Another night of not being able to sleep. Lots of weeping. I was diagnosed with invasive lobular breast cancer back in July. At first it was thought I'd be able to have a lumpectomy, but after an mri and ultrasound, the tumour was larger than first thought. I had a mastectomy (left side) on Sept 2nd. The only reconstruction offered in my area of the country is implant. I was very reluctant, but surgeon told me and my husband I wouldn't get diep on nhs as it's too expensive, even if I could find someone willing to do that surgery - he said that most nhs centres have stopped offering it. Apart from my reluctance to have a foreign object inside my body, I had read that there are very high rates of post operative infection with implants. In the end, the surgeon reassured us that the chances of infection with his track record are low and have been limited to smokers. I decided to go ahead, as I didn't want a flat mastectomy site. This also involved going through a reduction on the right side, as I had quite large breasts - 40DD. Post surgery, I got an infection (I am not a smoker). After weeks of antibiotics and a debridement procedure in theatre, I was admitted as an emergency two and a half weeks ago. I had to wait almost 48 hours for a spare theatre slot. I ended up losing the implant - the mastectomy site is awful and I haven't found it easy emotionally. Added to that, my right breast is so small now my cup size is an A - I haven't been that small since I was 11 yrs old - an my nipple/areola is half the size it was. I wasn't expecting that. And of course there is the (extensive) scarring and loss of sensation - I have none at all in some areas, including the nipple. I had no idea I would be so small, or that the sensitivity loss would be so drastic. I feel though I may as well have had a double mastectomy. I am now waiting for radiotherapy to start - in the next couple of weeks. I have an appointment to see the surgeon again at the end of next April. Not only am I numb emotionally from the cancer diagnosis, I feel disgusting, mutilated. The breast care nurse could see how distressed I have become and has referred me for counselling. I am now on a waiting list for an assessment appointment. I have had some difficult times in my life, but I don't think I have ever felt worse than this. I am ashamed that I have no hope. I don't know what to do. My husband is at a loss, too.
It may be worth asking your bc nurse, or GP to refer you for counselling. I have been referred via two routes, but both have lengthy waiting lists. On my worst days, I just let myself cry, shout at God, or whatever I need to do. I don't think there are any quick fixes or short cuts with this whole process. Apart from the grieving for the life and body and 'normal' that used to be, there is the trauma of treatment, and treatment gone wrong. The infection I had did some horrible things to my body, and I can't get some of that out of my head. And though I only list one breast to cancer, it feels almost like two, as the surgeon recommended breast reduction on the healthy side to match the (now un-) reconstructed site. I had no idea that the scarring would be so extensive, but worse than that, that I would lose all sensation in the nipple. It's like a stranger's body ... I can't quite navigate that by myself. Others have told me to be glad I've been treated and not worry about what I look like. But it's not quite that simple, is it?
I'm pretty much done with treatment (16 rounds of chemo and 30 sessions of radiation) and about to start tamoxifen in a couple of days.
I've already told my surgeon that I'm not going to do implants but own tissue reconstruction.
I haven't talk to anyone about my struggles and I just signed up at this forum. I think it might help to talk to someone about our struggles .
If I can help with anything please let me know
So sorry you have experienced this on top of the cancer diagnosis. It's a long, hard road, and I guess we aren't very far along it yet, relatively speaking. I finished my radiotherapy treatment last week (had another infection in the scar during treatment, caused by an undissolved stitch) and I'm resting as much as I need and caring for the skin as best I can. Still on a waiting list for counselling - they are so stretched ... Seeing my original surgeon early in the New Year and will ask to he referred to another hospital where they do own tissue reconstruction, as I don't want to go down the expander and implant route unless it's the only option left. I know new surgery is a minimum of six months to a year away, but I want to be on the appropriate waiting lists as soon as possible, as they are lengthy, too, apparently.
I wish you well with this stage of your healing. Are you having further treatment? I've been taking letrozole for a couple of months or so. Some joint pain, but mainly manageable with painkillers. Hope whatever is next for you, that it is plain sailing, relatively speaking.
Best wishes for a restful and joyful Christmas,
Myself I went through 2 extra surgeries after my bilateral mastectomy due to tissue necrosis and infection. The last one was Nov 27th 2019 when I 've decided to cut my loses and remove the expenders. Right now I am flat chested and my surgeon said that I have to wait an year after radiation in order to get some boobs.
It is pretty traumatic but trying not to think to much about it and hoping for the best outcome.
I feel like the cancer diagnosis broke my spirit but moving on... With the good and the bad in life.
U are not alone. Wish u all the best
good luck for your radiation on Monday. My friend who is ten (whew!) years out from treatment was recommended “udderly smooth” cream to apply post radiation session for the side effects. (Apparently it was developed for cows’ udders. Go figure!). But she ended up just constantly slathering plain old Vaseline on her treated breast such that she would walk around with a sticky T-shirt. Now, she says the skin on her treated breast is in better condition than the untreated!
As for me, much as I am hating the idea of the procedure on Monday, the necrosis is creeping onto the healthy skin and that is devastating to watch hour by hour.
The emotions change by the hour and even the minute. I was out with my friend yesterday for a perfectly pleasant evening, at the end of which I just collapsed in a puddle of tears. She thought it was her. (Sigh).
Can I ask, after the implant was removed did they replace it or are the docs leaving it to heal before proceeding? I am having to go flat
(Another thing to get my head around) for a few months to allow my skin to heal before recon.
Good luck for Monday. I’ll be thinking of you as I lie on that surgical table (yes, probably only under local anesthetic like you).
Let me know how it goes.
I am so sorry you are going through this. Before I had to have my implant removed, I had areas of skin necrosis and went through a debridement procedure in theatre (for which I was awake, with no anasthetic as most of the are had no sensation). It's incredibly traumatic, I know. To see your body literally decaying when you've had surgical treatment to help heal you, is so difficult to get your head around. Speaking for myself, my emotions just cannot keep up with the speed things are happening- even though there is so much waiting involved, even when you are an 'emergency'. I begin radiotherapy on Monday, and am just beginning to experience side effects of letrozole, so it us an overwhelming time. I think that we are probably in a state of emotional shock from having a cancer diagnosis in the first place. I don't know about you, but I was quite calm and matter of fact. Didn't shed a tear. Looking back, I think it was more a case of quiet shock. Now, I don't recognise my own body or emotions ...
I really hope your surgery on Monday is complication free, that you have the most successful outcome possible. Rooting for you. Please let me know how you get on. Xxx
My situation is, in many ways, similar to yours. Diagnosed in July, tried pushing for lumpectomy but small size of breast versus large mass meant I had to go for mastectomy. Developed necrosis of nipple and area at incision. Nipple is hanging in there (shrunken in size but just about there). But last week, it became clear that the skin at incision has given up completely. Monday was the first date they could get for surgery to remove the expander that was in there and cut out the rotting skin (and believe me it really does look like it’s rotting). Meanwhile the skin rot progresses steadily by the day.
I completely understand all your feelings of despair and self-disgust, and shock of loosing all sensation. I am not sure what words of comfort I can offer that someone else has not already, except to tell you that you’re not alone out there.
Best wishes for the radiotherapy treatment starting this week Jubelu. Hope you enjoy your massage.
Lots of 🤗
Chick 🐥 x
I know what you mean about feeling as though you have had a mastectomy twice. I hadn't thought about it like that ... I said to my husband just last night that it feels as if I am living in a stranger's body, one that has been violently attacked. I guess it will take some time to start feeling 'comfotable' in this radically altered me ... People say I should be kind to myself and not be to hard, but I don't think I'm alone in finding that a lot easier said than done. I don't think many of us are good at self-love ...
I begin my radiotherapy treatment next week, and have been contacted by one of the nurses and offered a therapeutic massage, which I have said yes to. Something to look forward to rather than be apprehensive about.
Thank you for all your support and good wishes. X
Thank you Jubelu. So glad to hear that you have such a supportive partner.
At night, we don't have the same daily life distractions, so instead may focus on torturing ourselves instead!! I know it may not feel like it now, but you will regain control. Not in the way that we can control the impossible and magically reverse events. We can start trying to reflect on how we perceive and respond to these significant changes.
I don't know about you but I feel like I had a mastectomy twice on the same side. Once was bad enough!! Never mind going through the array of treatments and still continuing.
It takes time and processing the changes, which will include being upset about the losses and trying to come to terms with what has happened. I can not think of one aspect of my life that has not been affected by cancer, all the treatments and the aftermath. It irks me now to think of some med staff going on about getting "back to normal". There was no going back to my previous "normal". The challenge was and is to adapt and accept the changes and get on with life from there.
If it is all just becoming a real struggle with no let up, then perhaps you may want to discuss how you are feeling with your GP as well as they may also have resources and suggestions to help you through this difficult time.
All the very best to you and your family,
Chick 🐥 x
Thank you so much for replying to me - it has instantly made me feel less alone. I am so sorry you had such a traumatic time, too.
I am with you re the celebrating my scars - I know it's still early days for me, but I never liked my body much to start with, apart from my breasts! Can't imagine this is going to make me love my body ... And I don't feel as if I'm a fighter, more like this is happening to my body and there's no option other than navigating what is beyond my control.
My husband is amazing. When I say he's at a loss, it's more that I know he would love to be able to say or do something that will somehow make everything alright. I am so lucky to have someone who loves me and supports me so completely. But it's so hard for him to see me go through this. I sometimes think it's almost harder - maybe it's just a different kind of difficult - watching someone you love going through things you wish you could carry instead of them.
My breast care nurse has contacted the counselling service at the hospital to get an indication of how long the wait will be, but they couldn't say. I'm expecting later rather than sooner. She also gave me the contact details of a local support group, so I am following that up.
Again, thank you for taking the time to reply to me. I was in a really dark dip when I first posted. Most days, I have tears and down moments, but it always feels more desperate at night when sleep is evasive ... I wouldn't wish this on anyone else, but it makes me feel less alone to know others understand because of their own experiences.
I just wanted to say hello and say so sorry to hear that you are going through such a traumatic time.
To cut a long story short, my situation also changed from mastectomy to lumpectomy a couple of times and I also had a failed reconstruction (not with an implant).
It takes time to process it all, especially if you are still going through active treatment. I use to refer to my surgery side as a nuclear bomb site! I still can get upset about it all now, about the extra treatment and complications added to an already long, drawn out treatment process. At times, I will still berate myself for bothering with recon in the first place etc even though it is 2 years after surgery. I just think this is ok and, for want of a better word, "normal" considering the situation.
Taken as a whole, I found it a a traumatic experience. I can still picture the leeches on my wounds. I am not at the stage yet where I may proudly display my scars and speak of such things using the language of war whilst playing a victory march. That is not me yet I feel a little envious of those that do.
However, time has healed some of the physical and emotional scars. I certainly don't think about it as much these days. I am quite comfortable wearing a prosthesis (I am quite small chested too and prefer to be).
It takes time to process and come to terms with our experiences. Do not be so hard on yourself. In my opinion it is very normal to "grieve" in this way. I am glad you have counselling available to you. I hope you can access this soon so you have a safe space to explore your feelings. You say your husband is at a loss too. Is that about his own feelings or about not being sure how ti support you? You may want to consider what you want from him at the moment? Maybe that is to be reassurred of his continuing love and support irrespective of your current appearance.
Be kind to yourself Jubelu,
Chick 🐥 x