Diagnosed yesterday - terrified and confused

[JETS]

Hi penfold - yes think rollercoaster the new normal xxx I had hair cut today so very low right nowx but no doubt tomorrow I will feel much betterxx paranoia also part of it all - I day three no painkillers which is a good thing but been getting headachey - every ailment seems to take on huge significance tgat IT never would have b4 xx

[Penfold0_0]

Thanks JETS and Herewego, having a wobbly day after a positive day yesterday. Guess this is just the roller coaster and I need to hang on in there. It will feel good to start treatment even though it terrifies me too. Today's worry is that I still have a chest infection and that will delay treatment but doc said she couldn't hear a wheeze. I think I'm becoming a paranoid wreck.

[JETS]

Hi penfold - I'll b starting in March x no advice just lots of warm hugs xxxx

[Herewego]

sorry that should have read 'had my first chemo on Tuesday'

[Herewego]

hi Penhold, I got 4yr and 1yr old girls and had my first home this Tuesday. It has not been as bad as I feared, i just been tired but have slept in the afternoons before they got back from nursery.
To be honest my op (lumpectomy and nodes removal) has had more impact than chemo. After the op I couldn't drive for almost 3 weeks and only today (4 weeks after op) I managed to carry the younger one down the stairs.
It's all doable, you just need to find what works for you and accept any help you need x

[Penfold0_0]

So met onc yesterday and chemo starts week after next. I'm so scared of side effects and how I'm going to cope with three small children. Anyone managed with kids on chemo?

[Matty2]

Couldn't agree more about recovering is now your job.

As with anything you get high days and low days. getting a treatment plan and working though it - talking to BCN etc if you need, all helps

Had a bit of a low week and i am post-op as i have healing issues, didn't know whether it was a GP or a hospital thing. One phone call to my BCN and it was sorted, saw consultant, back tomorrow to see if there is an improvement which I think there is

So talk to people do not struggle on your own, there are lots of people out there to help as well as family

AND there is us lot on here, all at different stages and now with a wealth of knowledge

Keep smililng

Beryl x

[eileen728]

Hi Lindyloulou, penfold and everyone,

Agree it's all a bit of a roller coaster. One day I'm fine and then I can be a snivelling wreck in the middle of the night when I start imagining the worst! But as most people here seem to say it really does get more manageable once you start getting treatment and you feel like you are moving on. I am trying to see the next few months as a sort of challenge - like it's now my job to get better! There are bound to be bad times and I am sure I won't always be so calm - BUT there is a lot of support here from lots of lovely people and we are all in this club we never wanted to join  - but given that we are in  it I am so glad it exists.

Love to all xxx

[Penfold0_0]

Hi Lindyloulou, sorry to hear you are in this club too. It sounds like we are experiencing the same emotions and reaction to it, which I suppose is comforting in an odd sort of way. I'm trying to keep busy and be around people as much as possible as this seems to help. At times I'm crippled with worry and I'm also hating the worry I'm causing my poor hubby. Keep telling myself that I'm strong and otherwise healthy so that's in my favour. Chin up and loads of hugs xxx

[keepmumsane]

Hi lovelies, it does seem to get better as the treatments and appointments start happening. 

I was diagnosed the end of October,  surgery before christmas,  chemo started last week. 

Its s very wierd, surreal experience,  and I still just sit some days and wonder what the heck happened. 

You can do it, we're here with you.  Youre not alone.

Xxxx 

Much love

Sandie

P.s. Chemo was not so bad, just another thing for me. they have drugs for everything, sleeping tablets are not a cop out if you're struggling.  You heal better well rested.

[JETS]

Hi lindyloulou xxxx you are already doing amazing as you have put a post on here xxx you are going to be fine ! Don't worry - we laugh cry shout here all of it xxx I'm due to start chemo in March - had my surgery 12 January - I've been through it all emotionally but you learn to take it day by day x stay busy in the early days if u are not too tired as it helps keep ur mind off stuff x

[JETS]

Hi penfold - u had to stop breastfeeding when my twins were 5 weeks old because I developed a huge infection following a severe excezma break out - they are 15 now - get As at school and are quite lovely x I felt racked with guilt at the time - but don't look back - your children do sooo much better when u are looking after yourself xxxx

[Sam_BCC]

Hi LindyLouLou

Firstly, welcome to the forums, I am sure you will find it a great source of information and support.

I'm sorry to read of your diagnosis, the first few days and weeks are always difficult when coming to terms with things and getting to grips with your treatment plans, etc.

As well as the support you receive on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...

Also, do give the helpline a ring if you need any further support or information. They're on 0808 800 6000. Open 9-5 Monday to Friday and 10-2 Saturday.

Best wishes Sam, BCC Facilitator

[LindyLouLou]

i am sorry to say last week I too have joined this horrid club.  Diagnosed with IDC ( I think, I;m still confused).  Suffer health anxiety anyway and now feel like I am dying! Can't eat, sleep or function.  At the moment my order of treatment is chemo, mastectomy, radiotherapy.  What a long road all this is.  Sorry for the depressing post I just feel so overwhelmed by it all, and I was such a happy person with a great family.

LindyLouLou

[Carmen42]

Hi Penfold,
I can only reiterate what others have said. How you are feeling is completely normal. I was diagnosed late November (IDC and DCIS in the same breast) and the worry and fatigue/sleeplessness is (I think) what we all go through. I am mentally psyching myself up for my 2nd chemo next week and yes, it's scary but apart from extreme tiredness (and a little constipation) I haven't had any other side effects. My hair is just starting to come out which is freaking the kids out!

What I'm trying to say, somewhat clumsily, is that chemo might not be as bad as you fear. And once you get through the tiredness, you will get back to feeling human again.

No advice with regard to your mum, except to say she's probably as scared as you are and if you can talk to her it might help.

I also can relate to your fear that your lump is growing, I seemed to spend all my sleepless nights before surgery poking at mine and thinking the same... it will be a relief when you start treatment and after surgery you can be reassured that it's gone.

Speak to your breast care nurse if you can, I spent a lot of time with mine and she really helped calm my mind and reassure me.

Look after yourself, and shout if you need us!

Love Carmen xx

[Penfold0_0]

Thanks Hazel and Chez,

I'm seeing oncologist tomorrow to discuss the plan for chemo. I'm scared of chemo but also want it to start as lump feels enormous and I'm sure it's growing. I have a dull ache in my chest tonight and I don't know if this is caused by my severe anxiety or if it's something else. I'm terrified it is something else but another part of my brain telling me not to be silly. I'm actually sleeping ok (when my babies let me) just not really functioning during the day as I'm crippled with worry. I hate being alone (without adult company) but I'm **bleep** company at the same time. I'm feeling really let down by my mum who has barely said anything to me since I told her about my diagnosis. I'm hoping I will feel better when treatment starts even though I'm so scared of side effects. It's good to hear that it is bearable from people on here. Thanks again for reading me xxx

[Hazelr]

Hi this is my first post and your story sounds like I felt when I was diagnosed on 3rd December . I have had 3FEC now and start Docetaxel next week for 3 treatments, followed by surgery and radiotherapy. I am feeling fine this week but the week of chemo is tough, I now just right off the week and one day I wake up and feel like a human being again. You may not have the same reaction to the chemo as we are all different but I think it's nice to be warned in case you are feeling rotten.
I Get very low chemo week but I think that's because I feel physically so poorly. it may be idea to record your meetings if you can't take someone with you, you can then listen it back to it with your husband. crying every day is about par for the course and I don't think its a bad thing, it usually makes me feel like I can go to sleep. Talking of sleep I am having real problems sleeping longer that 2 hours at a time all night and have some sleeping tablets now but they aren't working brilliantly. Have meeting with oncologist tonight so will see if I can have something a bit stronger although I am loathe to take anything. The daytime fatigue gets worse if not sleeping at night. Please keep looking on here it makes you feel less alone through this nightmare, you are amongst friends even If we are anonymous. Xx

[Chez666]

Penfold, hi, it's hard to take the positive out of what is a dreadful situation but the fact that the left is a cyst is a win, however small. Your little ones will be fine, I was only able to Breast feed for 6 weeks and my strapping son does not appear to have suffered by my then failing Breast, got mastitis!!. You can dig deep and we are all here to help you, hope today goes well for you x x x

[Penfold0_0]

It wasn't as bad as I feared. Lump in left breast just a cyst so just the right to worry about. Going for chemo first and will start in a couple of weeks. I swear I can feel lump getting bigger by the day 😞 I know I just have to get used to this but every fibre in my body is telling me to run away screaming 😞 my poor babies are having to give up breastmilk and that's not going well and so I feel like I'm messing up their lives too. Sorry to moan x

[Matty2]

I don't want to sound to callous but I am afraid it is something we all just have to put up with.

Think about going on one step at a time and not the whole staircase in one go.

Sooo next appointment is the next step, a little more information will be gathered as well, that's another step.

The ultimate is, of course, to be free of the Beast that's the end of the steps but don't look too far ahead

and don't google - stick to this and Macmillan sites - I was terrified when I just googled

Good luck and be positive - you will get through it

beryl

[Penfold0_0]

I'm waiting to go in for my next appointment. I feel so sick with nerves. Please tell me this gets easier to cope with. Want to run and scream 😞

[Rodent]

HI,

I was diagnosed when my daughter was 11 months when I was 33. Like you I had been breastfeeding and assumed it was related so got a bit of a shock when it wasn't. I had 8 rounds of chemo, (4 xxEC followed by 4 x T) a double mastectomy (as I am 3rd generation to have it, 2nd to be pre-40) then 15 sessions of radiotherapy and am now on tamoxifen.

I will message you something that I think will help!!!!

Its SO much easier when you have your treatment plan in place and you can feel like you can take control of it. The waiting is a lot harder.

All the best

[Penfold0_0]

Thanks everyone, somehow I've managed to get through the weekend without a complete breakdown. I do feel panicky all the time and I'm finding it difficult to eat or sleep. I'm also getting paranoid about every ache or gripe in my body. But your words of wisdom and encouragement do help so thank you again x

[Kittkatt]

Hi Penfold,
Can I share my surgeons words on telling me that I had invasive ductal carcinoma ... he explained that it was by far the most common type of breast cancer and said "we like common", "we've had LOTS of practice dealing with common!"
I wrote my questions down too - printed out in longhand and worded exactly the way I wanted to ask them . I'm not good with sympathy when I cry so I handed him my list and asked him to talk me through them and ignore the fact I was crying if it happened . Best and most informative appointment ever ... and the first of many non-crying ones as it turned out !
Do what is right for you - everyone hated that I chose to attend all my appointments alone despite having supportive husband, friends and family . It worked for me but that's because it was choice and not forced on me by circumstances .
Obviously this site is great - nothing will happen to you that someone else has not found a way to deal with ! Just keep asking .
Kitt
X

[13gerbera]

Hi Penfold,

So sorry you've had to join our horrible club but the members are wonderfully wise and supportive.

I'll just echo what everyone else has said, the initial diagnosis stages are the worst as it feels like you've entered into some sort of weird fantasy land where people speak a foreign language so it's hard to take it all in. 

I think of surgery and any chemo needed ahead of surgery to shrink the cancer as the 'cure' and the stuff that comes afterwards (possibly chemo, radiotherapy, hormones etc) as being preventative and stopping us from developing cancer again.  As you are young I guess they will want you to have as much preventative treatment as is possible but won't really know what will be best for you until the cancer has been removed and they have tested it to see which treatments you'll respond to best.  

Along the way we'll all try to help you as much as possible and this forum is the very best source of advice and support I've found. These wonderful ladies can answer any question, no matter how big or small, and it's so reassuring to talk to people who've actually experienced it for themselves and can tell us what it is really like, usually with a great big dose of dark humour too!

Good luck with your journey

xx

Sharon

[MAC66]

Hi

I was diagnosed 10 days ago with papillary invasive cancer. I am having a lumpectomy and nodes removed in another 10 days but won't know what the treatment will be until a week or two after that. I'm finding the waiting and uncertainty the worst thing.

But I agree with the others here. Take someone with you, write down your questions as you think of them, and don't worry about any of the questions being stupid! Also don't worry about asking the same question more than once - this alreasy feels to me like learning a foreign language, so I'm sure it will take a while!

Good luck!

x

[Penfold0_0]

Thanks all for your replies. I went to see my GP today and I am feeling a lot better about things tonight. I will try to always take someone to appointments but I have three small children and we don't have any family nearby so this makes things difficult to arrange. Have sorted childcare for one of next week's appointments thanks to some fab friends. I'm starting to make a list of questions too. Still scared and confused but I'm not crying all the time now do that has to be a good thing. Thanks again for making me feel so welcome and for taking the time to offer your advice xxxx

[gazzlyn]

Hi Penfold,

Welcome to the group, and as all the other ladies have said before you are not alone and everyone is so supportive on here.  I too have (now removed) invasive ductal.  I have had my surgery and was hoping to have just radiotherapy and hormone tablets.  Unfortunately hormone tabs wont work for me so I am going to have chemo, waiting for the date.  This whole awful process is about waiting....waiting....waiting and that is what you will find hard.  Like others have said, any appointments try and get someone to go with you, along with a book and pen.  I was so lucky to have my amazing daughter with me and honestly she is my lifeline.  I pick up on all the negatives and nothing more, she reminds me of the positives which I just dont take in.  Having my book where questions and the answers have been written down helps when I have those down moments (unfortunately too many at the minute!). Its an emotional journey but your not alone, use this amazing site and lovely ladies to offer you support

Take care Lynda xx

[ThePianist]

Hello Penfold

You are so NOT alone. I had ductal invasive too in June, they caught it early, no node involvement, lumpectomy, 5 or so weeks to heal and 4 weeks radiotherapy. That's it! Ok, at the time I wasn't so blase, but it is not always the hideous journey we imagine. Take one step at a time and do each phase they ask you to.

I found my lump on 4th June, 11th June it was diagnosed, 18th June they gave me exact details, 30th June it was removed, 10th July they gave me post op results. Started hormone treatment immediately, 20th August started radiotherpy, 18th September finished radiotherapy, 5th November discharged from oncology.

You may have other steps in there that I didn't, but you WILL get to the end and you will be there before you know it. This is serious pamper time, make the most of it, and never think that no-one understands how you feel or that  you are the only one going through it. 

Lots of hugs to you. Keep us all informed - we all care!

Gill

[Matty2]

Hi Penfold

3 bits of advice to you

one is to make sure you always have someone with you the entire time, they may listen more carefully as you will be an emotional wreck.#Secondly write down any question you have between now and your appointment - you will find they will be expecting them and thirdly try not to Google unless it is an approved site like this one -

And (oh fourthly) come on here as often as you need to, lots of advice, humour and tlc from others who undrstand only too well what you are going through on this roller coaster we are all on

B.

[Lucy_BCC]

Hi Penfold and welcome to the BCC forums

In addition to the support here please feel free to call our helpliners to talk through any concerns or queries, lines are open during the week 9-5 and Saturdays 10-2 on 0808 800 6000

You will find lots of information and further support ideas from BCC via the following link which I hope you will find helpful:

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

Take care
Lucy BCC

[Penfold0_0]

Thanks Chez, my nurse rang me this morning and explained a bit more to me said she guessed I hadn't taken much in at the meeting. I've got an invasive ductal carcinoma and she said they thought it had been caught early and not in my lymph nodes as far as they can tell. She said they are going to treat me with surgery, chemo and radio because of my age but will need to decide about order of treatment. I'm still so confused but I do feel a little better now I have a name for it! Does that make sense? Seeing doctors again next week, These boards are so supportive, so many lovely people around. Thanks again for replying xx

[Chez666]

Hi Penfold, really sorry you have got this news, but this forum is a blessing and everyone is very helpful and supportive. They don't normally tell you the stage until they get results from the operation but I would call your bc nurse and let her know that you did not take it all in yesterday which in the circumstances is not surprising. They will understand. What I have learnt is that we all have different plans because of the variety of BC so once you have a clearer idea of the plan for you, which comes in stages, everyone will help with advice a d support, love and hugs x x x

[Penfold0_0]

I was diagnosed with bc yesterday. I'm 35. I had been told to expect the lump to be a milk lump (I'm breastfeeding) and so went alone. I don't think I took much in at meeting and I don't know what stage I am - would they have told me at that meeting? I know that I need lump removed and chemo but not sure on order. I can't stop crying since yesterday. I have my next appt on Tuesday. What should I be asking?