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Onc Visit - Ovaries to go

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Guest user
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Re: Onc Visit - Ovaries to go

Thanks Deb, I'll have a look x
Midge
Member

Re: Onc Visit - Ovaries to go

Hiya
Sarah. I am really sorry that you are having such a tough time. I dont know if you have looked in the younger women section lately but tors has set up a younger breast cancer network (uk) facebook page. It has over 100 members now and is a really good private place to chat about these decisions and situations. The women are at all different stages. If you do a search for that name you should get it. The chat section is completely private so you need to send a message to the grp to be added. I know fb is not everyones cup of tea but if you feel like it you would be v welcome.

Debxxx

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Re: Onc Visit - Ovaries to go

Thank you to everyone who took the time to reply.
My libido disapeared since taking the tamoxifen and has since resulted in the break up of my 10 year relationship so Im disappointed to hear genjill that your ovary removal has mean the loss of yours also. My mum has IBS which she is convinced is a result of her historectory 15 years ago. I have mild symtoms but nothing serious and fear that the operation would agrivate it. She also has osteoperosis.
All in all im scared stiff but berrying my head in the sand at the moment. Ive got til my next appointment which wont be til next year to get my head around everything.
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Re: Onc Visit - Ovaries to go

Hi
I had my ovaries and Fallopian tubes removed nearly 2 weeks ago and recovery so far has been good. It was keyhole surgery so 3 small incisions which are healing nicely. However, the gas they pump into you does give you the feeling of trapped wind and stomach aches, this thankfully is gradually going. I have also noticed my menopause symptoms have worsened - hot flushes/sleepless nights (I am 40 but having been on Zoladex for 5 months am already going through an induced menopause).
However for me I feel this was the right course of action to take and I just wait for the results of the histology with my fingers crossed that there are no more nasty surprises awaiting me!!
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Re: Onc Visit - Ovaries to go

I was dx at 41 with er/pr pos and her 2 pos, my periods stopped with 3rd chemo.
As a nurse, i was on a study day when there was a talk on benefits re oophrectomy post er/pr pos bc, i asked a colleague to do the op. i didnt discuss with oncologist because the way it happened it suited me to be off work in the summer holidays. i also hace ulcerative coliitis and crohns disease, but generally they dont bother me too much.....
hindsight is a wonderful thing..oophrectomy ws very complicated due to my bowel problems, i think my colleague/friend regretted it!! It took me a long time to get over it, and i expected to be back to work in a short time
but the main regret i have is that i have totally lost my libido, my partner is patient, but 4 years on it is causing us problems..

Just something else to consider as i feel i rushed into it, most of the normal population who have oophrectomy can can HRT and other preparations...

Jill
zibzab
Member

Re: Onc Visit - Ovaries to go

My onkologist explained me that the best to take out ovaries for Er+ and Pr + breast cancer. The reasson is because tamoxifen is working only to Er. This does not reduce the attraction of progesterone to the cells. Of course you can use the Zoladex, but considering that it does not stop immediately ovaries, in theory, it is more likely that the cancer would recur. Practical researches does not show it with certainty. But if periods did not stop definitely - the best to take out. That is the best against cancer, but we have got pleanty different reasons to leave them also. Sometimes is not very easy to find balanss and make decision. That's what my doctor said. Your doctor may recommend, but the decision to make ourselves anyway. I did not remove my ovaries.

ChristineP
Member

Re: Onc Visit - Ovaries to go

Hi happy,
just wanted to add that following my oopherectomy i have had to take daily vitamin d3 and calcium (combined) pills twice a day. i am now taking vitamin d3 only, as i am trying to get the calcium from the food in my diet. The additional d3 and calcium is needed because lack of oestrogen makes me prone to developing osteosperosis. Vitamin d3 helps your bones absorb the calcium in your diet, and keep bones healthy. Your body makes it when exposed to sunlight, but I was told I needed extra just to make sure. I also had to have a bone density scan shortly after the surgery, to check the strength and density of my bones. And then I will have one of these scans every two years, to keep an eye on my bone strength. This scan is different from the bone scans that are sometimes done to check bones are not affected by cancer.
So when asking your BCN about the issue of having your ovaries removed, you may also want to ask her about implications for your bone strength, osteosperosis, and whether you will need vitamin d, calcium, and bone scans, or anything else. I think that the breast cancer care helpline people should also be able to help you with this.
hope this helps,
christine

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Re: Onc Visit - Ovaries to go

TTM - I have periods but they are very erratic.

Shirl - Hope it goes well for you. If you dont mind sharing your experiences Id be very greatful xx
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Re: Onc Visit - Ovaries to go

Hi
Hi am 40 years old and got diagnosed with BC stage 2 just before my 40th birthday. (March 2012) I have one cousin who had ovarian cancer at 40. I received 4 weeks of radiotherapy and I am currently taking Tamoxifen and have the Zoladex impant monthly (which turned off my ovaries and put me straight into the menopause!). I am going into hospital next Wednesday to have my ovaries and Fallopian tubes removed - this is as a precautionary measure so hopefully when this is over I can return to some sort of normality!!
Shirley
tommyticklemou
Member

Re: Onc Visit - Ovaries to go

hi happy73, thanks for that. i have turned 40 couple of months ago so just a bit older than you. i have just been on tamoxifen since march and zoladex since early may. did your chemo stop your periods, have they started again, maybe this is something to do with why they are thinking about removing ovaries. its so confusing why some are recommended to and others not. let us know how go get on if your have further talk with your breast care nurse/doctors.
ttm xxx

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Re: Onc Visit - Ovaries to go

TTM Im in South Wales so have my treatment at Velindre Hospital Cardiff
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Re: Onc Visit - Ovaries to go

Thank you for all your comments it really does help. Im trying to get in touch with my nurse to help with some answers.
Any comments as you why you had your ovaries removed and what impact it has had would help

Midge - lovely to hear from you, hope you are well xx

Sarah x
ChristineP
Member

Re: Onc Visit - Ovaries to go

Hi happy,
do you have a BCN you can call or contact, and ask more details about why the oncologist suggests to remove your ovaries? I am sure they will be happy to help you.

i had my ovaries taken out too, my story is different from yours, but perhaps it gives you some more info on this. i hope that helps...
this is why they told me that they might at some stage remove my ovaries:
I was diagnosed BC autumn 2010, and had chemo, mx and rads. Then on tamoxifen. My periods had stopped when i started chemo, and never came back. My oncologist said from the start that if at any stage my periods would come back, then they would zap or remove my ovaries, so I could then go on an aromatise inhibitor instead. I could not have this ai at the time, as i was not post menopausal (Despite not having periods). I never thought any more of it, but it calmed me to know that if anything else happened there would be more options.
In your case, perhaps your oncologist was thinking you could move on to an aromatise inhibitor too, rather than take tamoxifen?
And in my case then they did remove them, but the scenario for me was different than expected:
I was then diagnosed with a second primary BC within a year of finishing treatment for the first one. I was on tamoxifen after the first lot of treatment. My second primary BC was er+ too, so then they decided to take my ovaries out. Mine were taken out at the same time as mastectomy, but the ovaries part was keyhole surgery. After the surgery I had no pains from that part of the surgery. I was 46 at the time. now I have no ovaries, they can be certain that I am postmenopausal, and I can now take letrozole, which i am now taking. So far I am NED 🙂

As far as surgery for the removal of ovaries (oopherectomy is the official term) - I understand that keyhole surgery is used often for this, which is less invasive, and leave less scars. They can't always do it - worth asking what they do in your hospital.
I hope this helps you a bit...
christine

tommyticklemou
Member

Re: Onc Visit - Ovaries to go

midge/happy 73 - can i ask what hospitals you are both under,? - just wondered as midge says it does seem to vary the opinion on removal of ovaries. i am currently on zoladex and wondering what i will be recommended further down line. i have briefly mentioned it to nurse who administers the zoladex and she said down to individual dx and risk, but also patient choice.
TTM xxx

Midge
Member

Re: Onc Visit - Ovaries to go

Hi Sarah
Sorry you find yourself back here. We went through treatment at the same time in 2010. My family has a genetic link- not brca, to ovarian ca, so I had a hysterectomy in May- iwas 40 at the time. When I was discussing it all with my BCN, she said it was not uncommon for women with er+ ca to be offered ovary removal a few years down the line. I don't really understand why some are and some aren't though.
Anyway, just wanted to say hi and sorry and hope you get some answers to help you decide.
If you have any questions about the op ( although I opted for the full hysterectomy in the end) just ask. I am on the forum occasionally at the mo cos I have just had an ld recon.
Take care
Debx

dib
Member

Re: Onc Visit - Ovaries to go

Hi,Do you carry the brca1 or 2 gene? I had my ovaries removed and my daughter will have hers removed when she is 35 as we both tested positive for brca1 which means your risk of developing ovarian cancer is 50%. If you havent been tested and found to be positive then im not sure but one of our wonderful ladies will soon come on here and enlighten us,
best wishes,Di.x

tracyld
Member

Re: Onc Visit - Ovaries to go

Let us know what happens happy, hope you are able to get some answers soon. maybe you could give your Onc a ring and discuss it all further.
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Re: Onc Visit - Ovaries to go

Thank you both for taking the time to reply

Sarah x
Sam_BCC
Member

Re: Onc Visit - Ovaries to go

Hi happy73

I am sorry to read you're having a tough time at the moment. Can I suggest you give the BCC helpline a call where you can talk your questions through with someone who will be able to offer you lots of emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator

tracyld
Member

Re: Onc Visit - Ovaries to go

Hi Happy73, I dont know the answer to this one , but hope that someone will come along and help you soon. I know you must be devastated to face more surgery but one of my best friends had a hysterectomy last year and she coped really well. It was for a huge cyst the size of a melon but thankfully not cancer. Your oncologist must be making doubly sure that you will be cancer free. I hope that a younger lady comes along soon. I am 48 and the chemo sent me into a chemically induced menopause , so my ovaries are no longer working which is why your surgeon is taking them out as a precaution. I too take tamoxifen and hate that drug with a passion as it causes me so many side affects.
Hang on in there. You can do it. take good care of yourself. Love Tracyx
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Onc Visit - Ovaries to go

Im 38 diagnosed March 2010 6x FECT, rads & herceptin. Tamoxofen 2 years
I had an Oncology appointment earlier today and after talking about my general well being. I broached the subject of life without the dreaded pils only to be told i'll be taking something for 10 years post treatment . He then went on to say that he'll be looking to remove my overies possibly next year.
Im completely in shock and probably missed a whole chunk of the conversation but I not exactly sure why i need my overies removed and cant find much information about it. Can any one help point me in the right direction or been in a similar situation