Emotions after it is over

Hi Star and Kylie and Nic, I still havent started the tamoxifen. I've delayed as I ran into enough troubles getting over the op. I was back in hospital with a breast infection over the lower half of my reconstructed breast and the skin had to be removed and a split skin graft taken from my hip.

My recon breast looks like a bite as be taken out of it...mind you the area that died was enormous and the plastic surgeon managed to make the graft area about 8cm x 2 cm , which was better than it looked like it was going to be. Then I have developed scarring on the inside of the breast like a thumb print and the lower half of my breast has developed lymphoedema. Plastic surgeon says she hopes it will settle down in 3 months....fingers crossed. I found a Target surgical bra with a formed cup and so I am pleased to say I am back at work and look normal in clothing...yeah!!!

I had to really talk myself into what do you want from this..1, get rid of the breast tissue and reduce my risk of getting the cancer back , 2 look normal in clothing without a prosthesis. Those were my basic focuses and I have had to tell myself that is enough and if the appearnce does improve in 3-6 months then that is a bonus. Luckily I do have a wonderful husband.

Kylie I am 50 years old but had my 3 kids late in life and they range from 16yrs to 11 years. They are old enough to understand mum is more emotional at times and I try to explain to them if I have been particularly crazy about things.

You also asked if I was picked up on screening... I should have been but my sister (37 yrs at diagnosis) who died 7 years ago was the only one with breast cancer and I had got slack thinking she was a one off case and it had been 3 years since my last mammogram when my oldest sister rang me to say she had breast cancer, that made me go get one and then I found out I had it too! This has been terrible for my mum as you can imagine.

My surgeon recommended breast conserving treatment for me , but we actually found my DCIS was multifocal so he said I had good instincts ( and I thought I was just paranoid) and I had made the right choice.

Hi Nicole,

Thanks it is so good to hear other peoples stories it makes you realise many others have been or are going through similar things to yourself. No matter how much others try unless you have been on this journey you can not truly understand how it affects you on so many levels. I like your idea of finding something to look forward to each day. Do you make it simple things like a treat or make conscious plans. You also mentioned coping strategies . What have you found most useful? Take care. Kylie

Hi,

Thanks for your reply. It is nice to talk to someone who has exactly the same as I had. Hope the drain tubes etc are all gone by now!!! Wow what a rough time for your family. I am assuming you are quite young and did they discover it because you were having regular check up because of the family history or did it just happen randomly. Did they recommend you have the other breast off at the time? Family history isnt an issue for me and they dont have alot of evidence on the benefits of tamoxifen and DCIS. The % didnt improve that much but hey ideally none of want to head down this path again if we can help it. Not sure what other options there my be but i would love to feel happy and feel like i am enjoying life again. At the moment it sometimes feels like I am just going through the motions. I have 3 young children and i want them to have their Mum back 110%.

Emotions are such powerful things but it is challenging when they feel like they dont belong to you because generally this is not your nature. Lets hope tamoxifen is smooth sailing for you. Stay in touch. Kylie

Hi Sandra,

Thanksfor your reply. Reading what you wrote is me to a tee with the anger, being grumpy with everyone often for no reason. I have also been seeing a psychologist about every 6 - 8 weeks but her office rang on Friday to say she wouldnt be practicing again before Sept at the earliest. So now it looks like i have to start from the beginning with someone else which isnt really ideal. I have had a couple of others mention anti depressants and i think if things dont start to improve in the coming weeks I am going to have to go and see my Gp to see what he suggests. I am pretty determined and strong willed and have always been of the idea i should be able to deal with what ever life threw up at me but maybe i am at my limit. Are you still on tamoxifen? I am meant to go back on them mid April to see if the symptoms escalate again. If they do I am not sure of what options I have but I dont think i would survive 5 years feeling like this. It is not fair on me or my family. Take care. Kylie

Hi Kylie

I am also struggling with Tamoxifen as it gives me massive hot flushes, mood swings and fatigue (or is this the early menopause - who knows??) I  saw my oncologist today who said I need to be on it til the end of the year and then if my hormone levels drop, I can try another type - Ive tried lots of andidepressants over the years after I lost my father to cancer and my mother developed it - and found the best one to be Axit - a lot of them make me sick. There;s nothing wrong with taking antidepressants - we have all been through hell with having cancer.

 I think everyone expects us to be happy once treatment has finished  and don't realise how life changing it is- the best thing I have done it to find a great psychologist who gives me strategies to cope - cos its very hard to  be up all the time when you are often feeling down.

I wish you all the best - find some things you really enjoy in life and do them and find things to look forward to every day - that my other strategy and I'm trying hard to persist with it!

Cheers Nicole

Hi Kylie, I am about 5 months behind you. Also DCIS and mastectomy and immediate reconstruction 10 days ago; so still battered and bruised. I have two sisters with breast cancer as well ( one has already died) and tamoxifen has been recommended for me too.

My concern is the family history. Is that an issue for you too? There was study in the Journal of oncology dec 2012 that shows BRACA negative women with strong family history have a 15% chance of getting cancer in the other breast. Tamoxifen is supposed to reduce this by 50%. The general population risk is 9%. So although I'm not thrilled I think I will do what i can to put up with tamoxifen. If you don't have a family history then maybe you could go without the tamoxifen ( talk to your doctor).

Perhaps talk to your local doctor about antidepressants. Also be nice to yourself I think its quite reasonable to feel crap after what we are going through. Emotionally this has been the worst thing I have ever experienced and I've had lots of other traumas. I just think 2014 has to much better.

I am a devotee of the food for cancer site and there are lots of dietary suggestions and I can't wait to to get back to regular exercise again , because that always helps stop me from getting down.