Preventative surgery waiting times

Hi Rox9507 and a warm welcome to the online community

I'm glad to hear that your treatment is going well. I don't have the experience you need, as I had a different type of cancer, but I noticed that your post had gone unanswered. By replying to you it will bump your post back to the top of the page where hopefully someone with the right experience will see it and reply.

If you don't get any responses you could post your question in ask a nurse and one of the specialist cancer nurses will aim to respond within 2 working days.

When you have a moment it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit 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.

Wishing you all the best

x

Dear Rox9507

I have undergone a lumpectomy and am part way through chemo following a diagnosis of triple negative breast cancer in May this year. I've read your post and like you have been tested positive for the BRCA1 gene but only after  I chased for a test. My dad had been tested negative for the BRCA 1 & 2 gene mutations five years ago. 

I hope you don't mind me asking if you have had any news with regard to your preventative treatment? I have been advised to keep my consultant, breast care nurse and genetic counsellor all in the loop and I wonder if this was the approach you took. I don't really know what the consultant will advise but from what I have read it does seem a double mastectomy is something to consider with as you mention a possible hysterectomy at some point in the future.

You sounded calm and rational in your post which has given me some hope is navigating another potential journey of further treatment which I had hoped to avoid.

I would really appreciate your thoughts but know  that it is some time since your original post.

Sazzle50

Hello Sazzle50 

Firstly, good luck on your journey and bavigating tge abundance if information. 

I'm no further down the road of actual preventative surgery I'm afraid. I see gynaecology next week for the first time and to be honest I'm stressed and concerned at how long it has taken. I'm 52 and apparently high risk for ovarian cancer.

Like you, the breast care team have told me to keep in touch. They have looked after me and I believe will guide me through what's to come. I'm hoping for the double mastectomy and reconstruction early next year. What i have realised is that i have to drive this. Having cancer you are taken care of, but this part doesn't seem to have the same input.

I'm calm and ration6some of the time, but often I'm stressed and emotional and struggle to hold it together but have accepted that's ok.

Look after yourself, talk, question and repeat. Stay strong and go with what works for you. I hope you have support (I have an amazing husband)

I hope this was of some help despite no specific timelines offered (I just don't have them yet)

Best wishes roxanna 

Hi Roxanna

Thanks so much for coming back to me so quickly, I empathise completely with the stress you are feeling and hopefully we can give each other support through our wait.  When I look back since being diagnosed it was the waiting that seemed to make me more anxious than anything but once I had gone through the next step I realised why that waiting, at times, was needed, mostly for my own mental well being and to give time to my body to recover. I do know though that these waiting times can differ between different areas which can be so hard but Torbay seems good in that respect.

You are right that you have to drive this though and I felt quite upset when I felt my breastcare team seemed to be ignoring my genealogy and family history.  I did sit myself down at home and reflect on how I could make my anger go away and be rational about this process so rung the genetic counsellor myself and I am so glad I did.  Really, I suppose we have to come to the realisation that, yes the medical profession clearly are the experts, though we too have intuition and gut feelings which we are allowed to push with reasonable force in order to be heard.

My husband and kids are managing though when I received the BRCA1 news today I felt that despair creep back in so rang a Macmillan Nurse, that was another good decision.

I hope your first appointment with gynaecology next week helps you feel you have some direction in your treatment and that you can make decisions to safeguard yourself.  

We are doing the right thing and with research developing all the time are giving ourselves the best chance ever of living the life we deserve so stay strong and if you need support please do get in touch.

Sarahx