Mastectomy

Hi Amanda,

How lovely to have such a thoughtful daughter. I’m in a  similar position to your Mum, waiting on genetic test results, over 3 weeks since blood test and saying maybe another 2 weeks. I will also either be having single or double mastectomy maybe in 2 weeks time. 

It is really hard, and from my own experience it’s all the waiting that is the worst. I think the important thing for me is to keep “jumping forward” and look forward to when life is a bit more normal.

I hope your Mum gets some news soon, and I’m sure she appreciates all you are doing for her.

Best wishes,

Karen 

Both Macmillan and Maggie's have information regarding supporting a family member, you may want to look at that and see if anything they suggest would work for you. Also, there is a forum here dedicated to family and friends and I am sure that would be some good advice there too.

Overall, I'd say take your cue from her, and don't pressurise her. 

In the early days after my diagnosis I absolutely hated anyone hovering over me with worry-filled eyes and a sympathetic expression, whether it was a family member or a professional. It wasn't a question of bottling up anything, it was more that I had no interest in discussing my cancer with anyone other than my partner, I did not need anyone else's support and did not want anyone else to interfere.

What I did need was some practical help. Anyone who was willing to offer that, great. Anyone who wanted a chat about my business even after they were told not to, was met with an unpleasant response. 

I may not be typical, other people may welcome other types of support, so again it is very much down to the individual person. If she doesn't want to talk, I wouldn't push her. Not talking does not necessarily mean bottling up anything, and even if she is, she may need to have that talk with someone other than her own daughter.

A genetic mutation with the mother would mean 50:50 chance for any offspring to carry that mutation. If her genetic test shows she has the mutation, you may want to consider doing the test too.

Hi Karen

Thank you for replying, my mum got a call yesterday to she is low risk which is brilliant on one hand but on the other she really wants a double mastectomy so we now have an appointment with her surgeon next week to discuss options, so fingers crossed she can get the surgery she wants.

I have ordered her drain bags from a company called drain dollys and also pillows from a charity called pillowpals and she was over the moon when i showed her them so hopefully they make things a little easier for her

i hope you get your results soon Karen and all the best for your surgery 

Hi Amanda,

Thanks for your reply. I’m pleased your Mum got her results, and it’s good news for you too if she’s not a carrier.

I hope you have a good meeting with her Surgeon. I’ve found mine really good in discussing all the options.  Hopefully she can get the surgery she wants and have a quick recovery.

I am still all over the place as to what to do, but can’t move forward until results.

Best wishes, Karen 

Hi Amanda - you sound like an amazing daughter :). I had a double mastectomy five weeks ago. I was in hospital for five days and, while it was a very tough experience, I am pretty much back to normal now. You've had great advice already on your thread. I would just add: nice, soft pyjamas that button up down the front, and soft non-wired bras that button up at the front. I can send you the brands I have found most comfortable if you like. The M&S post-surgery bras weren't great for me. Encourage her to do the exercises as soon as possible and be wary of side effects from the drugs - I really really struggled with constipation after surgery. It doesn't sound bad but it was!

I have a three year old son and he kept me going. I'm sure you'll do the same for your mum x.

Also, I chose to have a bilateral mastectomy despite having cancer on one side only. I wanted to reduce my risk of it coming back as much as possible. It's your mum's choice if she wants it, so don't let the surgeon talk her out of it. She may need to undertake a psychological assessment to show she understands the implications of a double vs single (I did this). 

Zanna thank you for getting back to me, yes I did mention to her yesterday about button up the front pyjamas and i have been looking at all the different option M&S but I guess really until we have seen the surgeon we wont know what to get in terms of a bra but will mention the post surgery bra to her, if you wouldn't mind letting me know which brand you found comfortable that would be brilliant.

I really hope the meeting next week goes well and they agree to do the double as that's what she wants and i worry if they don't then she will be living in fear of it coming back, more so because she had kidney cancer 2 years previous and now breast cancer I know the 2 are unrelated but doesn't help her state of mind etc 

Hi Amanda - the brand I have found the best is called Royce - style 1010. The link is below. They also look less awful than some of the others. I only needed front fastening for three weeks, I'm fine with back fastening now and that means there's much more choice of non-wired bras. 

Regarding them agreeing to the double: I do think this is her choice and they have to agree to it. I know some places don't want to do two if they don't think it's necessary, but my surgeon (at St Georges in Tooting) was clear that it was up to me and that the surgeons should not be paternalistic. Like I said in a previous message, I had to go through a psychological assessment to demonstrate I was aware of the extra risks of doing this, but that wasn't a hardship. 

www.johnlewis.com/.../p639517

I'd make sure she has a supply of button fronted looser fitting tops/blouses and PJ's. And also make sure they are easily accessible so she doesn't have to reach up to a rail in her cupboard to get them. The main thing though was the heart shaped pillows that double up as seatbelt bumpers and drain bags. A V-cushion for when you have to lie on your back in bed for a while and can help make you more comfy in a chair. It's not essential but lovely all the same. I hope your mum's surgery goes really well for her x

Oh and easy on/off trousers as buttons and zips are a pain when you are feeling a little delicate and wriggling in to tighter fit trousers just won't happen for a few weeks! But wouldn't outlay on loads of new bits as its all a very temporary situation.