I’m 5 weeks into the diagnosis process at present and in a downward spiral.
Originally a 1cm tumour was found and an area of calcification in right breast - not clear at that stage if they were one and the same. Talked with consultant about WLE/mastectomy. Agreed to further investigations - biopsy of the calcification and MRI scan.
I heard the results on Thursday - not favourable. The calcification is pre cancerous and MRI scan found yet another suspect area so no chance of salvaging anything. Next is the decision on reconstruction.
However, the MRI also showed 2 anomalies in the left breast. Biopsies taken yesterday. Talked to bcn and thought it best to consider the double mastectomy scenario while awaiting results.
I’ve read the Reconstruction booklet, browsed the forums, and looked at some case studies the bcn had. My head is spinning.
My first difficulty is that the impression I get from the forums/case histories is everyone seems to have instantly instinctively known if recon / no recon was for them and been completely happy with the results. I feel so inadequate that I don’t have this instinctive response at all. It seems such a big decision to get wrong.
I suppose I’m thinking it’s a lot of pain to go through (I’ve never had surgery before and this is a huge fear that I’ve put to one side for the moment) and could end up with a grotesque recon and feel sad and desperate. But on the other hand no recon with a double mastectomy seems so much more of a big deal than a single.
My partner favours no recon because faster recovery and he says it will make no difference to how he feels about me.
I just have this feeling results are going to continue unfavourable, so it’ll be a double then the lymph glands will be found to be affected and the cancer spread. What would be the point of a fantastic recon then?
Above all a bit muddled and incoherent I know but any ideas on how to start to find my way out of this?
So sorry you are going through all this right now. I know it is a lot to take in and a lot of decisions to be made. At my hospital the Breast surgeon will offer you the options of immediate recon or later recon. If you choose later recon, he can then do the mastectomies, but leave relevant skin/muscle/veins etc. to enable him to do a later recon if you decide you wanted this. This option is often best if you are unsure. It makes no diffference to your treatment or eventual outcome and the operation will not take much longer than a straight forward mastectomy. Perhaps you need to have another long chat with your surgeon or BC nurse, to see what their protocol (and skill of the surgeon) is at your hospital. However, if you read through this site you will find that a lot of girls with poor prognosis - or even secondaries - still opt for recon as it makes them feel better about themselves.
My own situation is that I had recon when first dx, but then had a recurrence some 5 years later and had to lose the recon and another mastectomy, so I can see the picture from both sides. My sister also had double mastecomies and no recon and is quite happy as she can basically choose what size she wanted to be afterwards. It is sometimes easier to fit prothesis etc. when you had a double mastectomy as you don’t have to ‘match’ your other good side. I am quite ok about my ‘one boob look’ now - have found really nice underwear and swimwear and my husband is absolutely brilliant about my body, so no problems there.
Very best of luck with your decision.
Birgit
Hi Misha
It is difficult to take such a big decision and weigh up all the conflicting evidence. I think it might be a really good idea in your situation to give our helpline a ring. They are on 0808 800 6000 and open Monday - Friday, 9am - 5pm
Saturday, 9am - 2pm
Our helpline is a free and confidential service. It is run by specially trained nurses, we can help you make informed choices about what you should do.
As you say you have to make the decision in the end, but talking it through with an expert might help to clarify your thoughts.
Best of luck whatever your final decision and I hope you are finding the support on the forums some help.
Kind regards.
Louise
Facilitator
Hi misha,
Sorry to hear your story, it is very difficult to decide what to do.
I only had one side affected, my surgeon would not consider doing anything to the other as the MRI scan did not show anything. My decision to have a recon. was easier because I didn’t think I could cope being lopsided. I was lucky to be able to have the mx and immediate recon. (LD flap without implant) as the sentinel node dissection showed no node involvement.
I don’t know what I would have done if I had both sides done. I think I would be able to adjust to having none better than just one, but who knows.
The op itself although long (8 hours) was not painful, a bit uncomfortable to start with, but I managed on only paracetamol as I hate taking strong medication if it is not really needed, and had no problems.
You may be better having the mastectomies, getting over those and seeing how you feel. Recons can be done at any time afterwards and it gives you more time to consider the options. Your thoughts will change as time goes on and you come to terms with what has happened. Give yourself time and check out some more websites.
Good luck
Hi Misha
Before you know if you are going to have an immediate recon or not a sentinal lymph node biopsy would have to be done to check there is no spread into your lymph nodes. The advantages to an immediate recon are that the result are, usually, far better than a delayed one because they can save more skin, you only have one major op and you are never left without a breast mound. You are going to have to have an op no matter how you might fear it and 2 hours feels the same as 6 hours when you are asleep. I had an immediate DIEP and I didn’t feel pain afterwards just some discomfort when trying to get up and I considered a few weeks out of my life recovering was a small price to pay. Make sure you have a good plastic surgeon and you will have a good recon.
What ever you decide to do make sure you are having it done because you want it, not for your partner or anyone else - you have to live with it.
This is a terrible time with so much to take in and I hope that whatever decision you make it is the right one for you.
Thanks everyone for the info - this was my first posting and I wasn’t sure if anyone would respond. I now appreciate how valuable the support is on this forum. It has been a real boost to me today. I’m giving myself a day off bc tomorrow to work on my final assignment for an Open University course - a godsend to have something to take my mind off all this.
Thanks again everyone for your helpful words.
Hi Misha
I welll remember the totally overwhelming feeling when faced with the decision to have a recon or not. |That was three years ago. I agonised for about a week -talked it through with my husband and with two very supportive friends; talked to the bcn and the surgeon and looked at pictures of reconstructions which he had done; and endlessly surfed the net.
In the end for me I chose to have the recon - in an attmept to get my life back to normal as soon as possible. I had the operation (mastectomy +_tram flap recon + reduction on the other side) in June, started chemo in July ; went back to work in September; finished chemo the following February; started tamoxifen which is what i am still on. I have absolutely no regrets. I have never felt that i have had a mastectomy - the recon is so realistic.
All the very best in your decision making
K
Hi Misha
I was dx in Jan 2005, had WLE followed by mx 5 weeks later as the margins weren’t clear. When I got my results and heard that I needed a mx I discussed having an immediate recon. I wasn’t sure about it and felt that I wanted to deal with the cancer first and then make a decision about the recon. I didn’t make that decision for 2 years. I did some art work - self portraits- as a way of helping me come to terms with my body shape, but what happened was it helped me decide to have the recon. I had a diep flap last Oct 07. I am delighted with the results and so glad I had it done. I no longer have that visual reminder of having had bc, and I feel more balanced, less lopsided. I can’t comment on how it feels to have a double mx.
I too had a fear of surgery - in fact the first op I had, when the anaesthetist asked me my name in pre op i just burst into tears because I was so scared. I didn’t take the decision to have the recon lightly and was tense and anxious before it but my need to have it was greater than my fear of the op.
Take care and let us know what you decide to do
fantan
Terri,
Just rereading your comments today and see how wise they were. Things have moved on in the last 2 weeks. The bad news was a pre cancerous area has been found in my other breast so after a long discussion with consultant I have accepted a bilateral mx is the safest option. This has changed my views on recon somewhat - I think I would have felt “intact” keeping one breast and may have decided to delay decison on recon. But I think it would be too hard for me to adjust to having nothing there so have asked for immediate recon if possible.
To work out my options, consultant suggested a sentinel node biopsy. I went into hospital for that last week and results today are that nodes on both sides are clear. What a relief. The added bonus is that the snb under anaesthetic and overnight stay in hospital has really helped me put fear of the operation in perspective. Obviously it was not a pleasant experience but I came out the other end and know what to expect next time.
We are down to 2 reconstruction options (implants with expanders or LD flap) and I have a week to research and consider it all before a meeting to decide and the op will be at end of May.
Thanks for your reply.
Misha
I had a mx in March. It is a very personal decision and I took my time over it. I recovered really well and quite quickly after the surgery and so I wondered if I should have had an immediate reconstruction. Part of my decision to delay or go without was that I had to have radiotherapy and my Onc said that an implant could harden, the Breast Surgeon said it would be alright but the Plastic Surgeon give me the statistics as to the percentage of implants which need replacing after radiotherapy over 1 - 5 years. At that point I decided to go without for a while, but my body shape means that I do not feel massively lopsided. With a good prosthesis and bra I can wear quite tight T’s and still feel confident.
all the best
Pauline
I wavered about an immediate recon but my ex and my teenage/adult kids were sure it would be better for me psychologically than being lopsided. My wonderful plastic surgeon gave me all the info and reassurance I needed on own-tissue recon, I definitlely didn’t want synthetic or saline implants, and I am thrilled to have had an immediate DIEP recon at the same time as mastectomy and axillary clearance, no regrets at all (and a flat tummy as a bonus!). It was an 11 hour op but if you’re asleep it doesn’t matter! I had 11 days in hospital, was signed off work for three months initially but now I’m having chemo it’s going to be longer, and taking time to recover properly is the priority. They were right, looking ‘normal’ in clothes is an issue and I’m sure it has helped me. Good luck whatever you decide. Lyn xxx
Hi
I had a bi lateral mastectomy in March 2007 and was advised by a surgeon friend to do nothing for 18 months, get all the chemo, rads etc out the way first and be fighting fit before making the decision. I asked my breast surgeon at the time about reconstruction and he too said wait 18 months. 18 months will be up in July and I have now come to the conclusion that I don’t want or need a reconstruction. I do not wear prosthesis and just wear a vest from M&S. I feel very happy!
Sharon
I should have said that I feel balanced. I think if I had only had one breast removed I would feel lopsided and would then go for a reconstruction!
Sharon