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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

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

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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

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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.
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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
Member

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 :-(
Member

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

Thanks Evie, I will.
Member

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

Member

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.
Member

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 :-)
Member

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

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

Susie - hope you had a useful and productive meeting with your surgeon today. 

Evie xx

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

Susie - sorry I missed these earlier, I have just replied to your PM. Hope that helps and sorry I have repeated some of the advice I already put on this thread. I'll watch out and answer any more questions you have. Evie xx