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Preparing for a mastectomy- advice please

19 REPLIES 19
Community Champion

Re: Preparing for a mastectomy- advice please

Hope213 - thanks for coming back to update us. That’s great that you are feeling so positive and also that you have good arm movement. Best wishes from me too for your continued recovery. Keep resting. Evie xx

Member

Re: Preparing for a mastectomy- advice please

Great to hear all went well and you're feeling positive. Sending best wishes for continued healing and good results.

 

Hugs

Susie x

Member

Re: Preparing for a mastectomy- advice please

Hello ladies,

Thank you so much for all your support. I am now 9 days post surgery! I spent 2 nights in hospital. The drain dollies bag as been invaluable as I still have my drain in - although it is going to be removed later this afternoon. Sleeping with the drain has been tricky. My pain hasn’t been too bad and luckily I seem to have quite a good range of movement in my arms already. I didn’t have any dressings on after my surgery which did surprise me. The hospital fitted me with a post surgery bra before I came home. The Consultant has told me that one of the tumours appeared to be attached to my lymph nodes upon removal. I won’t know the full extent of this and whether the cancer is in my lymph nodes for another couple of weeks (has 4 removed in surgery). I’m still very tired and doing the slightest thing tires me out. My front fastening pjs have been invaluable too. After the surgery I did have a sore throat - drinking hot water, lemon and manuka honey has really helped. I’m feeling positive about the surgery and all your messages have really helped. Thank you xxxxx

Member

Re: Preparing for a mastectomy- advice please

Dear Hope, thinking of you this morning, lots of love and a big hug. Hope all goes well keep,us posted as soon as you are feeling better.

love Tili X

 

Member

Re: Preparing for a mastectomy- advice please

Thank you so much Peggy cat, I shall do. Eeeeek! I'm thinking positively.

X

Member

Re: Preparing for a mastectomy- advice please

Noddy,

Ah wow, that is amazing to hear! Thank you. And now the day for me has finally arrived.

X

Community Champion

Re: Preparing for a mastectomy- advice please

Little Noddy, I love your heartwarming response. You sound so confident and happy. So lovely for other people to hear about your positive experience. I too feel very much the same but am often reluctant to go on about it in case I come across as a know it all who has come through the other side. I am so grateful and happy and I do think it's important to highlight that it is possible to be so after a diagnosis as you have done. 

Hope213, you will be well looked after tomorrow. Keep us posted about your recovery. ♥️

Member

Re: Preparing for a mastectomy- advice please

Hello Hope I too started with one lump then two...eventually six in one breast so I remember the disappointment of having a mastectomy instead of a lumpectomy. However, I am now really glad i had the mastectomy. My reconstruction is not perfect but pretty good. I wouldn't be embarrassed to be naked with a new partner if that ever happened. Before the mastectomy I thought I could never consider that again. Now it would make almost no difference. I thought I was recovering well in the early days but now realise it has taken a full year to get back to my new normal.

I am 61 and last week was up on my roof fixing it and next week I will start re roofing properly.

I have never in my life done this before but lack of funds mean if I want it done I have to do it myself. Having a mastectomy is not even relevent. So I hope in a year you will also do everything and more that you have done so far  and not give breast cancer very much thought. There is truly lovely sunshine at the end of this tunnel for most of us. You just have to get through this scary bit first. All the best Noddy

Community Champion

Re: Preparing for a mastectomy- advice please

Hope213 - I replied on another part of this thread, but hadn’t seen your surgery date. I too would like to wish you all the very best for Saturday. I am sure it won’t be too long before you are back at yoga and Pilates, there will be some exercises you will be able to do and work up to others. Do ask your BCN/surgeon for advice. Evie xx

Community Champion

Re: Preparing for a mastectomy- advice please

Hi Hope213 - sorry for the delay in replying to you, but I’m finding this new layout confusing! I had a node clearance at the same time as mastectomy and implant, so was in a bit longer because of that operation, but I do remember my drains came out before I left hospital so maybe yours won’t be in so long. Regarding recovery, I would agree with you that day by day, week by week you feel better, it seems to start slowly but suddenly you realise that you are doing normal things again. I could drive again after 3 weeks. 

It’s good that you are getting prepared - I used my front opening PJs for a long time as they were so much easier, so you will get good use out of them!

It’s not surprising you feel like you describe, all of a sudden your world has been turned upside down and you feel like you have just been hit by a truck, but you sound positive in your last sentence. I think the best advice I received was to take one day at a time, or even one hour at a time, and not think too far ahead. One of my favourite words of wisdom I read in a cancer book is “remember fears are not facts”, so try to deal in facts and what you know rather than googling or imagining or guessing. Of course it’s easier to write than actually do, but something to try if or when things feel tough. Also we are all here anytime to chat or listen. Please ask any questions, no question is too small. Hugs, Evie xx

Member

Re: Preparing for a mastectomy- advice please

Aw, good luck for Saturday, Hope. I'm sure you'll feel better in yourself once it's done - I know I did. Waiting for the surgery was the worst bit for me.

 

I was told I'd only need one night in hospital but ended up staying for two. I went in at 9am and wasn't back on the ward until nearly 4pm. I was still so groggy the next day and didn't feel confident enough to leave the security blanket of the hospital and the nursing team. Was good to go after two nights though.

 

Good news that you do pilates and yoga. I found that I used my stomach muscles loads post-op as I needed them to get myself up and out of bed  -  couldn't bear to put any pressure on my arms and shoulders for ages!

 

Hope it all goes well, sending big hugs x

Member

Re: Preparing for a mastectomy- advice please

Hello Pidge,

Thank you so much for your advice, it’s really helpful. I’m sorry to hear you have had a delayed reconstruction due to Covid. I really hope conversations regarding this happen soon for you. It’s great that you are now starting to enjoy life again. Yes I’m so pleased I’ve found this forum, the advice has been invaluable.

Many thanks, take care x

 

Member

Re: Preparing for a mastectomy- advice please

Hi Susie,

Thank you so much for sharing your experience with me. My surgery is on Saturday and your reply has really helped me understand what I’m about to go through, lots of similarities. That’s great to hear you are back to normal in your daily life. I’m a Pilates and yoga fan and I know I will miss time away from this. I wish you all the best.

take care x

Member

Re: Preparing for a mastectomy- advice please

Hi Hope,

Welcome to the forum and hope you are keeping well as best as you can.

I was diagnosed with BC in May. Very similar situation to yours, I initially felt a lump, scans showed another tiny cancerous lump in the same breast, the left breast was fine. As a result, my consultation decided Mastectomy was the way to go. I was 44 when I was diagnosed.

I had an operation in June, was in the hospital for 7-days (it was private). Due to covid, I was not offered immediate reconstruction. So it's still delayed and conversations will start happening soon for this. I have decided to stay flat on the one side and move ahead with my prosthesis and start enjoying life again. I'm glad the cancer is gone, all done by the end of June.

Ops Recovery was about 6 weeks, but getting back to normal activities took a long time for me, I had to learn to just flow with how I felt daily and be kind to myself. Give yourself time to relax and follow your body signals. Some days, you want to just lie in and watch films, read, or even snooze. Other days, you have lots of energy and can move about a lot. However, the arm exercises and gentle daily walks in the garden, down the road helped a lot. My drain was in situ for the week. 

lots of information to take in, Its great you found this forum early and you can get useful information from the lovely ladies on here. 

I hope the above helped a bit and wish you well. 

xx

 

Member

Re: Preparing for a mastectomy- advice please

Thank you so much for all your useful advice. I have just ordered a bag from drain dollies as I already know I will have a drain in for 12 days. I have also ordered more button up fastening pyjamas as I only had 1 set! The consultant has told me my recovery will be 6 weeks and I should expect to stay in hospital for at 1 night. Was this the same as yourself? I’m guessing you gradually start to feel better as each week goes by. I’ve had a GA before for an emergency c-section and my memories of it are not great... but thanks for the advice. It’s really hard to know what the expect, my feelings are all over the place at the moment as everything (thankfully) has happened very fast. I’m hoping I will feel better after the operation about things and I’m trying to remain positive for whatever follows next.

Many many thanks xx

Member

Re: Preparing for a mastectomy- advice please

Hello Hope

I had a mastectomy with immediate implant reconstruction at the end of July. I was lucky that the Letrozole which I'd been taking for 4 months, had worked like magic and reduced the tumour so I could have a nipple and skin sparing operation - so only one wound site. I was also "lucky" that I was diagnosed and treated during Lockdown so my local hospital (which is brilliant) was pushing all operations to a private clinic, where I was the only patient on the ward!

I was in surgery for 4 hours and in recovery for 3 hours. I was very groggy for the next 24 hours and the nurses had to help me onto a commode as I couldn't get to the toilet on my own but that was the anaesthetic and I was independently mobile by day 2. The effects of the anaesthetic - tired, a bit out of it - lasted a good couple of weeks but I'm a bit of a sleepyhead anyway and I'm sure everyone's different.

The pain wasn't too bad at all, although I do have a high pain threshold. Apparently they packed the wound with lots of antibiotics and painkillers during surgery, then the nurses gave me painkillers every 4 hours - paracetamol and codeine as well as antibiotics. I could have asked for more but didn't need to. I was given a supply to bring home but managed on the paracetamol, gradually reducing them. After 4 weeks, I wasn't taking any at all.

The biggest challenge for me was stiffness in my arm and shoulder and the drain which stayed in for at least a week. I also had an alarm system on a plastic tube, going into my dressing which was like a thick bit of clingfilm which seemed to be vacuum packed to my boob. Apparently the alarm goes off if the vacuum seal starts to come undone, although this didn't happen to me. My breast cancer nurse gave me a tote bag to keep the drain and alarm in and I'd say this is really useful - keeps you organised and helps with sleeping. I found sleeping on my back difficult - I usually sleep on the side where I had the surgery and I'm still not back to that yet, although I'm getting there!

I was also ordered to wear a compression bra 24/7 for at least 6 weeks. It took me ages to find something suitable - must have tried everything in M&S - and eventually went expensive, although the BCN helpfully gave me a discount code. I also made sure I had a good supply of loose, front-buttoning tops - it would have been almost impossible to pull anything on over my head, with or without help.

I was lucky that my mastectomy was on my non-dominant side so I didn't "accidentally" pick up or reach for things with the painful arm. I did the exercises they give you - maybe not as religiously as I should have - and gradually expanded my reach. I did find the shoulder and arm pain difficult to live with and sometimes thought that I'd never feel normal again. I'm now nearly 4 months post surgery and do feel "normal" most of the time. My arm still doesn't go up as high or as straight as the other one but I think that's because I can feel that the scar is still healing. I've learned to trust that it will get there eventually. I drive, work and go about my life quite happily - although not tried a pilates or yoga class just yet, don't think I'll be doing a plank anytime soon! The implant is slightly strange - a lot firmer and smoother than I'd expected - and the lack of sensation is disconcerting but that's a small price to pay. It looks good with or without clothes. Emotionally, I don't feel as though I've lost anything - rather it feels great that the cancer has gone. 

If there's anything else you'd like to know, ask away. There are lots of lovely ladies on this forum with lots of different experiences .

Sending hugs

Susie x

Community Champion

Re: Preparing for a mastectomy- advice please

Hi Hope213 - and welcome from me too and a big hug. Annie has given you some good practical advice.

I had a mastectomy with immediate implant reconstruction a few years ago, so I’m happy to chat and answer any questions you think of. Most hospitals it seems, but not all, use drains after the operation so you may want to get some sort of bag to hold the drains in - I bought mine from Drain Dollies (if you look on their website you will see what I mean, and may already have something that might work), but some hospitals also give them out. Definitely front opening pyjamas and shirts/tops - it took me quite a long time to be able to get clothes on easily over my head (but I am a bit of a wimp!). 

You will be given arm exercises to do and it really is vital that you do them as often as your team tell you, little and often. It is hard to lift your arm for a while after the op, so you might think about moving say tea/coffee/biscuits/essentials down from high shelves in your kitchen. Accept any help that is offered too - I’m sure people are allowed to help even in lockdown.

One thing I want to warn you of is the possible side effects of the general anaesthetic. I felt really down after my op, wasn’t sure why, but my team told me that it can be caused by the GA. It may not affect you, but if you are warned you will at least understand what is happening.

The early days seem slow, but it won’t be long before you are back doing your normal activities. Get stocked up with good TV to watch/books to read/chat with friends - whatever makes you happy. I wish you all the very best and please do ask any questions at all. 

Evie xx

Member

Re: Preparing for a mastectomy- advice please

Thank you so much for all your advice, yes I'm still in shock really as I'd got used to the idea of a lumpectomy. You have given me some really useful tips, thank you. I really hope you are doing well in your recovery. X

Community Champion

Re: Preparing for a mastectomy- advice please

Hello Hope , and welcome to the forum. What a shock to the system, first one, then two then three tumours. I’ve only had a lumpectomy , but there are loads of ladies on here who will jump onto this thread to help and support you. In the meantime, my advice is to be good to yourself. Get yourself set up with some goodies for skin, hair, hands as I found my operation and following treatments affected me. Stock up with a few essentials to protect the immune system, and promote healthy body tissue and recovery. You can get on line advice and order goods online at H&B. I always order Manuka honey ( general good health) in the 1p sale. I found button front jammies sensible to slide arms into as I came home with a drain so couldn’t lift my arms up. Bras are another consideration, and my BC nurse advised on this. I ended up with crop tops to support my stitched up boob!

sorry I can’t help with the medical intricacies of reconstruction, but someone will be along shortly, I’m sure. In the meantime, best wishes for your procedure and excellent recovery . 🍀💐

Member

Preparing for a mastectomy- advice please

Hello, I'm 43 and have recently been diagnosed with breast cancer. What a shock, I've experienced every emotion! I initially felt 1 lump, but the mammogram and ultrasound showed another lump. My consultant was thinking I would have a lumpectomy but my MRI breast scan showed a third lump, all in 1 breast. Several biopsys later, I now need to have a mastectomy on the one side. I'm having one with immediate implant reconstruction. I would be grateful for any advise on what to expect after the operation. Many many thanks x