Before having a mastectomy we can’t even imagine what it is going to be like. Until we are faced with it, we don’t know how we are going to feel and we often only have a vague idea about the realities. It’s time to lift the lid on some of those things. Here are some of the things no-one tells you about having a mastectomy.
Having a Mastectomy Is No Guarantee Cancer Will Not Return
This is a big one! It seems to be a common believe that having a mastectomy will mean you can not get breast cancer again. Oh, if only that ware true!
In fact, it is no guarantee there won’t be a recurrence down the track. No surgeon can remove every single cell of breast tissue. They do their best, but there are always some cells that remain. It could be along the scar line or against the chest wall or around the edges of the breasts.
In many situations a mastectomy certainly does decrease the chances of a recurrence though, and it can be so much better for peace of mind – otherwise we would never put ourselves through it.
Everyone Who Goes Through a Mastectomy is Different
There is no one-size-fits-all option for having a mastectomy. Since there are no guarantees that it will mean breast cancer will not come back, the decision to have a mastectomy contains a lot of personal choice.
Even if your doctors advise you one way or the other, ultimately it is your choice to forgo a mastectomy, choose a single mastectomy or go all in and have a double mastectomy.
It’s a complicated decision, and the best I can boil it down to is this – it all depends on if your fear of the cancer coming back is greater than the fear of loosing your boobs. And who can measure fear? I certainly can’t.
Even after choosing a mastectomy, there are reconstruction decisions to be made. Do you go flat, have implants or a flap reconstruction? None are universally better than the others, it’s all personal choice.
A Mastectomy is not a Boob Job
I admit, even I joke sometimes saying that cancer was kinda a rough way to get a boob job – but in reality, they are not even close to the same thing. Think about this
- You could choose to stay flat after having a mastectomy – so not a boob job!
- A boob job leaves you with nipples that still work – or nipples full stop!
- A boob job does not leave you with huge scars
- Your boobs still have feeling after a boob job
- A boob job is a choice, mastectomy often is not.
- A boob job can be reversed in the future if you change your mind.
- A boob job does not come with a lifetime of worry.
You Could Lose Your Nipples
This one might be obvious, but for some reason it was a shock for me as I was sitting in my surgeon’s office discussing my options for having a mastectomy. I don’t know what I was thinking would happen to my nipples, but it had not crossed my mind that I would have none after the surgery.
Not everyone loses their nipples when having a mastectomy though. Depending on the type and location of the cancer, some people are able to have a nipple-sparing mastectomy.
This might sound ideal, no one wants to lose their nipples, but of course there are some cons too. Saving the nipples also means leaving some breast tissue, which in turn means cells for more breast cancer to grow in. There is also the chance that the nipples will not have a good blood supply and will die after surgery – sending you back to the ER to have them removed.
Nipples that do survive almost never retain any feeling, they are simply for appearances. All the nerves below are severed during the mastectomy meaning they are numb. This also means that they can sometimes be always “on”.
Deciding whether or not to keep your nipples can often be a hard choice and is best made in consultation with your surgeon.
Your New Boobs Will Probably be Numb
As I mentioned above, during mastectomy all the nerves in your breast are severed. Sometimes some of them can grow back and give some feeling, but mostly this does not happen. The numbness can even extend to your armpit and upper arm if lymph nodes have been removed.
The good news is that new procedures are being trialled that can reattach the nerves to give back at least some sensation. Time will tell if this becomes a mainstream part of the mastectomy process, but I’m guessing that it could be an expensive added extra as it takes a specialist microsurgeon to do the procedure. Read about one experience here.
Drains are the Worst!
I know I’m not alone in this one as I have seen many women make similar comments, but for me, the drains were the most painful part of the process.
Oh, they didn’t hurt when I was sitting still, but every time I moved they pulled on the area where they went into my body. I don’t know how many times I got out of bed and forgot to pick them up, tugging on the drains hard – that was really painful.
Each time I had to gather them all up and carry them around with me, carefully ensuring the tubes didn’t get caught on anything. Negotiating the bathroom was a challenge, and showering was impossible. I can’t even imagine how much they would have annoyed me at home.
I have to admit I had it easy when it comes to the drains too – all four of them were removed by day five. I was also in hospital until they were all removed, so no issues with carrying on real life while lugging them around. Many people have drains for weeks – in fact two weeks seems to be about the normal amount of time they are in.
Reconstruction is an Option but Not a Necessity
Not everyone who has a mastectomy opts for reconstruction. many women choose to stay flat. In fact, when I imagined a mastectomy, it was those women who stayed flat who first came to mind – and I was not entirely opposed to going flat myself.
It seems to be accepted that every woman will want reconstruction, and that is simply not true. Some people don’t want the bother of extra surgery, the risk of implants, the possibly complications with flap surgery – they just want the cancer gone and to heal and get on with life. They understand their worth is not just about their boobs.
Ultimately I decided on reconstruction, but even today, I know if something goes wrong with my implants I will simply go flat. There is something quite appealing and freeing in the thought of not having boobs at all.
You Will Need To Go Bra Shopping
After having a mastectomy, even with reconstruction, you will probably need to go bra shopping. Think of this as a good opportunity to get rid of all those well-worn favourites (I know you have them!) for some new bras.
It is likely you will end up wearing a completely different type of bra. The underwires could be out the window, swapped for comfy crop tops and sports bras. Or perhaps no bra at all – that’s an option too.
It’s more than likely, even with reconstruction, that your bra size will change, particularly if you have large breasts to start with. There is a limit to how big implants are or how much tissue they can use to make the new breasts.
Surgery Could Go on for Years
Unfortunately for most, having a mastectomy means more than one surgery. Oh, the mastectomy itself is just one surgery, but there can be more surgeries to complete the reconstruction, or perhaps have a second mastectomy on the non-cancer side.
Personally I had four surgeries – a lumpectomy, bilateral mastectomy with expanders, exchange to implants and nipple reconstruction. I had no issues or complications, in fact my surgeon described me as a textbook case, but I still had to wait a certain amount of time before each step. I had my first surgery on September 25th, and my last one on August 14th the following year, so it was almost eleven months of going back and forth.
My experience was quicker than normal too, because I chose to pay for a private surgeon and private hospital. This meant I didn’t have to deal with bureaucracy and waiting lists, but had the surgeries to suit only my schedule and my surgeons.
It’s not at all unusual to hear of this process taking 3-5 years to complete, especially if chemo and radiation is also involved. Complications are not uncommon, and they also add time.
Mastectomy is Almost Always Easier in Reality
When we are first diagnosed we are terrified. The thoughts of surgery, pain, not accepting our bodies after having a mastectomy, cancer, reconstruction options etc are all overwhelming. This is seriously something none of us want to deal with.
Once the surgery is done and people are looking back, many will say it was no where near as bad as what they were expecting – I certainly thought this. We often hear the horror stories, but there are many people who get through this just fine and are soon getting on with life.
I know we are all afraid of the unknown, but if it calms the nerves of just one person currently facing a mastectomy, then know it really isn’t as bad as you are imagining!
Having a Mastectomy is Not All Bad
Right now you may not be able to see any good coming out of your mastectomy, but if you choose to have a positive mindset about it, you will be able to find some somewhere.
For me, I have cleavage for the first time in my life. I need to go buy myself a killer dress to show them off! My husband also really likes my new boobs too.
I have also learned a lot about myself throughout this journey. I thought I could do hard things, now I know I can. I also know I can help others through this too – and I hope this post has done just that!
Want to read more of my story? Try these posts
- My Bilateral Mastectomy with Tissue Expanders
- Bilateral Mastectomy Pictures
- Two Years Post Bilateral Mastectomy
For some breast cancer information, click through to these posts
- What to Take to Hospital for Breast Surgery
- Tips for Coping with Breast Cancer
- Ten Questions to Ask Your Doctor After a Breast Cancer Diagnosis
Have you joined a breast cancer support group on Facebook but been completely overwhelmed by some of the posts? It’s fantastic that these groups are an open forum and all sorts of questions, worries and issues are addressed, but sometimes they can be too much. In fact sometimes they can be downright scary.
If you would still like to join a support group on Facebook but not be faced with some of the scarier aspects when you don’t want to see them, come and join Positive Breast Cancer Stories. Here we share positive stories, celebrate milestones and encourage each other rather than deal with the technical information >>
Click here to join now
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I had bilateral breast cancer in 2017. Two different types of cancer. Having cancer is bad enough but when you have two different types, it makes a person pause.
I chose a bilateral mastectomy. For me, it’s been up and down. I’m glad I made the choice but the nerve damage has been awful. Itchiness that I can never get relief from and it’s going on 4 years post. I get severe muscle spasms under my armpits where the tissue and lymh nodes were removed that radiate into my shoulder blades. Most days I just deal with it and other days it can be unbearable.
Thanks for sharing your story Kim. I’m sorry to hear you are still having issues. I hope it continues to improve over time so you don’t have as many of those unbearable days.
So sorry that you are having these problems. Last year, I had six weeks of radiation and am suffering from pain in my armpits as well as nerve and muscle pain. I have found that a physiotherapist is helping a lot. She does massage and gives me exercises. Have you tried a physiotheraist?
I was diagnosed in 2016,bilateral. Had a biopsy, bilateral mastectomy, chemotherapy and radiation therapy. All went well…the problem I do have is upper back spasms, due to the radiation i had, so severe that it takes my breath away. Otherwise all is well.
Thanks for your comments Nancy. Glad to hear things are going well.
Thank you for that information. I have only read horror stories about a mastectomy. I have been a wreck and this really helped. Thank you for your caring word of encouragement.
Thanks Lisa! I know exactly what you mean – I read all those scary stories too, which is why I thought it was important to share my own story. Good luck for your surgery.
Thank you. I have my last chemo and then single mastectomy in 3 weeks time and I am scared.
You’ve got this Stefanie!
I am having mine this week.
Good luck Linda 🙂
I had a total mastectomy and flap reconstruction all at once. So happy to have it over!
I found a cloth nail pouch, to be the best way to hold my drains. I even slept with it.
Prayers for all facing cancer.
Thanks for the tip Leah. Good luck with your recovery.
Surgery on 12.12 2022 bilateral and going flat!
Good luck 🙂
Hi Debe- I also chose Bilateral and going flat. My surgery was 12/19/2022. How are you feeling? I’m surprised at how tired I am!
I have 4 drains, using only Tylenol or Advil as needed,
Post when you can!
I’m having the bilateral double mastectomy on Tuesday 12/20/22
I’ve been having nightmares about it and I’m scared to death but hiding my fear from all my family pretending that I’m alright with it!
The fear is the worst part! I’m sure now you are relieved it is over, and it was not as bad as you were expecting. Good luck with your recovery.
My name is Veronica and I was diagnosed with breast cancer in July of 2022 , I had my double mastectomy September 15th and then my reconstruction in November 1st. I just had another reconstruction March 3if 2023 and recovering well. I will say that I don’t wish anyone to have the reconstruction it’s very painful but I am glad I did it and recovering very well. I only pray no more cancer.
Hi Veronica. It’s good to hear you are doing well. I hope the pain continues to ease and you are very happy with your results. Take care
As. Replied to Debe above, my date for bilateral flat was 12/19/2022. This is my first time posting – but I am looking for support/ details and offering to share mine. I was sent home the same day. The drains are the worst for me- 4 and the one on my far left is where lymph nodes were taken. That is my only pain. Other 3 are calm. Post when you can- I hope you stay well! Carol
Hi Carol. Great to have you here. The best place to get support is to come over and join the Facebook group here. There are lots of lovely ladies there that you can share with and that will support you too. You can join here >> https://www.facebook.com/groups/positivebcstories
How do you know if this is the right choice. I have the atm gene which means 20-40percent chance I get it again. I look at it as 60-80 I won’t. I had a lumpectomy in oct. I knew I didn’t want to do radiation or chemo. So then this is the option either wait it out to see if I get it again or go through with the bilateral mastectomy. My recent mri was good didn’t show anything so what now – do I get the surgery on this week like scheduled or change my diet and lifestyle to prevent from getting it again. Especially since even if I go through with it I could still get it again
I need some guidance please
Unfortunately, I can’t answer that for you, only you can decide if it’s the right thing to do. It’s hard, I know, but I can’t offer any advice on this. Good luck with your decision.
Yo no me he reconstruido ,tenía fecha pero a lo largo del tiempo me dí cuenta de que no me hacía feliz la idea,más bien me provocaba angustia.La operación puede salir genial pero te hacen firmar que conocer las posibles complicaciones…Entonces me dije:imagínate que se dieran esas complicaciones en mi caso(a alguien le pasará).Estás dispuesta a asumirlas?yo me dí cuenta de que no.Ahora estoy sana aunque todavía sin remisión total ,sin dolor,con una cicatriz que apenas se ve.Valoro lo bueno que tengo comparado con otros casos y no me compensa arriesgarme a una reconstrucción que Nadie puede asegurarte será un exito.Tienes que valorar si tu miedo a operarte es mayor a tu miedo de estar sin pechos.Espero que te sirva mi opinión.Solamente escucha tu corazón,la opinión de la gente no cuenta
I had double mastectomy 3 months ago, and that was not easy decision,but today I’m happy that I did it. I didnt have time to wait and pay it in private clinic and get most perfect doctor,he explain it all about niples that it’s better to remove it and all about reconstruction so it wasn’t big shock for me. My next operation is in March . Today I have expanders and yesterday was my last filling, that’s paintfull because they are put under muscles and stretch them with every filling. But that will pass and Am happy about my decision. My mom didn’t survive breast cancer and for all you know how hard its is mastectomy was not hard decision for me. For all your lovley ladies don’t be scared , with or without reconstruction you are still beautiful and just trust your doctor ,you will be healthy and that’s most important.
Thanks for your inspiring words Jasna. This is not easy, but we all have to remember it’s better than the alternative. Good luck with your exchange – getting rid of those expanders will be such a relief.
I am done with my red devil chemo and Taxol for my breast cancer and am now just meeting doctors for my double mastectomy. Thank you for easing my mind. Between this mastectomy and my future craniotomy for a brain aneurysm…I’ve been a ball of nerves!! But your post has brought me back to a sort of sanity! Hahaha… Thank you so much!
Thanks Christy. Good luck with your surgeries.
I had a mastectomy on April 28th 2022 followed by reconstructive surgery on November 30th 2022 which I elected to do the diep. On December 6th and 7th 2022 I had 2 more surgeries because of a nicrosses. So I just decided to go flat. No more surgeries for me. I wish everyone the best. Praise be