Ovary removal.

Mic80Mic80 Member Posts: 44
edited May 24 in General discussion
Hi all, today I got some news that has rocked me a little. Almost 2 years ago I lost my mum to ovarian cancer, a year later my sister was diagnosed with metastatic stage 4 breast cancer and about 3 months ago I was diagnosed with stage 2 invasive with node involvement. I had genetic testing and today I got my results. I have the gene mutation brip 1. Apparently this is very new as far as testing is concerned. They have however found an increase in my risk of ovarian cancer. I am both needing to vent as well as seeking advice/experience that others may have had xx
also if any one has had ovary and Fallopian tube removal what was your experience xx
thanks for listening xx 
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Comments

  • kmakmkmakm MelbourneMember Posts: 7,516
    Hi @Mic80. You have my sympathy. I have a different gene mutation (CHEK2, and a rare one within that group). My sister died from BC and we discovered last year that my mother and I had the mutation. Your description of being rocked by the news is a good one. It doesn't change anything per se, but your world shifts on its axis a little, and tends to colour your view somewhat.

    I had had a double mastectomy a few months earlier, so the discovery of the mutation reinforced my decision in hindsight. It also raises my risk of some other cancers as well. Colonoscopy coming up soon...

    We've had quite a few here who've had an oophorectomy so I'm sure someone will be along shortly to assist. My inderstanding is that it's a relatively straightforward procedure with little pain.

    Big hug mutation cousin! K xox
  • lrb_03lrb_03 Member Posts: 1,159
    edited May 22
    I had tubes and ovaries out just over a year ago.  Keyhole surgery. In one day, home the next, didn't need much in the way of pain relief. I had 2 weeks off work, probably could have gone back a few days sooner. I tired easily for a couple of weeks more.

    My skin has been much drier since that surgery,  but I haven't noticed any other real changes. I was already post menopausal,  so no futher changes there.

    I did speak to a genetic counsellor but no testing was recommended.  My family history wasn't strong enough for any one cancer. My grandfather had lung cancer after smoking heavily for 60 plus years.  My Dad is one of 5. Of those, only one did not have cancer. , and out of 11 of us in the next generation, 3 have had cancer (all different).

    We did discuss the possibility that there could be some genetic predisposition to non specific cancer, but no way of knowing, so.......

    Take care xx
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,838
    I got rid of mine in December 2016. I did it at the same time I had my port put in, a week or so before chemo. I had    wicked shoulder pain for a couple of hours which is caused by the gas they use to inflate your tummy during the op and  some minor problems with dissolvable stitches a couple of weeks later, but apart from that I was up and about very quickly.
    I haven't had any testing done, but as I'd had a recurrence and knew I'd be on AI for years, I figured being rocketed into full menopause (the last step is a doozy) was a small price to pay compared to Zolodex injections and the worry that I'd develop ovarian cancer too.
    I've never regretted it. The game plan is to keep my oestrogens to a minimum which was always going to have its own unpleasant set of side effects whether I did it physically or chemically. Mxx
  • JulieVT11JulieVT11 Chermside, BrisbaneMember Posts: 53
    edited May 22
    I have had both ovaries removed due to large cysts which were benign.  This was done pre BC.
    As other ladies have said it was day surgery and pretty easy recovery.  The only big issue for me was it pushed me into instant menopause at 48 and that was pretty yuk. Julie xx
  • RennersRenners Member Posts: 4
    I have the MHL1 gene also known as lynch syndrome. This gives higher risk of bowel, ovarian and uterine cancer. The recommendation I got was full hysterectomy before 45 as screening wasn’t the best. I was in the process of seeing all the specialists to have the hysterectomy and then BAM I hade breast cancer. To say I was angry was an understatement, I was doing everything I could to prevent the other cancers and then I get BC. I have finished chemo, recovering from double mastectomy operation I had last week and will need radiotherapy after I heal. Then I will be still going ahead with the hysterectomy. My decisions have been to give me the best chance of this not reoccurring and not be in this position again. Life is too short and at 44 I have so much more to do. I have/will loose a lot of my womanhood but my health is more important. I have been advised that it can be done via keyhole so I will hopefully recover quickly.  Good luck and I hope all goes well. 
    To cope I look at the genetic testing as a blessing as it’s a warning and I can make a choices to help reduce the risks. A lot of people don’t get a warning.
    Renee xx 
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,838
    @Renners xxx

  • KarynJKarynJ SE QldMember Posts: 106
    @Renners sounds a little like my story.  I was booked in to have a partial hysterectomy - leaving ovaries behind because I was pre-menopausal.  Went for my annual mammogram to get it out of the way before surgery and whammo - hello BC.  So surgery was put on hold for more urgent surgery (lumpectomy) and radiation.

    @Mic80 I had a full hysterectomy and oophorectomy because my BC was ER+++.  As I was planning the hysterectomy anyway, recommendation from oncologists was to take everything out - ovaries, tubes, cervix.  No more pap smears!!!

    I had a bladder sling sheath operation at the same time as the hysterectomy so my surgery was open abdominal and I was in hospital for a full week.  The pain for the first few days was horrific and because I have tolerance problems with a lot of medications, it took a while for the doctors to get the pain relief sorted out for me. 

    However, since having it done, I don't regret it one bit. Yes, recovery was slow but not having painful periods anymore and knowing I've taken a big step in reducing ER to discourage the cancer to come back is a huge relief.
  • Anne65Anne65 Member Posts: 261
    @Mic80 I had my ovaries & tubes removed last April following my BC surgery 4 months earlier. As with others, surgery one day & out the next with keyhole surgery & 3 tiny entry points that healed brilliantly. I had a couple of weeks off work & only suffered slightly with swelling & bleeding which was normal. The worse thing was the referred neck & shoulder pain due to the gas they pump into your abdomen to operate. I had heat-packs on both shoulders for around 3-4 days & just tried to keep moving & walking to get it out of my body!
    My mum died of ovarian cancer when she was 46 y.o. Between my surgery & radiation, they did the gene testing on me to see if I had the BRCA gene as it may sway the decision whether I was to continue with the rad or consider having a mastectomy, as recon is hard to do after rad treatment. My results came back negative so I continued with my rad. Previous to my own cancer diagnoses, my mum was the only family member who died of cancer but as she died at such a young age, my entire medical team said it was a "no-brainer" to have the operation to have my ovaries & tubes removed.
    I must admit, i was very happy to get them out as this disease has been haunting me all my life. Whenever I would get any pain or bloating, i would worry that it was cancer. I would often have ultrasounds to check it out but they say that it is sometimes not picked up during the test. I remember having my checkup ultrasound around 3 months after the operation & the lady who did it said that when she had finished having children, she was going to get hers removed as she had seen first hand so many sad cases of this disease which is the silent killer! When i told her my story, she agreed that i had done the right thing.
     My mind is now clear & i dont have to worry about a secondary cancer returning in that area. Even though my gene test results were negative, everyone agreed for me to have the simple operation. i was already menopausal so i didnt have to worry about that so the only thing i have to keep check on is my bone density as that is something that can deteriorate when you have your ovaries removed. i do strength training at home with hand weights & go running & walking & do Pilates. My first bone density test came back fine so I will have them every 2 yrs to keep check on it.
    Good luck with your decision but i can say that it is like a weight has been lifted from me since my operation & I dont regret it one bit. I remember when they were about to put me to sleep before the operation, i said, through tears,  that I was doing this for my mum & i bet she was proud of me!! Take care. love & hugs xx
  • mum2jjmum2jj Member Posts: 3,921
    @Anne65 do you mind me asking was it April 12mths ago or just last month? Also if you don’t mind me asking how old are you? I am toying with this op. I have had a recurrance (8. Years ago) had triple neg twice. Have had gene testing and it’s negative , but suffer often with the stupid vague symptoms, and like you it does my head in. The dr I saw for my check up last week who wasn’t my usual surgeon (she was on mat leave) said she thought it was a good idea. I am going to have a chat with a gynae to try and help me decide. You sound pretty symptom free too. No hot flushes or anything?
    paula x
  • Mic80Mic80 Member Posts: 44
    Thank you all so much for taking the time to read and respond xx
    Feeling a little less overwhelmed with it all xx
  • mum2jjmum2jj Member Posts: 3,921
    @Mic80, glad you are feeling better. I am so sorry to hear about your Mum and sister. Such an awful disease.  By the sounds of things it is definitely the right thing to do for you, still I get how you are feeling. Does it ever stop? Take care. 
    Paula xx
  • Anne65Anne65 Member Posts: 261
    @mum2jj I am more than happy to answer your questions & any others you may have!! I'm not a doctor but sometimes the help, advice & support  we receive on this forum, is more relevant than that given by a professional as we have been through it! Firstly, sorry about the confusion but I had my surgery on Friday April 13th 2018 (of all the dates they could pick for me!!) & I was 52 y.o. when I had the operation (53 now!). As I had already reached menopause, i didnt suffer any change of symptoms. I was already getting the odd hot flush which i still do but no change from before or after the surgery.
    As I said in my post above, the only thing i suffered with for a few days after was the referred neck & shoulder pain. They did warn me about it, but i had no idea that a referred pain could be so painful! It's just a side effect from the gas they pump into your abdomen. Putting heat packs on your shoulders is good for relief & you just have to get moving & walking as much as you can to get the gas out of your body.
    You do have a few days of slight bleeding after wards which is normal & you may be a little swollen.
    I had to do a bowel cleanse before i went into hospital but this is pretty standard with a lot of abdominal surgery. As with most operations, you can get constipated afterwards & as your tummy will be a little sore, i would suggest you have a suppository on hand as the last thing you want to do is be pushing when your abdomen has just had surgery!
    Also, with your ovaries removed, you do have to monitor your bone density. I walk, run, do strength training & Pilates to keep active & my bones strong. Get your doctor to test your Vit D & calcium levels as you may have to take supplements if your levels are low. You can get free bone density tests in some places through the public system so i will get mine checked now every two years. Its good to get this test before or soon after your operation so you have a base level to work with.
    I am so sorry to hear that you have had a recurrence after all this time. I'm glad you had the chance to have the gene testing & great that it has come back negative as that would be a relief, as it was to me. You just have to hold on to some positives in this world! What is your next step now?
    I totally understand about the stress of worrying when you get a sign of a symptom. Ovarian cancer had always been at the back of my mind because of my mum & to now have that stress gone, it's a huge weight lifted. You cant underestimate what the stress of worrying can do to you & i will never forget what my ultrasound lady said to me after my checkup. She said she is going to have hers removed when she has had kids as she has seen the horror first hand, that this disease can do. That was pretty powerful coming from someone who has no symptoms or family history.
    Good luck with your decision & please keep in touch as i would love to know what you decide & if you go ahead. i would love to help you through with any advice. A simple operation with minor post-op pain...a small price for peace of mind!
    Take care Paula & stay strong. Love & hugs xx
  • lgray3911lgray3911 Member Posts: 207
    Hi @Mic80 my cancer was oestrogen positive so I opted to have ovaries and tubes removed. Very quick surgery stayed in over night only because I had a late surgery time otherwise would have been a day procedure (had to keep me in for observation). Back to work 2 days later zero negative side effects or issues! Except for the fact that I am now fully in menopause (chemo had done that anyway)! Good luck x
  • mum2jjmum2jj Member Posts: 3,921
    @annie65, thanks, I’m actually glad to hear it was over a year ago, as good to hear if any side effects had popped up. I am seeing a gynae to get some more facts. Just wondering if mine will be more complicated as I have had a bilateral TRAM reconstruction so have mesh etc in my tummy. I had an ultrasound the other day so will see what that reveals for her. My recurrance was 8 years ago, not long after first lot of treatment finished so well over the horror of that now I am well in menopause and do suffer from osteopenia so do need to monitor that. Just wondering if there were any mood swings anxiety/depression associated with it all. I am a bit of a worrier and overthink everything, although trying hard not to. Will stay in touch. @Mic80 sorry for hijacking your post, although I. Sure all these ladies are helping you also. 
    Happy weekend all. 
    Paula x
  • mum2jjmum2jj Member Posts: 3,921
    Hi @Mic80,
    How are you going. I have been to see my gynecologist and have booked to have my ovaries and Fallopian tubes out on July 23rd. It’s interesting reading the different recoveries that ladies have. I am on my feet all day at work so am leaning towards 2 weeks just in case, however feel it might be a lit too long. I’d rather book more than less and have to call up and extend,espescially as they need to organise cover for me. 
    Hope you doing ok. 
    Paula xx
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