Hi all. New hear but I’ve been reading a lot of posts for the last few weeks and hope all is going well with you.
Where do I start? Well 6 months ago, yes I know 6 MONTHS, I noticed my right nipple was itchy and a bit crusty,I put it down to washing powder, body lotions that kind of thing because it would come and go, gradually spreading to my areola, I even googled cream for itchy nipple and it came up Paget’s disease - a rare form of BC, I still dismissed it. I then noticed blood in my bra on 3/8 so told my hubby who made an emergency appointment with GP the next day. She was worried examined me and found a lump. I was referred to the BC clinic urgently and went 18/8. At this point I still wasn’t worried, I expected a mamogramme to be fine and home. This didn’t happen, I saw the dr then had a mamogramme which showed another lump in my left breast. I then went to ultrasound and this is the part that is slightly worrying me, they were both really nice and chatty whilst doing my right breast and when I asked what they thought she said "oh to me it looks like fibroadema but Dr’s will check it, on my left they both were quiet and again when I asked she said "I’m not really qualified but Dr’s will look " . Back in the waiting room to be called again to have US assisted biopsy on both lumps the back to dr who did punch biopsy of my nipple! I’ve still got the bruises.
Thing is I’ve been fine until this morning and now I can’t stop crying and going over the clinic appointment in my head. My family have had enough to put up with as I was diagnosed with epilepsy 3 year’s ago and I’m uncontrolled, can’t work anymore and can’t go out alone so I’m trying to be upbeat for them but inside in dying.
Sorry for my life story. Xxx
Hello Debbie,
I felt really sad reading your tale of the last few weeks, partly because I know how the waiting feels and partly because you seem to feel some guilt about your loved ones and the pressure they might be under. IF you have a BC diagnosis, and obviously its an ‘if’, as the biopsy results aren’t know yet (though you feel you got the impression that all was not well), there is nothing you have done to cause it. Nothing! Life will have just dealt you an unlucky blow, unfortunately ontop of your epilepsy, but none the less it isn’t something you had a choice in. Its obviously in your nature to care for those around you and worry for them, as a higher priority than your own needs, but I’m sure your family love you so much, and would feel upset if they knew how you were feeling. I don’t think you can be upbeat all the time, and do need to share some of your thoughts with them, as that’s what builds strong families.They will see it for what it is, a horribly bad piece of luck.
If you were to get a diagnosis, then they will keep loving you, and want to keep supporting you, and they will learn to live with it…just as you will…as the positive about breast cancer is that there are effective treatments for the majority of people. There are a few people on here right now who seem to have been dealt a ‘double whammy’ and have another medical condition (e.g. MS) to deal with is as well as their diagnosis. I think it requires more input from their medical team who is dealing with the other chronic condition, but its not something I know much about I will confess.It might be worth doing a search on this site for epilepsy and bc, just to see if others have had experiences.
I can’t imagine how it is for you to have uncontrolled epilepsy, it must be incredibly debilitating and distressing for you and those around you and I’m not really sure that I’ve helped much in my reply, but, I just wanted to let you know that the deep despair you are in now won’t last. If you have anything there that needs treating a highly skilled team will find the right treatment plan for you. Waiting for results is agony, your wording of ‘dying inside’ sums it up. Talk to us about it though, we have been there and are happy to listen x
Thank you Charys so much for your reply, it has really helped me just getting my thoughts out of my head.
Your reply was lovely and very encouraging, but please don’t feel sad, I expect you have your own deamons just by the nature of you being on this forum and I hope everything is going well for you.
You read me very well, guilt is my middle name at the moment. When I was diagnosed with epilepsy in 2013 I had two tonic clonic seizures on 18/8, one week before my daughters 18th birthday. I was in hospital for 10 days so all our plans went out of the window as all the focus was on me. This year is her 21st, and again 18/8 was my clinic appointment we had planned so much to kind of make up for her 18th I was gutted. So I hid my emotions, something I have become very good at over the past few years, smile and hide.
Don’t get me wrong, my family are amazing, really supportive and understanding but I am supposed to care for them.
I am an exceptionally positive person in general and we have all said what ever happens we are a strong family and can deal with it together but deep down in know I cant.
My daughter also flies on holiday Friday so I am praying for good news as I don’t know what I’ll do, lie and let her enjoy her holiday or tell the truth and spoil it for her.
Thanks again Charys, I appreciate it. X
Hi Debbie, It’s the worst time waiting on results and I think everyone of us here felt driven to dispair and beyond! It’s easy to dismiss things as you can’t imagine anything could happen to you , it’s quite normal and in the grand scheme of it all a few months really won’t make much difference, you have so much to deal with already the thought of anything else must seem beyond comprehension but if you need to face this then you will, I never imagined I would ever cope but I did and I’m done with it all and enjoying life again ? Hoping all will be good with your results but we are here if you need to come back for help and support Xx Jo
Hi Jo, thanks for your encouragement I appreciate it.
I think I’ve put it to the back of my mind for the last month and pretended it wasn’t happening and now I feel like tomorrow could potentially change our lives again.
Stress can be a major seizure trigger for me so I really try to suppress it.
I’m sure everything will be fine.
Thank you for listening
All the best to you xxx
Thank you so much Charys.
Yes she would be so cross with me, I got this appointment letter the day before her birthday and she asked if it had come when she came home from work (as she did everyday ) and I said no,whilst crossing my fingers in the washing up bowl haha. The thing is the letter has -general surgery outpatient appointment - on the heading and I knew she would want to see it so I kept mum. I told her on Monday after we all had a lovely weekend.
As for my epilepsy, yes my consultant is pushing for surgery but I am really reluctant due to the risk involved, we’ve discussed it as a family and decided against it at the moment. The concoction of medication I’m on at the moment seems to be having some impact in that I’m having the big TC’S around 1 a month instead of every other day so less injuries so fingers crossed for that.
As you say tomorrow is unwritten
Thanks again for the chat and hopefully I’ll have good news tomorrow xxx
Thank you so much for yesterday’s support, I’m pleased to say it’s good news. Both lumps are fibroadema and the punch biopsy of my nipple just showed inflammation so thinks maybe eczema ? to say I am ecstatic is an understatement. I feel emotionally drained.
I can’t help feeling about the ladies in the clinic who are going through the same as I just have and maybe don’t have such a good outcome ?heartbreaking.
On a positive note, I’ve decided to give up smoking, I really don’t want to go through anything like this again if I can help it.
I think I’ll maybe keep checking in to maybe help other ladies in the same position as I was.
Thank you again for yesterday’s positive chat. Hope things continue to go well for you.
Debbie xxx
Thank you Charys,
I was walking on air out of the hospital. Just been for a meal with my hubby and daughter, it tasted like the best food I’ve eaten. Strange feeling like I’m so lucky but it seems like months ago since I went to see my GP.
You’re right sometimes we over analyse things and draw the wrong conclusions.
Thank you again for yesterday, I can’t tell you how much you helped me honestly, I was even honest with my husband about my fears last night and broke down to him, something that I never do but needed to. I felt better for opening up and he said he felt I was shutting him out. This morning I think we both went in there stronger so thank you.
All the best Charys, thinking of you.
Debbie x
Most definitely Jo, things may not always be as they seem in the dark days and sometimes your mind can run away with you. Let’s hope people who are waiting for the dreadful day may take some comfort. I’ve been walking on air all day today feeling like I’ve dodged a bullet.
Thanks again for the support.
All the best for you. X