First time posting - Newly diagnosed

[tsoph]

Hi Everyone,

I never imagined I would need to use a forum like this but here we are, I’m sure we all feel like this… My story is a bit of a sticking point. A year ago in 2023 (Spring time) I asked the GP to check what felt like a lump on my left breast, I was referred and told by a breast consultant that yes my tissue was denser/lumpier on that side but actually that he had no concerns and didn’t warrant scans etc.

A year later (and maybe I shouldn’t have waited so long…but I was told everything was normal) I went back to the GP in February this year as there was a visible lump. I was referred and reviewed by a different consultant and he confirmed big lump - probably about 5cm (although I haven’t had official measurements yet) and there is a singular node swelling too. Fast forward an hour having had all tests and biopsies and I was told he was expecting it to come back as cancer.

I felt, as i’m sure many people do, that my whole life stopped in that moment. I couldn’t comprehend cancer let alone the prospect of spread and the fact I’d been there a year before and told all was normal sent me absolutely reeling.

So I’ve since had a CT scan, and aside from what we know is there, there is currently no spread. I’ve been diagnosed Triple positive with just the singular node and the original lump. I’ve been told it’s a stage 2 tumour? So tomorrow I have a Mammogram with contrast and in theory I need an MRI and an Echo which have both been requested, I’ve also got my first appt with Oncology on Tuesday.

The irony is, that for many years, I used to work in pharmacy and actually manufactured the chemotherapy given to patients. I spent years of my life working with cancer patients and so I have both the blessing and the curse of knowing what is potentially coming. I’d actually applied to go back to university in September this year to do my nursing degree and I felt particularly drawn to go into Cancer services…and now here I am facing my own journey and it terrifies me.

At 34 with two children, and no known familial history I have struggled immensely to come to terms with the ‘why’. I’m not even sure if there is an answer to this question. I am on the whole okay, I am definitely of the camp of knowledge is power, but I have a lot of health anxiety which I fear will make chemotherapy particularly challenging for me as a previous situation where a contraindicated mix of medication prescribed caused me to go into racing SVT and triggered a condition called POTS which flares periodically for me.

I’m also struggling with an anger about that initial appointment. I find myself down a rabbit hole of what if this had been picked up sooner?? I know that my outcome hasn’t changed too dramatically and for this I am really grateful, but I feel let down that my concerns weren’t taken seriously the first time around and now I feel that the lump is enormous. I also wonder if I’m being seen quickly because I know a fluff up was made…or whether this is just general process. I’m certainly not complaining, but my brain has gone to dark places about it all and I know this isn’t going to help me recover and get well.

My consultant was amazing, as was the lovely nurse - she watched me crumple and built me back up. They have explained based on the HER2 pos and ER pos results I will start with chemotherapy and herceptin. I don’t know which Chemo yet, which bothers me, but I will know this from Tuesday I suppose. The regime used to be FEC-T when I worked in hospital but I don’t know if this is the same now?

Then I face surgery…and probably radiotherapy and ongoing Herceptin.

I’m terrified honestly. I’ve resigned myself to certain things I suppose, but I feel so overwhelmed in the moment, my husband is also struggling with his health (he has a CSF leak and is struggling to get it sorted) so our life for the past 2 years has been challenging, I worry that we just won’t cope… but I suppose we don’t have a choice.

I don’t really know the point to the post, but I wanted to connect with others in the hope that we might share in our journeys together…

Thank you for reading if you got this far!
Sophie

[bluesatsuma]

Hi Sophie. It sounds as though you’ve had a terrible shock and have been thrown in at the deep end. My cancer is not the same - geade 2 IDC with lymph node involvement - but I do understand how scary this all is, especially with young children and careers to navigate.

Although you’ve got lots of scans and tests coming before your treatment starts, use this information gathering stage to get yourself ready. You don’t know exactly what is the treatnent plan yet, so try and keep focused on your mental health. I went into a kind of nesting period and deep cleaned the house. I even made playlists on spotify and caught up with friends. Just try to do as much as you can to relax.

When the treatment plan is ready, you will feel more in control, ticking each event off 1 at a time.

Good luck and keep us posted. This group is amazing for support. X

[Tigress]

Hi Sophie @tsoph, what a crap hand to be dealt. I would say, on the whole, the medical staff in and around breast cancer surgery and oncology are pretty wonderful but maybe they were trying not to overtreat a year ago? Whatever the reason, I don’t think there’s one amongst us who wouldn’t be doing the “what if”. However, you also sound like you’ve got a good attitude so from this point on only positive things are going to happen to get this thing gone.

I can’t speak from experience about chemo or herceptin but I thought you might like to join in with the thread “HER2+ and need some buddies” which is under ‘Welcome and how to use the forum/introduce yourself’. It started in December 2023 so fairly recently and already has 282 posts! It may well help. Once you get your treatment plan, there is also a subcategory called ‘Chemotherapy Monthly threads’ under ‘Going through breast cancer treatment’ specifically for people who are starting chemo in a given month - so you can find some online mates who will be going through it at the same time that you are.

Please let us know how you’re doing as you will find nothing but support here from women who have been where you are now.

[donna_51]

We’re here - keep coming back here. I’m due my op tomorrow (single mastectomy and lymph node removal) and these last 6 weeks have been the toughest ever. I also have 2 children so they are always at the front of my mind.

The waiting and the dark dark thoughts are so hard. I found that hunkering down at home and focusing on the small things helped … just get through the next hour, walk the dog, talk to a friend, look through this forum… I have spent a lot of time watching tv programmes that I never did before… anything that was ‘different’ from my normal life … just to get through.

It’s rubbish and unfair… but do get support. I’ve been honest and asked my closest friends to ‘shine a light for me’ as I can’t see in my dark black hole. Knowing I’m loved and supported has helped. Also knowing that treatment available is amazing nowadays helps too + being grateful (when I can be!!) that it’s caught and can be treated also helps.

I talked to someone from Someone like Me today and again, another thing that helped.

You will get through this journey… it’s hard and definitely not wanted but you will get through to the other side!

[Paulus]

Hi,

Day or night, there’s nearly always someone buzzing around on the Forum, so never be alone with your worry? All of us who came/come here have done so for the same reasons - thoughts in our heads, like wasps in a jar, round and round?

Yes your anger is understandable, and I would say warranted, as any of us with a medical worry look for a professional to help us out and take us seriously.

If you can, as much as possible, try to be ‘in the moment’ of what is happening at each step - otherwise you never give yourself any relief from it - worrying today, tomorrow, and every day will just wear you out. You are now in the system, and that is the first ‘plus’. You will get the help and advice you need. Ask at every step of the way.

I am so sorry you are facing this at such a young age. Sending you and your family my best wishes and strength.

[Tili]

Dear Donna,

Thinking of you, wishing you lots of luck with your surgery tomorrow.

One day at a time, take all the help offered.

With the biggest hugs Tili

[luc_12]

Hello

My first time posting too but your post resonated with me a lot.

I’m 35 and just being diagnosed with IDC with a very big lump, also with 2 children.

My treatment plan is surgery first however my date keeps shifting due to pesky biopsy bruising.

Hopefully you get your treatment plan soon.

[blue80]

Wow Sophie. That is a lot for you to take in. I am so sorry you find yourself needing to be here…but I also hope you are feeling the love I don’t blame you for feeling angry about the timing on getting checked but I feel at times it is just bloody pot luck. I couldn’t even feel a lump and yet sure enough there was cancer!

You sound really thoughtful and considered in your comments which shows that you are doing your level best to be in the best place mentally and physically. It is so hard facing down something like this when you have young kids but your strength will be an absolute inspiration to them and there will be brighter days ahead when this nasty monster is beaten. Wishing you lots of love and luck xxxx

[dumbledore]

Hi Sophie
Your post resonated with me as my background is an oncology nurse and I find myself having chemo that I used to give. It’s been 18 years since I worked in oncology and so much has changed for the better. It’s such an immense journey and at the start lots of waiting around for tests and results. I found keeping busy with work helped and this forum to know I was not alone. I also walked a lot which has helped me keep positive and fit . Sending you hugs x

[tulip56]

Hello tsoph,
Sorry to hear about your diagnosis, especially for not been referred sooner.
My diagnosis was similar to yours (triple positive), and I had chemo (planned as ECx3, Paclitaxel x12) first, then surgery and radiotheraphy. Now I am hormonal theraphy including herceptin.
The chemo was cut short after the first course of paclitaxel because of cardiac toxicity (nothing too unpleseant, I just noticed a slight tighness of chest). Everything else went fine otherwise. So I would say listen to your body and report any odd symptom. Being of a young age will work in your favour in terms of side effects (I was diagnosed at 43).
I also asked myself why, possibly taking contraception for a long time (implant), but there was no clear answer to this question really. No family history for me either. I do not have children.

Good luck with your treatment. Having good friends and family around to help was key to keep my spirits up. I hope you can find some good support. The medical team is fantastic.

[po_68]

Hi Sophie, ive never posted on here b4 but ur going through what ive been through, 6 months of hell with chemo & my tumours are gone thank the lord, i go in on Friday for my mastectomy & a clearance of my lymphoids then radiotherapy & a year of phesgo injections. Keep ur chin up its hard but we’re made of strong stuff, big hugs for you and i hope all goes well for you too
Pauline x

[loulou1]

With out a doubt. Waiting is the worst. If I had a dollar for every time that was said to me. I absolutely broke down, like I have never broken down in my whole life, was waiting for results. I scared myself and my husband. Crying, saying things I have never said before. Then I got a plan from my oncologist. I’m not saying it’s all good and well, but nothing like that not having a plan. I have days I don’t even think about it. Someone will sa “you look great!” And it takes a minute to register. It’s the beginning, beginnings are the hardest. I wish I could give you a big hug!

[Jill1998]

Welcome to the forum Pauline .Good luck with your operation on Friday .

[peonyviolet-4]

Dear tsoph

How awful for you to have experienced this. I’m not surprised you’re angry - I’d be furious. I can’t understand why your GP didn’t automatically refer you to the breast clinic. In my experience, thankfully, the couple of times I’ve gone to the GP with a query about breast lump or hardening, I was automatically referred to the hospital breast clinic. On each occasion it was shown not to be anything worrying - blocked milk duct etc. It put my mind at rest and was worth the extra visits.

My breast cancer was not detectable from self or doctor examination and was only revealed via a routine mammogram. So thank goodness for them! Apparently 50% of people called for routine mammograms in my areas do not turn up! Can you believe that?

So I’m so sorry for your situation when you were ignored, but try to remain positive and take one day at a time. I found that to be the best way to deal with a cancer diagnosis - deal with what is in front of you on that day. Sending you a huge hug and wishing you well. Xx

[smt]

First time posting not really sure how to navigate this but here goes

Hi all, I was diagnosed with ER7 PR4 HER2-ve Grade 2 stage 1 breast cancer measuring 16mm back in February this year. I have had another op not related which held up my breast surgery. I had surgery 4 weeks ago however the shavings my consultant took from outer margins have come back pre cancerous and it is also in one lymph node which he removed. I have since had a further surgery on Wednesday just there and now its the waiting game again. I have had an oncotype sent away almost three weeks ago so I am waiting for this too. The waiting is so hard as I just want to know whats ahead. I have gone private with all of this but im not sure things are moving any faster

[Tigress]

Hi @smt so sorry to hear that you’re being put through the mill like this. Having Er+ PR+ HER2- is what 70% of us get so you’re on a well trodden path with lots of research into it. The waiting is by far the hardest bit and can really take a toll emotionally so the best thing to do, if you can, is plan small wins throughout the day - little tasks accomplished, small treats, some “me” time watching episodes of your favourite programme or reading a magazine or book. Stay off Google, try not to go too far into threads on here yet as other people’s stories will be very different from yours. Alas Oncotype tests are done in the USA so it does take a couple of weeks to get those results back. I don’t think it differs if you are on private medical insurance. Alas, tests take as long as they take as samples have to be sliced and diced and subjected to a whole host of procedures. It just isn’t possible to rush them and your medical team will need to know the detail of your results in order to plan the precise treatment plan for you. This is a hard time but it will pass and as soon as you have your treatment plan it will be full steam ahead to getting this thing over and done. You can always start your own thread on the forum - maybe on ‘introduce yourself’ so you can keep us up to date with progress and get some moral support if and when you need it.

[smt]

Hi Thank you so much for your reply. I have been trying to figure out how to start a new post but havent managed to work it out. I think you’re right I just need to know my plan then I can plan my life. I run my own business and I have already made loads of plans for over the summer assuming I might need chemo before the radiotherapy which I know will be three weeks worth due to the lymph node involvement. Ive cancelled my August holiday to Greece just in case and have a Dubai holiday booked for september which as yet I havent cancelled. The not knowing whats ahead is so hard but I am trying to keep busy. If anyone has any advice on sleep that would be great as that is something I am really struggling with and I feel tired all the time

[klf]

Hi , sorry you are here . I was private treatment. It does move quicker but not as much as you’d think , as there are still waiting times after op to heal and MDTs to discuss your case .
A benefit is that once they have a plan , you will know about it asap.
I had lumpectomy ( clear margins and node 0) on 22nd March , 2 weeks after my diagnosis . I could have started radio mid May but I had a reaction to my post op drsssing , I had to have steroid cream .
I’m starting radio this Wednesday.
I asked for an oncotype , even though I didn’t meet the NHS Criteria .
It only took about 12 days to come back . I’d chase your consult secretary . They may not give you results over phone , mine did , as I didn’t need chemo .
The earliest you can have radio is 7 days after your CT scan/ tattoos and , if you’re having that privately , you should be able to choose what time of day you want to go. I think you need 6 weeks post op to heal pre radio .
I’ve had physio sessions to help with post op arm mobility and breathing for radio , the breast consultant referred me.
I’m going back after my radiotherapy .
Sleep is hard post diagnosis
X

[Tigress]

Hi once again @smt. I hope this works!

if you go to the top right hand corner of your screen you will see an icon of three horizontal lines. If you click on that it will take you to the top page on the forum. There you will see all of the main categories.

If you click on Introduce Yourself you will see some subcategories, one of which is Introduce Yourself. If you click on there you will see a plus sign which says New Topic and if you click on that it will start a new thread. Give it whatever title you want then write away - stressed by the wait for test results, tips of insomnia whatever you like to include.

Sorry if I’ve confused you even more! Good luck.

[smt]

Thank you and I wish you the best for your treatment starting. I have emailed my breast nurse to see if oncotype is back yet but I have an appointment on 29th with consultant but seems ages away