Mastectomy worry

RollinRollinRollinRawhide · 01/06/2023 17:11

I’m sorry you are going through this, and I know this is going to come across as harsh, but my loved one is currently battling cancer. I know how upset they are to be left facially disfigured due to their op, however, delaying surgery seems like madness to me.

They likely won’t do radiotherapy without you having the surgery, are you seriously willing to risk death because they won’t set a date in stone for an implant? I’ve already lost someone to stage 4 cancer in the last 6 months, my loved one is on borrowed time already. You say you just can’t live with the not knowing…. that may become a reality if you delay the surgery.

Please speak to the CNS, they will be able to help you process all this and there should be a counsellor attached to the unit. I hope you will be able to get your implant sooner than you fear, and that your surgery is successful in removing the risk of cancer. Please don’t delay

JumbleAndKitchen · 01/06/2023 17:17

I’m so sorry - this is so tough on you. Especially frustrating not to have a date. In your position, I imagine that the not knowing would be the hardest. If someone gave you a date, even if it was far away, you could at least count down to it.

I think now is the time to unlock as much support as possible. There will be counselling, zoom groups, macmillan nurse stuff. It will take a bit of phoning and web research, not getting a support network of others in this position could be really useful.

Very best of luck

MissyB1 · 01/06/2023 17:44

Tbh as someone who has had a mastectomy (admittedly I didn’t bother with reconstruction), just focus on recovering from the surgery. It’s big surgery, and at least without the reconstruction there will be less chances of any complications. You are on a journey, one step at a time. It’s natural to want it all done and dusted and to “get back to normal” but that’s going to take time. You will get there.

2bazookas · 01/06/2023 18:07

I would feel so much better about the mastectomy if I could be given a proper date for them to rebuild my breast, but again it's all very vague, maybe next year and I just can't live with the not knowing,

    From experience  I'd say the hardest thing about having  cancer, is the not knowing, the uncertainty.   About everything, but especially time.  Its  the nature of the illness.

It's really tough .

My best advice is; before any Dr or treatment appointment, write down all the questions you want to ask; have them in front of you (doctors don't mind at all) and write down the answers.

TrueScrumptious · 01/06/2023 18:13

I’ve had a mastectomy and didn’t have a reconstruction. There can be quite a delay on delayed reconstructions. When I looked into it, I was told six months for flap surgery where they use your own flesh, or three months for an implant. But I’ve heard of others waiting years. Can you have an expander fitted temporarily? That can tide you over for a bit. Does your hospital do reconstructions or do they work in conjunction with another hospital?

ImagineTheHusky · 01/06/2023 18:13

I had a single mastectomy at 33. I was pregnant at the time, so had to have a mastectomy without reconstruction to keep the surgery time down.

I understand the need to know exactly when you will be fixed and "normal" and your future will be your own again. But if there are clinical reasons for delaying a reconstruction then it really is worth listening to your surgeon's recommendation. Surgeons understand the importance of reconstruction to women, they don't delay things unnecessarily.

Maybe try to think of this as a trial period for what staying flat and using a prosthetic would be like. FWIW, I decided against reconstruction. Having one boob at 33 is hardly my ideal body, but I am pain free, have full range of motion and with my silicone prosthetic no-one can tell. That'll have to do. If the time for surgery comes around and you don't like living flat then you can just go ahead with the surgery.

Wishing you all the best.

WorryMcGee · 01/06/2023 18:16

I can’t advise on mastectomy as I had a lumpectomy then node clearance then chemo then radio - but I wanted to say that’s it’s okay to have concerns about your quality of life as well as wanting to treat your cancer. We are often made to feel (in my opinion) like robots who should just be grateful regardless of the impact certain types/timings/methods of treatment will have on us. It is okay to feel as strongly about this as you do. You aren’t ungrateful or being silly or vain or anything else.

I have recently declined Tamoxifen as, like you, they can’t give me true stats relating to recurrence. I haven’t felt heard either. I’m 37 with a 1 year old DD and I’ve had enough, I want my life back and I’m not spending the next 10 years miserable with side effects for an unquantifiable benefit. Some people may think that’s madness but it’s my choice. You will get there too, and whatever you decide to do it’s your life and your body and your choice. I wish you all the best. ❤️

iliveinhappyvalley · 01/06/2023 18:21

I was also told that I would have to wait for reconstruction but the surgeon would not agree to it. I then spoke to another consultant at the same hospital who agreed to do it at the same time as the mastectomy. However I have only small breasts and didn't need chemo so may have had a baring on why she agreed to do the reconstruction.

ImagineTheHusky · 01/06/2023 18:24

WorryMcGee · 01/06/2023 18:16

I can’t advise on mastectomy as I had a lumpectomy then node clearance then chemo then radio - but I wanted to say that’s it’s okay to have concerns about your quality of life as well as wanting to treat your cancer. We are often made to feel (in my opinion) like robots who should just be grateful regardless of the impact certain types/timings/methods of treatment will have on us. It is okay to feel as strongly about this as you do. You aren’t ungrateful or being silly or vain or anything else.

I have recently declined Tamoxifen as, like you, they can’t give me true stats relating to recurrence. I haven’t felt heard either. I’m 37 with a 1 year old DD and I’ve had enough, I want my life back and I’m not spending the next 10 years miserable with side effects for an unquantifiable benefit. Some people may think that’s madness but it’s my choice. You will get there too, and whatever you decide to do it’s your life and your body and your choice. I wish you all the best. ❤️

Totally understand prioritising quality of life. Just wondered if you had considered trying tamoxifen for a couple of months to see how you get on? I was terrified of the side effects (my doctor told me not to read the tamoxifen patient leaflet as if I read it then I just wouldn't take it). I took it for 3 years before having a break to try for another baby, and didn't have a single side effect from it. Literally nothing. I wondered if I'd accidentally been prescribed a placebo, but apparently there are a lot of women who tolerate it like that.

TrueScrumptious · 01/06/2023 18:31

ImagineTheHusky · 01/06/2023 18:24

Totally understand prioritising quality of life. Just wondered if you had considered trying tamoxifen for a couple of months to see how you get on? I was terrified of the side effects (my doctor told me not to read the tamoxifen patient leaflet as if I read it then I just wouldn't take it). I took it for 3 years before having a break to try for another baby, and didn't have a single side effect from it. Literally nothing. I wondered if I'd accidentally been prescribed a placebo, but apparently there are a lot of women who tolerate it like that.

Show quote history

OP might not be eligible for Tamoxifen, though, hence the urgency.

ImagineTheHusky · 01/06/2023 18:34

TrueScrumptious · 01/06/2023 18:31

OP might not be eligible for Tamoxifen, though, hence the urgency.

Show quote history

Yes, I was replying to the other poster who was talking about tamoxifen.

Bluepanda86 · 01/06/2023 20:43

@Boobhelp sending you massive virtual hugs. I can understand your frustration and I can't imagine it has helped due the impact of COVID and the current situation with the NHS and the increase of waiting times for operations.

I had surgery before completing further treatment at the age of 31. I had an expander implant fitted at the time as a temporary situation and was told at the time I may need to consider a silicon implant at a later date after completing radiotherapy.

I had a silicon implant fitted nearly 3 years ago as I was having issues with my expander implant and received such great support on my way to recovery. My chest is not even (due to breastfeeding on one side) but I have found comfort in great post surgery bras.

Please be kind to yourself and take each day at a time. I found at times the Charity 'Breast Cancer Now' helpful. Maybe your hospital has a drop in centre to help with further support.

You can always send me a PM 💐if you need someone to talk to.

@ImagineTheHusky - could I ask what brand of Tamoxifien you were using and are you back on it after having your baby? I am due soon to recommence taking it after the birth of my DD2.

Original poster

Boobhelp · 01/06/2023 20:55

Hi everyone ❤️

I just wanted to say, thank you for all of these replies.
I really value the time you have taken to read what I have said and listen to me.
I am so sorry to those of you who have lost loved ones and who have also fought this awful disease. It's made me realise I haven't actually 'talked' so to speak.
I am so grateful. I'm sorry if my post also came across as flippant or insensitive, too ❤️

I am going to call Macmillan tomorrow and maybe look into further counselling.

After listening to you all, I will be having my Mastectomy and hopefully wearing a prosthesis. It's so hard isn't it, and I think the loss of control is doubly jarring.

Wishing everyone well and thank you all again so much-After 10 months, this is the first time I have felt heard. Thank you xxx

OP posts:

Glassfullofdreams · 01/06/2023 21:06

From experience, it's quite common for reconstruction to be delayed. It really depends on your treatment plan.

I hope your surgeon has explained why? Radiotherapy can damage the reconstructed breast, hence the preference to do it once you're healed.

There's a waiting list for reconstruction because of all the women that weren't able to have reconstruction during COVID, although I believe the wait is getting shorter. I waited almost a year between my mastectomy and reconstruction.

I hope you can make peace with your treatment plan. Living with one breast isn't as awful as it seems x

ImagineTheHusky · 01/06/2023 23:26

@Bluepanda86 I've had many different brands (the pharmacy just gives me what is in stock) - currently have Tillomed and Milpharm in the cupboard, have definitely had Wockhardt before too. No side effects from any of them.

I'm currently 5 months pregnant 😊Congratulations on your DD2! Can I ask how you approached breastfeeding afterwards? I'm not keen on delaying recommencing tamoxifen for too long after giving birth, but I would like the baby to have some benefit from breastfeeding, assuming my remaining breast is up to the challenge.

Bluepanda86 · 02/06/2023 18:17

@ImagineTheHusky I'll PM message you.

Bluepanda86 · 02/06/2023 18:19

@Boobhelp Hope speaking to Macmillan helps as they have a great support network and are easy to talk to. Wish you a speedy recovery. You're right - it is nice to felt heard as I've found it really hard to talk to anyone about my journey at times. It does feel better to talk to others. 💐