Ooooh Oophorectomy how was it for you?

Katiejane777 · February 2018

So my Med Onc is putting me on Tamoxifen and Zolodex...kind of felt like over kill but sure. I’m keen to kick cancers butt. Then he mentioned doing a oophorectomy down the track. Gulp. I’m 46 and nowhere near menapause. I know I can't ever take HRT or most things non BC people can to alleviate side effects soooooo what was it like for you? What were the short term side effects? Long term side effects? How did your body cope in the years after your oophorectomy? Did you get your uterus out too?

I'm nervous because my Dad has hard core heart disease and all the older females in my family have oesteoperosis. Did anyone really regret getting their ovaries out?

Katiejane777 · February 2018

Anyone

farmerlucy · February 2018

I had an ooph at 55 to switch to an AI, and even at that age it was no picnic. Many women have no troubles but that wasn’t the case for me. You are wise to go slowly. Perhaps you might get a second opinion? I’m like you. My body likes its estrogen

Katiejane777 · February 2018

Thanks Farmerlucy. I am so scared about the side effects being awful.

Wildplaces · February 2018

Katie

What side effects are you scarred about:

Immediate/intermediate - hot flushes, mood swings, dryness of mucosal surfaces, loss of sexual appetite

Long term - osteoporosis and vascular disease

Surgical/Anarsthetic - procedure related

Well - ovarian suppression which you are taking can give you the immediate ones - how are you going with it?

Osteoporosis can be managed if diagnosed early - vit D, calcium, exercise, bone remodeling agents.

Heart disease - you may reach menopause in a few years so will somewhat start to catch up family risk wise - diet, exercise, nonsmoking, chol control, stress management should help ALOT!!

I had a hysterectomy/bil oophorectomy 2 weeks after my mastectomy by choice. I was fine. Home next day.

I am on AIs - I did have a 4 cm IDC/ one node/13. I have hot flushes more so in the heat and joint pain - nothing I cannot live an active life with. I am 49, child, full time work.

It is important to work out for yourself what scares you and be honest about that with your onc

Wildplaces · February 2018

and you can stay on ovarian sup for a long time - no need to launch into surgery if you are not up to it.

all I am saying is be clear on what potential side effects are the big problem - and then you will be able to say yep I can do that or no not for me

the lack of oestrogen ages us somewhat - to be honest, I look better now because I eat and sleep and exercise more/better but for some women thedryness and skin aging is a biggy

😊

Katiejane777 · February 2018

Wildplaces thank you for your reply!!!! Im scared about constant hot flushes and mood swings as I care for two family members with PTSD and another who is recovered from an eating disorder and has anxiety. I have always been the calming person in the family that holds it together for everyone else. I have always been super sensitive to hormonal fluctuations so I am terrified I won’t be able to do that on the Meds let alone with the surgery removing my ovaries. I also work in a job where I need to be calm and at my cognitive best. I also don’t want to have a compromised sex life and age prematurely.

I had a baseline bone density scan and cholesterol test and both were awesome so I’m starting from a good place. My Mum has oesteoperosis after a full hysterectomy and she was on HRT. My grandma and Aunty both had it too so while I am doing all I can (calcium, weight bearing exercise) I know I am at risk. My dad has severe heart disease- heart attack, quadruple bypass, pacemaker.

I get my onco wants to stop me dying from cancer I don’t want that either. Ugh. But I also want to not have heart disease either. I am nowhere near menopause so it will be a huge hormonal change for me. I’m just worried it will affect my work and homelife in a negative way.

Katiejane777 · February 2018

Thank you again wildplaces your response was very helpful!!!

Lolis197138 · February 2018

Hi Katie,

I would get a second opinion. I was put on Zoladex after my recurrence. I am only 37 and my cancer is high ER+. My MO hasn't brought up removing the ovaries. As you I am worried about the cognitive, heart and bone impacts if I remove the ovaries. My side effects to date on being on Zoladex are hot flashes, night sweats and some irritability (but that was there before the suppression anyway). I am planning to be on the meds just in case Mr. C decides to turn ER- or until I decide that the ovaries are coming out.

Do what make you feel and sleep better at night. The doctors may suggest something but the decision is yours. And as Ioana has suggested do a pro and con list and what you can live with it not.

Hugs

Lola

astyanax66 · February 2018

Hi Katie,

I had a prophylactic oopherectomy, done in two stages. The first was with a complete hysterectomy; they left an ovary to allow me to go through menopause "naturally." Within 4 years, though, it developed the same cysts (benign) and other issues that caused me to have the first one out. So here is how it went:

1. The hysterectomy (age 46) was, to be honest, horrible. I had large uterine fibroids and cysts in my right ovary and fallopian tubes, so removing things vaginally or laprascopically were not an option--full abdominal incision. The doctor (he was not my regular GYN) was a sort of "no pain, no gain" (!!!) sort of fellow, and I thought I would die of pain after. I really did. He prescribed ibuprofen and Tylenol. It took my husband and a friend who is a nurse *demanding* some better pain control before I wasn't crying in agony (this was 1 night in the hospital--and by the way, I had no meds in childbirth, an unsedated colonoscopy, and several kidney stones--this was worse), and the first afternoon and next morning were terrible. I think if I'd had a doctor more cognizant of pain control, I'd have recovered much quicker. I took 4 weeks off work and worked from home 2 more weeks--and to be honest, that was still too soon. I took pain meds for about 4 days after surgery (I split my doses and took them carefully--I only had a small amount), and then switched to tylenol and naproxen. It wasn't enough--I had pain through week 2 every day. I know everyone is different, but if you can, a laparascopic approach and good pain control will mean a much easier recovery.

2. The removal of the remaining ovary surgery was done with a da Vinci robotic surgery. WOW. So amazing! There was almost no pain at all and 4 tiny incisions--and the doctor who was my regular GYN (did the surgery) said, "That was a mess down there after the hysterectomy. I cleaned up a lot of adhesions." I felt very good. The only complication was bad nausea post-op (which happens every time). It was a day surgery, so I was only there a couple of hours. I worked from home a day and then took a weekend and was back on Monday. Being my regular doctor, he was quite on top of the pain control, but this time--I hardly needed it, mostly just a day or two after.

That was almost 2 years ago. I have been fortunate--no HRT of any kind and minimal side effects. I take high-quality fish oil and calcium. There is some dryness, but I use a non-estrogen gel from the pharmacy shelf for that. On rare occasions--a hot flash and some insomnia, but that's about it.

I absolutely don't regret having it all taken out, especially since ovarian cancer also runs in my family. I was hoping it would mean no breast cancer, but alas, that was not to be...But I do feel much less pain and such in my entire pelvic/abdominal region from having all the cysts and fibroids gone.

I hope that helps, and please do get a 2nd opinion if you feel uncertain. I've learned this is a wise thing to do.

Dee

Famgal · February 2018

I had an oophorectomy at age 33 bc of BRCA2 - I haven't had terrible menopause symptoms - was told and in my case true it was similar to my mother's symptoms

Katiejane777 · February 2018

Thank you Lolis! I’m glad your side effects on Zolodex aren’t too bad. Are you also on Tamoxifen?

Katiejane777 · February 2018

Thank you Famgirl! I’m glad you didn’t have too much of a bad time. My mother had a full hysterectomy but was on hrt for a long time. She had hot flushes mostly from memory. She eventually went off hrt but has oesteoperosis which she treats medication.

Katiejane777 · February 2018

Thank you astayanax66 I’m sorry your hysterectomy was so painful! My mum had one with an incision but she was in hospital for about a week. Thank you for sharing your story it was very helpful. I might get another opinion.

Wildplaces · February 2018

Katie,

The truth is that anything you are given will suppress oestrogen - whether it is medical or surgical - and thus will give you some of the side effects of " premature aging " let's lump them into that, as it is obvious from the thread we all know what they are.

But if you have a ER positive cancer there is a fair bit of evidence oestrogen suppression decreases recurrence risk. The difference of the various forms of suppression in recurrence risk probably gets smaller with a lesser Stage cancer ( probably not certain ) - not entirely elucidated - there is some work that suggest metastatic potential may occur a lot earlier then initially thought.

You have a 2 cm IDC I presume, no nodes ? Lymphovascular invasion ? Oncotype - I note no chemo - you are, if you follow standard treatment, going to have some form of oestrogen suppression - You can be tested for LH/FSH/ serum estradiol. So you can have some idea of what the drugs are doing - you may need a trend over time in hormone levels to establish a diagnosis of menopause.

Probably the most important caveat of your post is - whatever you decide - and you most certainly have time to consider surgery- I think you are at a cross roads where you will have to start putting yourself first. It's a tough one for all of us, myself included - I had to write it down - "if you do not stay healthy you can not take care of anyone!"

There is an Aussie thread started by a wise lady called Chrissieb - feel free to drop in any time!

😊🌷🐣

Katiejane777 · February 2018

Thank you Wildplaces. You are right I have time before I decide if I want my ovaries out or not. I had a 2.2mm IDC, no lymph involvement or lymphovascular involvement was noted in my pathology report. They got clear margins with my lumpectomy and I had 16 regular/4boosts as my rad treatment. I know I need to start looking after myself. I believe stress managent will be a huge part of that. My family has just had the most incredibly stressful time the last few years and I believe it’s taken a toll on me. I’m now exercising more and eating even better. I’ve cut out most of my alcohol and have lost 6kgs. I have a bit more to lose but it’s a start right?! Thank you for your input. Everyone’s responses have really helped.

Wildplaces · February 2018

Katie,

You sound like you have it covered and by all available knowledge you may never hear from this horrid beast again.

Congrats on losing 6 kg - I have been trying to shift 2-3kg for the last 12 months and they are stubborn - I am of normal weight ( 62 kg at 164 cm) - I would just feel better running a little lighter, still...

I drink red wine - much less then before diagnosis and I have pulled some old crystal glasses out - the cup being a lot smaller than the modern version. I have tried to declutter, simplify, delegate and enjoy little stolen moments of peace. I am still very much working on that. I too work in a stressful environment - I am getting better at identifying what I can change and walking away ( yep...) from what I can not.

I have no easy answers but to keep starting at my own piece of "post it" paper...

( you know I sometimes think if I keep saying it it will sink in

No family issues apart from being a single parent, just a highly stressful work that I adore and I never ever identified as stressful until I had this little forced sabbatical in 2016.)

Katiejane777 · February 2018

So much wisdom in what you’ve said Wildplaces. I do have time to decide on surgery. I really need to get better at self care and delegating. Sigh. It’s a process.

missmelissa90 · February 2019

Hi all!

I've been away from the website for awhile, but I wanted to check-in with what I hope is a final treatment update. You can see from my bio that I've done it all (Chemo, surgery, radiation, surgery again)! I'm 46.5 now and went into chemopause about a month after I started chemo back in Nov. 2017. My OC and I decided to wait to have the conversation about medication until after I was done with radiation and he felt that since I had already started to go down the menopause road, anastrozole was a better long duration treatment choice. However, since I wouldn't be "officially" menopausal until 5 years with no period, he said I could get a shot every three months to ensure that I was in menopause or I could have my ovaries out. Surgery was the nuclear option, but since I knew that I'm never going to want to have another baby, and because my dad has liver cancer, I wanted to take everything out that could go bad...even if there isn't a strong link between my PALB2 mutation and ovarian cancer. In doing some family research I also found that one of my great aunts died from surgery related to an ovarian cyst, so that was enough info for me to decide to go ahead. My only question was whether or not to have just my ovaries out or have a hysterectomy as well and I discussed this with my gynecologist who performed the surgery. Her feeling was that with my PALB2, family history, and the fact that anastrozole can cause issues with your uterus, she recommended having the works removed. The surgery was laproscopic and actually the easiest treatment I've had and I have had no obvious side affects. I know that there isn't a 100% guarantee that they remove all of the tissues that can turn cancerous, but I definitely feel better having had it all removed. I was diagnosed as having osteopenia and so I'm taking daily calcium supplements and working on increasing my weight bearing exercise (still a struggle being consistent), so this will be my continuing challenge, but I'm hopeful that a healthy lifestyle will keep it all in check. I've also gotten suggestions from my gyno on how to "get it on" with my hubby again after all the abuse that my nether regions have suffered. The primary tips are using a vaginal moisturizer three times a week, stretching things out manually with a little help from my "friend", and finding a lube that works best for me. I'm past the eight-week waiting window, so I'm doing the required work on my part to make sure I can give us both a great Valentine's day gift! Good luck to everyone!

Ooooh Oophorectomy how was it for you?

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