Thank you so much,
I hope.you're well. Have surgery booked for 10th Jan. Really want to push for a double I'm hoping they'll allow it. I don't see the consultant until the 7th xx
Hi gullie - I'm so sorry to read your news and sending hugs and strength to you. As I said in an earlier post, it's hard to make even the simplest decisions once you get hit with a diagnosis, let alone whether you want a reconstruction or not, or what type. If I can help you, please do get in touch.
Hugs, Evie xx
I too just got diagnosed this past Friday. This is a recurrence. Still waiting for my HER2 results. My ER and PR are both negative this time. This is 12 1/2 years later from my first cancer. I’m still in a state of shock. I had a lumpectomy, radiation, chemotherapy and Tamoxifen. I wasn’t able to tolerate the aroma ties inhibitors so I went back on the Tamoxifen. I will be seeing my Surgeon tomorrow and I have so many questions. I was told I can’t do radiation again in that same breast so I am considering a double mastectomy. I’m still trying to decide whether to do reconstruction or not. There’s just so much to consider and still so many unknowns. I’m glad I found this site. It’s important for us all to have the support while we go through this. I’ll be waiting and watching g to see what you decide to do. Sending you hugs and support💕
Hi chellou- sorry for not getting straight back to you. I’m not sure if it will help you to know that the initial few days after diagnosis are probably the hardest, and that what you are feeling is very normal. The shock of the diagnosis is huge. I remember almost passing out when I was told, and then asked my consultant if I would still be alive in a year. Somehow it helps once you have a treatment plan in place and know what you are facing.
I also understand what you mean about trying to be brave - but you don’t need to hide anything on here, this is a safe outlet where you can just open up and someone will always come along to help.
I would suggest that you and possibly your husband too speak to someone, you can call the support team at Breast Cancer Now, or maybe you have a sympathetic BCN or a cancer support centre. Both my husband and I spoke to a lovely lady at Maggie’s support and that really helped. I also had some counselling afterwards.
So to your question about how do people cope? I’d say everyone handles it differently and their own way. Possibly the best advice I had was to take one day at a time and even one hour at a time when/if you have a tough day. One book that was recommended to me on here, and I then recommend to others, is “The Cancer Survivor’s Companion” by Frances Goodhart. One of the things this book says to remember is that “Thoughts are not facts”. Try to deal with facts and make sure you don’t use Dr Google. Stay on this and other reputable sites or you will scare yourself. Go along to any appointments with pen and paper and questions written down, then write down the answers so that you can refer back to them. Preferably take someone else along to write for you so you can listen.
My very wise mother in law told me to make sure I stayed around people who “topped up my batteries” rather than those who drain them. I’m sure you know who will help you and others who just manage to say the wrong thing, usually unintentionally but still not helpful.
I’m sending you a huge hug. I don’t know if any of that is any help, but please do come back and chat more if I/we can help you get through this. As Winnie the Pooh says, “You are stronger than you believe....”
Hugs, Evie xx
Thank you so much for your message. I found it very useful. I am just waiting to see my surgeon. I have just had 6 months of chemo and I have 12 sessions of 2 other treatments. I think I am swaying towards not having the reconstruction but will see what my surgeon has to say.
Thank you so much#
Hi Lisa, it's really hard making these decisions because there's so much to take in. My approach was to make a list of what my priorities are and write down some questions to ask the surgeon. First Q would be to ask what reconstruction types are available to me (eg, to have own tissue used you need to have enough fat; if you've had radiotherapy that might affect the stretchiness of skin for some recons). I would also ask them about whether your tummy muscles or back muscles would be affected. Personally I have back problems so that ruled out using the shoulder muscles for me. All this helps to narrow things down a bit. I would also ask how long the recon would last and whether I would need further ops. The fact I really find ops scary was a big factor for me. Also ask about recovery times and chances of complications (my own situation meant I needed to recover as quickly as possible). If you don't have reconstruction at the same time as the surgery it is always possible to have it at a later date if you can't get used to having no recon, but do ask what the differences are in how it will look, ask to see photos too. Also ask to see a prosthesis. I only need a smallish one but I've heard people who need larger ones can find them a bit heavy. First you're given a temporary light prosthesis but I was really pleased with the natural look my permanent prosthesis creates and I forget it's there now, my bc nurse helped me choose one. Also ask how the reconstruction will physically feel to you. Ask about the different sorts of inserts in artificial reconstructions. In the end I think my fears and imaginations were worse than the reality and the Macmillan nurses and nurses on the phone here are really helpful to talk it through with. All the best to you.
Hi Evie thank you so much,
Im really struggling to be brave at the minute. Not showing anyone else its affected me as my husband is in bits. I'm trying to hide it from the kids for as long as humanly possible. So praying i don't need chemo.
How do you all cope and be so brave.
I got from forgetting to planning my funeral in my head
I finished treatment in jan, and was discharged in July 19.
I had a single mastectomy in Dec 19, 6 months of neoadjuvent chemo.
I have my pre assessment surgery appointment on the 6th Jan for my reconstruction.
I have changed my mind so many times re construction, however the other night I was looking at the curve of my other breast, and that convinced me to have the reconstruction, I realised I have missed my breast.
The surgeon who referred me for the reconstruction has recommended I use my own tissue from my abdomen.
Lots of luck with whatever you decide to do.
Hi Lisa - all the best to you for whichever option you go for. Please feel free to ask me any more questions at any time. I really know how you feel about the coffee shop - I’m still having trouble deciding and now when I can’t decide I get a massive hot flush on top!!
Hi Chel - first of all, I’m sending you a massive hug and welcome to the forum. You must still be in shock if you were diagnosed yesterday. I know I felt like I’d been hit by a truck that I just didn’t see coming. And I’m sure you are overwhelmed with the amount of info you have been reading on here, and questions you want to ask. This forum is a safe and very supportive place, I am so glad I found it to get me through.
I was diagnosed 3 years ago, had chemo first, then a mastectomy and lymph clearance, an implant at the same time as the mastectomy and then radiotherapy and now on Tamoxifen. I actually didn’t have enough fat for either the tummy or back graft, so I only had the option of an implant or staying flat. I knew I wanted recon, and actually wanted an implant as it has the shortest recovery time (that was important for me).
I’d encourage you to ask your surgeon/consultant to show you photos of what the various options look like - if you know the name of your plastic surgeon he may have some examples on his website (it does feel weird looking at pictures of breasts online though!) I think the tummy/back options are more realistic than the implant. My implant doesn’t match my real one, it’s more rounded (think what celebrities look like after they’ve had work done - not that I look like a celebrity 😂), and I use a prosthesis over the real one to even them up, so under clothes you really can’t tell. But I’m happy with it, it really doesn’t bother me that they don’t match. That said, it is a very personal decision and everyone will feel differently about how they look.
You didn’t ramble at all. I’ll send this now, but I’m very happy to answer any more questions you have - either on here, or on a private message if you feel more comfortable that way.
Very best wishes, Evie xx
I've just stumbled upon you're response from reading through i can't even count how many messages on the forum.
I was only diagnosed yesterday So all very new. I'm having a masectomy done the second week in January. Unsure of what treatment afterwards as they need to wait for pathology. I've been offered the implant or where they take the muscle from my back to make a breast. Gutted i could not opt for the tummy tuck option 😂 im not big enough but i can soon sort that in four weeks. Im 35 but theyve explained it wont look very natural. To be honest i don't care as long as i live to watch my three children grow
Sorry I'm rambling, grow was your journey, recovery etc and is there a massive difference in the pair. I'm going to try not to tell the kids for long as i can do would it be extremely un hideable.
Thank you for listening
Yes, I certainly do have chemo brain. Some days I cant decide which coffee to have at the coffee shop hahaha. I wasn't aware that the hospital supplied you with prosthetic breasts. I thought I would have to purchase my own and they are not cheap. I was under the impression that the implants had to be replaced every 10 years so that what put me off those. Thank you for your input. I have to get my thinking cap on now as I will be seeing my surgeon soon and will have to decide.
Thank you Evie and regards
Hi Lisa1406 - reconstruction is a very personal decision and you are doing the right thing asking around and getting as much information as you can before you decide. You are probably also suffering from chemo brain - if you are anything like me I had trouble deciding what to eat, let alone whether I wanted a reconstruction or not!
I had chemo first then a mastectomy and reconstruction at the same time with an implant (so no skin grafts). I decided on a recon but I knew I didn’t want the skin graft/tissue option because of longer recovery, although it is more natural looking I believe. I’m very happy to share more information on this option if you have any questions - or indeed if I can help any more. Some surgeons won’t offer an implant before radiotherapy - but mine did, I think because of the type I have.
The hospital should supply you with a prosthesis if you ask for one. Ask your surgeon to show you some photos of reconstruction options too, that may help you.
Lots of people are happy both with and without reconstruction, and you too will make the right decision. My only advice would be to think long term and although you may want it all done with now, how will you feel in a year? The recovery time I was told for an implant recon is about the same as for a mastectomy, which is why I chose that option rather than the tissue options.
I wish you all the very best as you make your decision and for the rest of your treatment.
Thank you so much for your reply. I am more swayed towards not having the reconstruction. To be honest, I just want this all to be over. I wasn't aware that you can get prosthesis ones. I just thought that there was knitted knockers. I too aren't at the age where I wear skimpy stuff. It was good to read about your journey though. Thank you for sharing.
Congratulations on completing your chemo. I’m 6 months further on - still experiencing side effects but apparently it’s early days. I hope you get constructive responses to help you get a picture of what you might expect. Reading your post, I did wonder what’s really going on. In the end, having a reconstruction will surely depend on how important having an apparently ‘natural’ pair of breasts means to you. How do you feel about your mastectomy scar? I’m quite happy with being single-breasted but I’m no longer the age for boob-flashing so I quickly dismissed the offer and am happy with my prosthesis and Knitted Knockers, less happy with the bras. I also naively thought the absence of a boob would give me less to worry about in the future but apparently you still have to check along the scar for bumps and lumps and unwanted changes!
Good luck with your decision.
I am new to the forum. I have just finished 6 months of chemotherapy and now having 12 months Herceptin and Pertuzumab. I am waiting to go and see my surgeon to discuss my operation.
I keep changing my mind whether to have reconstruction or not. The thing that worries me most is the skin graft and the recovery afterwards. If I did go for reconstruction, I'm not sure which would be the less evasive option.
Can anyone offer any advice or help me to make the decision.