Mastectomy

Hi Kiffkak55,

I had the same thing happen, I was devastated when they told me they couldn’t do the reconstruction at the same time, I’d had two previous surgeries (lumpectomy and re excision) so I just wanted to be done with operations and the thought of another surgery in a year or so time was the last thing I wanted! I feel a lot better about it all now, from what I understand radiotherapy can damage the reconstruction so hopefully waiting results in a better outcome and I think given time to think my choice for reconstruction will be different to what I would have made at the time. I had a right side mastectomy and I am still using softies, the one I was given and some I ordered online and even one I made myself!, with the right bra they look absolutely fine. I’m waiting for my proper prosthesis, they had to order the right size, but they look and feel pretty good. It’s certainly not as bad to deal with as I thought, I do sometimes think it would be easier if it had been both breasts removed as I think I would go without a bra sometimes but I don’t feel I could go about lopsided! I will warn you the first time you see yourself after surgery can be hard, I was a blubbering mess and felt that I would never be able to deal with it but I am fine with it now. 

Good luck with your surgery, the important part is getting rid of the cancer, you will adapt to the missing boob and try to remember it is temporary   and we will have it sorted eventually, I’m aiming for perkier boobs and a tummy tuck! 

Hi Kiffkak55,

I had my mastectomy at the beginning of August and was told the same that they would not be able to do the reconstruction at the same time. I had already made the decision that I didn’t want an immediate reconstruction  but it wouldn’t have been an option. I have now been told that if I want to have a reconstruction they can put the tissue expander in and this can take place pretty quickly. However I am undecided yet. If you are wanting to have reconstruction at a later date it may be worth asking them if you can have your tissue expander put in at the time of your mastectomy. I think different NHS trusts are doing different things so not sure whether that will be an option. 

All the best for your surgery. Always here if you need a chat. 

Sending hugs xx

Hi Morsey

Thanks for your reply  it has made me realise how little I have been told about my breast cancer. I don't know anything apart from it was going to be a lumpectomy back in July. But now it has grown and needs a full mastectomy and lymh nodes removed. Should I be asking more questions? I'm feelung totally lost now... I have deliberately stayed away from sites like this as I am quite a strong person and didn't want to be swayed by what other people have experienced, but now I am feeling Lost!! I think I will ring my breast care nurse tomorrow and ask some questions, any idea what I should ask as I have been told nothing?? 

Yours 

Kath

Hi Kath,

I was the same, I had no idea what to ask or what some of what they were telling me meant, sometimes I totally lost focus at appointments and just stopped listening. If you can take someone with you to appointments or have the nurse on speakerphone with someone listening in, it’ll help a lot, my husband has been with me for every one. Writing down your questions before appointments/phone calls  is a good idea. I think some of the main questions is what type of breast cancer you have, the stage and grade, though that can change after surgery. What further treatment you will need, such as chemo, radiotherapy or hormone inhibitors (If it’s ER/PR+). If it’s ER+ HER2- you could ask about getting an Oncotype DX test, it’s a genomic test that gives a recurrence score, distant recurrence % and chemo benefit %, the more information you get the more informed your choices can be, it saved me heading down the chemo route!! I would also ask for info about your mastectomy, will you be staying overnight, will you have drains in and for how long (I thought I’d have bags that would hide under my clothes but ended up dragging a bottle around for three days), will you be given a softie, how long till you can drive and anything else you might be worrying about. Your breast cancer nurse is there for help and support so don’t hesitate to contact her if you have any questions or concerns, there are also many knowledgeable and helpful people on here happy to offer support.

Hopefully you can be armed with a lot more information after you contact the nurse, please let me know how you get on

Oh and I am quite a strong person too but I had a fair few wobbles during the initial scary rollercoaster ride this is, I was glad to realise that it was totally normal and it does all get better.

Marj

Hi Marj

Thanks ever so much for replying to me, what you have highlighted made me realise I know a bit more than I thought.lol must be the fog in my brain, but you have raised a few things that I need to ask  I know I'm  HER2- But not sure about the ER But I'm going to ring the BCN tomorrow ( look at me getting with the lingo already! .) I will let you know how I get on tomorrow x how far down the line are you in terms of treatment?? I hope all is well x

Sending much love

Kath x

Hi Kath,

No problem, I think most of us go in blind and learn as we go. I start radiotherapy a week today, there’s been a bit of a delay starting as they threw chemo into the mix after my last op but also offered the Oncotype test to help make decision, so had to wait for those results, thankfully they were good and a no for chemo. I have also started Letrozole (mine is Lobular Er+ HER2-) and I am struggling a bit with the side effects but hopefully they settle down. It all seems to have taken such a long time, initially everything happened fast and everything seemed very scary, three ops rapid, then since the mastectomy it all seemed to go on pause! Nearly done though thank goodness.

Much love back 

Marj x

Hi All

So I have spoken to my BCN today and have found out a few more details, I have grade 2 invasive ductal cancer, and also in my lymp nodes both on my left hand side, it is ER+ and HER2-.

I found a lump in June  and because of bloody covid it is only now that I'm having treatment.

Mastectomy and lymph node removal booked for next Tuesday (eek!). Apparently the surgeon that is doing my operation does not insert drains!!?? Not sure if this a good thing or not.

I talked to her about reconstruction as no-one has asked me whether I wanted one in future and said it didn't alter the surgery so I can make up my mind afterwards. I'm hoping to be in and out the same day,I just wish it was tomorrow as my stress levels are ramping up already!!

Any recommendations on how to cope post surgery and are there any amazing gizmos and gadgets that help with sleep in the first couple if days??

Thanks

Kath

Hi Kath,

Hopefully it helps having a few more facts now. The waiting for things is the pits, I was fortunate that things moved fast with the surgeries, I got less and less notice each time! I think not having drains might be better, I got a seroma anyway but it didn’t really give me any issues and went away by itself. The best thing you can get is a squishy cushion or two, I was given a heart shape one after my first op but the one I found most useful was a Cushtie I got off Amazon. You can rest your arm on them, cushion your op site in the car and prop yourself on it in bed to help you get a good position to sleep, I’m still very attached to mine though I don’t need it anymore! A nice soft blanket/throw is handy too just to be able to curl up with and pad bits initially. After a week or so the skin round the op site got really hypersensitive and I couldn’t stand a lot of materials next to my skin, so could only wear a really soft bra/top. Sainsbury’s had a really soft cream hidden support top In the pyjama section that I wore all the time then, it has pad pockets that you could fit a softie in. I didn’t find the op too bad, I didn’t need more than paracetamol and ibuprofen to control pain, I didn’t move about much the first couple of days due to having to drag the drain about but once it was out I was fine as long as I was careful not to lift anything too heavy and top shelves were a bit of a challenge a while. It was about 10 days till I started driving again. It’s just over two months since my last op and I’m pretty much back to normal, the feeling had mostly come back in my arm though my armpit is still a bit numb. They will give you stretches to do, make sure to do them they do help a lot. The thought of the mastectomy was way worse than the reality, I would’ve happily gone home the same day but they insisted on keeping me as it was late in the day. As I said before my initial sight of myself after was a bit traumatic but I very quickly got used to it, I don’t really notice my boob missing now and feel fine out and about wearing a softie (my prosthesis is on order), I’m still wearing just about all my old clothes, though obviously I had to buy new ones because..... my wardrobe just wasn’t stuffed enough!

I know that it is just not possible not to stress about it but it will all be behind you soon and you will feel a lot better about it, the import part is the cancer will be gone. 

Take care and let me know how you get on.

Marj x

Hi Marj

Thanks so much for your reply, I am ordering a custie now!! My daughter bless her has made me some under arm cushions and a seat belt cushion, which I think will be invaluable.

I'm feeling a lot more positive now about my op thanks to you, I  try talking to hubby but all he says is You'll be OK!!!  he is finding it hard to express himself   we have a grest network of friends, but talking to someone who is going through something similar is invaluable xx

Just one last question did you manage to sleep in the same bed with the other half after your opera tion or did you/he retreat to the sofa/spare room??

Thanks again

Kath xx

Hi Kath,

Yes we managed fine in the same bed, it’s a king size. I had myself propped up with pillows and Cushtie in place so I didn’t move about too much. We did have to swap sides because of my drain, not sure hubby was too happy about that, he’s a bit OCD about those sort of things, as soon as the drain was out I was evicted back to my side  It is a hard time for our partners too, think mine got a bit shell shocked when I had a meltdown as it was so unlike me, he’s usually the flapper lol It is stressful and an emotional rollercoaster but we both feel we are back on more solid ground now and looking forward to putting this behind us. If Covid could just get sorted now that would be great, it didn’t exactly make the journey any easier!

Take care

Marj x