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Diagnosed, already had op and feel so alone....

27 REPLIES 27
Downbutnotout
Member

Re: Diagnosed, already had op and feel so alone....

x

ncscooby
Member

Re: Diagnosed, already had op and feel so alone....

hi all,
Just a quick update - no results 😞
My nurse called me first thing and said that they werent back yet, thought they would be later on in the day. They weren't....apparently the pathology was done but the report not yet. Very disappointed....

On a brigher note, i cooked something to eat for the first time since i found out about all this. So a small step i guess

Hope you are all hanging in there
N xxx
Jo1
Member

Re: Diagnosed, already had op and feel so alone....

Good morning ncscooby,

 

I've just read your post from yesterday and want to wish you all the very best for today when you go for your results.

 

I understand how having made your mind up gives you some peace - exactly how I feel having made up my mind to have a mastectomy (or two!). But your decision isn't written in stone, so you can change your mind if that's what you come to feel - or not, if that continues to be your decision. You're definitely sounding stronger and that's so important.

 

Take good care of yourself, thinking of you today, Jo

Downbutnotout
Member

Re: Diagnosed, already had op and feel so alone....

x

ncscooby
Member

Re: Diagnosed, already had op and feel so alone....

Hi Lisa97205 - i have been having an ok week, still tears everyday but feeling better within myself, a bit stronger i guess. We seem to be at roughly the same stage - well timeline wise anyway. I am trying to focus on the no spread, as if it had that takes a lot of decisions away. I go back tomorrow for the results from the second op, so anixiety kicking in at the moment :S

Work for me at the moment is my saviour (and i never thought i would ever say that!) it lets my mind rest for a few hours at least. WHen is your second op?

 

Flori35 - you're right (unfortunately) at some point i will be an old timer and will have been going through this a lot longer than 6 weeks.
I haven't ruled the chemo out completely (even though mentally thinking im not going ot do it is helping at the moment) and will definitley be going to the onc appointment, i mean it could be that they give me a 20% increase and in those circumstances it would be crazy to not do it. But i honestly do not feel that i will cope with it all. Aside from the fetility issue, its all the other stuff, hair loss etc that i think will be too much. I suppose to some people cancer v these, its a no brainer but its the way i feel....

 

I just want my life back and i cannot wait for the day when i do not think about all of this.

Coming on here and getting my feelings out has been good too, its hard sometimes talking to people that are close. No matter how hard they try they actually cant fully understand - and unfortunately everyone on here does

 

Thanks ladies xx

Lisa97205
Member

Re: Diagnosed, already had op and feel so alone....

Hi Nscooby,

Hope you are having a better day today. I have just had my results after my lumpectomy surgery - I need to go back in next week for a clearer margin. I was pleased it hadn't spread to the lymph nodes but so annoyed that I'd have to go through surgery again. Everything seems like a waiting game doesn't it? Keep your chin up and cry when you need to - you have cancer - it's allowed! I have also known for around for 5 weeks but as everything is done in stages you can't seem to get your head around anything - there is no focus and you are constantly thinking about the what is going to happen. I hope all turns out well for you. Find yourself a project to focus on to help take your mind off it all if you can - it will help to keep your head clear. Xxx
Kess
Member

Re: Diagnosed, already had op and feel so alone....

Of course chemo isn't pleasant, but it's doable and worth it if it helps beat your cancer. Getting yourself prepared for it from the practical side (hair cuts, wigs, stocks of food, puzzle books, heat pads etc) does seem to help with the emotional side too as you can feel a bit more in control.
sandie73
Member

Re: Diagnosed, already had op and feel so alone....

Hi Juliegal

 

Thanks for your good wishes. My appointment is to discuss my results is this Friday too. I was given brief results over the phone by my BCN on May 27th as I was on holiday and wanted to know. Mine wasn't good news and have had a few meltdowns over it.

 

Hopefully you will receive more positive news 🙂

 

Been distraught over the thought of chemo, hair loss and its undesirable side effects. But in order to kick cancer's ass it needs to be done. Hoping that by taking control ie getting my hair cut, arranging to get a wig and some head scarves that I will start to feel I can do battle with this.

 

Wish you luck on your horrid journey too x

Downbutnotout
Member

Re: Diagnosed, already had op and feel so alone....

x

sandie73
Member

Re: Diagnosed, already had op and feel so alone....

Hi nscooby

The further op to get more margins and ANC hasn't been booked yet. They are suggesting that I do the chemotherapy first and consider whether to have another WLE or a MX afterwards.

As for the chemo, fully understand why
you don't want it. I don't want it either but have a grade 3 cancer and hopefully got a long life in front of me. By having chemo at least I am doing everything I can to make sure it stays away. Got two children to think of and I desperately want to see them grow up and to meet my future grand children.

Suppose having no hair and feeling and looking like crap for 18 weeks is a lot better than not being around for my kids.

I am a full-time college student ATM. Give up my job to pursue my dream of going to university and getting a career that I always wanted to have. That has been totally blown out of the water now and i am unable to go to uni this year 😞 who knows if I will be able to achieve my dreams now. Cancer is so cruel and destroys so many lives. I HATE IT SOO MUCH!
juliegal1
Member

Re: Diagnosed, already had op and feel so alone....

Hi Sandie
It has been 5 weeks since my diagnosis of IDC too and I have app for this Friday for results following SLNB/WLE. I have this real feeling of dread that I will have to have more surgery too and thoughts that it may have spread further. I understand exactly how you feel, one minute ok the next a quivering mess. I think having people here to talk to really helps as family and friends are being brave for me. I think if I get the same news Fri I will want them to throw everything at me! I wish you luck on this horrid journey x
ncscooby
Member

Re: Diagnosed, already had op and feel so alone....

Hey sandie,

 

Are you scheduled in for another op to try and get the margins?

 

Ditto re the chemo, i have just turned 36, so they are saying they will still be recommending it (is a national guideline apparently) - the only thing that has kept me going to a certain extent is that i have decided that i am not going to have it. As like yourself the thought of all the stuff that comes with it, i dont think i will be able to cope. The fertility issue is massive for me (according to my sister, i dont have a partner so why am i worrying about that!!?) - this is driving me rouund the twist, its like no one gets how important that is. Yes they can freeze eggs or whatever but then it doesnt stop there does it, you dont just put them back in when this is all over, you then have to go through IVF etc... its never ending.

Remmber thought it is a choice - you can decide not to have it. My nurse keeps telling me that ultimately it is my decision and everyone will have different thoughts and feeling about it, but you are the only one that can decide what is best for you and what you will be able to cope with.

 

Its completely normal to have good and bad days. Mine are mostly bad, but i am taking hope that there ares some good times that i feel. I wonder when i will feel happy ever again.
It is hard there is no denying. Do you work? I have found that being in the office has kept me sane and is keeping my mind occupied at least during day time hours, which has taken the pressure off a little.

 

My thoughts are with you

N

sandie73
Member

Re: Diagnosed, already had op and feel so alone....

Hi nscooby

It's been 7 weeks since my diagnosis of grade 3 invasive ductual carincoma. Had my WLE and SNB biopsy on 12th may but unfortunately it came back as unclear margins and the one node taken having cancer in it 😞 like you I am devastated and fearful.

Because of my age (40) they are wanting me to have chemo which I am absolutely dreading. The thought of losing my hair and all the unpleasant side effects is unbearable and I just don't know if I am strong enough to get through this horrible period in my life.

At weekend I was out doing the gardening and feeling more able to cope but now two days later I am in the pits of depression, crying and unable to face getting out of bed 😞

Life has to go on somehow but finding it difficult to pull myself together 😞 xx

ncscooby
Member

Re: Diagnosed, already had op and feel so alone....

I am blown away by this forum, we are all unfortunately in pretty much the same sh*t boat but you all still are able to give constant words of comfort and support despite going through it all yourselves. Thank you.

EAM28 and jo1 it seems that a lot of women have to go back for a second lot of margins doesn't it? Of course the thing I am now worrying about it what if he didn't get enough this time, then what? I have a dent in my boob so guessing he took quite a bit more the second time.

Jo1 I am so sorry you are going through this again, it's hardly fair the first time let alone a second. I just don't understand this universe.
I'm comforted that I am not the only one crying at the drop of a hat! Is quite like to not cry anymore though! Things have moved on at an incredible pace for me, I found out 5 weeks ago and I've already had the two ops, i think the two week wait for the first results was the longest, it felt like an eternity 😞 and now that starts again.
I shall take the tip from you about the rescue remedy, anything is worth a try.
I also hope that you are having a manageable day without too many tears!

Thanks again everyone for listening to me rant on
Love N
Jo1
Member

Re: Diagnosed, already had op and feel so alone....

Dear ncscooby,

 

I'm so sorry it's all so very hard for you - like there's no let-up in the waiting and wondering. So many of us have tough times in the waiting periods and we don't hold it together well all the time either. This time around I'm very aware of having a short fuse and I'm finding my eyes filling with tears at the least thing - I've started wearing my specs all the time, hoping the my watering eyes will be slightly disguised. Last time I had breast cancer (other side), somehow I wasn't quite as on the edge all the time, which I think must have been the lack of waiting and wondering time - I had 3 WLEs within 7 weeks, so my feet hardly touched the ground.

 

The things that seem to be helping me this time are deep breathing, telling myself to put my shoulders down (they seem to be right up there by my ears a lot just now) and using a Rescue Remedy spray. I find counting the days down in my mind helps as well, it's a good feeling to find the numbers slowly going down - 9 days today to go to my op! Other than that, just trying to be kind to myself; I know lots of people recommend warm baths at bedtime and trashy novels and rubbish programmes on TV. Nothing works all the time though. You're definitely not all alone.

 

I'm also E+ and P+ with a lobular cancer and as you can see it's 04.50, another of those nights when the heebie jeebies have been taking over. You've got this far and you'll manage the rest. I'm sending you lots of hugs and hoping your night isn't too bad and seemingly unending and that tomorrow you'll find some extra strength to keep yourself going on.

EAM28
Member

Re: Diagnosed, already had op and feel so alone....

Hi ncscooby,I know its really,really hard but try not to worry.  I too had 2nd op to clear margins & more lymph nodes as 1 was affected & they got it all 2nd time.  I think they put 'markers' in there first time round so they know exactly where to go for next time to clear all.  None of this is easy but please take heart that it has not spread.  You will get through this. Xxx

ncscooby
Member

Re: Diagnosed, already had op and feel so alone....

Hi everyone,

Thanks again for all your replies to my original post. I know it’s been a while but I haven’t been able to bring myself to write anymore until now. I thought I would give an update on my journey.

After op on May 8th, I went back on 23 May for my results and thankfully I was told that the cancer had not spread in to the nodes which was a massive relief. However, surgeon then followed up with telling me that the tumour was a lot bigger than what they thought (originally 25mm) at 33mm, so he said it was quite big and as a result he didn’t get the clear margins that he needed, so I needed another operation. It was so ridiculous but I felt like I had been told all over again, my bcn just kept saying to focus on that it hadn’t spread, which I know was right, but I felt so devastated again about having to go through another op. He scheduled me in for op the following Thursday, which went ok, I certainly didn’t feel as out of it as the last time, and through some begging they let me go home the same day. I have recovered quicker than the last time.



So now it’s the waiting game for those blessed results again. I feel like just walking away now I really do, I don’t want to do any of this anymore I don’t have the energy. I have had an apptment for the oncologist come through for the 18th June but I do not want to go. I am also starting to wonder when I am going to get through a day without crying at least once!? I keep trying to tell myself to pull it together, I have known now for 5 weeks surely it will get better soon??

Blue23 - thanks for info on coil. Mine is positive for both oestrogen and progesterone, so im guessing that they wont want to give it any dose of either however low? I will however ask and see what they say!
How did you get on with your first chemo?

Thanks all xx
Blue23
Member

Re: Diagnosed, already had op and feel so alone....

Hi ncscooby,

I was diagnosed in April with grade 3 invasive, miccromet in 1 of 6 nodes following WLE and sentinel node biopsy.Mine is also hormone responsive and am having chemo which starts next week 😞 then rdiotherapy and tamoxifen .

Just regarding periods and contraception, i have a Mirena coil and have been very happy having minimal periods and both breast surgeon and oncologist recommend it stays in as such a low dose of progesterone and is good to have in whilst on tamoxifen so don't give up thinking you have to suffer with periods if you don't want them !.

Fully understand all your emotions , we've all been there. My sister seems to be in complete denial , I think she just doesn't know what to say to me and I have found it quite hurtful.My mum and friends have been fantastic though with only the occasional inappropriate comment. A good friend of mine is going throught the same at the moment, she is on her 3rd chemo and has been fantastic support ,

i am a few weeks down the line from when you are as as others said and I didint really believe it at the time, the uncertainty is the worst, once you know what is happening you can almost get your head round it and it becomes 'easier' . Might not be saying this after I start chemo next week  though lol !!!

xxx

Downbutnotout
Member

Re: Diagnosed, already had op and feel so alone....

x

Jo1
Member

Re: Diagnosed, already had op and feel so alone....

Tinker, that sounds so very hard for you - you sound as though you're so strong and thinking positive thoughts amongst the blackness. Lots of hugs, Jo

Tinker47
Member

Re: Diagnosed, already had op and feel so alone....

Hi

I know what you are going through I went for a mammogram  after finding a lump a week  after my 47th birthday and knew from the radiographer that it was cancer that week was the worst and most lonelist week ever,  I am too a planner and like to be in control and the only thing I could control was arranging cover for my job for what I expected to be no more than 3 months after sugery but now just waiting to start chemo.  My partner who  lived in Essex said he would come up and move in with me to be there to support me and he turned out to be a right big let down and it didn't last so  I am now on my own with a 12 year old daughter who has completely ignored that I have had two surgeries and pending chemo and expects me to be and do as I was before - and you just can't do that.  I find that nights and weekends when she is at her dads for me are the worst as I can't sleep and think things over too much. My parents only see me now as CANCER and all on the negative side, everthing that goes wrong now is down to cancer - apparently. Then I joined Crazy Hats coffee morning, read through this forums and yes this is life changing, it is a journey but along which you will meet and get to know some fantastic people, I will be a different woman at the end of this but it will be the woman that I want to be for me and I will be a stronger person for it - that is my focus. This is the time to think of you and what you want and what you want to be and do at the end of this.   Thinking of you.

Jo1
Member

Re: Diagnosed, already had op and feel so alone....

Ncscooby, just sending you a note to say I'm thinking of you too. I can appreciate that 'out of cotrol' feeling, as I'm also at the edge of what feels like a black hole.

 

Reading through some of the threads on this forum has given me such a feeling of support. Take care ncscooby, lots of us are with you. Love and hugs, Jo

 

 

Lucy_BCC
Member

Re: Diagnosed, already had op and feel so alone....

Hi ncscooby and welcome to the BCC forums

Along with the support you have found here our helpliners are on hand with further emotional and practical support so please give them a ring to talk all your concerns through, lines open weekdays 9-5 and Saturdays 10-2 on 0808 800 6000

BCC can offer you support in various ways including our 'Younger women's forums' and 'Someone like me' service, you can about these and more via this link:

http://www.breastcancercare.org.uk/younger-women

Take care
Lucy BCC

princessbear
Member

Re: Diagnosed, already had op and feel so alone....

Hi ncscooby, all the feelings you are having sound very familiar. I am four weeks post WLE waiting to start radiotherapy. I remember and still receive what seem to be very flippant comments. On the one hand you want everyone to be positive and treat you normally, but inside you are screaming and trying to deal with this horrible disease that has so quickly turned your world upside down. You will have good days and bad, it is a huge emotional rollercoaster. This forum is fabulous for helping you feel that you are not alone. The helpline is also great if you need to talk to someone. Keep in touch on here and take care. Sending you big hugs xxx

ncscooby
Member

Re: Diagnosed, already had op and feel so alone....

Thanks for your replies ladies, it does feel good knowing that there are people out there (even though I know this already), I really appreciate your support, especially as you are all going through much the same.
I know that my anger is misplaced and that they are just trying to be positive and is prob her way of dealing with it.
Yup this is beatable and I guess my fears aren't that I am going to die, its just all the stuff inbetween - I don't have to tell anyone this I know.
I too feel totally out of control, I hate not knowing, I am a planner and this was absolutely not in the plan. I didn't imagine that I was going to have to start making decisions about whether to have chemo or not, or having to have my eggs frozen etc...its just so over whelming.
You are exactly right its changed everything and seems to be seeping in to every aspect of my life, everytime I try to think of something positive, oh there cancer is again. Even the silliest thing like never being able to take a contraceptive pill/injection again, I hate having periods but now I don't have a choice - even as i'm writing this I realise that is so minor in comparison to living, but its just an example of how it effects everything - I HATE IT.
I'm hoping that things will get better
Thanks again all xxx
Sisterjayne
Member

Re: Diagnosed, already had op and feel so alone....

Hi ncsooby , I'm so sorry to read how your feeling at this time , believe me when I say that you are definitely not alone and it's the hardest thing to come to terms with this , and as close as family and friends are and as much as they love and support you , it is a lonely journey , the people who have shared your journey are here for you. I was diagnosed on the 8th may and I'm back on thurs for my results and plan . I know it's bc I only had to look at the reaction of the radiographer doing my ultrasound to see that , I asked the question and she replied honestly so I knew last week , now on thurs I get to know what it is and what they suggest I do next. That's the scary thing for me it's out of my control and I'm relying on the experts to sort me out. This week as you said since I was diagnosed has been the worst in my life because our lives have changed so suddenly and it's such a shock. But , we know that bc can be beaten and I know your sister is probably trying to reassure you about people that have survived and doing well , maybe it's her way of helping you and the bottom line is people do come out the other side of this . Both my mum and my sister have been on this journey and although its one i would not want anyone I love to travel, my sister has been my rock , every time I've had a wobble she's been there reassuring me that's how she felt and it does get better. So try and take one step at a time , trust your doctors and nurse to advice you on what's best for you ,and please don't feel lonely , I'm sure I speak for all these lovely ladies on this site when I say we are here to support each other and if it helps to tell us about how you're feeling ,keep doing it ,like I said you are not alone , I m here for you and send you my best wishes for a speedy recovery ,love Jayne x
Dt123
Member

Re: Diagnosed, already had op and feel so alone....

Aww honey, you are having an awful time of it. I totally understand what your saying and don't think you sound selfish at all. I think your family are just trying to say positive things to you, they wouldn't want to say negative things I'm sure. Maybe you can ask the nurses if there is a group you can talk to? xxx
ncscooby
Member

Diagnosed, already had op and feel so alone....

Hi all,

First post - not even sure where to start....but basically i am 35 yrs old and was diagnosed on 25 april with invasive ductal stage 2, both hormone receptive (poss also herceptin positive, STILL waiting for this ratio to come back). Its all been happening so fast, i went to mammogram and scan expecting to be sent away with a flea in my ear, only to end up having a core biopsy done and then being told to come back for results just a week later and being told i had breast cancer.

 

Then a week after that the hormone bombshell dropped - my nurse (who couldnt be lovelier) said this is good as they can give me a protection etc with the tamoxifen - but all i can think is how i wont be able to have a baby whilst i am on it (not that i am at that moment in my life right now, but i might be in the near future, who knows). Its as if the propsect of chemo and being infertile isnt enough, now thats on top. They dont have my results from the op yet, but they said because of my age they will want to throw everything they can at it. But to be honest in my head i dont want chemo and making that decision in my mind has kept me going - even though there could be another curve ball and i might not have a choice if it has spread.

 

I had my op last thursday, he took out tumour with clear margins (well as far as he can tell) and now i am just waiting.

 

Thing is even though i have great friends and family i feel so terribly alone - i know i'm not and i dont kbow why i feel this way. I dont have a partner and live by myself so have a lot of time to think about all of this. I am really struggling with family a little bit, my sister is so matter of fact - well so and so had it and she is fine, well her sister had it and she had to do that as well...i feel like screaming i dont care about that - which obviously isnt the case, its flippin terrible that anyone has to go through this, but right now i cant think about that. I know that probably sounds so selfish, and i hate that i am thinking like that.

 

This has been some of the worst 19 days of my life so far. I have tried to draw strenght from here, everyone seems so positive and doing so well, and i just fell like im falling apart as the days go on.

 

THanks for listening

xx