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I'm Not Alone

22 REPLIES 22
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Member

Re: I'm Not Alone

Can only add my own experience. Had a mastectomy left side and lymph node removal, it happened within 5 days after diagnosis, so didn't have time to think about it. I actually don't even 'like' the one that's left, weird I guess but that's how I feel.

Looking back now, would have had both off if had had time or mental capacity to realise what was coming. In saying that, I am not so bothered about having just the one now although it's a pain as am not small d-cup, although I now only have a 'cleave' rather than cleavage it would be great to not have to strap the other one on every day for balance!

My fella has been wonderful about it all I have to say, he just says it's who you are.

Given a choice again, both off!

JMHO
Nikki

Member

Re: I'm Not Alone

Hi jacqnotyetinthebox

I am sure you will receive support and advice from other users, but in the meantime, you may be interested in Breast Cancer Care's Resources Pack which contains lots of information and advice following diagnosis. It can be ordered through this site and I have given the link here to the section on the site where it can be ordered.

http://www.breastcancercare.org.uk/content.php?page_id=5255

I hope you find it useful.

Kind regards

Louise
Facilitator

Member

Re: I'm Not Alone

Hi guys, unfortunately I have just joined this site, and this is my first entry. Was diagnosed 2 days ago with Grade 2 Breast Cancer and am in a bit of a tizz - to say the least! Think I'm having a mastectomy and breast reconstruction in the very near future, have to go back for more discussion with surgeon next week. HELP!

Member

Re: I'm Not Alone

Thank you I hadn't even thought of things like that, I guess this time is different. The hospital said they would give me some sort of "bra filler" so I don't feel self conscious walking out of the hospital. Although I probably will all the same. Wish I could take my lap top with me and keep my strength up by chatting to you guys!!
Julie... hope you get the answers you want and all round success - I'm behind you 100%. xx

Member

Re: I'm Not Alone

Mandy, you too, good luck for wednesday, please post n keep us informed when you are able.

have you packed your case. there is a thread about what best to take with you.

I will try and find it !!

hugs
Chris x

Member

Re: I'm Not Alone

Julia
I am so frustrated for you. I am a lot older than you ,52, but if I have to have one boob off I too would prefer to have bi lateral, yes if only to feel that I look better and that I dont have to wear a prosthesis every day if I choose not to. Look on these sites and you will find several women who have chosen, and had, bi lateral by choice. I am not trying to tell you what to do by any means but where as you say is your choice in all of this. I would ring your bc nurse now, before your am appt and explain your feelings to her and ask what can be done. I believe you could ask for a second opinion from another surgeon but you may have to have some councelling first to check that you know the pros and cons.
You have lymph nodes under your arms and this is where the cancer can get to so some of these may need removing too but there are many of us having nodes removed so dont worry too much about that. There is a bcc help line on this site, number to ring with specialist nurses and people who have knowledge of all of this, some first hand, please ring if you need to chat, freephone,

0808 800 6000, open 9-5 m-f, 9-2 on sat.

Dont be forced into a corner, check your options
good luck
Whatever you choose, ther will be lots of us routing for you,
hugs
Chris x

Member

Re: I'm Not Alone

Julia...
After my last comment about NOT having a mastectomy I now am - Although my lymph glands are clear, under surgery they found more lumps hiding behind the larger one that did not show up on the ultra sounds - he said that mastectomy was the best way of ensuring we nipped this in the bud with Chemo and possibly Rads at the end. I could have coped with taking a bit more off but this was a another blow that we had not really discussed previously. I got my news yesterday... I have my op on Wednesday. I am dreading the thought of waking up and seeing what I will see.... I am comming to terms with it trying to think of it as yes this is what I have and I have to do what is needed to kick it in he ass! I can't stop it and I hate not having the choice.
I also had fertility issues before all this, and this has just set it back even further. Thinking can I handle anymore bad news...
I don't think you are expecting too much to want to look normal... none of us asked for this or deserves it, but please do not think you are alone with it. We understand what you are going through and are always here. Try not to too hard on your loved ones - they are probably frustrated that they can't do anything to help - I know my other half is and my Mum only has to look at me and starts blubbing which then sets me off... Keep us updated - and we are with you all the way - Hugs M xxx

Member

Re: I'm Not Alone

Had an appointment today with my Doctor... Went in really positive about things but my good mood didnt last long. He said the lymph tests have shown cancer. What does this mean? And after me trying to persuade him that i was of sound mind and REALLY didnt want to come round from surgery to see one lonely breast and practically begging for a bilateral, he crushed my spirit by saying he doesnt want to do it and he thinks i may regret it afterwards... It was all downhill from there. Even the discussion of the reconstructive surgery turned sour as he couldnt give me a positive answer for the out come. Why is it all doom and gloom??? Feel like i'm expecting too much by wanting to remain as normal as possible (to look at) I'm now really upset and angry AGAIN.. I mean WHY bring me in to discuss surgery options when THERE ARE NO OPTIONS!!! I actually believed i would have a say in what happens to me but now i just give up. Ive got another appointment tomorrow morning to 'discuss' things again. More bad news probably! Then ive got a CAT scan in the afternoon. My fertility Doctor is on holiday till next week so everything is on hold till he's back. I feel like a robot now just going through the motions. Told my loved ones that i dont want anyone coming with me to appointments anymore. Whats the point? I hate crying myself but watching my mum/boyf cry is TOO much! Feeling empty. I dont think it can get much worse... Fingers crossed!
Take care.... Gooduck to you all x x x

Member

Re: I'm Not Alone

Hi Julia,

So glad you seem in a better frame of mind now and are no longer terrified
From what I have read on this forum over the past 2 years it seems we are all upset,shocked and angry at first and then when we have had our tantrums we get ready for battle lol Oh yes and then we start to crack jokes about our situation which is always a good sign!! You will get through this as we all have - a different shape maybe but still the same Julia you were prior to diagnosis who your family, your partner, lovely daughter and friends will still love no matter what.
Please keep posting and updating us on your progress.
Take care
Clarabelle x

Member

Re: I'm Not Alone

Hi Julia, I was going to have immediate recon on both, but only saw oncologist night before my op and was told that because I had two small tumours in one breast they were going to treat it as one large one and give me chemo and radiotherapy and as the radiotherapy can sometimes interfere with the implant he advised me to wait for the other recon. I had LCIS which turned to cancer in the right side but because I had LCIS in both did not want to wait for it to turn into cancer on the left side so that is why I opted for bilateral. I had LD flap and implant last time and the same again tomorrow. I was not too bad on chemo only knocked up a little the day i had it except for not tasting properly and skin did get sore on radio therapy and broke out but was not painful, Hope this helps.
Love Sandra

Member

Re: I'm Not Alone

Hi Julie, pleased this has helped you along, since joing this site, I have a huge list of questions to ask my Consultant tomorrow, things I had previously never thought of after hearing everyone elses stories I have learned such a lot. I try and think of this as a minor set back in life, and although a bit severe it may be a way of telling me to sort my life out - if anything good comes of this, I will not get stressed about trivial thngs anymore, coz its not that important. From now on I do what I want to do and enjoy it!!!
Good luck with everything and keep us posted.
Much hugs
Mands xx

Member

Re: I'm Not Alone

Hi Julia, Sorry you have had to join us but i too could not have got through my journey without this site. It does not matter what time of day or night and how silly you think your questions are there is always someone who has gone through it or thought the same things as you. You realise how many of us are here to give each other support. I (thankfully, and hopefully) am coming to the end of my journey having had bilateral mastectomy with immediate recon on one side,6 sessions of chemo, radiotherapy and going in on weds for other side reconstructed. It is hard but only think of taking one step at a time and you can and will get through this.
Thinking of you and sending you love.

Keep us posted on your progress.
Love Sandra x x x

Member

Re: I'm Not Alone

Hi everyone... Thanx for all your comments, they have really helped alot!! Infact i havent cried once since i found this website and i feel normal again!?! I finally got hold of a BCN today and had a little moan about the lack of support through the first couple of days after dx but bigged up this forum as you have all been my 'counsellors' and got me through the worst week of my life!!! Tried to get some answers about my treatment today... Ive got to have the right breast removed but i'm gonna ask for both, i know it might seem strange to some but when youve looked down on a whopping pair of 34DD's for 13 years, i dont think i could handle waking up to just one:0( BCN said i would have to discuss this with my Doc and maybe a shrink before hand, If ive got to go through this terrible ordeal, id like atleast a small bit to be on my terms!!! Then a course of chemo and radio... Oh, and tabs... Oh and ive got to go freeze my eggs... The whole shabang so it seems. I know the cancer is there main concern as it is mine but ontop of the possibility of losing my hair, i'd like to keep a little bit of normality and hey, i cant even remember the last time i had a flat chest!!! Haha... It'll be nice seeing my feet for a change! God i dont half go on!!! Hahaha... Went back to college today (im in my 2nd year training to be a plumber!) Got a couple of exams this week to keep my mind busy and then the dreaded appointment with my doc to discuss my surgery options... But oddly enough, im not so afraid anymore... You have all been an inspiration to me... Thankyou all so much.. I couldnt have got through this without your touching stories and strength.
Love yas.... Take care x x x x x

Member

Re: I'm Not Alone

hi julia
i was only 29 wheni was first diagnosed with bc i had a lumpectomy chemo and rads that was 14 years ago i was told in august that i have bc again and am waiting for a mastectomy next monday with im recon with tram flap i am a wee bit worried adout such a big op but i keep telling myself i beat bc 14 years ago i will beat it again i look at it like a re match i will win try keep positive huny it really does help take care
big hugs
joan xx

Member

Re: I'm Not Alone

Julia, I'm there with you. I found out in early October 2 weeks off my 30th Birthday. With no family history I too thought why me, why so young, what did I eat or do wrong to get this!!! I am no Claudia Schiffer,but I too loved my boobs. Although touch wood I did not have a mastectomy, now the swelling is going down I am 2 or 3 bra sizes smaller in one than the other. Not noticeable if you didn't know apparently, but I am very aware of it - saying that nothing a chicken fillett won't sort out!!!

The comment about having cancer not cancer having you is so true... I woke up on day 2 after a night full of tears, I asked my partner if it was a dream, he said no.... I had a meeting with work about a forthcomming period of sick leave, they were very supportive, I started to get my head around it, and thought ok, this is it... it won't go away until I start treatment. The worst part was being told you have it - Cancer is such a hard word to hear, anything after is a bonus.

Just before surgery I said to my surgeon If you get in there and feel you should remove the lot, do it... I'll sign something now if you wish, I don't want more surgery - just do what you have to.... as for the scars, I will look at it as the time I kicked Cancer in the butt.... They can do amazing things now, when only you wil know.

Sorry you had to join this forum, but it has helped me a lot as a fellow younger victim, and I'm sure you too will find it very supportive.
Mands x

Member

Re: I'm Not Alone

Hi Julia

I am not really good about giving advice on here.. but I want you to know that i'm thinking of you.

Member

Re: I'm Not Alone

Julia, you described how i felt exactly! I was diagnosed in mid September and it was an enormous shock.I am feeling much more positive now, my operation is booked for 28th of this month, so i might start to get the wobbles again,but my attitude now is the 'I have cancer, IT doesn't have ME!'............I have been able to ask the team lots of questions and i feel very lucky to have found a surgeon and bcn who i feel very comfortable with and able to ask any question i like without fear of feeling silly about it.However, like you, i am still waiting for them to tell me they made the wrong diagnosis.(I told them i keep waiting for them to pop out wearing clowns clothes, red noses, the lot,but my nurse just tells me, no, it's the correct diagnosis!) I am nervous about the op, and treatment, but,it has to happen in order for me to be well again and get on with my life. There's lots of advice on here from people who have already been through it, so i'd say just ask any questions and someone will have an answer for you.

Member

Re: I'm Not Alone

Hi Julia

I was diagnosed mid September. I'm 36 with 2 little girls, 1 aged 3 and the other 8 months. I'm currently undergoing EC chemo (3/4 gone) before having 4 x tax. I'll then have a full masectomy before more treatment. I suspected I had breast cancer before my diagnosis and used to look at my breast (mine's the right one too) and think, if you would just go back to normal I'd be so happy with you as you were! I never complained about mine either. I too keep thinking they are going to tell me they got it wrong, the cells look malignant but aren't or something but I know that's not gonna happen! This will be so raw for you right now. The day I got confirmed I was really strong until the evening and my OH and I were alone and I just fell to peices. I just couldn't believe this had happened to ME! I also felt that I had been told I was going to die. When of course no one had said anything even romotely like that - quite the opposite (though no promises!). I had a rough few days but by day 4 was starting to see a way forward and be positive. And I am now really positive and whilst the cancer is always with me, it doesn't dominate my life.

I spoke a lot to my BCN who is excellent and helped me an awful lot along with giving me lots of advice and encouragement. I have also read a couple of books that I have found really helpful. One in particular is Breast Cancer Survival for newly diagnosed breast cancer by John Link. This explains a lot about breast cancer and treatment and gives much advice. I now feel fairly well informed on breast cancer and whilst there is a lot a don't know about my personal diagnosis yet, I feel that when I am ready, I will be able to find out and that I will have a more informed perspective. It was useful to me as I could read it objectively as I only really know the basics of my own diagnosis ( invasive ductal, 10cm, grade 2, eostrogen +).

Anyway! Sorry to 'meet' you this way but really hope that I can be of help to you and vice versa! Just one more thought. I don't know what might drive you to req a bilateral but unless its medically recommended I wouldn't panic to it. Its a question I asked immeadiately and was told it wasn't necessary but I still plan to explore more fully though I want to hang on to my healthy breast otherwise

Take care XXX

Member

Re: I'm Not Alone

Hi Julia

Welcome to the Breast Cancer Care forums. As well as the support you are receiving from the other users of this site you may find BCC's resource pack helpful, it has been designed for those newly diagnosed. The pack is free of charge, if you would like a copy just follow the link below:
http://www.breastcancercare.org.uk//content.php?page_id=7514

If you feel you need to talk to someone in confidence then please give the helpline a call, the staff here are all either breast care nurses or people who have personal experience of breast care issues. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.

I hope this is of some help to you.

Kind regards

Sam
BCC Facilitator

Member

Re: I'm Not Alone

Hi Julia, I was aged 34 at diagnosis (last Jan) and also had to have a mastectomy (last July). Like you, I also wanted the other side off for prevention and had that done this May. I am so sorry you have had the news that we all don't want to hear and I'm not especially good with comforting words- I know that the first week i was told I had cancer, I was like a zombie- not eating or sleeping, however I felt so much better once I knew what my treatment plan was and although chemo and rads are not great, they really are wonder drugs in what they can do for your cancer.
Over 18 months on from my diagnosis, I look healthy and feel healthy and my boobs are fantastic- the surgeons really are god like and although they are taking away your breast, they can reconstruct so that people would NEVER guess what you have gone through.
Wishing you all the best and cyber hugs
Katy x

Member

Re: I'm Not Alone

Dear Julia,

You are not banging on sweetheart - you are still in shock and it will take a while for the news to sink in. You are definitely not ALONE and I'm sure you will find the support and advice you need from all the lovely ladies using this forum. I remember when I was first dx in Dec. 07 and how I just couldn't accept the news or that it was happening to me. I was so angry, I kicked my bag around the reception area of the breast clinic, just wanted to take my frustration out on something and my bag was the nearest thing ha ha !!!!! I can sort of laugh about it now, but remember how scared I was at the time. I have now finished with my treatment and am sort of starting to get my life back on track and looking forward.

I had 6 months of chemo, mastectomy with immediate recon expander implant and radiotherapy, so nearly a year of treatment. At the start of this process, I could never have imagined that I would have come through the other side as well as I did and am now trying to put this year behind me and look forward - you will as well, I know it doesn't seem like it at the moment, but you are so, so young and you will find the strength to deal with this and live the rest of your life. If you need any advice please let me know. You will get through this - I have a 4 year old daughter and loving partner and that it what kept me going through the darkest moments - I had to get through this for them and you will too. Lots of love, Jacqui xxxx

Member

Re: I'm Not Alone

Hi Julia,

so sorry you have had to join our club but trust me there is no better club to join for help, advice,love and support.
It is a huge shock - particularly when you are pretty much told it wont be cancer and then it turns out to be just that.
Bang on as much as you like we have all done it and it really does help - you are not alone with this as you will find over the coming months - we are all here to help you through this - and you will get through it and yes you too will be giving advice to others in time.
I think its a gut reaction to want to have both breasts removed and I did ask but my Consultant refused to remove a healthy breast with no good reason!
Now tell us all about what has gone on so far................
Love and hugs
Clarabelle x

Member

I'm Not Alone

Hi everyone.. My name is Julia and i'm 28. I was diagnosed on 31st Oct (breast cancer awareness day!) It came as such a shock as the doctor only did a biopsy as a precaution saying he was 96% certain it was nothing to worry about. He too was devastated when he gave me the news! I've got to have a full masectomy on my right breast and i'm gonna ask for a bilateral to prevent it coming back in the future. I love my boobs and have NEVER complained about them and now this... I feel like its all a big mistake and the doctor has it all wrong... I mean WHY ME??? WHY NOW??? I was in pieces last night as I couldnt get my head around it and had no one with a bit of knowledge to talk to (BCN not available at weekends) If thats the case WHY the HELL did they break this news to me on a FRIDAY!?!?!
My mum found this site for me and reading other peoples experiences and stories has given me so much hope... I wouldnt have made it through the night or day without it! I'm still terrified of whats to come but i know i'm not going through it alone. If anyone has any advice i'd welcome it with open arms... I have a loving partner, daughter (2yrs) and family but sometimes you need to hear it from the horses mouth so to speak... Hope to help someone in the same situation one day in the future... Sorry for banging on!!! XXX Julia XXX