Hi,
You may not feel it, but you sound really together, confident and strong - you have clearly gone through all the options, considered each one for the here and now but also the future, taking into account risks and benefits. Well done for not being swayed and being able to do this in the midst of unwanted cancer diagnosis and unhelpful input from people who are meant to make this easier for you.
You are not overreacting, this is not a ‘niggle’ and you absolutely need to have trust in your team. It is perfectly reasonable to ask for a different surgeon and no-one will treat you badly because you changed over. I didn’t stay with the one I initially saw for biopsy/mammogram. This wasn’t for any other reason than I heard great stories about the one I transferred to. I told my breast care nurse who I wanted my care to be with and she arranged the transfer very easily.
You may want to consider whether
transferring may delay any treatment. For instance you will need new consultation, new consultant may have longer lists/holiday booked. However, it may go the other way and they are able to see you quicker.
any difference in their care. The original doctor I saw used drains, the one I chose didn’t. This was another bonus in transferring.
to stay with him if he has good reputation and very experienced BUT be honest with him about your reservations/experience so far. Sometimes doctors are unaware of how they have come across, or meant to say that ‘some women struggle and find the scar ugly’ but instead comes across saying the scar is ugly… I am not trying to defend him at all and he needs to understand the impact of his words. If he reflects and acknowledges this, it may give you confidence to continue with him.
However, I remember how I felt pre-surgery and not sure if I would have wanted to pursue it or just move on with someone else…
Do you have a good relationship with your breast care nurse? She could be the place to start?
I’m really sorry you are having to deal with this on top of everything else and hope you get confidence in your team, whether this surgeon or a new one very quickly.
Big hugs
x
Thanks everyone. I spoke to my nurse today and she was very sympathetic. She actually suggested that I change surgeons before I even mentioned it. She asked me who I would like to transfer to, so I now have to think about that this evening and get back to her tomorrow! One more decision to make I feel like I’m all out of brain power!
I also went through a rollercoaster of a decision making journey when it came to my mastectomy now almost 2 years ago so thought I’d reply. It sounds like you’ve had a lot of support from ladies sharing their experiences. I went down the no reconstruction route (with the option for delayed reconstruction later, my experience shared here. But 2 years on I can safely say I’m happy with the choice I made. At the time I went for second opinions via private medical insurance (2 surgeon’s and a plastic surgeon due to a number reasons), but ultimately had my surgery done under the NHS with the surgeon that gave me my diagnosis. In the NHS trust I was treated at there were 3 surgeons who formed part of the team, along with 3 BCN’s. I saw one surgeon at the time of my original mammogram, but thereafter my case was handed over to another surgeon due to the original surgeon going on leave for a few weeks. They worked as a team so that if one member wasn’t available there was someone else available (all of them are involved in the MDT meetings that take place to review results and come up with treatment plans).
Perhaps it’s worth asking your nurse who the other surgeons are at your hospitals breast unit? Or if it’s at a different NHS trust then I guess would need some research to find out more about their breast team staff. Or if you are considering going private, then it may be looking for recommendations based hospitals near you. At the time I went for second opinions I asked a colleague who had been through BC before and also family in the medical field for recommendations. I totally get “being all of brain power” as I felt like that a lot, all the way through. It does get easier though. xx
I too was so confused and stressed over this decision. I am Her2+ on left breast. Undergone 6 rounds of chemo first. I remember saying to BCN how this was the hardest part as I had been given a choice that will affect my whole life and it felt like too much pressure trying to get it right for me. Whereas with chemo I was told this is what were having and off we go type of thing, no choice.
I swayed back an for all 3 of my choices. Going flat, skin sparring with tissue expander, followed by implant after any further rounds and radiation and also fat taken from tummy. I orginally thought flat, then changed mind to fat from belly to now. Being 2 weeks post surgery with having tissue expander in place with the view of having implant put in at later date and at same time my surgeon has agreed to remove my healthy breast an put implant in there too. This change in mind came from spending nearly 2 hours with BCN going through all 3 options pros and cons pictures good an bad etc of all the choices. I decided that the extra surgery site on tummy was too much for me as it meant a far bigger operation, with recovery time being longer and with a young family I did not want this. Similarly i decided not to go flat as i felt like I would be too conscious to go in a swim suit, swimmung with the children without the. Stress of a prosthetic popping out an therefore probs would avoid swimming which would affect our family greatly. This may sound like a silly reasoning but i was trying to think of all occasions about how i would feel about my body.
Being 2 weeks post surgery i am very pleased with the way things look with the expander an feel like as i kept my skin still looks like me. However i do feel like its still early days if it is the right decision as it is a very strange feeling which i hope will settle down and start to feel normal again. I worry about all the twinges, niggles an pain incase there is a problem and not just part of the healing process. I suppose only time will tell. I hope you are feeling a little clearer with your decision since writing this post as i remember how overwhelmed i felt during that time x
Just read further comments since writing my resoonse above. I am.so.glad BCN supported you as I found that having the team I have has definitely made things easier/better for me. My surgeon has been amazing through the whole process and never swayed me into any option and instead guided me towards more info through meeting with the BCN etc. I really hope you will feel more at ease once you have decided on surgeon. Keep us posted x
Thank you @brincat. I hope your recovery continues to go well, it must be such a worrying time when everything is so new! I don’t think there are any silly reasons to choose for or against reconstruction. Everyone has different priorities and comes at this from a totally different perspective. The main thing is that you feel it’s the right choice for you.
@TDG at such a worrying time all these ups and downs really take their toll don’t they? I’m so pleased that you are happy with your choice. I’ll read through your story now, thank you so much for sharing.
I asked for some recommendations via another forum and found that a few people had recommended the same surgeon, one who I’d already heard good things about, especially in terms of his compassion. My nurse is arranging an appointment with him for me. I just hope I’m making the right choice. But, as my husband keeps reminding me (during the several panic attacks I’ve had over the past few days), they are all experts and getting someone who is a good communicator, and with a better attitude to my choices, is really important.
Hi @mcsparkle
Just checking in to see how you are x
Went to see my surgeon on Friday. It was a really reassuring meeting and I felt he really listened to me and supported my decision to stay flat, he said having spoken to me he felt that was the right decision, and of course there is always the option later on of reconstruction (which at the moment I don’t want)
So just countdown to the big day I am pleased I have had these past weeks to process and come to my decision.
Xx
Sorry to hear about your diagnosis. I remember feeling exactly as you do. Be kind to yourself. I had 3 opinions and DIEP sounded so scary with very long recovery ( if not done by an experienced surgeon). I spoke to multiple people. You might talking to a charity called ( someonelikeme) extremely helpful. I was out through to 3 different ladies that had three surgeries ( flat, silicon and DIEP). Maybe try this first.
I decided DEIP was the best option for me. A top surgeon did my surgery so i am very pleased with the result. The first 2 weeks recovery were the toughest but after that it was all ok. I had family supporting me. Things to be aware of: the new boob feels numb so you will loose sensation even when the nipple spared. The abdomen skin is also numb permanently but you wake up from surgery with only minimal difference in the body.
You need a fat belly for this option. I have no regrets. Only you know what will be suitable for you. Dont be scared to make decision.
Remember when they take the breast tissue it will go for analysis’ so if you are planning to have a baby - go now to a fertility dr to fins out if they can freeze your eggs or make embryos before u have surgery. Talk to your surgeon early express if you want this.
I had my consultation with the new surgeon today. He was lovely and much more supportive of my decision to go flat. He listened to me and allowed me time to gather my thoughts when I got emotional.
He said it would be nice and neat and that he can always do revisions if needed but he didn’t seem to think he’d need to. He also said that the reconstruction option would always be there too. He made mastectomies sound very routine (as they are for the surgeons) but in a good way, like he understood it’s far from routine to me but he made me feel confident in his abilities. He said the majority of the women he operates on go flat, which surprised me but that definitely helped ease my mind. He couldn’t show me any pictures unfortunately, but he did look over the pictures on the flat friends booklet and talked through them. He said they’re all fairly realistic and discussed some issues with some of them (extra skin left, too much fat take, problems with scar, dog ears etc).
He said that it’s a mental recovery more than anything, which I fully expect. I’ve decided to stick with this surgeon! My surgery will be over a week later than with th original surgeon, but I feel much better knowing that the person operating on me understands and respects my decision! I also feel better knowing I can talk to him about future treatment too.
Thank you everyone for all your advice and support. I hate that so many of us are going through / have been through this! But it’s comforting to know I’m not alone
I’ve had a couple of really bad days recently. I let all my remaining friends and family, and clients know about my diagnosis over the weekend, so I’m wondering if it’s something to do with that? Like it suddenly feels very real?
I’m feeling completely sick at the thought of everything. It just all feels so wrong! Can anyone relate?
I can’t imagine living without a breast! I’m still firm in my decision not to reconstruct, either way I lose my real breast! And I know the possible risks of reconstruction are just too much for me personally. So it’s not about that. I just can’t seem to wrap my head around having to go through with a mastectomy and then live with only one breast. I can’t imagine how that will feel and I know it’s going to affect my mental health, it already is. My tumour sizes are small with lots of very tiny cancers (one surgeon called them calcifications, the other called them cancers) spanning nearly 7cm with no clear margins. I haven’t been given any other option than a mastectomy.
I don’t think it helps that most of my family and friends are acting like it’ll all be fine once the surgery’s over, and I can go back to normality afterwards.
@mcsparkle
I am really sorry you are having a tough few days.
Honestly I would be surprised if you didn’t have some of them at some point - it’s been a tough few weeks, and it sounds like although you have made your mind up to have a mastectomy, you are still worried about the emotional impact. You have a lot on your mind, and telling everyone does certainly make it more real and scary.
I found that post surgery, at least I could stop worrying about the operation and move forward. I hope that may work for you too?
I remember coming home from hospital, and my then 85 year old dad who had come to stay because he felt I may need help (I already had my husband and 28 year old daughter). He looked at me and said, so which one did they take then? That would be the side that’s flat dad Nothing like your old dad to bring you back to reality.
I feel no different with one breast than two. Most of the time I wear a t-shirt/sweatshirt and don’t bother with a bra, or wear a crop top to support my remaining breast but leave the other side empty.
If I want to look nice or going out, I have a few flexifit crop tops from M+S/sloggi, with my prosthesis in the little pocket (which you will be given about 6 weeks post surgery) and no-one would know any different. Well the prosthesis side does actually look better if I am truly honest, isn’t saggy and 59 years old.
I use the crop tops instead of bras as I find them more stretchy under my arm, around my ‘slight’ dogs ear.
would it help to access ‘someone like me’ where you can talk to someone who has gone through similar treatment and give you support.
what about counselling to help you talk through the challenges and changes you may face and strategies to deal with them? this may help you feel more in control and prepared?
Many people compare this time to a bereavement - the old you and old life doesn’t feel the same and you just want it back.
Be kind to yourself, pamper yourself, regularly organise little treats you enjoy (a walk, coffee with someone you love spending time with, re-reading a book you really loved…).
And don’t forget, sometimes we use this experience to change our lives for the better. ‘if the seas were always calm, we would never build a better boat’
I hope tomorrow is brighter for you.
x
We are all here for you, wishing you well going forward, I feeling you have made the right decision not to have a reconstruction, however this can always be reversed should you change your mind in the future.
Wishing you all the luck, with health and happiness going forward.
Thank you so much for taking the time to write such a lovely, positive and reassuring message @LauraR I feel so lucky to have this place to turn to, and I’m beyond thankful for kind souls like you
I’m also laughing at what your Dad said because I can imagine my Dad saying the exact same thing!!
I feel like I’m all out of brain power!
I am pleased I have had these past weeks to process and come to my decision.
Nothing like your old dad to bring you back to reality.
