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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

Now I understand why they have said that if not clear margins of DCIS this time then they will have to do a mastectomy.  I didnt realise DCIS didnt respond to chemo.  Thank god for this forum and thank you Janie for explaining.  I am really hoping for positive results on Tuesday as I dont think I can take any more surgery

 

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

Carol Lina - a mastectomy can feel 'extreme' but I'd hope that the doctors are advising you on the basis of the size/type of the tumour that needs to be removed. If it is very large then a lumpectomy could potentially leave you with a misshapen breast, different in size and shape to the other one.

In my case I had a lumpectomy and they didn't get clear margins, so they had to take more. The 2nd op didn't get clear margins either and after that the surgeon was concerned that taking any more tissue would lead to a significant difference. And there was still some DCIS in place so there might have been even more in the rest of the breast which would have been dangerous to leave alone.

I really think you need to push to see a counsellor or psychologist to discuss your fears and anxieties. Your breast care nurse should be able to refer you to one but you will have to push and keep pushing for it.

It's also worth looking online to see if there are any local cancer charities that offer free counselling services. I did a Google search and found one in my area - I see a counsellor on a one to one basis there every week.

Often these services aren't offered to us but we need to ask and push, and make a nuisance of ourselves to get what we need.

I hope you can get the answers you need - if you're uncertain of what you're being told by the doctors then you could also call the Breast Cancer Care helpline who have nurses available, they might be able to explain terms or the likely reason behind the surgeon's thoughts on the need for a mastectomy.
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Re: If you had or are going to have a mastectomy

Hi Carol LIna,

 

I only had one surgery ( the mastectomy). The DCIS is not classed as cancer ( it is pre-cancer) with the potential to become invasive. There are three grades, depending how close they are to normally dividing cells. I had some high grade DCIS, and some low and intermediate grades ( so all three grades). There was 8-9cm of DCIS of these three grades, and the 4cm of high grade became my invasive tumour ( which was resolved with chemo). So I had the mastectomy because,, although all my invasive tumour was gone, the DCIS ( which my bcn called pre-cancer cells), is not treated by chemo- it can only be removed surgically, and as my DCIS was so big in relation to the size of my breast, they had to do a mastectomy. I am still having radiotherapy because tumours of 4-5cm have a slightly higher chance of recurrence, so the radiotherapy will hopefully prevent this.

Maybe some of the above may apply to you, and may be why they are recommending a mastectomy?

 

Love Jane xxx

Member

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

I didn't tell you all the changes which has been happening during my appointments because I didn't want to make you confused. It seems to me like my doctor is not sure what to do with me. It make even worse, all the time I go there I'm afraid about what I'll hear and I am never prepared for that because all the time I'm told a different thing. Sometimes I wonder if it's not too much to suggest a mastectomy(when they told me that, they didn't have even scan results). Don't you think it's a too agressive treatment? In my country it's not the "normal". I feel afraid one day to go there and a friend ask me why I left someone do this to me when they don't usually do there. It's proved(when it's possible to be done) that lumpectomy followed by radiotherapy is as safe as mastectomy. I'm feeling so confused. I'd like to be treated in my onw country, but as I gave up of my job there I no longer have health insurance :-(
Member

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

Hi Quaggie, welcome to the thread and thanks for your best wishes! No, my surgeon didn't tell me anything about psychologist. My nurse told me to look for help in some kind of group in another city and that's all. I can't go there and I'm not able to talk to a group(but here, where we don't see each other. I'm quite shy person). A psychologist from the hospital or GP, to talk only to me, I wasn't offered.

May and Jane, it's exactly as I feel and yes, it's normal life to the staff, but it's a big deal to us :-(
Member

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

Hi Helenann! Don't worry, you didn't make me feel bad, it's just that I realised that word could, not offend, but maybe hurt someone here. Thanks again for your support. It means too much for me ;-)
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Re: If you had or are going to have a mastectomy

Hi Chime, thanks! Did you get your lymph node results? I'm glad that you can cope more easily with it, as it's not easy to wake up everyday when you feel so bad about anything. I also told my BC nurse that reducing the risks of recurrence is my priority when she asked me, but it doesn't mean that I don't feel pretty bad about losing a piece of me, and it's not because of my sexuality or because of my husband, it's about me. I can't get rid of the the feeling of loss :-(
Member

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

Kath, firstly I'm sorry that you've been through it again. Secondly, thanks for sharing it. I'm so glad that your husband is so supportive. I'm am also lucky about it. I admire women like you, who can cope more easily with this kind of problem. Unfortunately, I'm more likely to see the negative side of situations than the positive ones :-(
Member

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 ;-)