Anybody else cant cope and causing Anxiety with thought of Mastectomy?

Hi Karrot,... I remember feeling & thinking the exact same thing, I had a double mastectomy & they removed everything so I was left with nothing on my chest part from 2 almighty scars!! Thanks to covid I’m 2 years into waiting for reconstruction surgery. If I’m honest it doesn’t bother me that much, the thought of something tends to be lot worse than the actual doing it. Plus u need to give yourself some admiration for what uv already been through. For a lot of women a hysterectomy would be unbearable ur stronger than u think, I was blessed with the BRCA1 gene so I had a hysterectomy too. I was aged 31 at the time I never thought I would cope but I have, overcoming a fear is much easier than living with guilt.. hope everything goes well whatever u decide xx love Vic:) 

Hi karrot

I'm so, so sorry to hear about all your troubles. What a couple of years you've had and a global pandemic to boot! Of course you are beyond anxious and totally panicked about everything, anybody would be in your situation. I'm not in any way an expert on mental health, just someone, like you, who is trying to keep my sanity and get through the days without giving myself palpitations and cold sweats thinking about all the possible implications of this awful disease.

 I have TNBC, which is pretty aggressive, so although it was small and I had a lympectomy, chemo was strongly advised and I'm in the middle of that now. But because its TNBC, there is an increased chance of it being linked to dodgy genetics (BRCA) so they are going to test me for that, and if it's positive,  double mastectomy will be the way forward for me. So I can definitely understand at least some of the things that are going through your head. When the dread has come, I worry about the op itself (I've never had a major surgery), I worry about the pain and recovery and possible after - effects, I worry about the scars and how it will look, and if my husband will find me ugly and stop loving me. I have been in a state of absolute panic and terror on more than one occasion. Sound familiar at all?

What has helped me has been to seek out as many women as possible who have been through the procedure and come out on the other side, so you coming on here was definitely a great first step. I've also been following some ladies on YouTube and instagram who have their mastectomy behind them, really positive, strong women who give great tips on what to expect, and how to recover. My friend put me in contact with a colleague of his who is 3 years post op, we chat on zoom from time to time and she's been fantastic in answering my questions and just reassuring me... It's been lovely to see someone in real life (zoom life!) who has been through the experience and looks amazing, energetic, full of life... It's a real spirit-lifter.

As for the nurse's suggestion of a Councillor, it's a very personal decision whether to go or not, and I have never been to one myself. I can tell you though that I have both a family member and a friend who have seen psychologists for different traumatic experiences, and both say that it was a bendigo experience and helped them to overcome their fears. So it might be worth looking into and considering as well as doing other things. 

Wishing you all the best xxxx

In terms of the counsellor. My teenage son suffered terrible mental health issues, tried to take his own life 3 times, self harmed etc. He went to a fully trained counsellor. Changed his life and his outlook. I went to the sessions with him and just listened (his request) and I cannot begin to tell you how it helped. It’s not easy as you have to face your fears but it helped him. Not for every one I know, but my motto through all this is to take whatever is offered. If it doesn’t work then nothing lost.

I thought I would need a mastectomy but they said a lumpectomy would work. That makes me worried that something may come back. It’s no where near the same as a mastectomy but I did have the lumpectomy. I’d never had surgery before but it went really well and I was surprised. There is pain but with pain relief it’s ok. I did find it hard after the surgery to even look at what was left. But after calling the breast care Nurse team, they said look at it a little bit each day, as much as you can manage. Which I did and it’s fine. I saw another post where somebody called it frankenboob. It made me Laugh as that’s what I think of mine. But I’ve learned to love it and it’s part of me now. I could have reconstructive surgery but I’ve decided to live with it as it is. As for my husband, I really really worried. But he’s not bothered in the slightest. He calls them the good boob and the other one!! 

And if it helps I’ve just got to the end of chemo. We can do it!! It’s not easy but we can get through it. Let us know how you get on wand what you decide. . I’m passing my love to you

Thank you Vic for your kind and thoughtful response. I agree with you that the thought of something is often much worse than the actual deed and unfortunately because my op wont be til early June, Ive got way too much time on my hands as I cant work whilst having Chemo, to sit and overthink and wind myself up about it. Still, I could also use this time more positively to start looking into nastectomy in more details rather than sticking my head in the sand, forewarned is forearmed and this situation is not going away. So thank you, you have helped me xx

Hello BJM and thank you for your reply. A lot of what of you said are definitely things that go through my head, usually in early hours. When the super slim nurse was telling me nicely that i have to loose 5 stone in weight to be able to have breast reconstruction and not to worry i will have a nice neat scar, i wanted to scream at her. How could she possibly understand how i was feeling, im in menopause which caused weight gain, then had to have medication for effects of medication which side effects are weight gain, the chemo leaves me breathless so cant exercise but no pressure you need to loose 5 stone and you'll have a lovely scar, thats why i need to talk to women who know how im feeling, and this seems to be the perfect site for that support. So thank you for your kind words, i shall be seeking out other women who have been here and survived it and get their advice xx

Thank you Robbo.  I very much want the Lumpectomy, i appreciate that boob wont be perfect, and will be a little mishapen but im sure i can embrace that, it is for me a much prefable option.  Whereas with a Mastectomy, i hear of women still waiting two years later for reconstruction surgery, which i find appalling and I think this would cause me major problems with Mental Health and low self esteem.  Since the initial diagnosis i havent been in contact with the breast care nurses, im with the Oncology team at the moment, i think this is something I need to change and speak to those nurses in detail and get facts, and i will of course take up offer of counselling, as you say i have nothing to loose, so thank you for helping me xx

Hi Karrot

I was diagnosed last week and told I need a mastectomy and I feel shell shocked. I have very large breasts and don't think I will cope both mentally and physically being flat one side and large on the other. I was told they are not doing reconstructions at the moment due to covid. I have an appointment on the 16th March to see what they have decided. To say I am scared to death is an understatement. x

I am overweight and how dare they treat us like second class citizens. the consultant said it may be possible to reduce the remaining breast to even things up but no mention of losing weight before it could be done. I expect that is what they will say at my next appointment. Did they say why you would need to lose the weight ? Is it NHS criteria ? x

Hi,

I'm sorry to hear of yet another cancer diagnosis and treatment ahead.  I had a mastectomy, there was no choice for me due to a large tumour in a small breast, in my case I would have wanted the mastectomy rather than lumpectomy. I wanted the cancer out more than thinking about losing my breast and have remained flat.  The mastectomy itself isn't too painful, I managed with Paracetamol.  I agree with what someone else has said it is the fear of not having the breast, if the medics are recommending a mastectomy I would take their advise. 

Hope all goes well.

Hi Karrot. Sorry you find yourself here but you will find lots of good support and advice.  I'm 68 and had a mastectomy on 19th January.  I was terrified of losing my boob and didn't think I would cope mentally. I just couldn't imagine how I was going to feel when I first looked down and saw no boob.  I was really scared and even asked my surgeon a few minutes before the op if I really needed it. She said if I didn't the cancer would spread and I think the reality of what the alternative was hit home. I never wanted a reconstruction.

I have to say that I was actually fine. It was ok. My boob was gone and I even looked at the scar the next day when the Early Discharge nurses came to change the dressing.  Please don't be too scared.  It is frightening but you can do this. You will be alright. Believe me. No one could have been more anxious than me.  

It must be difficult to have the decision for a mastectomy come as a bit of a surprise and I expect that hasn't helped you adjust to it.   I always knew I needed a mastectomy from the start.  My surprise is that I now need chemo and start on Thursday.  Just another round of anxiety to deal with.  

We will get through this. Sending much love and hugs. Sue x