I had my appointment with my consultant today following 6 lots of chemo. He has really made me so scared and nervous - I was being quite positive during the chemo and it has really hit me hard the seriousness of the situation.
Firstly I had an ultrasound scan and mammogram this week to compare the before chemo and after chemo results. Apparently there is another lump in the affected breast which nobody saw before which has really freaked me out - how could they have missed it? So I definitely have to have a mastectomy (was hoping for lumpectomy) as there is also 8cm of microcalcification (DCIS) which I wasn’t aware of either.
Secondly when the consultant examined both breasts he said he could feel something in my other breast (previously this had shown micro calcification which turned out to be benign) - I am hoping this is scar tissue from the biopsy which was the nastiest biopsy ever it’s called a stereo core biopsy. So now I have to go back to the hospital on Monday for an ultrasound scan and possibly biopsy and to see the consultant again. I’m thinking of saying just take them both off - I don’t want to give this disease any chance of coming back.
I’m extremely tearful and emotional - don’t really wanna speak to anybody right now and people are phoning wanting to know what’s going on. I feel terrible for my parents (my mum came over faint during the appointment and later on tearful) I can’t bear how this is making her and my dad and the rest of the family feel. I just can’t get my head around a mastectomy and now it’s looming and is real.
I can’t bear all the uncertainty and the fact that the consultant and oncologist cannot tell you anything for certain. I haven’t felt this bad since right at the beginning when this first happened. I’m scared now the chemo has finished - I felt safe when I was having chemo and would have had more if they had let me.
I’m just having a really down day and really hope I can snap out of this as it’s not like me. I feel in shock really from today. I hate feeling like this and just want to feel normal again.
Sorry to moan coz I guess I’m not the only one who feels like this and is in this situation- there are so many of us out there.
I am so sorry to read that you are feeling tearful and emotional at the moment, but please don’t feel that you are moaning, these feelings are common and I am sure you will receive plenty of support and advice from other forum users.
I know you say you don’t want to talk to anyone at the moment, but perhaps it would help if you telephoned the Helpline
on 0808 800 6000. Everyone on our helpline either has experience of breast cancer or is a breast care nurse and the team comes from a variety of backgrounds, so you can talk to someone who has an understanding of the issues you are facing.
The team is able to talk about both technical and emotional issues surrounding breast cancer and breast health
The helpline is open Monday to Friday 9am-5pm and Saturday 9am-2pm
Thanks Quisie and Katie (Moderator)
A friend popped in last night and gave me a big hug and we chatted a little.
Sometimes I feel so alone with this horrible disease.
Rebz, I know, there are days when it just gets too much for us. But, we will get there - hugs
I am so glad our friend popped by last night.
you take care
hugs
x x x
Hi Rebs.
It was 2 years yesterday that I had the same shock of having to have mastectomy.I also had an invasive DCIS and when the final checks were done,It was revealed that i had two and not one as shown on the scan&ultrasounds.The second one was hiding behind the duct.I also had lymph node clearance.I had mastectomy ,chemo & radio.No reconstruction.Acceptance of the fact helped me to get through it.I was not bothered by loosing the a breast.I was loosing the cancer cells and the lump and the lymph nodes.I wear a prosthesis now and again and had to wear bras with pockets to insert the cotton or proper prosthesis.
Hugs and Support is very important.I had 3 female colleagues who visited me at home whilst having treatments between the 14-21 days after chemo sessions.
My mother & brother were due to return for abroad,after attending our wedding, when i was diagnosed and i was hard then .I told my brother & mother to get on the plane and I will be alright.It helped me to accept my ordeal without people crying around me.It made me feel stronger.My husband was with me all the way through my journey.
I guess ,sometimes it is easier to be hard to protect yourself.People around you must accept as well what is ahead.It will be a better journey for everyone.It is nice to have close friends and family to boost your courage and confidence.
now 2 years on, Im back to work(9months to be precise).You will surpass the pains and tribualtions of the treatment and you will look back in time and pat yourself on the back and say…Hey…I surpassed it.Give it time and give yourself enough rest.
Take care and I will always think of you on your new journey.
Thanks so much for your reply it has really cheered me and given me hope. I’m not as shaken as yesterday but still just can’t quite believe this nightmare. Our stories are really quite similar in terms of treatment except I’ve already had my chemo. I’m also having my lymph nodes out as you did as had one big lump in my armpit as well as the now two lumps in my breast. I’m not allowed to have a reconstruction until 2 years have passed. It’s so good to hear that you are 2 years + what a journey you have been on.
I always knew the operation part was going to be hard for me to get my head around but didn’t realise just how much. I do have a lot of support which is great it was just that yesterday I couldn’t speak to anybody without bursting into tears. That feeling has subsided to some extent.
Thank you for sharing your experience with me and wishing you well always.
RebzAmy
I am so sorry to hear things were a little more complicated than you first thought but I am glad the consultants are by the sound of it doing a thorough job.
As a mother, if this had been happening to my daughter I too would have been upset, but please remember if I am sure your mum and dad would not want you to worry over how they feel. You will all put a brave face on things now and then and I am sure your mum will know this.
I hope you have a clearer picture as to your treatment by the end of Monday, I think you will find they waiting game worse than the operation, but then you have been through the first set of treatment haven’t you.
Don’t worry about shutting people out, they will if they are truly concerned, completely understand.
Hi RebzAmy,
Im glad that you I have cheered you up.I agree with Carol.Those that matter,when they are shut out,will do understand.If they dont,you are better off away from negative feelings.It doesnt yet you one bit.You need morale boosters and support.You will be your own judge as to how your feeling and how much access you need.Always remember that help and support is surrounding you.You only need to reach out.I even joined the breast Cancer Haven in London after 6mths of chemo,whilst going daily for my radiotherapy to have support in terms of reflexology,nutrion advice and yoga classes.My last visit was on Sep2006.As i am back to work, I havent had a chance to visit and join their small classes recently.
I was in a similiar situation 2.5 years ago. Had chemo to shrink 3cm lump, after last 1 did a mammogram, consultant was very woolly with results, could still feel lump, he just said ‘it feels softer’ so I felt it hadn’t done much, they also then told me about growth found on kidney (had liver ultrasound 4 months earlier, did they miss it then!) which they wanted checked out to see it was nothing, also muttering about radiotherapy before surgery to try & shrink lump - it was all very confusing & frightening,I just freaked, it was all so difficult to take in & disappointing. However, the kidney thing was fine, when I subsequently had my mastectomy as planned, the lump had actually shrunk to 7mm, 2/18 nodes involved (1 was enlarged at diagnosis) & 11cm of DCIS(which I hadn’t known about prior to surgery). But I’ve now just passed 3 years post-diagnosis & (touch wood!) am doing fine, just moved onto yearly check-ups.
I hope the results of your tests next week turn out fine.
Thanks ladies for all your support - it really does help as my emotions are all over the place right now and it’s weird as I was feeling so strong before and just felt in a sort of routine with the chemo and also felt safe whilst being on it. I also feel nervous as wonder is the herceptin working as I don’t think it works for everyone. Everytime I think about my family and friends and what it is doing to them it makes me emotional. I’ve got that horrible scared feeling inside me again which I haven’t had for ages.
Sandra it is really good to hear that the kidney issue turned out to be fine. I was told initially there was something on my liver but it turned out to be a lesion or something like that. They scanned me again last week and it’s still there which is good as if it was something then the chemo would have got rid of it and that would have meant it had spread.
Rose I might try the Haven - it’s quite far from where I live but the journey is doable - probably 1 1/2 hours travel. I’ll call them tomorrow as have been looking into what they offer.
Tomorrow is looming now and I guess I’m gonna have to prepare myself for the appointment and whatever they are gonna throw at me - hoping that the “lump” the surgeon felt on my right breast (the supposedly good side) turns out to be scar tissue from the biopsy otherwise how could they have missed it and does that mean it could have grown whilst I was on chemo - I sure hope not.
I had a nice evening last night with a few friends got takeaway and wine and we didn’t discuss anything to do with breast cancer (they have been asked not to in advance).
Thanks so much again for your comments and support.
Rebz xxx
Kim thanks for the hugs and support. I’m very nervous about today. Still got a while to wait and in the meantime my stomach is playing up something chronic due to nerves.
I think I’ll try and get out of the house to take my mind off it. It’s a nice day today which helps.
To everybody else who is in the same boat as me I am thinking of you as well.
Hi. Just got back from ultrasound scan and appointment with consultant and the scan showed cysts and scar tissue so what a relief that the other breast is clear.
I talked to the consultant about having a double mastectomy and he said that the most important thing to do right now was concentrate on the diseased breast and get that sorted first. The other one we can worry about later on down the line. I’m having the BRCA1 and BRCA2 gene testing so when those results come back we can make a decision based on those results.
So generally I’m feeling a little brighter although still very nervous about the operation.
Sounds daft but that’s great news isn’t it? (Who’d think an awful situation not made worse is a better situation) I hope knowing there is no cancer in the other breast seems a little more manageable at the moment.
Yes I know what you mean about saying it’s good news - my mum said that to me and I wasn’t sure how I felt but then I realised that I do feel better about it although I did feel much better and happier whilst I was on chemo. I think getting to this stage has made me more nervous as I know that the operation will provide more information and it’s playing the waiting game again.
Hi Rebz, am so glad the other breast is clear for you.
Just to give you another opinion, I had a mastectomy prior to chemo back in March. To be totally honest within no more than 6 weeks probably I was completely comfortable with the loss of the breast and actually got in a bigger state about my hair loss when it happened!!
No one on the outside world will have a clue, I have been on holiday in my flash new beachwear (with prosthetic pockets) plus it was a perfect excuse to buy a lot of new clothes to suit the more substantial bra I needed for the prosthetic (I am a D to DD cup)
I have to say I do wish I had gone for a double mastectomy, but when you are dealing with getting rid of cancer I can see the sense in just sorting where the tumour is first. If, and it’s a big if, I go for reconstruction I will definately ask to have the other breast removed and a have an implant as I have always had ‘lumpy’ breasts and know I am going to panic at every lump and bump I find!
Very best of luck in your treatments and I hope it all goes well for you. I have found so many of us come out stronger people with a true sense of appreciation of life after all this.
Hi Rebz,
I had double mastectomy less than 3 weeks ago due to having invasive lcis in the right breast. Nothing in the left breast but decided to go for it in one go as i couldnt go through the anxiety of wondering when it would appear again. I only had recon on left breast as waiting to find out if radiotherapy or chemo is needed on right breast. Just thought i would try and reassure you that the operation was nowhere near as bad as expected with no pain only discomfort in the back from muscle taken for recon, whishing you all the best and sent with big hugs.
Sandra x x x
I also got in a state about my hair loss and was very emotional and touchy about it but I did get used to it and in fact today picked up a wig which I got free on the NHS and it’s actually really nice. I guess the feeling of losing a breast will be similar i.e you adjust - you have to.
I’m not allowed to have a reconstruction for two years so due to radiotherapy. I think from what I can understand most ladies say the operation is not painful. It’s more the emotional aspect of it that I’m worried about. When I was first diagnosed I would touch my breast as little as possible when I was showering or bathing as it scared me and made me feel squeamish but I have come to terms with it now. I know that’s how I’m going to be about the mastectomy I won’t want to look at it or feel it - I guess I’ll have to adjust - everybody seems to.
Thanks both of you for your support and good wishes and I wish the same to you.
Rebz xx