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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

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
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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

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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