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 xxalso if any one has had ovary and Fallopian tube removal what was your experience xxthanks for listening xx

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

@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

I have asked about this a couple of times (and will ask again). I know you can't have everything removed that can host a recurrence but I do think, given the ovaries are inactive and have to be, and that ovarian cancer is so hard to detect early, it kind of makes sense to take them out. I guess there's dangers with every surgery and that has to be a consideration but...

Hi @kmakm yes I do feel settled. It is a well researched decision for me and I feel definitely the right thing for me. I had much to weigh up. (Huge cancer history in my family although only one B.C. ). The biggest one is that when you read all the very vague symptoms I seem to suffer from all of them constantly. I am so worried I would miss it because of that. I have chronic back pain and most of the other symptoms due to other health issues. It wasn’t an easy decision but one I am now at ease with as are my medical team. Paula xx

@mum2jj @Mic80 So glad to hear you have both decided on your surgery & are comfortable with your decision. To have the risk of ovarian cancer removed is such a HUGE relief to me & the recovery & surgery is quite simple also. I know I now have to watch my bone density due to the chance of getting osteoporosis but for my case, it is easier for me to combat this disease compared to fighting ovarian cancer. All of us here have had cancer & many have a family history so it's all about lessening our risk of re-occurrence. I know osteoporosis is a horrible, crippling condition but I now have 2 yearly bone density tests, I walk & run twice a day plus I do Pilates & strength training. My gyny onc said i would have no trouble due to the amount of exercise I do but I do still have regular checkups with my GP & blood tests to check on Vit D levels etc & if needed a supplement can be taken. Good luck ladies & may you both feel a weight of relief lifted after the procedure. love & hugs xxxx

Ovary removal. | BCNA Online Network

Anne65
Member
6 years ago
@mum2jj @Mic80 So glad to hear you have both decided on your surgery & are comfortable with your decision. To have the risk of ovarian cancer removed is such a HUGE relief to me & the recovery & surgery is quite simple also. I know I now have to watch my bone density due to the chance of getting osteoporosis but for my case, it is easier for me to combat this disease compared to fighting ovarian cancer. All of us here have had cancer & many have a family history so it's all about lessening our risk of re-occurrence. I know osteoporosis is a horrible, crippling condition but I now have 2 yearly bone density tests, I walk & run twice a day plus I do Pilates & strength training. My gyny onc said i would have no trouble due to the amount of exercise I do but I do still have regular checkups with my GP & blood tests to check on Vit D levels etc & if needed a supplement can be taken. Good luck ladies & may you both feel a weight of relief lifted after the procedure. love & hugs xxxx
Sister
Member
6 years ago
It's the lack of oestrogen that causes most of the problems and having the hormone treatments we're way past the "no ovary" concerns as I understand it.
arpie
Member
6 years ago
As with @Sister - I've also wondered if the removal of ovaries (in my case, 10 years post menopause - 20 years since the start of menopause) may prevent or reduce the requirement for AIs and at the same time, obviously prevent one of the most difficult cancers to detect from even occurring - Ovarian Cancer.

I am aware that some estrogen is also created from our own fat reserves that would need suppressing.

I wonder if any researchers have looked into this - from women who HAD to have ovaries removed and incidences of breast cancer within that group?

Obviously, the earlier the age of ovary removal, the more chance of osteoporosis - but at this point in time, with modern medicine & scanning methods to monitor bone density - it could be an option to explore or at least, worthy of research.

After all, it IS estrogen that is feeding most of our BCs
Patti_J
Member
6 years ago
And as scary as cancer can be, immobility because of broken bones, etc. is, for me, a far worse prospect.
Patti_J
Member
6 years ago
17 years ago I had the opportunity to have an oophorectomy. This is something I have posted about before.
Because she had a full hysterectomy, my beautiful, very erect mum ended up having severe osteoporosis and a dowager's hump.
mum2jj
Member
6 years ago
Hi @kmakm yes I do feel settled. It is a well researched decision for me and I feel definitely the right thing for me. I had much to weigh up. (Huge cancer history in my family although only one B.C. ). The biggest one is that when you read all the very vague symptoms I seem to suffer from all of them constantly. I am so worried I would miss it because of that. I have chronic back pain and most of the other symptoms due to other health issues. It wasn’t an easy decision but one I am now at ease with as are my medical team.
Paula xx
mum2jj
Member
6 years ago
Thanks @Mic80, hang in there girl. Chemo can be a bitch so one day at a time and one foot in front of the other. That was my mantra, and this too shall pass.
Hugs
Paula x
Mic80
Member
6 years ago
Hi @mum2jj,
mom doing ok thanks. I am smack in the middle of my AC treatment so just focusing on getting through this stage at the moment lol...
i have an oncologist appointment next week so I’m going to ask some questions as to when I can schedule this operation.... I just want it done as I feel waiting is just tempting fate now.... I guess I just have to be patient and focus on one plan of attack at a time.
So pleased you have yours scheduled.... I will be thinking of you and please let us know how you get on xxxx
kmakm
Member
6 years ago
Are you feeling settled with your course of action @mum2jj?

@Sister I have often wondered why it's not more common.
Sister
Member
6 years ago
I have asked about this a couple of times (and will ask again). I know you can't have everything removed that can host a recurrence but I do think, given the ovaries are inactive and have to be, and that ovarian cancer is so hard to detect early, it kind of makes sense to take them out. I guess there's dangers with every surgery and that has to be a consideration but...