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If you had or are going to have a mastectomy

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

Hi everyone, thank you very much for all your encouragement and for sharing your experiences. I opentthis thread one month ago and I know some of you had surgery after that and some received their results. How are you all feeling? How were your results? If you feel well to share, it would be wonderful to know and try to help. We're all at the same shoes. :-)
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Re: If you had or are going to have a mastectomy

Jane, I'm a bit confused. Did you have surgery twice? You said 4cm pre cell cancer were found. How was it? Dcis is not ductal carcinoma in situ(inside the ductal?). I was told I have IDC invasive ductal carcinoma(it started inside one ductal, but it has already invaded breast tissue :-(
Member

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

Kathx that’s exactly how I feel. I’ve been given an opportunity to live and to be cured and I intend to give myself the best chance to do this.  I have small breasts so my sexuality has never been defined by them, although honestly I’ve always wished they were bigger and envied the women who have bigger breasts. I was given the opportunity for an immediate reconstruction with expander when I have my mx with SNB surgery next week however I want to give radiotherapy the best chance to work if I need it so I have elected not to. It seems for small women without much extra fat that this is the best option if you want an immediate reconstruction without compromising radiotherapy, similar to what HelenAnn had, however your skin can tighten with rads so you need to be aware of that. I was quite emotionally unable to deal with this in the first couple of weeks following diagnosis but I’m really heartened by you lovely ladies who have detailed your experiences post surgery.  My first priority is to live. I’ll deal with the cosmetics later. Carol Lina you can do this, we’re all behind you.  Bless you all, Kia Kaha

Member

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

I had a mastectomy 30 years ago and waited a year before having a reconstruction, which was far less common in those days. I only had one because I hated wearing a prosthesis so much - hot in the summer and falling out all the time (that was probably my fault).

 

 

I've just had a lumpectomy on the other side and really feel that I was stampeded into it and would have much preferred to have had another mastectomy and have done with it, as I did 30 years ago, rather than having to mess around with chemo and rads - although that's probably the opinion of an older woman talking.

 

I think we all need to remember that we are more than our breasts, they neither define us nor our sexuality - despite what many men try to make us feel - I appreciate that this may be not be a usual opinion but I really think it's both true and important. Even last time round when I'd only been married for a couple of months I felt that and the mastectomy made no difference to my relationship, only the thought that we might lose each other so quickly after coming together made it so much more precious.

 

Just another pov to throw into the mix.

Member

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

Hi Mai,

 

It is so interesting that you, and several other women on this forum, are able to articulate exactly how it feels to have a mastectomy, and what post-operative support we need. Maybe we are a self-selecting group (!), but we all seem quite strong, articulate women, so surely several of us have tried to explain to the hospital staff how a mastectomy has made us feel. But the psychological care seems lacking. The ( very lovely) second breast cancer surgeon, who I saw to ask if I could have a temporary implant, an expander, etc so I didn't wake 'flat' from the operation, gently said to me that I was putting how I looked above what was best in terms of treatment. But ladies on here who are being treated in other hospitals have written that their surgeon has said an immediate implant is important for their mental well being. Several friends are surprised that there is no counselling being offered. I know I could contact Macmillan but I feel much better now. 

 

Best wishes
Jane xx

Community Champion

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

Janie, I agree, this is a *major* event, very traumatic and it is essential that anyone going through a mastectomy receives counselling.  It's not just a flesh wound; it's part of your femininity and sexuality too and you've taken a big kick to it.   I am in the same position as you: delayed reconstruction.  It is very hard to live with and whilst I assure myself that it had to be done to keep me alive I find it hard to live with.  The counselling helps but it doesn't change my eyesight.  I think it needs counselling and time to grieve your losses.  Cancer takes so much from us and whilst we are tough and positive it doesn't change the fact that we are coping with a lot and I'm not sure we really "get over" it but we get better at living with it.  I am in the process of discussing my delayed reconstruction.  Scared but pleased, but scared, but pleased............  we are just humans after all!   xx

Member

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

Hi Quaggie,


Welcome to the thread! It was interesting reading your story. I was pleased to read that they insisted on ladies seeing a psychologist.  You made the valid point that this is a single major event in our lives , whilst it is routine for the staff,

 I was extremely traumatised for about two weeks before my mastectomy ( on 31st October), and for a week after. They wouldn't do an immediate reconstruction, even with a temporary implant, as I will be having radiotherapy soon. My bcn has been lovely but I think you are right that they do deal with it every day so it seems less of a big deal to them.

I received a questionaire in the post. a week after my mastectomy, which I think had been sent to me because of my distress at having the mastectomy. I filled it out, and had to give marks out of ten for how concerned i was about various aspects of this illness and treatment, and I gave concern about my appearance ( mastectomy) 10 out of 10. They said the survey results would be shared with macmillan, and I would have a meeting to discuss my holistic needs. I have heard nothing since! To be honest, with the help of family, friends and the wonderful ladies on this forum, I have come to terms with it, and accept I have to be flat til my reconstruction in a year. But if I hadn't got a support network, I am not sure how I would have coped.

 

Good luck with your continued recovery

Jane x

Member

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

Hi all

 

Just jumping into this thread as I had a single right side masectomy with immediate reconstruction (DIEP, using my tummy tissue) just last Weds so it's all new to me and I'm still dealing with the emotional and physical scars that it all brings.

 

I just wanted to ask Carol Lina if your surgeon has recommended you speak to a psychologist as part of the process?  My plastic surgery team (I'm seeing them as I was having the DIEP reconstruction) insist that women see their psychologist to discuss the process and to check that they are ready emotionally (or as ready as anyone can be).  Although I'm not sure this is only if you are definitely having a reconstruction.

 

It might also be worth asking if your hospital has a 'show and tell' evening for reconstruction options where you can meet other women who've had the different reconstructions, see the work of the surgeons involved and ask any questions.  I went to the one at my local hospital just a week before my op and it put my mind so much at ease.

 

This really is a very difficult, distressing, emotionally hard time and there's so much information to take in.  I think the medical staff often forget that although they deal with this all every day, for us, it's a single major event in our lives and we haven't experienced anything like it before so need time to absorb, understand and accept it.  

 

I think I've been fairly positive throughout my process but it's been a rollercoaster as I was initially told I would only need a lumpectomy and things have slowly escalated into needing the masectomy.  And I have some very dark sad days when I get upset about how my body has changed and how exhausted, frail and vulnerable I feel.  And I let myself have those days because they are necessary.  I'm in the early stages of recovery post mx (its 8 weeks of rest after a DIEP) and I feel frustrated that I can't do the things I want as I'm fiercely independent and live alone, but I have to focus on the fact that the tissue needed to be removed to try and preserve my life.  

It's a tough road but I think most women who face it are incredibly strong, even on the most rubbish days.  So I hope you get the best advice and support you can Carol Lina to get the right results for you.

 

Wishing you and everyone else strength! 

Member

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

Hi Carol Lina,

 

I echo Helenann's words- I am not in the least offended either! I know exactly what Helenann meant- we all need to change our mindset about what is being carried out on us. I have used the word in earlier posts, when I was agonsing over my impending mastectomy. It is how I felt too. But what we need to hold on to is that this is not a healthy part of our body that we are having removed - it is diseased. When I went back for my results my bcn told me that, although my invasive tumour had completely gone, the dcis was still obviously present. There was 4cm of these pre-cancer cells, now completely removed from my body, and my nurse said it was a ' nasty breast'. That really helped me to alter my mind set, and this is what you will need to do too (though we all completely sympathise with how difficult this is). Remember I am writing four weeks after the surgery and I feel so much better psychologically than I did for the two weeks before surgery and the week after.

 

Love Jane xx

Member

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

Hi Carol  Lina - please dont apologise - I doubt anyone is 'offended' - I'm certainly not offended at all - I just thought it might help you to think of it in a different way. So please don't worry - you have enough to cope with without wondering if people take offence.(I hope I haven't made you feel bad - that wasn't my intention at all).

It's good that you're getting on with work - it can be a distraction for a while.

Keep us updated with your 'journey', and know we're all here to support and help you in any way we can.

Sending you lots and lots of love.💖💖💖💖💖💖💖

Member

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

Hi Helenann, thanks for your words and please forgive me for using this word. Now I realise that It can be hard for you all, who already had mastectomy, to read it. I hadn't realised when I wrote it down. I am really sorry :-(
Member

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

Hi Jane, it's a good idea, I'll ask him if it'd help if he wants to delay it again. Many thanks :-)
I'm back to work, so I have less time to think (but I also have less time to reply. Sorry for the delayed ;-)
Member

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

Dear Carol Lina - I am really sorry for your situation - it's an awful time going through this - I wish I had the right words to say to make you feel a bit better.

Try not to think of it as being 'mutilated' - thats a very emotive word - try and think of it in terms that it is potentially a life saving operation. That is how I came to terms with it all.

You will be offered counselling after the operation but maybe you could ask for some counselling now - to help you get 'your head around it' all.

Maybe a second opinion might help you as well - I know it's delaying everything again - but it is so important for you to know that this is the right thing for you.

Jane makes some very good points and writing a letter seems like a good idea - especially if you get so upset when you have to talk about it.

Good luck - sending you lots of love.💝

Member

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

Hi Carol Lina

 

 I think they are worried that, because you are so upset, they can't be sure they have 'valid' consent. To have valid consent, you have to understand what you are agreeing to, and maybe they think you don't and will later state that you hadn't realised the extent of the surgery. However, as we ladies on here realise, we haven't got a choice as it is life-saving treatment.

Have you thought about writing a letter to the consultant, explaining that you completely understand that the surgery is essential and that you do feel emotional, hence you can't prevent the tears, but you do consent to the treatment advised? If you sign that, and that letter is put with the consent form, then I am sure that that would be sufficient for you not to have the treatment delayed again. Psychologically, I think it can only make it worse if they keep changing the date.

 

Love from Jane xx

Member

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

Thanks, Helenann

My husband is always with me and he speaks English enough to understand everything. Even I can understand, but they really told me they will try to arrange a translator, so they can be sure I'm "happy" with the surgery. I think that the problem is I can't talk normally about being mutilated. When we start to talk about it I can't avoid crying. They'll never see me calm with this situation, I hope they realise it soon :-(

First they booked an appointment to Thursday. Now they rebooked to next week, can you believe?

They also time I can be referred by them to another hospital if I want, but I don't want to delay even more and I don't know other hospitals. I think that I'm at the biggest one of the region.
Member

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

Thanks, Jane. I can't understand why too :-(
Member

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

Thanks, pastasmissus. I'm glad that you haven't any problem because of the axillary clearance. Good to know that not everyone has problems after the procedure :-)
Member

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

Hi Carol Lina - I am so sorry for what you are going through. It must have been very difficult for you when they cancelled your operation.

I had a mastectomy on 24th September - my right breast. As i've told you earlier in this forum I did have an immediate reconstruction with a tissue expander.

I was extremely upset and traumatised when I was given the diagnosis - i think most of us have felt that way - so you are not alone in being so afraid.

All I can say is that there are so many of us here who have gone through it and with eachothers help and support we have coped.

Do you have someone to go to the appointments with you - you have said previously that your English is not wonderful - so maybe take someone with you who speaks your language (I don't know where you're from) and also speaks very good English. It might be that some things are being 'lost in translation'? 

When do you go back to speak to the consultant?

Good luck - we're ALL here for you - any time night or day.💖

Sending you lots of love and hugs.

xxx

Member

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

Hi Carol Lina

 

I really feel for you. I was, as I have said many times on this forum, completely traumatised at the thought of the mastectomy. Other than that, I had been very strong and accepting of the rest of treatment. I cried when they told me the diagnosis, and there were tears at home or with friends, but in the hospital I was generally upbeat and positive. But the mastectomy was a really big deal to me. 

I had phoned them and saw another surgeon, who insisted that mastectomy without immediate reconstruction was the correct treatment plan. That was ten days before the operation. Luckily I went on a pre-planned mini-cruise with some girlfriends the following weekend, which took my mind off the operation. But when I returned I was in tears on and off from the Sunday through to the Wednesday of the operation. I cried when the surgeon came to meet me before the surgery and I told him how I felt, that I didn't want it and if there was any way I could avoid it I would, but I knew I had to go through with it.

So, in summary, I would say that I made it very clear how absolutely horrendous this part of treatment was for me, and I didn't want it, but they went ahead because I told them I accepted it must be done, and I signed the consent. I don't understand why, if you are willing to sign the consent form, they would delay it. It is only prolonging your agony, I would say. Intellectually, you know what you are agreeing to. 

I hope it is rescheduled soon. You need to have it done, and the sooner it is done, the closer you are to a reconstruction.

 

Thinking of you

Jane xxx

Member

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

Hi Carol Lina

 

I really feel for you. I was, as I have said many times on this forum, completely traumatised at the thought of the mastectomy. Other than that, I had been very strong and accepting of the rest of treatment. I cried when they told me the diagnosis, and there were tears at home or with friends, but in the hospital I was generally upbeat and positive. But the mastectomy was a really big deal to me. 

I had phoned them and saw another surgeon, who insisted that mastectomy without immediate reconstruction was the correct treatment plan. That was ten days before the operation. Luckily I went on a pre-planned mini-cruise with some girlfriends the following weekend, which took my mind off the operation. But when I returned I was in tears on and off from the Sunday through to the Wednesday of the operation. I cried when the surgeon came to meet me before the surgery and I told him how I felt, that I didn't want it and if there was any way I could avoid it I would, but I knew I had to go through with it.

So, in summary, I would say that I made it very clear how absolutely horrendous this part of treatment was for me, and I didn't want it, but they went ahead because I told them I accepted it must be done, and I signed the consent. I don't understand why, if you are willing to sign the consent form, they would delay it. It is only prolonging your agony, I would say. Intellectually, you know what you are agreeing to. 

I hope it is rescheduled soon. You need to have it done, and the sooner it is done, the closer you are to a reconstruction.

 

Thinking of you

Jane xxx

Member

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

With sentinel node biopsy, they use either blue dye or radioactive tracer or both to identify the lymph nodes. It usually picks up 3-4 but may pick up more. If it picks up more, they have to remove them. I had a lymph node picked up by radioactive tracer some distance away from my sentinal nodes, so they removed it. Obviously they couldn't ask me for separate consent, as they didn't know what they were going to find until the operation was underway. I had to go back for an axillary clearance, and had 22 lymph nodes removed in total. So far no problems post-op.

Member

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

Good morning everyone, I hope you're getting better and feeling better :-)

They postponed my surgery. My doctor thinks I'm not emotionally prepared to have surgery or he's afraid that I haven't understood what I agreed with. I'm not working anymore, since I was going to have surgery tomorrow. Now I'm more anxious and alone at home. They are driving me crazy. Who can feel well in this situation? Not me for sure. All the time I go to hospital I'm told someone different. I can't help and start crying. Now it seems I should contain my emotions and smile while they explain how they are going to cute me, so they can believe in me when I say that I agree with the surgery. It's been a nightmare that never ends.

Sorry for telling you this, ladies. I'd like to how you felt before surgery. We're you strong enough on that time?
Member

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

Hi kathyx - I just want to thank you for posting such an encouraging and positive post about your experience 30 years ago. Very helpful. I wish you all the best following your recent lumpectomy.

Evie xx

Member

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

Hi Carol LIna,

 I have responded to your private message but also some of your questions here could help other ladies so I will respond publicly too!

As I told you privately, we are not being treated at the same hospital. Obviously, some consultants will share the same view, but unfortunately we live near hospitals where the surgeons don't like giving temporary implants.

I don't have any problems with where they took out the extra six nodes. I have been very careful to do the exercises recommended, four times per day. I don't have any limitation in movement or any cording. Sometimes I do think, goodness, I consented to a sentinel node biopsy, and mastectomy, and they said four nodes would be removed, and they actually took an extra six nodes without consent. But then, what could they have done. If they opted not to remove them, I would have needed another operation. If they had just taken the four nodes, but weren't sure, they could have left sentinel nodes in situ, which could have been cancerous. So I just have to think, I have definitely not got cancer in my nodes!

As stated, I am recovering well. I do have to heal before radiotherapy. I think it looks fine, but it is up to my oncologist, whom I hope to see soon. I wish I could just get on with it!

 

Best wishes

Jane xx

 

Member

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

Hi Jane, thanks again for have told me about knitted knockers. I sent them an email few days ago and they put my order as an urgency.

I'm wondering if we have been treated at the same hospital due to the similarity between what they say to you and to me and now I'm afraid they will take more lymph nodes than they need like they did to you. Do you have any kind of problem because of that?

They decided do all together (sentinel biopsy and mastectomy) last week. Before that they'd do the biopsy at first. I think they want to finish the surgery as soon as possible because they can see how miserable I have been, but I'm not sure if it's a good idea. I'm not sure what I'm going to tell them tomorrow.

How are you recovering from surgery? About radiotherapy, the wound needs to be healed before starting?

Thanks for everything and big hug :-)
Member

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

Hi Evie, thanks for your tip about the implant. I'll ask them tomorrow about that.
Member

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

the biggest thing is post-op you will get tired alot faster than you expect to, and this will go on for months, gradually getting better. But it will be 3-6 months before you are back to 'normal' energy levels. It doesn't necessarily mean your life will be really restricted, but you will find yourself having early nights instead of going out!

Member

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

I had a mastectomy 30 years ago with a LD reconstruction and the result was excellent - I've been told by many people that this is the most successful (cosmetically) type of reconstruction. I've only just needed to have the implant changed (done at the same time as the lumpectomy on the other side) and I've now had it for more than half of my adult life - I can't really remember looking any different.

 

Good luck!

Member

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

Thank you for sharing your experiences, it's really encouraging to hear that everything went well for you and that your recovery times were quick.
I don't drive and I live only 5 minutes walk from work so at least I don't have that to think about. I'm a Receptionist at a Business Centre so I don't have any heavy lifting or hard labour to do so I'm lucky in that aspect. Also they've been very understanding at work and my boss has said that I can go back when I'm ready and that I can go home early when necessary, especially as it's usually so quiet on the run up to Christmas. I'm so lucky and I count my blessings every day that I have that kind of support around me and that I've been well enough to work throughout my chemo.
I guess I'm just a little apprehensive about my op as I've never had one before and I don't know how my body will react to the anaesthetic. I felt the same way before I started chemo so I guess my body can take more than I gave it credit for.
Thank you again ladies xx
Member

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

Hi Iamstillme (first of all, I love your name on here, so true)

 

I had the same operation as you, except that I also had an implant at the same time, about 18 months ago so I'm happy to answer any questions for you if I can. My surgeon told me that my recovery time would be the same as if I had not had an implant and had "only" had mx and node clearance.

 

My op was 5 weeks after my last chemo injection, so 14 days after the 21st day of the last cycle - so similar time to yours. My rads were then 5 weeks after the date of my op. The first week was the hardest but after that  I seemed to recover relatively quickly. I'm not brave so may have taken longer than I should - I was scared of doing anything at first, but soon realised that I could do more than I thought. I think I was driving again after 3-4 weeks - you will need to wait for your surgeon to sign you off and allow you to drive again for insurance purposes. It is very important that you do the arm exercises they give you, I am still doing them 18 months later to stop it getting stiff during the day.

 

I suppose it will depend on your job and how physical it is as to when you can start working again. Radiotherapy was tiring, but mostly because of having to drive to the hospital every day for 3 weeks. If you managed to work through chemo I am sure you will be back on your feet very quickly - I found it impossible to do very much at all during chemo.

 

Please feel free to ask any questions at all, happy to help if i can. Sending you very best wishes for your op on Tuesday and for a quick recovery. If/when you feel up to it do let us know how you get on.

Evie xx

Member

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

Hi Carol Lina

 

It really does seem that different surgeons/hospitals have different opinions about reconstructions and radiotherapy. Like you, I was thin and my only option was an implant. If you really feel strongly about it and can't face being flat, I would suggest you ask your surgeon/consultant about a "pre-pectoral implant in a Braxon sling". That's what I had, at the same time as my mastectomy, and it is supposed to reduce the risk of damage from radiotherapy. It is relatively new and I'm not sure all surgeons do it, so it's definitely worth asking about. The implant goes on top of your chest muscle, rather than underneath, and is supported in this sling thing which binds to your own muscle in time.

 

But equally, Jane has written some great positive messages about her experiences of being flat afterwards.

 

Sending you strength and hugs as you go through this - remember you are not alone and we are all right there with you whenever you need.

Evie xx

Member

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

I started driving short distances 2 weeks post mastectomy with SNB. However, I wouldn't have been up to working until 7 weeks post-op because I am a doctor and need full concentration and thought processes all the time! I found I was quite tired and needing a liedown in the afternoon. Also it took me 2 weeks before my brain could concentrate on reading detective novels, never mind anything more heavy than that.

So I think it depends alot on the actual job you do - I know people who have gone back to work 2 weeks post-op, others have been off 6 weeks.

Hope this helps

Member

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

hello Iamstillme,

 

I haven't had exactly the same surgery as your planned surgery but I will share my experience if it helps.

I had my surgery exactly three weeks after my last chemo, so yours isn't unsually early. It states in the literature that it is good to have it around this time, as your white blood cells will have replenshed, so you are less likely to develop infections post-operatively.

 I had a mx and sentinel node biospy ( though they took ten nodes rather than four as the dye had tracked further than the sentinel nodes due to a delay in my surgery, and they couldn't identify the sentinel nodes). I felt little pain after the surgery. I didn't need oramorph, just managing with ibuprofen and paracetemol for three days and then paracetemol for another seven days, twice per day. No painkillers have been needed since. There is discomfort, but not pain.

 I carried out the exercises recommended. After week one, you do exercises involving lifting your arm up the wall etc, and I would say I had full range of my arm back quickly, though I would say it is slightly uncomfortable at full stretch. I drove again after ten days ( short journeys). You may need to ask your insurance company about this and you have to feel able to do an emergency stop. I felt fine.

I am off work til January, as I was hoping my radiotherapy would be done and finished in December. This now seems unlikely so I am going to try to work through it as I will have to go back then. I am a dentist, and I wouldn't feel able to confidently work yet, in case I had to eg extract a tooth. However, I don't know what your work entails. If my work wasn't so physical I feel I could easily work at the moment. I would have definitely felt I could have worked by two weeks after the operation. I have been carrying out light housework like dusting, and I was cooking the day after the operation ( I wanted to feel useful and there was no problem with chopping ingredients etc).

 I must stress though, that everyone is different and other ladies will have had different experiences, For example, you worked through chemo, but I got neutropenic sepsis after my first chemo, and was in hospital for five days. So, like all cancer treatment, you have to listen to your body,

 

My very best wishes
Jane xx

Member

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

Carol Lina

Firstly, please don't worry about not being here for me. The thing about this forum is that we support others when we are strong and accept support when we feel weak. You are having a really hard time and you need to use your reserves of energy for yourself at the moment You will feel strong again .

When you order your knitted knocker, make sure you tell them when your operation is. I told them, and they rushed it through as urgent so I got it in a week! 

 Although one surgeon said my skin won't stretch for an implant in future ( after radiotherapy), the surgeon who did the mastectomy said he wouldn't rule out doing an implant after radiotherapy so I will have to  see.

I am definitely having radiotherapy. I need to see oncologist again, then have planning appointment, then it will be end of December or early January.

They said the reconstruction will be in a year. I am not sure if they mean a year from surgery or from radiotherapy. I can have discussion appointments before that. I will ask the oncologist about this timescale though, as I know others have had it sooner, and the sooner the better I feel!

 I do really feel for you Carol Lina. I felt exactly as you do- slightly desperate and frustrated as you know other hospitals are giving ladies temporary implants or expanders so that they don't have to be flat, but my hospital and yours don't want to. I am not sure what the answer is. I just accepted it in the end, and now very much feel, it's gone, the cancer has gone, and I look fine with my knitted knocker and mastectomy bra on, and it is temporary. But I reached this point with a lot of talking to my friends and family. Make sure you have support whether that be friends and family, counselling with MacMillan or this forum.

Good luck

Jane xxx

Member

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

Lamstillme, I'm sorry you're going through it and I'm sorry I'm not able to answer your questions, but I'm sure other ladies here can help you. Big hugs to you.
Member

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

Helenann, Thank you very much for sharing your experience. As you said, to you and to many other ladies was told that they can put the tissue expander implant even before rads. Even my BCN told him it, but he told the radiologists don't like it because there are metal in it(I'm very confused about it). I have another appointment before the surgery and I'm going to ask about it again.

Thanks again, Helenann :-)
Member

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

Hello everyone.
I'm having mx & axillary node clearance on right side next Tuesday (Nov 20th) and have chosen not to have immediate recon as I'm due to have rads - altho my surgeon & onco said it wouldn't matter either way. I just finished chemo on Oct 26th (3xEC & 3xDocetaxol both 3 weekly) so I was kinda surprised that the op was so soon (5 days after the 21st day of the last cycle).
I think the biggest shock for me will be having so much time off work - I worked all through my chemo and don't ever use all my 20 days annual leave, which is probably a good thing as I can use the extra days left for recovery.
Can I ask for anyone's experience of recovery time? I need to prepare for my finances as I'm on a zero-hours contract and won't get paid after my 2 weeks leave is up.
Thanks in advance x And apologies for the long post x
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Re: If you had or are going to have a mastectomy

Hi Carol Lina - Everything is so difficult and confusing when you're first diagnosed and getting a treatment plan togehter with 'the team'. I was diagnosed with IDC back in August.I had a right sided mastectomy on 24th September - I asked my surgeon if I could have an immediate reconstruction and she told me that I could. We (me and the surgeon) decided on a tissue expander reconstruction. So when they removed the breast they put the tissue expander implant in at the same time. It's meant I only had one area operated on - the surgeon even managed to get the sentinal node using the same incision (This was for for a biopsy to check the cancer hadn't spread beyond the breast). I have been going weekly to have the expander filled with saline. It is now at the right size, so I don't need any more saline added to the expander.

I will have to go back in about 3 months to have this tempoary tissue expander replaced with a permanent silicone implant - so will need another opertaion - but nothing as big as the mastectomy operation.

My surgeon said if I need radiotherapy it could still be done with the tissue expander in place - as it is only a temporary one to stretch the skin ready for the permanent one in the future.

It seems surgeons have different views on this as I know a lot of folks on this forum are in the same position as you where the surgeon doesnt want to do the tissue expander until it is known if radiotherapy is needed.

I guess its also because all our situations are unique, so our treatments will be tailored to what is best for us. I think if I had needed radiotherapy it would have been to under my arm - so away from the implant - maybe your's might be needed in an area closer to the implant - that could be a reason for not doing it straight away?

I don't think my tissue expander has any metal parts in it as I asked about going through airport security when we go away next week, and I was told it would not set off any alarms  (thank goodness). There is a valve where the saline gets injected into - but I think its all a sort of covered with plastic (?).

Good luck and I'm sure whatever is decided on you will be fine and we're all here with our different stories and experiences to help and support you whenever needed.

xxx

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

Jane, you're a lifesaver. I just have a look at knitted knockers since I wasn't told anything about prothesis neither about possibly mastectomy bra. When they start to talk about all the possibilities (none of them a good choice) I can't think straight and I can't remember to ask questions.

I am really glad that you're feeling better Jane. My mx was booked to December, but today they rebooked it to 28 November and I don't have even a prothesis. I'll try to remember, as you said, it's temporary and the part they want to remove is sick and it's better to get to rid of that.

I reread what you have said about the skin doesn't expand easily after rads. I'm terrified about it. They didn't told me anything about it and they already told me I'm too skinny to take kind of surgery other than the implant (and I don't want to have a bigger recovery time and more scars). The more I think about it, the worse I feel.

Are you having radio? Did they already decide anything about your reconstruction?

Sorry for so many questions and sorry for haven't been here for you after your mx :-(
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Re: If you had or are going to have a mastectomy

Thanks Evie, I will.
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Re: If you had or are going to have a mastectomy

Hi Carol Lina

 

I am sending you a really big hug to start with. Jane has sent some wonderful advice, I can't put it better than she has.

This chat was my lifeline while I went through treatment - so use it whenever you need to.

 

Evie xx

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

Hi Carol Lina

 

I am glad you have made contact as you were so distressed and I wanted you to take the support on offer from all of us.

I was in the same situation as you, in that they would not give me any temporary implant or expander, due to the risk of complications. I did feel really traumatised before the operation and for a few days afterwards. The policy is clearly different in some hospitals, as other ladies have been offered immediate implants when they are going to receive radiotherapy afterwards.

I promise you that it does get easier once the operation is over. Up to that point, I kept desperately trying to find solutions so I didn't have to 'go flat', only for each solution to be rejected. However, you will come to terms with it. I was surprised that I had little support from the staff- I only received one phonecall on the day after surgery, and I said I was traumatised, but there was no follow up phone call to check on the state of my wound or my state of mind! 

Here is how I got over it.

Talk to family and friends about how you are feeling ( if you don't have a large support network, you can phone Macmillan or nurses on this forum).

Remember it is only temporary.

You can choose who sees the wound- apart from yourself and the medical staff ( who deal with the appearance of post -mastectomies all the time), no-one needs to see it.

Get your knitted knocker and mastectomy bra ready- mine really does look amazing. No-one would know.

Remind yourself that they are not removing a healthy part of your body. It is diseased and they are saving your life by removing it ( I found that it really helped to keep reminding myself of this).

If you find yourself thinking, like I did, my body will never look the same again, remember bodies change all the time. If you diet, your body weight reduces and your shape changes. If you exercise, you build muscle. When you are reconstructed, you wil have a nice new breast, and I have been told that my healthy breast will have some work too, so I think I will probably end up with better breasts than the average 51 year old!

I hope today's meeting goes well.

Remember, all we ladies on here can completely empathise with you, and will support you through this.

 

Best wishes
Jane xx

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

Chocxie, Janie, Evie, helenann, bazzies, I really appreciate your answers and I really sorry for haven't replied before. I just started working a lot so I wouldn't turn myself crazy. Write in English is so hard to me that I couldn't find time to answer before be very sleepy after work.

I'm in the same shoes as some of you. Today my doctor told me I'll need rads (he said before probably not) and because of that he wouldn't be able to make reconstruction at the same time the mx. My nurse asked him about the spander(?), But he told it's has some kind of metal(?) On it so it's not good to have rads. I wasn't prepared to that since he made me think it would be easier and I wouldn't go home flat, so I started crying so much that they booked another appointment to discuss my options tomorrow.
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Re: If you had or are going to have a mastectomy

Evie, thank you so much. I'm happy that you're fine with your new normal, as you said. It's what matters, how we feel about ourselves. :-)
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Re: If you had or are going to have a mastectomy

Susie, I hope is everything going well with you. How was the surgery yesterday? What did you decided? I'm at the same position as you and know the feeling :-(
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Re: If you had or are going to have a mastectomy

Jane, I am really, really sorry for didn't have replied you before, as you answered me just one day after your mastectomy and was feeling down. I'm really sorry. I haven't replied anyone for long time because I have been working over time so I don't have time to think about it. In the evening I usually feel bad and go to sleep pretty early.

How are you coping now? How are you in general? How is going your treatment, doing radiotherapy?

I'm very greatful for your tips about the prothesis. It's really helpful and I'm glad they were able to do them for you in time. Also their card made me cry as I know how it's important for us and how good heart someone needs to be to do that for free. When this hard time finish to me I'll find a way to make people like us feel at least a little better too.

I wish you a quick recovery :-)
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Re: If you had or are going to have a mastectomy

Hi
I had an mx on 24th September too, but without reconstruction because of the chances of reconstruction. My initial reaction was that I wasn't bothered about reconstruction; as long as I was alive, that was all that mattered. However, my wonderful surgeon has done skin saving surgery because he was sure I would feel differently afterwards (I'm fairly young).
I had my softie from the hospital to begin with, but I've now been fitted with a proper prosthesis and it looks and feels fabulous. I braved it out and went for a bra fitting the day before I got the prosthesis and I'm so glad I did, I am down a band size and up a cup size to the size I normally buy and it's made such a difference.
I still don't know if I'll have radiotherapy, waiting for a medical trial to decide, but should know quite soon. If I do, I can have reconstruction and DIEP after a year, but I'm very happy at the moment.
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Re: If you had or are going to have a mastectomy

Hi Carolina & SusieQue

 

I am 7 wks post op has mx & node clearance left side.  I has immediate recon with expander implant, I am due to start chemo 19 th followed by rads a S hormone therapy.  My consultant was happy for immediate recon as she knew I was getting married in sept.  I am aware thar rads can affect the implant but I didn’t want to get married flat.  Implant only option as told not enough flesh to do diet etc.  My mx was a skin sparing one with loss of nipple.  It’s a fab job amazing small amount of scarring, I didn’t have right side match ( I was asked but thought enough going on without that).  I am not symmetrical but no one would know when I am clothed.  I have the option of this at later date and same with nipple being tattooed.  Hope this helps I don’t regret this decision, I do think different surgeons have differing opinions but your mental well-being is important too.  Remember it’s your journey Hope this helps hugs to you all 🤗

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

Hi Carol line and Susie que - Sorry for not noticing this thread sooner.
I had a right mastectomy on 24th September with immediate reconstruction. I have a tissue expander, which is in a protective mesh (?) Sling. I was told this could be done and wouldn't interfere if I needed radiotherapy- as it can be affected by rads but it's a temporary implant so could still be done. So after surgery I wasn't completely flat and still had a 'boob' shape. I've been going weekly having the expander filled and it's coming on nicely. Think I'll only need one more fill. Then I wait 3 months to have it exchanged for a softer silicone implant.
I didn't need radiotherapy in the end so can't say if that would have made a difference.
It's strange all the different views on this by the professionals, but we have to be guided by what they recommend.
Xxx
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Re: If you had or are going to have a mastectomy

Hi Susie

How did you get on with the meeting with your surgeon. I am particularly interested as I was in a very simillar position, I was told that mastectomy with delayed reconstruction was the only option in case I needed radiotherapy. They booked me in for the mastectomy of the left breast with removal of four lymph nodes thirteen days later ( 31st October).

I took it camly at the time and then felt totally traumatised. I phoned the bcn the following Monday and she booked me in to see a different surgeon. I had read on this forum about women having temporary implants when radiotherapy was planned, or having expanders to stretch the skin during radiotherapy. I said I was completly freaking out at the thought of waking ' flat'. The surgeon said she was not at all happy to give me a temporary implant as it had a 1 in 4 chance of complications,and if it got infected I could delay radiotherapy, and it could harden and have to be removed. I accepted this.

I then read about the option of an implant in a sling that protected it from radiotherapy. This was now two days before the operation and I felt it was too late to ring again. On the morning of the operation I was really really upset. I spoke to the surgeon ( who was a locum) who came to meet me just before the operation. I told him how I was feeling and that I would have wanted an implant. I got the impression he would have been happy to do so, but now it would delay the operation and he didn't want to annoy the other surgeons by changing the treatment plan. 
So I went ahead with the mastectomy. I was really traumatised for three days and couldn't look at it. However after I removed the dressing, I felt calmer and more accepting. I have a pretty post surgery bra and a knitted knocker and , clothed, there is no way to tell which breast was removed. I am completely symmetrical. I keep telling myself it is temporary. 

It has been very difficult though, and I am very keen to know what you have opted for.

Best wishes

Jane xx