48]

Hi Alana... I was diagnosed with mbc in January 2019. I had an oophorectomy last September (48 years old). I have a similar story like Justme153. A PET scan and ultrasound showed a small mass in one of my ovaries. My regular oncologist and GYN oncologist were not too concerned but did advice to go ahead with the oophorectomy (to eliminate the Lupron shot and lower the risk of ovarian cancer) but unfortunately when it was biopsied it came back positive with the same cancer. I was upset but glad it was not a secondary cancer. I had the surgery during my off week from Ibrance with an additional 2 weeks but continued taking Letrozole.

The first few days after surgery I took it easy and rested. I had 3 very small incisions which now look like a scratch marks. The hot flashes are terrible but manageable. After I healed I had another scan which showed progression and I was taken off Ibrance/Letrozole after 7 months. I am now on a trial treatment of Kisqali and Faslodex since October.

Good luck! You have found a great group of ladies on this site!

[lashinator]

Hi Alana,

I am on same meds, and was going for Lupron shots too. Having your ovaries out to skip the shots is an amazing quality of life decision. All the docs were on board. You don't know how many years you would need the shots otherwise. One less thing to do.

It is an outpatient surgery with a 1-2 week recovery that is just rest. I never had to stop Ibrance/Letrozole combo.

Good luck, and take the rest time to heal properly!

[Hidden]

Hi Alana, hope all goes well with your op. I was told just an hour ago my Cancer is stable and has shrunk in my lungs and lymph nodes in my chest. My pelvis and ribs are worse affected. I had a Hysterectomy when I was 40. I’m now 70. I take Letrazole, Ibrance and have a Denosumab jab every month.

Best wishes

Cheryl

[diamags]

I did it and I say go for it!!! Like everybody has said, it's an outpatient proceedure. I went out to dinner with my husband that night! But you do have to take it easy for a few days. It just assures me that any ovarian cancer is off the table and my ability to create estrogen is hugely reduced. I was getting Zolodex shots and I'm so happy to be without those. In my mind, it was a very good decision.

[Hidden]

Hi Alana,

I have been given the option of having an oophorectomy too, but have refused to take up the offer. It is a very personal decision, so I would say it is entirely up to you. Weigh up your options and see if it is something you want to do. My GP said there are other options in the pipeline, so I am holding out for that. For the time being, I will stick with the zoladex injections.

Sophie

[PJBinMI]

I was post menopause when diagnosed so never faced this decision but I've done everything I can to learn about this lousy cancer and I don't know of big downsides to having an oophorectomy. And for those hot flashes, mine were terrible, Effexor has worked well for me. It's an antidepressant but also the "treatment of choice" for those of us who have hot flashes from lack of estrogen who cannot take estrogen. I take the long acting type, 75 mg three times a day. Hot flashes have gone from multiple times a day, face turning bright red and sweat rolling down my face, to occasional "warm surges". Something else that can help hot flashes is a cool damp cloth across the back of the neck. I just gotta add that I find the word oophorectomy very funny, like we are having our 'oophors" removed! Overectomy would make so much sense!

[Hidden in reply to PJBinMI]

Hi,

"Lousy" is about right! I can't think of anything complimentary to say about this disease. Like you, I have done all I can to learn as much as possible about this cancer and to try and improve my health. Your hot flushes sound like they were awful. I'm glad you are no longer bothered by them. I had my first hot flush in June 2018 and the last one was five months ago.

Sophie

[alana303 in reply to PJBinMI]

I'm also taking Effexor, and boy does it help with the hot flashes and night sweats! I tried going down to 150 mg a day recently and all the hot flashes came back, so I'm back up to 225. I'm going to try what you are doing, spreading out when I take them rather than taking them all at once! Thanks for your reply!

[OceanBreeze3]

Great question. I am 52 and in the same situation. Glad to read the comments. Hoping to schedule the procedure for March.