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Newly diagnosed

35 REPLIES 35
Kf791
Member

Re: Newly diagnosed

Hey Sarahjane. If you found the page for the group then great, you can send them a private message telling them your age and diagnosis. They then send you a friend request from a completely random name, once you are friends they add you to the super secret group. Nobody will know anything about it, it's all top secret.

So are you scans soon? You don't have to wait til 11th November for them do you? Doesn't seem fair you have to wait so long for everything, the waiting it the worst thing about all this!! It's perfectly normal to be ok one minute and not the next. That's why I found the FB group so good, having a bad day, go on there and rant and you get instant replies from brilliant ladies who have all been there.

But If not, we are all here for you on here 🙂 xx
Sarahjane71
Member

Re: Newly diagnosed

Hi Guants yes I got your private message thank you have replied so let me know if you got it technology lol ! Not been a good week quite emotional and feel over whelmed with this scan date that scan date and the possible results! I am my own worst enemy I read to much on all sides so I am prepared for results. Not good at waiting or being patient! I am trying to take ladies advise on here and just take one day at a time at the moment. Hope you are doing ok and good luck for first bit of treatment yeah on that road now x have a good day
Sarahjane71
Member

Re: Newly diagnosed

Hi kf791 hope you doing ok looked at face book page but could not quite work out the message side and I do not want anything on my private Facebook as nobody knows that I have bc. Been long week awaiting scan dates hv ct scan and bone scan date now and I just still get nervous scared just want to get on with it and get started I do hv the date of 11th November but no info as if it is surgery or chemo think waiting is worst go through times when ok then next min melt down that this has happened strange journey. Eh do glad scans all clear xx
Gaunts
Member

Re: Newly diagnosed

Hi Sarah Jane

Tried to send you a private msg but it won't let me for some reason!

Hope u are ok

Paula x

Kf791
Member

Re: Newly diagnosed

Definitely check out the FB page and let me know if you're on there and I'll come and find you 🙂 Enjoy X factor, hopefully it will take your mind off things for a short while. I'll let you know how I get on on Wednesday xx
Sarahjane71
Member

Re: Newly diagnosed

Will have a look at the face book site thanks again thinking of you for Wednesday x Well X factor to take my mind if things tonight lol
Kf791
Member

Re: Newly diagnosed

I'm surprised you have to wait for a ct scan, I got mine the day after I was diagnosed. But they were pretty certain it had gone to the lymph nodes through the ultrasound so maybe that's why.

I found being around friends really helped me and if I cried, I cried.

Have you found the Younger Breast Cancer Network Facebook group? If not I would definitely recommended getting on there and talking to the ladies there, it's a brilliant place to chat. Its helped me loads being able to tell them all my worries and ask any questions xxx
Sarahjane71
Member

Re: Newly diagnosed

Only got details Friday and dr said he has book mx for 11 November however if ct scan came back showing it had spread then chemo first! I hv to wait for ct scan appt hoping it will be next week. I think as there is a large lump and another two small ones he wants to be on safe side and regardless do mx as apparently fast growing due to oestrogen almost want to fast forward the next six months lol xx glad you went out with girls and tomorrow I am just not sure if I would not just start crying so have avoid friends on mass this weekend xx still trying to get my head round it ! Well good luck for Wednesday keep in touch you are asking some similar questions to me over wigs etc I am so vein so will def want one a good one less people that know the better for me do not like pitty or attention just want to get on with it xxx thanks for chatting
Kf791
Member

Re: Newly diagnosed

Yes you are still a young'n! 🙂 it's so hard to stop your mind racing and overthinking things . Do you know when your scan is? And are you still to have any treatment?

My chemo is starting this Wednesday...eek! So starting to get very nervous about that. Then surgery is after that. I won't know what surgery I'll have til results of the chemo and also genetics testing comes back.

Yes I've been out with the girls and it was really nice, felt just like a normal evening. Got another one planned for tomorrow too 🙂 xx
Sarahjane71
Member

Re: Newly diagnosed

Hi Kim well I am 43 so not quite as young as you lol but they still class me in the young group that is a positive still young lol x Thanks for advise on scan puts my mind at ease. Just need to keep busy I suppose and not let that mind race!!!! When is your treatment starting x thank you so much for sharing it does help so much to talk to people who are going through this and understand those fears thoughts feeling sickness I need bit go on! Did you manage to go out with the girls ?
Kf791
Member

Re: Newly diagnosed

Hey SarahJane, so sooty you're here and having to go through this. The waiting is the worst part!! But you're right, this forum has been fab for talking to people who are in the same boat.

So when I was diagnosed with grade 3 my nurse said this was perfectly normal for someone my age, I'm 30 and younger people tend to get the more aggressive cancers unfortunately. Do you fall into this category? And they also weren't overly concerned that it's gone to the lymph nodes as it's the first place the cancer spreads too and they basically said they were doing their job. They are there to stop all the nasty cells going everywhere in our body. So as it's a fast growing cancer this is why chemo is fast, stop any spreading and hopefully shrink everything! My lump feels quite big so hopefully it will shrink it!

The CT is not too bad, about 15 minutes in the donut shaped machine whilst something is injected into you. Everyone does leave the room though and you are alone - this is where I started crying! But the worst bit is just knowing what the scan is for and the wait after. I thankfully got the results over the phone the next day but I know some people wait a week! Fingers crossed you don't have to wait long. And try not to worry too much ( I know, easier said than done!)

Let me know if you have any other questions xxxxx
Sarahjane71
Member

Re: Newly diagnosed

Hi Kim I am waiting for ct scan appt and am terrified it has spread again for ultra sound they are pretty sure gone to lymph node . The dr said if has spread chemo first if not then mx then chemo and scared as what does spread mean it that it? Also how long did ct scan last and what did it involve no clue and very worried as you say stage 3 the worst ! And aggressive and I have a large lump and two small ones and they love oestrogen ? And help a dive you can give to try to easy my fears would be great xx these forums over this weekend since being diagnosed is what has kept me going so supportive and good to talk to those who understand x
Lucy_BCC
Member

Re: Newly diagnosed

Hi Lyndad and welcome to the BCC forums

Along with the support here please feel free to call our helpliners for further practical and emotional support, lines are open 9-5 during the week and 10-2 Saturdays on 0808 800 6000

You may find the following information from BCC 'Talking with your children about breast cancer' helpful:

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/talking-your-children-about...

Here's also a link to further support ideas and treatment information which I hope will be of help to you:

https://www.breastcancercare.org.uk/treatment

Take care
Lucy BCC

Kf791
Member

Re: Newly diagnosed

Hi Lyndad

So sorry you are also having to deal with this horrible news too.

Mine is grade 3 Invasive Ductal Cancer but I was told because of my age that this is normal. Still doesn't help your mind wandering though, that's its grade 3.....out of 3! So because it's fast growing it's highly likely to spread to the nodes which it has. But have been reassured lots of times that this is fine and they just deal with them too!

Because of this I had to have a CT and bone scan which i found to be the worst part, knowing why they were doing it. Deep down I knew it was unlikely to have spread to other parts of my body, but you can't help but panic!

Now I know it's not everywhere I feel better about things. I've decided to be positive and just think about beating it.

Thankfully my kids are too young to understand any of it so I don't have the horrible task of telling them. So I feel for you. But personally I think it's good to let people know as soon as you can, then they can be there for you and help you get through it. You certainly don't want to be doing it alone.

Last night I told all my friends via Facebook, I was debating whether to do it for a while but I knew having everyone there for me that I would find it easier to cope with. And it definitely feels better getting it out in the open!!

I'm here if you ever need to talk xx
lyndad
Member

Re: Newly diagnosed

Your story is similar to my own.  I was told on Tuesday that I have grade 2 Invasive Ductal Cancer in my right breast after having a biopsy. I also am otherwise fit and healthy, eat well and exercise and breastfed all 4 children.  I am sick with worry at the thought of telling my kids. They are 21, 18, 16 and 12.  The nurse at the hospital said it was important to tell them the truth.  I have decided to tell them tomorrow morning as 18 year old is home from uni for the weekend.  21 year old is not living at home anymore. Don t know when or how I'll tell him.  They are going to remove 3 lymph nodes to check if cancer has spread.   Terrified it has but just want all the tests done asap, cant bear the waiting.  

Rodent
Member

Re: Newly diagnosed

Kf791 I'm so so so pleased for you. That's amazing news. Nodes aren't great but they're not all bad, so that's hopefully going to give you a much better weekend!!

Butterfly, thanks for that, I am still hazy on so much stuff!!

Back to Kf, hope you have great weekend now, chemo is punishing but it's doable, and with every round you are a) closer to the end and b) getting rid of it!!
Butterfly318
Member

Re: Newly diagnosed

K1791

 

Thats fabulous news from the scans.  Each day you seem to be getting a little more information as it becomes available which will be helpful to plan treatment. 

 

Rodent  -  Axillary Node Clearance simply means all nodes removed rather than just some for analysis / further treatment as required.  Generally with larger tumours, even if they shrink with Chemo first they remove all nodes.

 

Good Luck girls with your treatment.  Have a Good Weekend  Gilly x

Kf791
Member

Re: Newly diagnosed

So my BCN just phoned to tell me my CT and bone scan have come back clear! This is what ive been struggling with most after being diagnosed so the relief is quite something! Unfortunately it has gone to the lymph nodes but i was pretty certain of that anyway and you lovely ladies have reassured me this isnt the end of the world. So think i might be able to beathe a bit easier now - slightly anyway!

 

My next appointment is on Wednesday to discuss treatment etc, which will be Chemo first apparently. This is quite scary but also i know this is the first step to getting rid of it!

 

xx

Kf791
Member

Re: Newly diagnosed

Morning! I actually managed to get about 7 hours sleep, which is the most I've had in about a week. So something you said must have worked. I'm feeling a bit better today, it's amazing what lack of sleep can do to you.

I'm off out today with friends for the first time since the diagnosis so hope that goes ok. It'll either do me the world of good or make me crack. Either way, I can't stay indoors all weekend.

Thanks again for all your lovely replies, think this will definitely be my 'home' from now on.

X
Rodent
Member

Re: Newly diagnosed

Morning, echoing the others that you did get some sleep!

My lump was similar to Butterfly, 6.5cm but after 8 rounds of chemo there is pretty much nothing left, its amazing. I am having an axillary node clearance (whatever that is) but was def in some nodes so nodes don't spell total disaster. Try and distract yourself over the weekend and don't think too much!
Butterfly318
Member

Re: Newly diagnosed

Morning K1791

 

I hope you did get some sleep last night.  It is a very worrying time following diagnosis and i think i felt better once i'd started treatment, i guess i felt like i'd got some control.

 

Keep posting and checking in with the Forum, I have found it really helpful.

 

Take Care   Gilly x

Kf791
Member

Re: Newly diagnosed

Thank you so much for replying Gilly.

I think it's put my mind at ease....slightly! I'm really hoping to get some sleep tonight but I'm not counting on it. Xx
Butterfly318
Member

Re: Newly diagnosed

Evening K1791

 

Lymph Nodes.  yes we have lots of them all over our bodies and they help to fight any infection (amongst other jobs....)  I am not in the younger ladies group, i was 50 at diagnosis and 52 now.  I had a 6.5cm tumour in my right breast and had Chemo, surgery and radiotherapy.  Due to the size of the tumour all the lymph nodes were removed and on testing after removal I had 1/23 nodes affected by a micromet.  Different people have differing numbers of nodes but generally in the axila it is i the 20's.....and you are correct in thinking it can be contained in the nodes.  Further testing after removal will be helpful to ascertain this for you.  Following Axillary Node Clearance the rest of the Lymp nodes throughout the body compensate for the removed ones.

 

Hope this is helpful.  you are correct  -  don't go Googling....  Take Care  Gilly x

Shelsy
Member

Re: Newly diagnosed

Laetitia I was the same as you my biggest worry was telling my kids who are similar ages to yours remember they won't be experiencing the same anxiety as you, and I realised that I could only tell them what I had been told which was quite positive as seems the case for you,the anxiety is very normal I felt the same at first every pain was def a sign it had spread (it hadn't!!) also telling others is very hard I did it in stages and on a need to know basis.. And only told most friends the night before surgery via txt and Facebook msgs as I couldn't face it...It's not compulsory to tell everyone so take you're time you will know when you're ready. I wish you well xx
Kf791
Member

Re: Newly diagnosed

Thanks Rodent, that's helped. I think I just assumed if it had gone to the nodes then it might be everywhere (and am having panic attacks about this) But do they catch the cancer before going elsewhere? And there are lots of them? I don't know anything about them and I'm certainly not going onto Google!! X
Rodent
Member

Re: Newly diagnosed

Ps, if you have any qs and want to pm me, feel free, it's such a horrid situation to be in but if I can help at all then that's all good.
Rodent
Member

Re: Newly diagnosed

Quick reply to say well done for getting through today, I had 2 nodes involved so having clearance there along with mx, even if you do have nodes it's not all that bad because that's where it should be contained.

Everything crossed for you, I totally feel for your next week but keep positive and chin up, take time with your little ones and the week will fly past and you will know where you stand.
Kf791
Member

Re: Newly diagnosed

Hi Rodent,

Really sorry you're in the same boat and sorry to hear about your mum, must have made it especially hard for you.

Today was extremely hard, I think just the words 'bone scan' is enough to terrify anyone!

Once I get those (hopefully) good results next week and my treatment plan I can breathe a bit easier. I'm pretty certain my lymph nodes are affected as they were commenting on them during my first ultrasound before I knew I was having a biopsy!! So I think that's what is making me even more paranoid. My nurse has tries to reassure me that it's quite normal that would happen, but doesn't mean it's still not treatable, but my mind likes to run wild!

My little ones are 3 and 6months old so they are going to keep me slightly sane at least.

Laetitia, so sorry to hear your news too, it really is awful to hear isn't it. I have pretty much told all my close friends and family. I have a brilliant network of friends and will need their support thoughout this so thought I should tell them straight away. Think I find it nice I can pick up phone and talk to anyone and meet up with people to get me out of the house!

Roll on results next week and maybe I can actually get some sleep

Xx
June_BCC
Member

Re: Newly diagnosed

Hello Laetitia

 

Welcome to the forums, this must be a very worrying time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.

You may also like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

laetitia
Member

Re: Newly diagnosed

I have just been diagnosed.  Got the results of the biopsy on Tuesday.  In time, I am sure I am going to think myself lucky as it was picked up on screening and has not spread.  In the meantime I am in a state of shock because I never thought it would happen to me - I breast fed, I eat healthily and excercise regularly, and there is no cancer in the family.  Like other people on this forum, I am so terrified that I think every little thing is a cancer.  Anxiety is making me tight chested which makes me think I have lung cancer as well etc etc, and I don't want to give my worries to anyone at home.  I have told my husband, my mum, my best friend, and my employers, as I am having surgery next month.  I don't know what to do about telling other people, particularly my children (20 at Uni and 23 working away from home) as I just want them to do well and don't want them to be worried about me.  It is all so shocking I just don't want to rush into doing the wrong thing .....

Rodent
Member

Re: Newly diagnosed

Hiya,

 

I'm 33, was dx in April just before my daughters first birthday and have just finished 8 cycles of chemo and awaiting dble mx in 4 weeks time. Feel free to ask any Qs, I remember my CT and bone scans like they were yesterday and how terrified I was as I only lost my mum to breast cancer 6 months before, but once you have a plan you can feel more in control.


Hope you are doing OK and the wait for results isn't too hard.

sandie73
Member

Re: Newly diagnosed

Hi Kf791

 

Yeah all rational thinking is gone in the early days of diagnosis. I was convinced it had spread to my knee and was on the phone to my BCN who had to reassure me that it was very unlikely to spread. Every ache and pain takes your mind to some very dark places.

 

 Once you have your treatment plan in place, you will feel more in control to beat this dreadful disease and get your life back. Its been the worse 6 months of my life so far but on the positive side I have met so many inspirational and brave women thats battling BC, made new friendships and about embark on new challenges that I wouldn't have dreamt of doing prior to diagnosis. Having BC makes you realise what is important in life and not to worry over little things anymore.

 

Breast cancer care also do 2 day workshops for younger women where you stay overnight in a hotel (its free). The workshops are on a variety of issues such as early menopause, sex and intimacy, lymphodema, nutrition, benefits of exercise etc. I went to one in Leeds a couple of weeks ago and I would highly recommend it. I met with lots of ladies there (some of them are on the FB page too) and made new friends.

 

Anyway good luck with the CT scan and hope to see you on FB 🙂 xx

Kf791
Member

Re: Newly diagnosed

Thanks for taking the time to reply Sandie. Firstly in sorry you are dealing with this too.

I'm still feeling pretty numb and I'm sure it will take time to sink in. I have my CT scan tomorrow and am absolutely terrified of them telling me it's spread everywhere!! I know this is not very likely but at the moment all rational thinking has gone out the window.

Thanks for letting me know about the Facebook page, I will definitely be heading over!

X
sandie73
Member

Re: Newly diagnosed

Forgot to add that this group is strictly private and that any posts you make on there are seen by members only. So no family and friends will see what you post xxx

sandie73
Member

Re: Newly diagnosed

Hi Kf791

 

Sorry to hear you have joined our horrible club 😞 it is really a worrying time when you are first diagnosed with BC and there is so much waiting around for appointments which makes the situation more intolerable.

 

I am further down the line than you - I was diagnosed in April. My life was turned upside down and in the early days I was absolutely terrified out of my mind. In the six months since diagnosis, I have had unsuccessful surgery, 6 rounds of chemo and now facing more surgery in a couple of weeks.

 

There is a facebook group for younger women under the age of 45 with a BC diagnosis. Its called Younger Breast Cancer Network. If you want to join you need to send a private message with details of your diagnosis and then they will send you a friend's request. Its a great group as its good to talk to women that get it and are in the same situation as you. We all support each other.  I have been part of this group for a few months and have met up with several of the ladies from there at BC social events.

 

Hope to see you on there and remember you are not alone in this truly horrible situation.

 

Big hugs xxx

Kf791
Member

Newly diagnosed

Hi all
Can't actually believe I'm writing this.

Today I got the dreaded news that I have beast cancer. I am 30 years with two small boys so I'm devastated.

I've been reading these forums for a few days after having a biopsy last week and it really helped. So I thought I'd make the first move and actually write a post introducing myself. In sure I'll be on here frequently trying to put my mind at rest or venting!

Thanks to all for posting in these forums, such a big help

Kim x