Hysterectomy and Overies removed

I haven't been gene tested but opted to have my ovaries out before starting AI. I've had a recurrence after 11 years and was quite happy to get rid of my ovaries as I was perimenopausal  and didn't want to stuff around with Zolodex. It won't have made much, if any, difference to my BC outcomes but has simplified my treatment (I've had enough jabbing, stabbing and prodding to last a life time) and I can stop worrying about whether I'm at increased risk of ovarian cancer.

Hi @Shorelle I was offered a hysterectomy after developing Endometrial Hyperplasia. I decided against it because of the risks of surgery and not having the time to take off work for recovery. I didn’t want anything else cut out of me either and didn’t like the potential side effects. There are always risks. How far do you go to minimise them? Now I have some heart issues, anaesthesia is another risk factor for me. x 

Hi Shorelle. I understand your concerns. I planned if my genetic test did came back positive I would have ovaries and fallopian tubes removed. I wanted to minimise my risk of ovarian cancer which was almost impossible to detect early and had lost 3 Aunts and a grandmother to it. One of those Aunts had 2 different primary breast cancers as well. 

When I eventually developed breast cancer and not detected until I found a lump...despite 10 years of mammgrams... I was angry with myself I hadn't gone down the road of trying to see if I did carry the same gene  (I had tried 20 years before before but family were in Scotland and it was a dead end).  However this time they did identify which gene it was and the genetic team were convinced I carried it.  But it turns out I didn't. Neither did any of my full blood siblings. Such a happy day. They were so sure I did have it...they had them send out actual dna from Scotland and rechecked it against my sample.

My half sister though died from breast cancer., which she developed around the same age as myself.  No family history on our shared maternal side and her daughter developed breast cancer in her 30s. The genetic team studied their dna and have found nothing. So at this time they think we are either just damn unlucky or we carry an as yet unidentified gene. Both myself and niece chose bilateral mastectomies. However we haven't chosen ovary removal. She is 14 years cancer free now.

I had gone through menopause so don't need to do this without the ovarian risk. Surgery comes with its own risks. I know for me keeping my cervix was important for sexual function. A hysterctomy can have an impact on that and urinary continence also. I figured I had lost enough girly bits so wanted to hang onto what I could.

I think it worthy of a conversation with an onco gynacologist.  However you need all the facts on sexuality and continence should you remove organs you don't need to. All surgery comes with anaesthetic risk, infection risks and then there is the scar tissue that forms inside which can cause adhesions and lead to problems later down the track. I'm not saying don't have the surgery if it's needed, but I'm saying make sure you go in with eyes wide open.

I know for a brief time I considered further surgery just in case. But it was the fear driving that. Eventually I was able to let that go and just start to accept this new changed life, one with a little more anxiety than I would like, but life none the less. Will my cancer come back? I don't know. But I just decided I didn't want to live my life crippled with fear...however long that may be. So somehow I started to think positive thoughts. I kept saying to myself I am cancer free now. And I HAD breast cancer...not that I have...and somehow it flipped a switch and life has been able to go on. I still worry about aches and pains being more than just arthritis...I think we always will. But hey...I'm a survivor. I don't know for how long...but be damned if I'm going to let that bc suck any more joy out of my life. 

Kath x

Hi @Shorelle
It is natural to feel that fear of recurrence and want to do everything you possibly can to prevent it. But a part of us also does not want having cancer in the past (it is in the past if you have finished active treatment and are just on Tamoxifen) to impact too much on life after bc.

I am heading towards 5 years post a Stage 3 diagnosis. I had 2 years on Tamoxifen which I was fortunate to not have many effects from (just some mood swings, my husband tells me  ;)). I then came out of the chemo induced menopause and it was decided (because of my age - 49 by then) that removing my ovaries would allow me to change from Tamoxifen to an Aromatase Inhibitor which does slightly lessen the chance of recurrence.

Side effects of having my ovaries removed at 49 were not too bad. I may have made a different choice had I been younger. Doing this and changing to an AI style of hormone blocker have not helped my bone density but for me it helped to know that it gives the best protection against recurrence.

Feeling less fearful does take TIME. I channelled my fear into motivation to lead a healthy lifestyle. I figured I had done everything medically recommended by my doctors (who I trust to know what is the best for my situation - we are all different), so I look after myself through healthy eating and daily exercise.

Part of looking after yourself is learning how to really enjoy life again. For some of us, this takes time and a little help from others. I still have my moments but I think the thing that helps me the most is the exercise. I go bushwalking and lift weights (for my bone density). I love feeling surrounded by nature on my hikes and have made new friends through this. The weight lifting helps me to feel strong and that helps me to believe that my body is healthy.

We are all different but united in our battle to not let the fear of cancer take over our life. We cannot control the future but we can learn to control our reactions and ENJOY right now. Right now I feel healthy and enjoy many things in my life. I hope that you can find a way to feel happier again too. Don't let the fear of something that may never happen rob you of happiness with your family and friends. Talk to your breast care nurse or maybe the Cancer Council helpline. There are ways to get on top of that fear. Sending you hugs. xxx

Hi there @LMK74. I've just PM you about the spa bath converter thingy I have that can help with your aches and pains. Marge❤️

Hi there shorelle. I had triple neg bc last year aged 43, I've had a hysterectomy prior to my bc diagnosis as my mum died from endometrial cancer but I kept my ovaries. Oncol told me would only need to take my ovaries if I was + for the BRCA gene which I wasn't. Hope this helps. Margie x

I had a hysterectomy 10 years ago and I gots bone mets 3 years ago. I am back on hormone blockers❤️

So far I've had 4 of 25 zaps of radiation.  I'm really fatigued but that's more from the chemo and zoladex. Every joint in my body is stiff and aches and I feel more like a 80yr old instead of my 43 years lol. I'm dreading the hormone blockers. How are you doing, what treatment are you having.

 @LMK74  How are you going with your treatment?

Hi @Shorelle, I believe even if ovaries are removed a hormone blocker is still needed as we still produce oestrogen from elsewhere in the body. I wish I didn't have to take hormone blockers but will start on them when my radiation is finished. No easy answers I'm afraid.