Waiting times BSO

Hi Molly24 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi Molly 

I am not sure whether it’s different in different parts of the UK. I live in Oxfordshire.
I had a very short waiting time- I discovered I had Braca 2 in November. Had a consultation in January and the surgery in February. 

Best of luck 

Hello - many thanks for the response. That all sounds very quick! Out of interest - did they offer you the option of Vnotes as a surgical procedure? Also how are you managing your menopause symptoms? I was advised not to take HRT any more after finding out I had BRCA2. 

Hi, I am 52 so they didn't offer HRT, although I was still having regular periods up until this point. I asked my GP to refer me to the menopause clinic, my appointment is next month. I have had a bone density test and bloods tested as I was concerned about bone and cardiac health, waiting on results. 

I am having a few hot flushes which is new to me, and poor sleep. I am trying this Sleepio app that my GP has subscribed me to, only on day 2.

I know everyone is different and I was fortunate enough to have discovered I had BRCA2 in my 50s

Would recommend you ask to be referred to the menopause clinic.

No they didn't offer Vnotes.

Good Luck 

I’m in Oxfordshire too. Were you referred to GW or JR? I’ve got my ultrasound booked for 2 weeks time. I was hoping to be seen by the menopause clinic first so that I can be started on HRT right away. X

I was at the Churchill for the surgery.

I had a phone call appointment with a Doctor from the Menopause Clinic, she was based in Bicester, this was 4 weeks after my surgery. In truth it took about that long for my menopause symptoms to kick in- it was gradual rather than immediate, post surgery.

She would not prescribe me any HRT because of BRACA, but you may be advised differently if you are younger. It definitely was useful to speak to her. 

All the best 

Thank you. I’ve actually asked to be referred to the Protector Study and have my surgery in two stages. Fallopian tubes first and ovaries once I reach menopause naturally. I am interested to hear what the Menopause clinic say about HRT/alternatives. I’m still waiting on an appointment for that. Got my initial surgical appointment with the breast team on Thursday. I’m in Wantage (well Grove) so GWH isn’t too far from me really, I’m just familiar with the Oxford hospitals. 

Hi - how are you getting on? Are you experiencing many symptoms? Would you recommend getting a bone density test? Has it led to any further treatment for you? I did get seen by the menopause clinic. I tried Venlafaxine for hot flushes but I stopped after about six weeks due to side effects. I’m managing the best I can with no treatment at the moment

Hi - I just wanted to share my experience of HRT post BSO. As I wasn’t taking HRT at the time of my surgery (I had been on/off with it for a few months prior) there was no mention of what to do post op. I lasted for about two weeks after the surgery but the insomnia/flushes were too much so I restarted HRT. It was only when I saw my GP for a review that I found out that I shouldn’t be taking HRT as I was BRCA2 positive. That was news to me! In hindsight that was something that should possibly have been covered in my genetic counselling after I got my test result. I guess it’s hard to join all the dots. Anyway there are lots of non hormonal treatments you can try. I’m guessing you are much younger than me (51) so I think having just tubes removed now is a sensible move. Can I ask are you considering breast surgery? 

Hi- Yes I am having hot flushes. Insomnia was a thing before surgery. I seem to be managing these symptoms OK at the moment. The worst symptoms are the gynae ones that I wasn't prepared for. I have been prescribed vaginal oestrogen which is allowed for us. However I joined an Online BRACA group chat yesterday and plenty of women have been given HRT who have BRACA

The bone density test hasn't led to any further treatment- I discovered I have osteopenia, the precursor to osteoporosis- I was advised to have daily Vitamin D and increase my calcium intake in my diet.

I went to see the consultant re breast surgery yesterday- this is the next step for me.

Are you considering this option? Or had it already?

Have you had the oophrectomy now?

Sounds like we are similar in age-(52)