What a mess I've made of everything-what should I do?

Hi all
I shall try to keep this brief but I would really appreciate any advice.

I am 38 with two young children.Last year , after three WLE’s and opp’s I was diagnosed with DCIS. I had to have a mastectomy and had a temporary tissue expander . This was with a view to having the DIEP later. My date came through for this DIEP and all went well until two weeks before the op. I got real cold feet about the whole thing and was just too terriefied to go through with it.

I am just terrified about the whole operation and recovery time. I have very few people to call on to help and as it is struggle at times with my family ( my own Mum died of cancer and dad died shortly after in RTA). I have no idea how I can manage the recovery time…

Stupidly I couldn’t face explaining to the hospital that I was so scared and only rang a week before the op. They were very cross and I don’t think they’ll treat me again.

But, I’ve been told that my tissue expander is only temporary so I have to have something.

WHAT A MESS!

Freddie
You havn’t made a mess-youve had a horrible experience that puts everyday problems into the shade, so dont be so hard on yourself.
Its completely understandable about your second thoughts-I believe we should always listen to our instincts.
If you feel you want to re-book for the op, why dont you take someone with you to make it less daunting.
As for the childcare/support issues, it may be, dependant on your childrens ages, that you would qualify for Surestart places at either a nursery or childminder. Do you have contact with your health visitor who may know whats available locally. There is also a poss of support via social services in such a situation (dependant on budget of course :frowning: )
Hope this helps, and do take care of yourself
Cathie x

Hi Freddie - I remember you well from last year… I’m sorry to hear that you are currently feeling so bad… Please believe me I’m sure you can’t be the only person to have had cold feet about an op… {{{hugs}}} I would book an appointment with your gp and try and see how they can help… If you are now so worried about the diep op is it at all possible that you could have a more permanent implant op instead that would have less recovery issues…? As you say something will need to be done about the current expander and i’m sure your gp will know if there is a chance you could switch to another local hospital or something like that… I would also phone the helpline on here and have a chat with someone…

Sending you loads of love and hope you can get something sorted…

Theresa x

Hi there - just wanted to give you some support. I’ve no experience of implants etc, but the hospital should not have been cross with you. You have a complete right to change your mind and should only agrre to surgery when you have all the information.

I think a week’s notice was fine. You need to speak to someone about the surgery and what your options are now and how long you can be as you are without having anything else done. Do you have a decent bcn? or telephone the helpline here.

Hugs to you

Clare

Hi all

Thank you everyone for your advice.All the words of wisdom are so great.

I think part of my fear was due to the fact that I wasn’t entirely sure of the surgeon. She has an excellent reputation etc but we just didn’t ‘gel’ somehow.The hospital is so far away too I would miss my family so much. As suggested perhaps I should follow my instincts.Also I think my mind is trying to block out all the cancer issues and trying to pretend all is fine.

I do realise I was wrong to let the hospital know at late notice but I have since found out that they were able to fill my slot with someone desperate for the operation so at least someone somwhere would have been pleased I had cancelled!

Does anyone know how to go about finding alternative surgeons.

PS Thanks to all who’ve replied and Hi Theresa, so good to hear from you

xx

Hi Freddiecider,

What part of the country are you?
I had an immediate DIEP recon following a mx in oct 09 and recovered really well, back to work after 10 weeks (I’m a nurse) so if I can help in any way let me know. I do however understand the “cold feet” as I did have several episodes of the “wobbles” pre surgery but am very happy with the end result.
Big hugs,

Marjay

Hi there

I’m from the midlands.

I actually really wanted the mastectomy and immediate diep in the first place but was advised against it, in case they felt I needed radiation after the mastectomy and that culd have caused problems. There were also time issues i needed a mastectomy quickly but they said it would have been hard to get an appt for the diep so quickly too.

Wish i had have done though as it would have been one big op done and dusted!

Could i ask where you had it done?

Thanks x x

Hi freddiecider,

I am from Surrey and am under the Marsden.
I turned 50 last year and had my first routine sceening as a birthday pressie only to find out that I had widespread DCIS covering a length of over 11cm of breast tissue, there were also a number of areas - we stopped counting at 10 individual areas!! I was then informed that some of these areas may of turned invasive so had to have a mastectomy. I wanted immediate recon and was lucky to be offered that quite quickly. Dx late Aug with op on 13th Oct. Mx carried out by breast team and diep by really good plastic team who have their own idea of how they want the surgery to look.
My advice to you would be to explore the possibility of getting a really good plastic surgeon, one who you do gel with and discuss this type of surgery at length. Ask to see to see pictures of their work, talk about their results and see if there is a patient near by that you can meet and talk to who has been through this op. Yes it is frightening, a long operation time but the results are worth it. Apparently we are all entitled to have a second opinion on the NHS and I would certainly advise you to go for this. Speak to your GP or BCN.
Hope this is of some help, if I was closer would be happy to meet up and discuss but there will be someone neaby in a similar position to you who has had this op and would be willing to help you through this. Please speak to your BCN.

Regards and big hugs,
Marjay xxx

We’re all only human and who knows how anyone will react in a given situation. I would start by writing a letter of apology to the surgeon and your BCN and explain what happened. That way it is on record what happened and it’s wasn’t just some no show. Your reasons are totally understandable.

The reason they would have been cross is that they have to meet very strict waiting times and I presume this was going to be quite a long op so it’s not always so easy to slot someone in. You could have changed your mind on the day but you didn’t, you did give notice and they did find someone to fill the surgical slot.

I feel some onus lies with them as you obviously weren’t feeling confident and they should have picked up on that. Your right that it is important to feel confident in the surgeon, after all it’s your body.

If it were me, I would start by going to my GP and talking through with him/her. Explain what happened and ask your GP to refer you elsewhere. I had a problem with the first Consultant I saw, for similar reasons to you and my GP had no problem with referring me elsewhere.

I wasn’t sure if you were hoping to go to the same hospital or a different one?

It does sound as though there were a few issues going on: childcare, lack of confidence in the surgeon etc. Have you thought how you will address the difficulties with recovery time? it might be worth you ringing the helpline and talking this through with someone there first.

It isn’t a mess, so please don’t be so hard on yourself. The thing really is to talk all of this through with someone.

A big hug to you
Elinda x

Please don’t feel this is all a big mess.Remember its your body and you are in control now,unlike at diagnosis when that control is taken away.It is totally up to you whether or not you have the diep.Maybe you can have the implants replaced as that will be a much smaller operation.I am sure some expanders can be left in,maybe someone else will know.
A week is perfectly adequate notice to cancel,the person you spoke to was probably just grumpy as they would have the job of finding another patient.I am sure the patient they found was more than delighted to get seen sooner.
You need to get an appt to see your surgeon or BCN and tell them exactly how you feel,and find out what other options you have.Or can your GP refer you to someone else?
Big hugs
Dot
xxx

Hi Freddie
Please don’t feel that it is all a mess, to echo what has been said it is your body, a big operation and you have the right to change your mind. You have to be sure and to go ahead with it when you felt as you did would have seemed worse to me. I’m sure they have experience of women doing the same.Try to be kind to yourself-You are having a difficult enough time without feeling bad on top of it!

I had an mx and an expander, and my plastic surgeon and onc made it very clear that they thought a flap reconstruction would be the best option for me. However it wasn’t what I wanted (I’d had a year of treatment, was terrified of the operation, didn’t want more recovery time away from my young kids) and I was fortunate that they supported me despite not agreeing with me. It was made very clear to me that I had to feel comfortable, and it sounds like you have not had that feeling from your team. I’m in London so my NHS surgeon’s details won’t help, but I would definitely look for someone you feel comfortable with. I took ages to make my decision,and am still thinking parts through, and I know I must have driven then mad, but it is an important decision.
I had my expander replaced with an implant after RADS,a much smaller procedure, but I do know that some expanders can be left in as they are, with just the prot removed-so do ask about that.

Take care,
love C x

Hi

just wanted to say thanks to all those who have given such good advice.

I have listened and read and you have all made me feel much better. I have written a letter to my consultants and I have made an appointment to see my Gp next week too.

It is also very interesting to hear the different experiences people have had. Oddly during my journey so far nobody has ever suggested the implant option at all. If I opted for an implant now ( prefer idea of this as smaller op and less recovery time etc) would I still have the right to have a DIEP at a later date?

I am wondering why I have never been given this option?

Thanks

Pleased to hear that you’re feeling a bit more positive now. I can’t help with implants as I decided not to go down the recon route. I hope you get the answers you need on this.

take care
Elinda x

Hi Freddie

Yes, I believe you would have that option, I would ask the surgeons if that is true in your case. Certainly that is what I have been told, and that is exactly the decision I came to.

**I have just re-read what I have written below, and am afraid it is a bit long winded! I just wanted to try to include anything that may be useful while you are gathering information, so ignore anything that isn’t!**

I currently have only an implant.I had an expander immediately after mx, then a more naturally shaped replacement after Rads and a reduction to my other side to even them up.
This was replaced again recently and my surgeon said that I still have the option of having either an LD reconstruction plus implant, or possibly tram/diep flap at a later date (depending on best place eg thigh, stomach)which they would recommend.

These were the positive reasons put to me (originally and constantly since!) for recommending the flap reconstruction- that once it is done it lasts;for younger women (I am the same age as you)this can mean less surgery in the long term; gives a much better and more natural cosmetic result; and because it is from your own tissue it is less likely to cause problems -in the long term-such as infections etc. which may lead to replacement of implants. It won’r ‘wear out’.
All of those things are true, and I know lots of women who look fantastic, and are delighted with their own tissue reconstructions. For me it wasn’t what I wanted at the time, but I know I could have it done in future.
Having made that choice I accept that my reconstruction does look and feel like like an implant and has needed replacing, which was tough emotionally, but a more simple procedure, with a quicker recovery time. At the moment I am ok with it.I think my (male) surgeons find it difficult to understand why I wouldn’t want to look better cosmetically, but have been honest, understanding and supportive, and I really respect their views and professionalism in wanting me to have the best they can offer.(And their skills, what they can do is simply incerdible.)I am thinking I may go down the LD route in future as something inbetween.

I have a plastics appointment in two weeks, and will post on this thread after that if anything from that seems relevant.
Best wishes
Cx

Hi Freddie poor you it’s such a tough time to make these snap decisions I think you need to find a plastic surgeon that you feel confident in which is most important and most hospitals have a team of surgeons so you could get referred to another surgeon. Yes I am sure you could have implants and then have diep later especially if you need radiotherapy as the recuperation time is a lot shorter. Do discuss the issues of childcare with your GP and your PS as you may be able to get help with this. Take care.
Susie22

Hi
I had tissue expander using saline & it has lasted 10 years. It is only now that I need a replacement & this will be a silicone one. I am a lot older than you but was 56 when I first had a mastectomy & implant. For me I didn’t fancy more major surgery & have been very happy with the shape & look of the implant. I must admit that I am now apprehensive about firthur surgery but if it looks as good as the origional I shall be happy. The most important thing is for you to be happy with the treatment that is recommended.

Good luck