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Daughter due to have a mastectomy...and I am devastated

23 REPLIES 23
Member

Re: Daughter due to have a mastectomy...and I am devastated

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.

 

Shi Community Champion
Community Champion

Re: Daughter due to have a mastectomy...and I am devastated

Hi sandraindurham, sending ❤️❤️❤️To you and your daughter. It is so overwhelming to find yourself on this journey your daughters head, emotions the lot will be 😲😲😲 it feels like everything is taken out of your control and you are in a hurricane and spinning. She is amazing and beautiful and strong and she will find her way through, there is the someone like me number on the bccf she could ring when she is ready, it really does help to speak to someone who has been on the journey and it could help her to know that she’s got 24/7 support on here too from everyone through recovery from operation to chemo to rads, there is so much love and support and care and understanding here on the bccf she will always have 👭👭👭As will you to ❤️❤️❤️And help you through in anyway we can. Do you have a date she has to start chemo yet and do you know which chemo she is due to have yet? Let us know and we’ll give you list of things to get for her so you can be as prepared as possible so you are able to love and support her 😘😘keep 💪💪💪💪we are here 💕💕💕✨✨✨Shi xx
Community Champion

Re: Daughter due to have a mastectomy...and I am devastated

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

Community Champion

Re: Daughter due to have a mastectomy...and I am devastated

Hi Sandra,
Apologies if this has been said before, but would your daughter access counselling to help her with this?
It’s something many of us here have accessed as it is such a scary time with all the difficult feelings that go with it. Her team can organise this or alternatively the GP & the helpline here can help.
Unfortunately, getting hung up on stats is not helpful, as they are averages based on patients usually in treatment 10-20 years ago & are not representative of your daughters situation. Could she be encouraged to step away from the stats, as it’s clearly not helping.
Unfortunately, sometimes things can change &/or further investigations are needed, but there’s not much we can do about that. The most important thing is getting the correct treatment plan for her, to get it dealt with.
Recovery from this is the normal outcome, with the vast majority of us recovering & getting on with life as usual afterwards
You’re doing all you can & you can only be there for her, which you’re doing.
Wishing you both well with it all.
ann x
Member

Re: Daughter due to have a mastectomy...and I am devastated

Hi all, thank you for the support. My daughter is really struggling, especially because she feels that information is being given on one day, and then the next is a different situation. t first she was diagnosed with a cancer grade 2 and next the say it is a grade 3. It was stated that she wouldn't need chemo, now it is that is the situation. When asking questions there is more an attitude of making her feeling uncomfortable as if it was not normal to be scared after a prognosis of cancer, a mastectomy at 34 and the notion that there is more ahead. She says now that she no longer wants to speak with anyone and she keeps referring to really nasty statistics of survival. Her cancer is lobular, did not reach lymph nodes and we are now waiting for the onco type results.
I am telling her that she is a courageous person, that is normal to be afraid, but she is in to much mental pain to hear me.
Can any of you ladies advise me regarding how to proceed, how to help her?
What should I do to help her surpass this fear and suffering?
Thank you
Member

Re: Daughter due to have a mastectomy...and I am devastated

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.

 

Member

Re: Daughter due to have a mastectomy...and I am devastated

Hi so sorry to hear about your daughter's experience mine was similar when having my mastectomy but my mam and sister stayed , I came out of surgery wearing a support bodice and had to leave it on for nearly four weeks with the drains coming out from the bottom , Matalan do lovely little bags and I also put my dressings grown on to put my drains in the pockeks so I could move around , couldn't shower for two weeks until the drains came out , unfortunately the drain from next operation I managed to just about pull out , very uncomfortable xx
Member

Re: Daughter due to have a mastectomy...and I am devastated

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 Smiley Happy))))

 

Member

Re: Daughter due to have a mastectomy...and I am devastated

Hi I know it's a very worrying time but it also depends on where you live , I live in the north east of England and was diagnosed with breast cancer on 9 th October and had a skin sparing mastectomy on 13 November with two drains that were left in for two weeks this was more uncomfortable than the mastectomy a month later on 13 Dec I had a lymph node clearance due to cancer cells found in my sentilel lymph node at the time of my mastectomy , the drain unfortunately is still in a week later and is uncomfortable and I hate not being able to shower or drive or lift , as long as your daughter is positive and is able to talk to you the pain or discomfort will ease it's the waiting for results and information that's the hardest my surgery was good but I keep getting told one thing at a time and it seems very slow I'm impatient , I want my life back but with support it will return it's a very long road for some breast cancer survivors and not always as easy as you read , I've just read a good book called Tea & Chemo by Jackie Buxton , sending love to you and your daughter , can't have managed without my mam & dad hubby & sister & family
Community Champion

Re: Daughter due to have a mastectomy...and I am devastated

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.

Community Champion

Re: Daughter due to have a mastectomy...and I am devastated

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.

Community Champion

Re: Daughter due to have a mastectomy...and I am devastated

Hiyer,

 

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

 

 

x

Member

Re: Daughter due to have a mastectomy...and I am devastated

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.

Member

Re: Daughter due to have a mastectomy...and I am devastated

Hi Sandra

I had a left side mx without reconstruction with SLNB and didn't need any drains. The operation took 2 and a half hours and I left the hospital within three hours of waking up. The anaesthetic made me feel quite tired and nauseous, but I wasn't actually sick.
I didn't really have any pain straight after, but I was prescribed codeine which I took for a couple of days. I took paracetamol and ibuprofen regularly for a while, to help control the swelling and tingling/burning feeling in my armpit.
Unfortunately I developed cording in my arm, despite doing my exercises religiously. Sometimes it just happens that way. I'm still having physio (12 weeks later) but, hopefully, I'll have full arm movement back soon.
Overall, it was a lot easier than I expected. Having plenty of comfortable bras and button opening tops (for hospital appointments) to wear was the most important thing. I got bras from Asda and a couple of tops in Primark.
Try to focus on the positives: that it has been found and your daughter is receiving excellent treatment.
Do keep using the forums too, they have been invaluable to me.
Good luck
Member

Re: Daughter due to have a mastectomy...and I am devastated

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.

Highlighted
Member

Re: Daughter due to have a mastectomy...and I am devastated

Hi Sandra,

I had a left sided mastectomy in February and I didn't need to take any painkillers after as the were no pain. I was a bit sleepy from the anaesthetic for a few days but apart from that it was fine. The drains were slightly uncomfortable (mainly when the dog put her head through the tubing and pulled it) but more inconvenient than anything else.

I was also back at work and doing my daily commute two weeks later.
Member

Re: Daughter due to have a mastectomy...and I am devastated

Hi Sandra

 

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?

x

 

Member

Re: Daughter due to have a mastectomy...and I am devastated

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!

Member

Re: Daughter due to have a mastectomy...and I am devastated

Thank you Wahini, it is great to know, she does not want reconstruction, I just want to see her back and pamper her as much as possible!

Member

Re: Daughter due to have a mastectomy...and I am devastated

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.

Member

Re: Daughter due to have a mastectomy...and I am devastated

Hi I recently had right side mastectomy and auxiliary mode clearance, it was not as bad as I had expected. I had immediate reconstruction with implant and mesh so that was extra long surgery (5 hours) but I am glad I did not wake up flat. After the first night one of two drains came out and I could have a shower, after the following night the second drain came out and I could go home. At home I was up and about most of the day and doing my exercises for stretching my arm. It is still tight from the mode clearance and I am still working on it. This is the my main discomfort. After two weeks I was back at work and now after four weeks I started my chemo today. The surgeon said it really helped that I am slim and in good shape so that he could cut more economically as I understand it. I haven't been in pain much, other than the first night after surgery but they have me drugs for that and these also helped me sleep a bit. Hope this info gives you comfort, take care

Member

Re: Daughter due to have a mastectomy...and I am devastated

Thank you ann-m, I am anxious to hear about experiences, it will help me to provide a good support and, hopefully, ease the path.

Sandra x

Community Champion

Re: Daughter due to have a mastectomy...and I am devastated

Hi Sandra,

Welcome to the forum, although of course, you wouldn't want to be here & sorry to hear your daughter's been diagnosed.

Try not to let what happened to you affect your thoughts about your daughter's surgery, it's not the same thing at all.  I did not need a mastectomy, so can't advise specifically, but no doubt, others will be along too help on this. 

It is a horrible shock getting a diagnosis, especially when young, but most importantly, it can now be treated & outcomes are excellent now. 

There are certainly others here who are a similar age to your daughter, so if she wants to, she can certainly come here chat & get support as needed. In addition, there is the helpline here & lots of useful information on the main bcc site.

ann x

 

Member

Daughter due to have a mastectomy...and I am devastated

Hello, I am new here and I am not used to forums, but I am really desperate and I really don't know what to do here.
Two weeks ago my 34 years old daughter was diagnosed with breast cancer, completely out if the blue.
No family with this issue, no warning, just a sudden lump.
She will have a mastectomy next week and I am terrified with a long list of nightmares: will she be OK with the anaesthesia and surgery, how painful it is afterwards, I am horrified by the draines (I just had a kidney out after two months of a nephrostomy bag that went horribly wrong), if they are painful, her reaction afterwards, seeing a scar, her quality of life, etc.
I feel useless, basically I am just listening her, supporting and trying to read as much as possible, but I need this forum's help to learn how painful and difficult will be, so I can be prepared to help her.
I cry a lot during the night (we live together) because I do not want her to see me like this but hearing about your experiences will help me helping her.
Thank you and bless you for the support you are giving.