09-01-2019 09:06 AM
Quite often things change from the biopsy (which is only a small sample) to the mastectomy when they analyse it under the microscope. So the grade can change, as can treatment plans, for example if it is larger than they expected (often happens with lobular) or if it has spread to lymph nodes (which they can't tell until they take them out).
So, it can be quite disorientating at the start, but you should be getting the same information from now on.
08-01-2019 09:38 PM
08-01-2019 09:37 PM
Hi Sandraindurham, its understandable that your daughter is traumatised as its a big thing to go through. I had an mx a year ago and it is very traumatising. I've had two lots of counselling since and will always keep that door open to go back at any time if my mood slips again. This is something we don't just bounce back from but we learn to live with. As time went by my focus changed back to things I enjoyed doing again but to get to that place takes time, effort and professional support. Here is my blog if you want to look at my story and how I coped: lifeafterlola.com. xxx
08-01-2019 03:42 PM
08-01-2019 02:11 PM
01-01-2019 01:29 PM
I am so sorry to hear about your daughters experience, it was awful for both of you.
I used a post surgery bra the day after my surgery as I’m a 34DD I needed to support my other breast. Once I had had the dressing removed I put a breast feeding nursing pad next to the wound as I still had some stitches that hadn’t dissolved fully. The pad stopped the stitches from catching on the fabric and prevented me from getting sore until I had healed. I initially used the softie I was given in hospital but found a Knited Knocker more comfortable. These are provided free to ladies that have had a mastectomy, link to website below. https://www.knittedknockers.org
I started to rub Bio Oil into my scar once it had fully healed (around 6 weeks) and you can hardly see it now.
Hope that helps.
01-01-2019 12:38 PM
01-01-2019 11:34 AM
Hello everyone, andmy wishes of a wonderful New Year to all these very brave women posting here and giving so much support.
Thank you for that!
My daughter had her mastectomy, but she was left profoundly traumatised by the entire experience. She was overwhelmed by the diagnosis, the surgery, etc. but our wonderful GP said that they would give her a sedative before the procedure, to ease her terror.
And the problems started there: they refused to do so because 'there were no beds available so they could not give her a sedative'. After the procedure she had to wait in the recovery room for 6 hours, because there were no available beds in the ward. Due to her disability she was extremely confused, afraid and not able to know exactly where she was.
I insisted that I had to be with her and finally they let me stay with her. If I hadn't be there she would be inside a cublicle without being able to call for someone to go to the toilet or to have something to drink. Albeit I called several times before surgery, letting them know that she was a celiac and she would need something gluten free to eat afterwards, nothing was available. Thank God I thought I should bring some biscuits and soft bread with me.
She did not sleep for the 3 days that she was at the hospital and I had to run everyday because no gluten free food was available at the hospital. In fact, the only thing they have provided for her breakfast was two frozen slices of bread and a tea, so I brought food everyday for her meals.
Everyone working at the hospital were great and kind, but it was very traumatising for her, as I am sure it is for everyone that goes through these surgeries.
Now, I need your experiences: when your dressing was retrieved, how did you manage the stitches/scar/wound being rubbed by any kind of clothes?
How long does it take until you can wear a very soft unwired bra?
She did not had a reconstruction and she has just had her dressing taking out but it is very sore.
Thank you for helping us understanding these steps ))))
19-12-2018 03:22 PM
15-12-2018 02:50 PM
Oh, one more thing I've thought of - I was told that as surgeries go this is a very low risk one. The breasts aren't internal, the surgery is easy to accomplish as no major organs/blood supplies are involved and it doesn't take a long period of time. It is comparitively easy (apparently, I'm told) as a surgery goes as the patient can be monitored easily and local reaction and infection can be checked on as the area is external.
15-12-2018 02:45 PM
Regarding your daughter's sleep disorder - if you make the surgeon aware of this issue they have the capacity to keep her in hospital until the drains are removed. Therefore they could monitor.
15-12-2018 02:37 PM - edited 15-12-2018 02:42 PM
I didn't have a mastectomy, but had a lumpectomy and sentinal node removal, about 2 years 9 months ago. I can't reply about that issue, but I can about the general anaesthetic. It was my big sticking point, there are posts on here from me about that period in time where I could not get my head around the anaesthesia and was utterly terrified. I was entirely convinced I would die during it, and even wrote 'goodbye letters' to my family. It was, and this sounds ridiculous now, worse than dealing with my BC diagnosis. I had never had a GA , and this was my first one at 47 years old. I have a phobia of medication in general, so this was my ultimate fear that I was having to face.
My anaethetist actually had an individual meeting with me in advance (yep, just on NHS) where he answered all my questions and addressed my fears. It actually helped to even put a face to the person ahead of the procedure, and really calmed me.Ok, I'm not sure about 'calm' but acceptance LOL They can arrange this for your daughter if you ask the surgeon/bcn ahead of the surgery. Mine explained how many people would be watching me and checking my vital stats, how they dealt with anybody having a rare reaction (it had happened to him once in his 30 year career and the person was just fine afterwards), how every single eventuality was accounted for and he had never lost anybody (bar one really old man with a heart condition) during a GA. Infact, to be frank with you, as risks go - and this is going to sound really unbelievable - the risk is higher, of something happening, driving yourself to the hospital than being under GA. There are machines and people monitoring you AT ALL times during the GA. These anaethetists train for longer than most other medical professionals and are highly skilled in one area of expertise. I trusted him after meeting him, and obviously went ahead as had my surgery in April 2016. I didn't even need the lorazepam mild sedative he wanted me to take ahead of coming to the hospital! As he knew my level of fear he worked quickly administering it, more so than for other people I am told. I was fine, it was fine, I was eating biscuits not that longer later LOL.
When I came around I did have a panic attack oddly. I was convinced again I had fast heart rate due to the GA...he came to see me....nope....it was a panic attack. It stopped a very short while later. I hope it helps your daughter to know that she is definitely not alone with the GA fear....there are many people who are desperately fearful of it. Good anaethetists know this and wll spend the time dealing with the fears. x
15-12-2018 01:46 PM
Hello all, thank you for all the wonderful replies. You are all brave, brave people, positive and full of heroism and I am really grateful for your support.
She is due to have a mastectomy this Monday and I am terrified, especially with the drains, because she suffers from sleep disorders where she can pull them out, and what will happen after the surgery.
Reading about your experiences gave me courage and hope and I will not let her see that I am in such a state.
She needs positive thoughts and words and that is what I am going to give her, so many, many thanks for your contribution, you are literally giving us a hope.
14-12-2018 07:36 PM
14-12-2018 09:32 AM
I think everyone's a bit scared of having a general anaesthetic, but I remember being in the anaesthetic room (on my trolley) with my teddy bear, giving them my glasses, having a drip put in my hand. The next thing I remember is being on the ward with my teddy bear all tucked up next to me.
It's fine to take a teddy if it helps!
People's reactions to scars is very variable, the important thing to remember is that it means you have had the cancer removed. My scars don't bother me in the slightest.
If she is not having reconstruction, there is a facebook group (and also have a website) called flat friends, which is for people living without reconstruction. It's a very cheerful place.
13-12-2018 08:48 PM
13-12-2018 02:42 PM
Sorry to hear about your daughter, I actually think it's probably much easier to go through it yourself than to watch a loved one go through something like this.
I had bilateral mastectomy in July and chose not to have reconstruction. Like Pastamissus, I have prosthetic boobs that I rarely wear. I was surprised how little pain there was, particularly across my chest, presumably because the nerves had been cut. There was some discomfort under my arms, but after 24 hours I didn't need anything stronger than paracetamol. Probably the most uncomfortable part of the op was having the drains in afterwards, but if the op is only on one side that will be less of a problem.
I was back at work six weeks after the op, but to be honest I could have gone back sooner. I'm completely back to normal now!
Wish you both all the best. Maybe encourage your daughter to join the forum and get support herself?
13-12-2018 02:18 PM
pastasmissus, great information, thank you so much, she doesn't want reconstruction as-well,but she is so terrified!
She is afraid of the anaesthesia, of the surgery, of the pain and of the outcome and I am just trying to find a way of helping and this forum really helps.
Bless you all!
13-12-2018 01:41 PM
I have now had 2 mastectomys 8 weeks apart and an axillary clearance. My first mastectomy was done as a day case, and I went home with no drain. The second one they kept me overnight and sent me home with a drain which came out 2 days later. There is suprisingly little pain, much less painful than kidney operations! Often there's a bit of a burning feeling in the upper arm, but mine settled after 3-4 weeks.
I decided not to have reconstruction, I have prosthetic boobs, but don't wear them very often, I am happier being flat. I'm still tired, but otherwise my quality of life isn't much different to before.