Newly diagnosed & in need of reassurance

Hi there…This is my story so far…early days,
I found a lump 4 weeks ago, have had a masectomy just over a week ago and going back in for axillary clearance on Friday. Then chemo and radiotherapy! I am 32 so they say they want to treat it aggressively! We had just wanted to start trying for a family and now I feel my life has been blown apart!! All I know so far isthat it is grade 2 and not hormone responsive, still waiting to see if it is HER+. At the minute I feel upset and angry, I have never smoked, don’t drink, not over weight and whilst I like chocolate I don’t have the worst diet in the world!! I would really love to hear some positive outcomes to help me believe that I can aNd I will get through this!!

All my love xxx

Hi sunshine paroles

Welcome to the BCC forum where I hope you will find a lot of support.

You could also talk things over with one of our helpliners. The opening times are 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000.

Very best wishes

Janet

BCC Moderator

Hi sunshine x sorry you find yourself here but it’s a wonderful site for help & support , I am 41 dx 11th Dec & was told due to my age it would be treated aggressively too , sounds scary but it just means its belt & braces & we get everything possible to get rid of it & prevent it coming back as much as possible ! Like you I was healthy ( although stressed ) no family history either & it was a bolt out of blue & very surreal , don’t think we will ever know why but in time just stop asking ourselves that !
Im due my 3rd chemo shortly & all I can say to help is its " do able " the first week is a bit grotty but then you pick up everyone has different SE’s but can honestly say the " waiting room " is the worst bit , once you get a full dx & a treatment plan you will feel more in control . I’m on the valentines thread & I think a march one has too , read them or post , they make you feel less alone & pick up tips etc I just read threads that apply to my situation otherwise I get worried or upset
sorry about your plans to start a family thats a toughie x i had my daughter at 35 so hopefully you will only need to delay your plan howevers i wud ask your bcn how treatment may effect your plans .
take care x

Hiya Sunshine,
I can’t really give you any advice because this is all still very new for me too… but I wanted to say hello cause we appear to be in the same boat.
I’m 33 and going in tomorrow for a lumpectomy. I found my lump just after christmas and was diagnosed on valentines day. I have grade 3, weakly hormone responsive, invasive BC. I too have been told that they want to treat me aggressively due to my age.
I don’t have any children of my own (but do have a stepson) and have been struggling with the whole fertility issue. I’ve got an appointment with the fertility clinic on the 14th, which is the same day i’ll hear how my op went.
Like I said I don’t have any words of wisdom for you but I can send you love, hugs and support, and the offer of a friendly ear if you want to chat with someone who knows exactly how you are feeling.
Loads of luck for your op on Friday.
Kam. xxx

Hey Sunshine,
I just wanted to add my little bit. I was diagnised with a Grade 2 Invasive Ductal Ca last year aged 36. I was ER, PR and HER2 positive. We are also trying for a family when i found my lump and had just sold my house when i got the diagnosis and the rug got completely pulled out from under me…
I had not had children so i was given IVF before i started chemo. I have embryos frozen. I had chemo before a mastectomy. Then went on to have Herceptin, Radiotherapy and hormone therapy.
I had my one year follow up in Feb and was given the all clear as far as my breast cancer is concerned.
I cant say it was easy - but despite hair loss and being one boobed i am still here and fighting. I am now back at work full time (i worked during chemo too) and looking forward to getting on with life.
What i will say is it gets a whole lot easier when you know the plan of action and have treatment plan in place. If you have any questions i am more than happy to share.
Also if you are interested i belong to a younger womens group on facebook which i find a great source of support. If you would like details i am happy to send them to you. Theres lots of advice on there - plus a few laughs too :slight_smile:
Best of luck with everything,
Rae
x

Hiya sunshine. What a fab user name you have chosen!
Im really sorry to hear about your diagnosis. I was diagnosed three years ago this week, aged 36. I had a lumpectomy, chemo and radiotherapy and am on tamoxifen. I know exactly how hard it is being in the place you are in right now, so I’m copying you my first ever post on BCC. I used this site extensively during my treatment and wouldn’t have got through without it. You’ll see what a mess I was in and how I felt. I’m then going to post you the update post I did a few months ago. You can see the difference for yourself. I just want you to see that girls do get through this. It is horrific being where you are now, but the depths of shock and horror of new diagnosis were by far the worst part of the journey for me and many others. Hang on in there, vickie xxx

My first ever post: hello, 36 and just diagnosed

27/03/10
Hi everyone,

I was diagnosed with invasive ductal breast cancer earlier this month. It feels like I am living through hell and have had the sh** kicked out of me. I have cried a lot. I feel like my friends are the luckiest people on earth as they are still living the carefree life I was living up til 4 weeks ago when I found my lump. Thats the new me, jealous of my own best friends.

I found a lump in my left breast when I was examining myself on a Saturday night, and was given an appointment at the local breast clinic the following monday. I cannot fault my GP and the breast clinic staff so far.Supportive and lots of information. That day I had a mammogram, an ultra sound, a fine needle biopsy and then got the results the same day and was told “it is cancer”. My husband was with me . I had to lie down on the bed as i nearly fainted. I had to go home and tell my mum and sister. They were minding my two little boys who are just 2 and 4. Seeing my mum and sister’s faces crumple when they saw my face was awful. thank God for my husband being with me. Suddenly I totally depended on him, having whinged about him for years like we all do. I think I quite like him again now!

That night I was beyond shock. The absolute worst bit was when I went to bed. Previously I had always looked forward to bedtime, especially as sleep is at a premium with young children. But the second the light went off I started panicking and breathing too fast and had to have all the windows open. My lips and fingers went tingly and it took my husband ages to calm me down. there wasn’t much sleep to be had that night.

The next morning I was back at hospital and sobbed silently through the ultra sound guided core needle biopsy, although I was still aware enough not to move whilst sobbing in case she slipped and hurt me! The sound of the needle thing clicking was awful and I certainly couldnt watch ( though my husband did), and I hummed throughout to keep calm, so must have seemed mad. But it really didn’t hurt as the local was great.My breast was black and blue after though. The thing that really got me was that the last ultra sounds I had had were to see my little babies when I was pregnant and now it was because apparently I have breast cancer. And after a year of my persuading and convincing, my husband and I had finally been trying for a new baby and I had been expecting to have ultra sounds at this time for pregnancy again, not for this bag of rubbish. Thank god that I didn’t get pregnant though, it is hard enough wiht just my body to take into account.

I saw my breast cancer nurse again after the core needle biopsy and totally collapsed. I was convinced that this was cancer from somewhere else which had spread to my breast, so my body was already riddled. She reassured me this was extremely unlikely but who believes statistics now as we all know that someone has to fall foul of them, and as has already been proved, I am already on the sh** unlucky list…

Waiting for my biopsy results was horrific. The wait in the clinic waiting room was genuine torture. The tumour ( which is a word I really really really cannot believe applies to me) seems 15 by 11mm, and the results indicate its a grade 2, but only “vaguely” oestrogen positive ( 4 out of 8 if that means anything?).There “is no reason to believe that it has spread to the lymph nodes” but who knows? And when did lymph nodes become so important in my life? I don#t think I had ever even said the term a month ago.

So now I am waiting. I have my lumpectomy on Monday. When i first heard that I had the dreaded cancer, I told them to take the top half of my body off. At the next appointment I downscaled to a double mastectomy, then a mastectomy and finally have agreed that a lumpectomy is the way to go. I have to have a wire put in via ultrasound to mark the place before the op, and am having sentinel node biposy so need to go to the nuclear medicine department at a different hospital first. Nuclear medicine! Wow, am going to be glowing from that, with a blue breast, blue wee, blue poo and blue contact lenses from the dye! I will be like an avatar, if only they could stretch me to make me taller and skinnier too! although I did lose half a stone in a week through total inability to eat at first.

So onward and upward. I am terrified about getting worse news after the op, as i am slightly more able to cope with the status quo now than I was before. I feel that this is totally unfair, I am a good girl , never smoked, never ever taken drugs, hardly drink , not overweight, breast fed both babies for 7 or 8 months until they got top and bottom teeth they could bite with.

Have just realised how much I have written, hope I haven’t sent anyone to sleep and well done for reading this long if you have! Think I feel a bit better for telling people what has happened to me, although feel as though am preaching to to the converted, coals to newcastle etc!

xxx

And the update one now :

Hello, 38 and *touches wood* doing ok today, 2 and a half years after diagnosis

I am writing this to update my mind, to explain to myself where I am up to now, where I was and what I hope the future holds.

My breast cancer diagnosis was over two and a half years ago now and, other than tamoxifen, my planned treatment ended in October 2010. It has taken a long time to feel like myself again, both physically and emotionally. I didn’t realise just how much the treatment and shock had taken out of me, and it’s taken me a good couple of years to convalesce. It’s only when I’ve felt better that I realised how poorly and weak and vulnerable I felt.

I’m cautious about writing this update as it seems like I am tempting fate, asking for my cancer to come back by staring it in the face. It’s like I am challenging it in a funny way, and I really really really really don’t want it to win this face-off.
So, on that basis, let me just say that I am only commenting on how I feel now. I am marking a point in time. I’m not saying what might, or might not, happen in the future. I am simply updating my story to the present day, and dragging it on from the March 2010 horror.

So, in the last 2 and a half years, I have faced many things. Shock and horror at facing my mortality, eye to eye. Shock , because who would expect to do that at age 36. I have been through pretty nasty treatments, and been physically at a very very low point. You really don’t know how good it is to feel well until you simply don’t feel well, and can’t guarantee that you’ll ever feel well again. That was hard, not knowing if I was always going to feel this ill for the rest of my life. If I wouldn’t be able to look after my little boys anymore, if I was always going to be on the sidelines watching other people care for them and screaming inside that it wasn’t fair. I wanted to do it. They are my babies. How could this possibly happen?

Jealousy was another unwelcome visitor. Feeling core envy because your friends and family are perfectly well is a horrible feeling, because you love them so much. But part of you wants this to be happening to someone else, and for other people to have even a smidgeon of an idea of what you are going through. It’s so hard, because you can’t run away from it. You can’t make a decision to do a runner, as it will come with you, because it’s inside you. But you know that everyone else around you could walk away from it if it got too much. You hope they wouldn’t, you think you know they wouldn’t, but at your lowest physical ebb, as your husband is putting toothpaste on your toothbrush and cleaning your teeth for you because you are too exhausted to manage, you think “is this really what he bought into when he married me?”. And you grieve for the young, carefree girl you were, the one who could go to the cinema without worrying about other people’s germs infecting you in your chemo infection zone. The one who looked pretty and young in the mirror, not old, knackered, tired, bloated, sad, bald, and frail.

Anyway, I digress. Because the point of this is to update my mind, to make it realise where I am up to today, as it keeps flitting back to march 2010, like breast cancer ground hog day.

So what and who am I today? Well, I am changed from the girl I was in on my 36th birthday in February 2010. That girl was happy, even though she didn’t know she was happy. She also didn’t know she had a lump of breast cancer nestling in her chest, and the smiley happy carefree birthday pictures of her, her husband and her two little boys in the pool at centre parcs attest to this. But, all in good time, because two weeks later she did a breast exam on a Saturday night in bed, whilst her husband was downstairs watching Match of the Day, and she found a lump. And it was breast cancer. And that was when a line was drawn through her life, when there became a before and after.

So back again to the question, who am I now? I am a woman. The girl went, there’s no girlishness left now, I am older, I am wiser, I am less trustful and less naive. But I am also strong. This experience left me absolutely floored, empty, turned inside out. But I have carefully put the pieces back together, with help from family, friends but also the medical profession. I have had therapy to help me make sense of what happened to me. This has made me accept that I have not let my children down by allowing myself to get breast cancer. My main role in life was being a mum and wife and daughter, but mainly a mum. Mums protect their children, yet I was the bomb that went off in their midst. I am the person most likely to bring turmoil and grief into their happy little boy lives. And that sucks. It really and truly and totally sucks. But, and this is the important bit that I now accept, IT IS NOT MY FAULT!

The reality is that this thing happened TO me, I did not cause it. And in the circumstances with which I was faced, which I repeat were not of my own making, I did my very best, and it was pretty darn good if I say so myself. Yes, I felt rubbish, I looked rubbish and I talked rubbish, but my children came out the other end as lovely happy little boys, just as they were at centre parcs before the sh-t hit the fan. I looked after them myself or arranged for close family and friends to do so. They still got their favourite teas, still went to school and play school on time and looking as smart and presentable as they ever did (which wasn’t very…), their mummy still played with them and either picked them up from school herself on good days or was waiting at home to chat with them on bad days. We had days out to the seaside, to the park, for walks in the country, to Thomasland, stayed in hotels and ate McDonalds. I went to sports day,albeit in a wig. I went to the school summer BBQ, and we all had fun. I rearranged their birthday parties for "well"days and still made them homemade birthday cakes. I didn’t do their reading books as it was too hard, as my eldest son didn’t want to do them and I had no energy or inclination to fall out with him over it. It didn’t matter in the long run, he’s doing great at school now and reads really well.

I am terrified at the thought that this cancer might come back. In fact, I still find it impossible to believe that I , yes I, was diagnosed with cancer. That thought is just too big for my mind to process. And I don’t understand how I got it and why I got it, but I am gradually accepting that there are things we don’t have answers for, and it is wasted time to go over and over and over it in my mind.

I don’t want to waste time now. I half want to ignore that cancer ever happened, and not make my future life all about cancer if I can help it. But the other half of me really needs to accept that cancer did come to my door, and that I tried my very best to forcibly evict it. The signs are positive that this interloper has been ejected for good, but it’s a sneaky little bar-steward and you have to keep your eyes out in case it’s snuck past you, in a sneaky-ass way.

But the upshot of how I am now, at this precise point in time, *touching wood* and not tempting fate, is…happy, sometimes anxious, but happy, sometimes annoyed, but happy, sometimes sad, but happy, often proud of myself and my family, and happy. I really truly hope I can stay happy and keep these other emotions in check. I am functioning well as a mum and wife again, I am building myself up to return to work next year, I am planning my imminent house move, I am setting up a younger women’s support group, I am raising awareness and support for younger women with breast cancer, I am raising funds for my sons school and for the local breast care unit. And I am happy.

I hope I have half the strength and courage you have. I am just setting out on this journey and am scared stiff. I have a meeting with my docs tomorrow to set out a treatment plan. So far I know I have grade 3 no particular type breast cancer with nodes involved. Further staging tests were done last thursday by the way of a bone scan chest xray and liver us. I am 37 with a young daughter. Posts like yours are a godsend to someone like me…thank you.

K

And I thank you too. I’m also starting out and your first post so mirrors my feeling with the panic and fear. I have so felt that I’m not coping ( although to everyone I have a PMA and smile and look great- but wearing that mask in public is bloody exhausting!) in private/with my OH I am in constant floods of tears, have panic attacks in my sleep and when awake which arise from nowhere. I knew I needed help and today saw my GP after a triage call from the surgery also had me in tears. In fact I didn’t even make it into the GPs room before I cracked. But he was amazing, he sat and listened( tissues at the ready) and I actually felt that he “got me”. He understood my fears of having the Mx were not about body image and not looking so pretty (as my BCN nurse put it) but the fact that originally I thought that the cancer would be gone and out of me with the WLE, and that got me through. Then I find its still in me and after a further re-excision it’s still there so the Mx fear is that it will STILL be there after that and I’ve had to confront my own mortality. He was very reassuring-I’m absolutely normal not losing the plot and it is a helluva lot to get your head round in such a short time. He has given me a course of Citalopram ( med/high dose straight away) and is keeping in regular contact with me via phone calls and appointments. don’t know what on earth is in these tabs but although I don’t feel happy ( they don’t work that quick!) I do feel strangely calmer and managed to have an hours phone conversation with my daughter without a single tear.
it is scary but I hope I can post the same sort of courageous post in a couple of years as tors has. Actually no scrap that. I WILL post in a couple of years time and so will you sunshine and K!!!
ps I have now just shed a tear as my OH has just walked in having made me a Banoffee pie from scratch. God i love that man :slight_smile: xxx
love LS

Hi everyone
Having a bit of a panic day today.Trying to keep a brave face for those around me but it is hard. I like to read on this site because it can bring me out of my panic sessions. Today my panic is going to the hospital for my pre ops ready for my mx on the 21st march. Yesterday was a good day, positive, going to beat this, losts of women do this. Then I woke this morning and analisyed what i have (IDC her2+). This time it was the HER2+ that has got to me.Does this mean I have less chance of surviving than others because my cells grow faster or is it just another take on BC.I have read lots of positve stories on this site and I would love to hear more. Is there anyone out there.
Elliedog

Hi Elliedog,
Being Her2+ is no longer the scarey result that it used to be as we now have herceptin to fight it. Please don’t google Her2+ on the net as most of the results out there are ancient and haven’t been properly updated since herceptin was licensed for use in primary breast cancers. I too am Her2+ had 8 lots of chemo , rads, tamoxifen and herceptin plus the kitchen sink lol… I finished chemo last August and just had my 13th Herceptin all totally doable and you will do it hunni xxxxx
Love
KQ

Just wanted to say a big thank you - I wouldn’t wish this on anyone but it helps to know i am not alone in being absolutely terrified. Reading Tors first post could have been scribed by my own hand so thank you so much for sharing.
All I know so far is that it is not hormone driven but still waiting on the HER2 Status - don’t know whether to hope for or against this coming back positive so trying not to think about it!
I am comfortable with the MX decision, and I have also had axillary cleareance so currently in some discomfort from that but glad it’s all done now! I start fertility treatment in a week so fingers crossed that goes smoothly - at the minute the hope that after all this is out of the way i may be able to get on with my life and give my husband the family he so deserves is keeping me hanging on to at least some positivity. I am normally such a positive, determined person but I have equally, always been better at fighting for others more so than myself. Now I know it needs to be all about me but that in itself terrifies me as I am not sure i am strong enough!
I feel terrified of chemo and perhaps most of all of looking in the mirror and not recognising the person staring back at me. I read your stories with such admiration of the strength that you have shown on this journey and I only hope that when the time comes i can grit my teeth and stick two fingers up at this thing!
Today I feel like such a failure, someone who is causing pain and upset to those who love me and as if I can’t be the wife I want to be to my husband. He has been incredibly supportive and I am so thankful for that but i wish I could take it away from him. I have never been a jealous person but now I feel reluctant to spend too much time with friends who are getting on with their lives, having children etc. That makes me feel such a terrible person but it has helped to know that these feelings are normal. I have been really positive for the last couple of weeks but seem to be struggling today - all part of the rollercoaster I guess! I smile because if you had asked me 6 weeks ago if I thought about being here in 5 years time I would have simply said that none of us know. Now i feel that i am looking for assurances that i know no-one can give me and before all of this, i would never have needed! i have never been near a hospital in my life until I had my MX, now hospitals are taking over my life. Perhaps the worst, bit is i don’t actually feel as though if anything is wrong with me! (apart from a dogey arm post axillary clearance that is!!)
I am so sorry to go on, guess I just needed to put this down and out there for anyone who may have the time to read it. I have been scared to read too much on here but equally, i have seen so many stories of success and hope for which I know when i look back on my own journey, i will look back with thanks to those that took the time to come back and share their hope and future happinesss, have given those starting on their journey something to believe and trust in.
Sending all my love to all you beautiful, courageous ladies out there,
Sunshine xx

Hi S P,
Not sure if I should reply, as I’m now over 50 [moderator will decide - Thanks!] but I was only 40 when first Dx’d, and pre-menopausal…and still about 30 in my head !
Like anyone I guess I was knocked over when first told - but coped ok with Mx, and immediate reconstruction. It felt so unfair though…I had no risk factors, apart from a few glasses of wine to de-stress, and not having a child before the age of 20 [and most of us don’t!] and quite fit, I thought.
I was single at the time and in fact my sex-life actually improved after that - it made me go and look for the relationship I wanted, and I must have just been VERY lucky with some of the amazing men I met…I’m now very happily married as of nearly 4 yrs…
Just read your last post, and so glad you’re getting the fertility treatment. I wish you best, best luck with that.
I wasnt so lucky, as the man I was seeing when I needed chemo, although really sympathetic, didnt want more kids, so it just wasnt an option. I’ve become really aware using this site that we’ve all got things in common, but everyone’s story is unique. I can honestly say that the worst thing for me was having to face the fact that I wouldn’t have any children…even though it was already not that likely, it was like having a huge steel door slammed hard in my face.
I’ll never be absolutely over it, but hey, I know I’m bl**dy lucky. I’m sure lots of women who’ve got through treatment feel a kind of split personality, when you might be so grateful that you’re still here, but really furious when, say, the surgeon doesnt seem to understand why some aspect of your reconstruction is really important to you - but most of those things get dealt with [always push for more information/second opinions if you’re not convinced by anything being offered !] and settle down, or fade into the background eventually .
Its 13 yrs now since my Dx, could tell a much longer [and more colourful!] story, but I hope its not too corny to say you gotta be so glad about what you can hang onto, and distract yourself with everything thats good, to get over the things you might have to lose.
Only other thing I’d say - be careful if reading up ‘help books’ etc… they can be great, but I was convinced by the Jane Plant books [cos she was a scientist!] to stop taking Tamoxifen - and now I’ll never know if I would have avoided my second Mx if I’d kept taking it…
Good luck, eat healthy, and enjoy whats lovely in your life. You’ll be amazed at what you can get through. Hope bits of this help and I haven’t babbled too much -

Thankyou Mrs Smith!! I don’t think I have yet read a post on this forum that I think is corny, I am just so greatful to anyone who has taken the time to share their stories of success!! Each one is an inspiration and a reminder that breast cancer isn’t a death sentence and something that can be well and truly beaten!! I am still in the early days of not knowing what stage it is, not seen an oncologist yet and worrying that every ache and pain is due to it having spread!! I now have a little soreness at the base of my spine and am freaking out a little - of course it wouldn’t be down to not having the best posture of having slept funny, no in my head it must be cancer!! Sometimes I despair of myself!! :-). Having my ups and downs and I am just so grateful to hear all these stories where it has been beaten, and in some cases people have beat it twice!! I wouldn’t wish it on anyone but thank god people do share their experiences for us newbies who, if like me, just need every bit of reassurance they can get that they can and will get through this and go on to have many more happy years!! I am sorry that the fertility option was not to be for you but whilst I find it hard at the moment and whilst that was not to be for you, I suspect I may be right in thinking that you’re experiences have made you the person you are today and a lot stronger and empathetic!! I only say that because like so many lovely ladies you took the time to post the above to give myself and others like me some hope and encouragement!! I am so pleased you have found the right person now and I guess it is true to say that everything happens for a reason and whilst a path I’m sure you wouldn’t have chosen, it sounds like you have gotten to your happy place with your lovely hubby in the end!! Keep in touch, I would love to hear the longer version of your story if you want to share either here or PM me! Thank you so much xx