Surgeries

Hi WitchImage 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 sorry to read that you've recently discovered you need to have preventive surgery and I can fully understand why you wouldn't be looking forward to having surgery. You haven't said what type of surgery you'll be having but I had a lumpectomy for early-stage breast cancer earlier in the year and was well looked after by all the hospital staff.

It would be great if you could pop something about your diagnosis and 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.

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Hello - I had no idea I could even add a biography or anything, so I've done that now! Thank you. Essentially though I'm most likely having my tubes out, a double mastectomy, and then the ovaries down the line sometime, so a few different experiences to "look forward" to! 

I'm so pleased to hear you were looked after when you had your lumpectomy. It must have been a horribly worrying time and to know that you were taken care of throughout is lovely x

That sounds like a lot of surgery ahead of you WitchImage. You might want to join and post in the breast cancer group so that you can ask for experiences of having a double mastectomy and then perhaps also the ovarian cancer group as the members there can share their experiences with having their ovaries removed.

If this is something that you'd like to do clicking on the links I've created will take you straight to the groups where you can then join and post in the same way as you did here. You can also join in with existing conversations by clicking on 'reply'.

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Hi, I am BRACA 2 and remember the phone call so well with the news.  -I was 65 years old but had always thought that there was a genetic link to my grandmother's death and my father saying no one in his family lived to a great age. My sister died of ovarian cancer and my other sister had breast cancer. It was the latter who pushed for genetic counselling. I have learnt to take a step at a time. Due to my age, I had my ovaries removed but opted for annual surveillance on my breasts. In March this year I was diagnosed with TNBC and have had a double mastectomy with breast reconstruction and now on chemotherapy.  Given your age your decisions and journey will be different. What has helped for me is that each decision was right at the time, and I don't live with the regrets. Take care

Hi I'm brac1 I found out when I was 30. I am now 32. My mum passed of breast cancer when she was 37. And when I was 7. I remember when I had the phone call and to be honest I was not in shock. But it was like a rollercoaster for me. There are just so many emotions in all of this. I can not wait for my preventive surgery, I have always had cancer on my mind. I just want to live my life without the worry!  But like I always say knowledge is power 

Hi Witchimage,

i have the BRCA1 gene and am 8 days post double mastectomy with tug flap (thigh flap) reconstruction and lymph node removal in the left axilla. My cancer had spread to my armpit before I found it despite being very breast aware. 
My top tips whilst  waiting would be:

Think and talk to the nurses, counsellors etc about what kind of operation you will choose. I found everyone had an opinion but it’s me that has to live with the decision and so talking to people who don’t know me helped, I could be fully honest. Also those first few days after the op when things were a little sore I could remind myself that this is what I wanted and chose so it’s worth the pain and discomfort. No one else saying that to you will make you feel better just yourself.

im in a different position as I had cancer (I has chemo first and then my op) 

I am fit and healthy and I’ve really benefitted from having strong tummy muscles as having my legs operated on as well as my breasts and one arm losing nodes meant it was hard to get out of bed for a few days. If you go for a construction using your own body tissue I would just get your head around the fact that you’ll need a lot of help for at least a few days and then it will pass more quickly. so try to be as healthy as you can, even if just walking a bit more etc. 

Make sure you stay hydrated and ask for a drink as soon as you’re able to after the op. I felt so much better once I was hydrated and I was catheterised so it was easy to drink enough those first few days.

i was so lucky. My care by the nurses and caters and catering staff was amazing. I’m a happy person and it was nice to know I could my bit as they do there’s. A good tip I read pre op was fo get used to deep breathing, hold for 3 seconds and then release. It helps you stay calm as well as clearing your lungs of any effects of the op quickly.

I’m 47, my daughter is 14 so may be in your position one day. I chose this reconstruction as I wanted fo show her that life could be normal again post mastectomy. I have fo say my new boobs are amazing, despite being bruised and not feeling fully normal yet (I’m only 8 days post surgery) I think because I’ve kept my nipples that has made it a bit easier for me as the look isn’t so different. Everyone’s decision and risk factored related fo keeping nipples is different though. For me I felt it was the right thing. The tattoo option and the prosetheic nipple option did also look amazing! 

This was my first operation and I can honestly say the pain from the mastectomy wasn’t as bad as I’d feared. Mind you I took all pain relief offered as this enable me to get up on my feet quicker and therefore feeing a bit more independent and normal quicker. 

aorry that’s a bit rambling but I would say read everything you can abkut what you can do to help yourself pre and post op, communicate well with your team, don’t plan for loads of visitors the first few days. Just let yourself rest and heal! 
good luck with it all. I hope you get your operation soon Xx 

Hi Ricki, thank you so much for responding and sorry I've taken forever to respond to your response! I'm sorry to hear about your sister but pleased that your other sister was able to talk about this with you and help you to come to the decision to test. I think the 'right at the time' way of looking at your decisions is a very important thing to keep hold of, we change so much throughout our lives. I wish you well in your treatment and recovery and thank you for sharing!

Hi Girlpowerx, your story and attitudes remind me of my own very much! Knowing these things are possible from such a young age does change the way you look at the world I think. I wasn't shocked to find out I was positive either, in fact my decision to finally get the test (after putting it off for about ten years!) came because I felt sure I would test positive, and I was right of course! Couldn't have known, but I think just expecting the worst helped - a negative test would have been a bonus at that point. But yes - lots and lots of emotions. They fluctuate a lot too so I can hardly keep track, but at the moment I'm kind of looking forward to my surgeries, too. Thank you for sharing!

Hi RachieRonks, thank you for such a comprehensive response - I probably won't be able to do your efforts justice with my reply, but first of all I'd like to say I hope your recovery is continuing to go well, and you've given me advice about things I would never have imagined I needed advice on! I'm meeting my nurses again this week and I have lots of food for thought to go into the appointment with.

I definitely feel confident in my own choices, and to be fair the vast majority of people I've spoken to have been very much the same in saying it's my choice and I have to do what's right for me. I did have one friend who reacted very bizarrely, but I don't think she really understood the concept of preventative surgery ... haha. For the most part I've been supported and not questioned much. I've had one meeting with the surgeon and breast nurse and it does feel good to speak to strangers, you're right! They understand the real risk and the consequences of these decisions and such, which is what you want sometimes.

After reading your comments initially, I started an abs program. I'm fit and active but don't do much targeted strength training, so that's become a priority! I wasn't sure I would be able to use my tissue but my surgeon is very keen, so I'm leaning towards that now. I have enough on my tummy for maybe slightly smaller ones than what I have now, which suits me just fine. 

My worst fear, perhaps stupidly, is nausea, so I'll be demanding hydration as soon as I can speak! And I'm glad you had a lovely team around you, everyone I've met so far has been lush so I'm confident in that respect. The hospital who'll be doing this has strong links to genetics so they understand my specific worries etc. but just in general, I feel very looked after and confident to give myself over to their care! I'll write the deep breathing down, too. That sounds useful.

I'm not going to keep my nipples but mostly because I love tattoos and just see this op as a chance for more canvas space, so to speak! It's sort of getting me through it - one day, when I'm healed, I'll be able to choose something cool for the space and not feel as much pain as other places! But I've seen so many excellent nipples that I do sometimes wonder, haha. The talent involved in recreating them is astounding.

I will also be on as much pain relief as they're willing to give me, I think! I'm not a good patient, I like to be moving and doing things all the time so that sounds like a good idea.

That wasn't rambling at all, it was extremely helpful and even just reading about people having operations like it isn't the end of the world makes me feel a lot more confident. You must be fantastic with your daughter and I know if she ever has to think about these things she'll be so well supported. Thank you so much, and again look after yourself (hopefully there are other people looking after you too, though!) xxx 

Hi RachieRonks ,

I have found this post and your reply really useful. I am due to meet my surgeon next month to discuss options for mastectomy which can be done once the chemo has been completed. As silly as it sounds I am mostly worried about my job. I have managed to stay working 3 days a week on chemo and I am wondering how you have found the recovery? I read that the recovery time was 2 months but I am not sure how true this is. I know everyone is different but I am just wondering how yours has been as I am also considering the thigh flap reconstruction.

I hope you are recovering well.

Best wishes,

Kelly