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If you had or are going to have a mastectomy

148 REPLIES
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Re: If you had or are going to have a mastectomy

Hi Helen, I'm happy your results are ok and that you're back to work! Nobody but you should be mad. It's irritating and even painful to have a cough for so long. I hope you get better soon and that you begin reconstruction as soon as possible, so you can forget everything about cancer once and for all.

 

Yes, my mum is still here, but my sister left last week and now we feel the house empty.We use to say that we are the three musketeers lol.

 

I saw my surgeon two weeks ago and he said my lymph node biopsy was negative.I'm so relieved!😃 But he said I didn't have 1mm of clear margin near to the skin, so maybe I'll need chemotherapy. So far I didn't get any date for my appointment with an oncologist neither a date to start radiotherapy.🙁  I hope my mum will still be here when I start any further treatment.☺️ 

 

I wish you a lovely Sunday and send many hugs.

 

Carol

Member

Re: If you had or are going to have a mastectomy

Hi Carol - I got the results of my chest x-ray and it was all clear, thank goodness. I still have the awful cough, though, worse than ever - I am driving my husband mad. The doctor won't give me anti-biotics as he thinks its viral I think my immune system must be low so it's taking me longer to fight the virus. 😪

I've done a few days back at work - all going well. Tired, but thats to be expected I suppose.

I have an appointment with the consultant on Tuesday - hoping to get a date for the implant exchange.

How are you? Is your Mum still here?

Have you had your results and started radiotherapy?

Take care,

Love

Helen

xxx

Member

Re: If you had or are going to have a mastectomy

Hi Trixielady How are you? Has your chemo started? Mine starts a week Thursday, I’m reading up on everything I can do to help get through it. How is your implant now? I still feel like I have a bowling ball stuck to my chest 😂 it’s painful & tight, it’s going to get filled from the bottom but hasn’t yet, the gel part is at the top, I can’t imagine what the ‘finished product’ will feel like. We’ll get there 💕😘😘
Member

Re: If you had or are going to have a mastectomy

Hi Susie- sorry you've had to join us here, but the forum will be of great help and support to you I'm sure (don't know how I'd have coped without it). As I've explained earlier I was diagnosed with IDC with DCIS as well as other 'suspect' areas of my right breast and had a right mastectomy on 24th Sept last year. I had immediate reconstruction using a tissue expander. I'm 62 years old, so don't understand why you can't have a similar procedure- of course we're all individuals and need different treatments etc- so I expect there's a good reason why your medical team are advising against this procedure. But maybe you could ask the question - to put your own mind at rest? Good luck, sending you loads of love and support- keep us informed. Love, Helen 😘
Member

Re: If you had or are going to have a mastectomy

Hi Susie

First of all a big welcome to the forum and a big hug from me as you go through treatment and decision making. I was diagnosed in December 2016 and this site has been a huge source of support.

 

I have never heard of anyone being too old for implants. I am 51 and had an implant after a mx and node clearance, and some people have to have them replaced years later. Maybe someone else on here will have heard that advice or perhaps you can get a second opinion? If you do go for the implant option then I am happy to offer any advice, or indeed if you have any other questions I might be able to help with.

 

Love, Evie xx

Member

Re: If you had or are going to have a mastectomy

Hi All,

 

I am new to the forum and have been dignosed with Invasive Lobular Cancer with cancer cells showing in nodes after biopsy but full extent not known yet. It is so inspiring to read the support given on the site. No one except a fellow sufferer understands how this illness feels and how frightening and traumatic the future seems.

 

My sureon has told me I will have an mx and as many as nodes as necessary removed during surgery. My surgeon has recommended immediate reconstruction although she said I was too old for  implants - I am only 60 and reasonbly fit - it looks like I will be offered latisimus dorsi flap. I've read some horror stories about life after this type of reconstruction surgery and I am terrified . Has anyone undergone this procedure or does anyone have any advice on immediate reconstruction ?

 

thank you , best wishes to all, Susie

Member

Re: If you had or are going to have a mastectomy

Hi Helen Thankyou for sharing your experience it has really helped. I’m probably overthinking & looking for problems, it’s only been a week but I am prettty impatient when it comes to illness/recovery I want to be back to normal now!😂 My implant feels quite hard, although I’m afraid to touch it, my surgeon is happy with it though so it must be ok. I’ve no idea how it’s going to feel when it’s all inflated. I know it was put under my chest muscle & has a ‘sling’ too. There’s so much to take in & I sometimes feel they tell me as much as I need to know. I was so uncomfortable last night sleeping on my back with ‘the bra’ on I had to take it off, wow, the relief!! Back on this morning 🙁 the bn did say to persevere but I can’t wait until I haven’t got to wear it anymore Xxxx
Member

Re: If you had or are going to have a mastectomy

Hi - was interested to see some discussion on this thread about tissue expanders.  I had a mastectomy in late October with a temporary tissue expander inserted.  I didn't have regular inflations as I had a lot of swelling after the operation so had to go back to theatre for that to be sorted out and, because the swelling had already stretched the skin so much, the surgeon inflated the expander at that stage and then did one more fill in clinic a couple of weeks later.  I've found the tissue expander a really difficult part of all this - it's been uncomfortable at best and really quite sore and painful at worst - and the numbness in my arm and armpit from my node clearance makes it all feel odder still.  I'm having chemo now and then radiotherapy after that so won't have the surgery for the permanent implant for quite a while.

Like helenann, the consultation I had about whether to go flat or have the tissue expander happened in a bit of a blur.  Not that I blame anyone for that - I would have probably still opted for the expander anyway - but it wasn't really explained to me how uncomfortable it was going to be (and it's really hard to make these decisions anyway when you've never really given them a moment's thought before you find yourself in the patient's chair!!!)

Heyho.

Member

Re: If you had or are going to have a mastectomy

Hi stargazer1. Its awful and worrying time for us all, my arm & armpit always felt swollen but the nurse said it wasn't and she'd worry about the kind of swelling they were looking for didn't help. Me! My arm & pit still feel swollen and very very strange to touch, exercise helps but is difficult I've even been swimming and it felt very strange my muscle in my boobie was moving,, mine still looks strange feels warm to the touch think it's lumpy but scared to touch too much don't like the feel, they said mine will be high but at the moment it's getting filled from the top not sure how long it'll take nurse puts 50mls in at a time or has until now but wants me done before my chemo, hopefully that'll be next week xx bug hugs at this **bleep**y time xx
Member

Re: If you had or are going to have a mastectomy

Thankyou Evie That is very reassuring, I was even worrying that it might be a blood clot & therefore DVT, thinking all things at the moment 😂xx
Member

Re: If you had or are going to have a mastectomy

Hi Stargazer - the implant I have at the moment is a tissue expander. It has the capacity to be filled to 620ml, but at 525ml it looked about equal in size to my left breast so it was decided that was enough. I had 6 weekly visits to the hospital to get it to this size as they put 50mls each time I went. The implant i have at the moment  is quite hard and it feels lumpy at the moment.You can actually see the 'port' sticking out under the skin that they use to inject the saline into it. It feels like it has a life of its own at time, I can feel it move. - It looks (and feels) a bit like  I have a bowling ball implanted!!! - not one bit natural and there's puckering at the side(which is a bit worrying🙄) - but the consultant has said it will all get sorted when they do the replacement.

I had my last 'fill' in November and it then has to be left to 'settle down' and to make sure the skin is stretched enough for the silicone permanent one to be put in, so I'm due back on 5th Feb (which will be a gap of 3 months since my fianl fill) for the consultant to check it over and decide if it's ready to have the transfer to the new softer, silicone one (which I'm hoping will look and feel more natural).

I have to admit I don't remember being given any choices on which reconstruction I could have - but it was all a bit of a blur when I look back now. I'm pretty sure I was just 'told' this was what they were going to do for me and I went along with everything (I didn't know any different then and thought this was the only way - I realise now there are loads of different reconstruction techniques).

If you've got one that doesn't need replacing thats great - as the one I have obvioulsy means more surgey.😕.

I didn't have much of a problem with my arm, it felt 'tight' under my arm for a while - I had a drain in for about 10 days - made sure I did the excercises for my arm regulary.

Keep us informed of your progress.

Love, Helen. xxx

 

Member

Re: If you had or are going to have a mastectomy

Hi Stargazer1 - I just want to jump in on this chat to hopefully reassure you about the arm swelling. My arm swelled a lot a few days after my mastectomy. I immediately panicked that it was lymphoedema but my surgeon also advised that it was a bit early for lymphoedema. My swelling gradually went down, thankfully, and I’m sure yours will too. I read something about gently clenching and unclenching fists to keep everything moving. All the best to you.

Evie xx

Member

Re: If you had or are going to have a mastectomy

Hi Helen, as Trixielady said Thankyou for sharing your implant experience. Can I ask initially ie. straight after surgery was the implant quite high? You say yours is being replaced with a permanent one? I believe mine is permanent but I will check that. The top of it is gel which is there now & the bottom will be filled with saline gradually week by week. In total from surgery how long has it taken to be ‘full’? Did you have any swelling down your arm, the bn said it’s a bit early for lymphodeama so might just be from the surgery, I hope so. Xx
Member

Re: If you had or are going to have a mastectomy

Thanks Helen, glad to hear from you it's much better to hear from someone that has experienced it. I'm a little bigger today and having more put in on Monday, after my oncologist app, Doc has just rang to say my white blood cells are low, thyroid needs adjusting and cholesterol is high, any ideas on what I can do, see doc on Friday xx big hugs xx
Member

Re: If you had or are going to have a mastectomy

Hi Trixielady Hope all goes well at your appointment on Monday, I think I may have the results of my surgery at my appt on Monday, although my consultant did say they might not be back. The drains were good today 20 in one & 50 in the other 10 less than yesterday in each. Apart from the arm exercises I’m not doing very much so think that’s probably why. The drain bag has been a godsend, the Bn gave me 1 & I bought another off eBay, 1 in the shower with me & 1 drying! I’ve taken ‘the bra’ off today to wash it, as I only have the 1. As a friend was visiting I put a soft cup bra on with a shirt & it looks ok, I’m gearing myself to put it back on later! My arm & underarm are very swollen so the bra is tight & im not sure that helps?xx
Member

Re: If you had or are going to have a mastectomy

Hi Trixielady and Stargazer - thought i'd jump into this topic as I'm a bit further along than both of you with the tissue expander, so thought I'd share what I've found so far.

I had a right sided mastectomy with immediate reconstruction using a tissue expnader with ti-loop meash on 24th September.The tissue expander had 225cc volume filled in theatre -so I straight away had a bit of a breast shape. I then went weekly for 6 weeks and at each appointment had 50cc added. I now have a total of 525cc in it and this is the final total. I was a generous D cup before the operation. 

I used to wear the front fastening bra's to begin with and my breasts looked very strange and uneven - the 'new' one very hard and a weird shape and my 'good' one looked very droopy compared to the new one.

I'm now back in my normal bra's and they look so much better in it - they look quite even in size when tucked into the bra (they still look weird when not been restrained in a bra).

I found having the weekly 'fill' was uncomfortable - nothing too bad, just achy for a couple of days.

I also had the phantom nipple itch for a while - but I don't get it now - so that should clear for you.

I sometimes feel like the expander has a life of its own - it seems to 'move' - especially when I cough. It looks odd, but I'm really hoping when it's exchanged for a softer permanant silicone one it will look (and feel) more normal.

I go back on 5th Feb when I'm hoping to get a date for surgery for the exchange.

If there's anything else you want to know about my tissus expander 'experince' let me know.

Love, Helen xxx

Member

Re: If you had or are going to have a mastectomy

Stargazer1, I couldn't wait to get my bra support off even if it was whilst I had a shower think in all I had to leave it on for 8 weeks around the clock, I was much more comfortable without it xx
Member

Re: If you had or are going to have a mastectomy

Hi stargazer1, I had my MRI cancelled not sure why, I see my oncologist on Monday so more tests and more results hopefully, see BC today so I'm going to ask why I feel so uncomfortable, how are you managing with your drains?? I still can't lay completely comfortable on my opposite BC side but a V pillow helps, thinking about you take care xx
Member

Re: If you had or are going to have a mastectomy

Hi Trixielady I’m so glad you are feeling ok and your inflation is going well. I’ve been feeling really uncomfortable. I’ve got a stability bra that I have to wear day & night, it’s quite tight and as I’m really swollen under my arm is seems to pull on that. My drains are getting less & less I’ll be glad to have them out so I can lie on my side. Yes I have numbness too but from my shoulder to my elbow is so painful to touch, my bcn said it’s the nerves but nothing seems to help. I’ve an appt with my surgeon tomorrow to check the implant & dressings, she’s being cautious because of my previous radiotherapy. Have you had any other scans or tests? I have seen on here & on a FB page im on that some have MRIs, CT & something called Pet? None of these have been mentioned. Xxxx
Member

Re: If you had or are going to have a mastectomy

Hi stargazer1, I'm doing good, my inflation started on new year's eve with 50mls, back tomorrow but not sure how much will be put in, I had a phantom itch where my nipple should have been, very strange feeling and done my head in for about 10 mins, my app with the oncologist is Monday so strangely looking forward to starting chemo although I can't feel my boob the area underneath my arm and side sometimes feels like there's a lump of metal pushing out of it it feels tight more discomfort than pain how do you feel?? Xx