From bad to worse

Hello. I was diagnosed earlier this week with Invasive Lobular Breast Cancer - a week after my 60th birthday - after a mammogram recall. It was quite a big lump and had spread to a lymph node, but the doctor I spoke to was quite positive and said it could be treated.

Fast forward two days and I’ve just got back from seeing the surgeon following the multi disciplinary team meeting yesterday. I am now feeling completely defeated. He said it was a Grade 2, Stage 3 tumour but had likely been there for some time and likely to be in a number of nodes. He said he was concerned enough to need to scan me further, so I now have a CT scan and a bone scan in the next few days and back to see him next Thursday.

If it’s Stage 3, then surgery, chemo, radiotherapy and hormone blockers - a year’s worth of treatment. This is very different from the surgery, possible radiotherapy and 5 years of hormone drugs from Tues.

But I can’t help but feel he suspects it is Stage 4 from his manner. He was very matter of fact about it all and I felt more and more deflated as the consultation went on.

So now I’ve had to tell my parents (in their 90s) that the positive outlook on Tuesday is looking decidedly less so and I could be facing a spread.

It’s all come as such a shock - as I’m sure it is for all of you - and I am struggling to know how to cope with it all. I’ve not been eating since I had my biopsies done two weeks ago.

I’m not sure what to do other than worry that my future - retirement soon and doing all the things I’ve worked for the last 40 years to enjoy -has just gone out of the window.

My partner has Parkinson’s so I am worried about him and my two little dogs.

Sorry, I sound a bit sorry for myself, but I just don’t know what to do at the moment.

I’ve been trying to be positive, but every time I hope for the best, things seem to get worse.

Thanks for listening.

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Hi, so sorry to read this. You have every right to feel sorry for yourself. It is horrible telling relatives. I burst into tears when I told my parents and they were in their 70’s.
Initially, when I had my ultrasound, they said it didnt look like cancer. As they didnt know what is was that was showing up, they did a biopsy. I left that day feeling positive. Went back for the results to be dropped the bombshell. Had MRI to be told it had not spread. Had lumpectomy with clear margins but there were cells in lymph nodes. It is frustrating and stressful to be told one thing and then another. You will always get support from your nurse - they are fantastic. Maggies and Macmillan are great as well. They have loads if resources and even just someone to talk to. Wishing you the best with your treatment xx

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I’m so sorry to hear that - it must feel very frightening. But I’m so glad that they’re giving you a scan and checking things properly and quickly. To me it sounds like you’re getting good care. I too had similar news initially, which seemed to get worse at every single appointment. The difference for me is that my appointments have dragged out to 8 months now and i still dont have a full diagnosis. I think it sounds like you have a really thorough team looking after you and that they have your best interests at heart. I know it is scary, but try and trust the process and discuss your options with them. If you do have a secondary, there is a special group on the forum that has lots of lovely ladies to help you too. Good luck and keep us posted xxx

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:heart:flojo :heart: sorry you find yourself on here and glad you’ve reached out :two_women_holding_hands::heart: bcn and everyone here will help you step by step and day by day as much or as little as you need us :heart: think quite a lot of us were initially told surgery and rads and then it changed to surgery chemo and rads, and also treatment plans chan change during the treatments too :two_women_holding_hands: do remember they have seen it all before :heart: please do use the someone like me option here at bcn if you want to. You probably feel like you’ve been chucked out of a plane with no parachute right about now, but you’ve got the bcn bunji chord round your waist now and bcn having onto you so you’ll be boinging back up onto the plane soon and everyone here will listen and reach out :heart::two_hearts::two_hearts::sparkles::sparkles:Shi xx

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Thank you. That’s very kind of you. It’s a very scary place to suddenly find yourself - and so lonely.

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Reach out to bcn, ask the nurses too use all that bcn can support you with :heart: everyone here will reach out too, this is your safe space to talk, rant, cry whatever :heart: it’s you that’s important and there are no right or wrongs you do what you need to do for you and take it a day at a time, step by step, you will find your own drumbeat as soon as treatment plans in place :heart: do be kind to yourself and do remember you are still amazing you :heart: you never loose sight of you :two_women_holding_hands::heart: it’s try’s to steal your joy but don’t let it :heart: you’ll have wobbles, most of us have but together we are :muscle::heart::two_hearts::two_hearts::sparkles::sparkles:Shi xx

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Hallo @flojo

I totally get that about seeming like the news has gone from bad to worse at each appointment. It’s awful, and I’m so sad for what you’re going through.

I had a similar experience in that - I found a small lump whilst on holiday, which I expected to be just a cyst as I had one a few years earlier. At the clinic, after biopsies and mammograms, I was originally told that I had probable DCIS (pre-invasive) which would need a lumpectomy, possible radiotherapy and sentinel node surgery. After CT, MRI and bone scans, plus vaccum biopsies, it was instead found to be a 20mm of Invasive Lobular cancer plus an 80 mm area of both DCIS and LCIS, and at least 2 suspicious lymph nodes. My treatment plan changed to a mastectomy plus full lymph node clearance and 5-7 years of hormone blockers. It was a massive shock.

If possible, try not to read anything into the Surgeon’s manner. They are doing these tests to find out as much as they possibly can so that they can treat you as effectively as possible and are still at the information gathering stage. I know it’s hard, but try to only deal with what you know at the moment, and as many of us say, don’t google.

I also found that I couldn’t eat for a few days after diagnosis, and then weirdly, found that I could only eat very bland, beige food for a while. I just had no appetite.

Be very kind to yourself and don’t expect too much of yourself. You’ve had a horrid shock and your world has turned upside down.

It will get a bit easier once you have some definites and have a treatment plan.

Keep posting, we’re all here for you xx

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Hi @flojo I just wanted to add my love and support in this awful, awful place you find yourself. It’s the not knowing and until you see the surgeon, you are going to think the worst. We have all been there. But just think, it has changed once and it can change again, this time for the better🤞. Once you have your full treatment plan, however long and arduous it may seem now, the more positive you will be because you will be actively dealing with it. Oh goodness, I feel for your dear Mum and Dad, how worried they must be. Is there any way you could get in front of your GP and ask for something to help you over this period of anxiety and low mood? Many do. Please let us know how you get on. I am in my 60s myself and will honestly be thinking of you and rooting for you.

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Thank you @Tigress. I did wonder about the GP. My poor dad was practically in tears on the phone but I’d said I’d update him after today so I didn’t think I could just leave it. I don’t know how I am going to get through the next week - I’ve told my boss that I’m using up some of the time owing to me and she is very supportive. But I can’t help but feel in my gut that it’s going to be stage 4.

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I’m so sorry to read that and unfortunately I can relate. I had a similar experience last year. They thought it was a small tumour that hasn’t spread and at the end it turned out I had a bigger tumour and 7LN affected (so stage 3) but the PET scan was clean. it hadn’t spread beyond the LN. It is normal they do CT and bone scans when a LN is affected but it doesn’t mean you’re stage 4. Waiting to get all of the results and know what your treatment plan will be is the worst time but hang in there, it will get better. Sending you big hugs and rooting for you.

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Thank you. It’s helpful to know that there are other people who understand. The BC nurse was very kind but she could see I was completely spooked and deflated by the surgeon.

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Oh Flojo, it’s going to be alright. Try to think of it the other way round and that your doctor is being extra careful and investigating everything. I would welcome the bone scan as a precaution. Don’t let his less than honeyed bedside manner throw you of course

My diagnosis was also disjointed as the post mastectomy pathology was a lot worse than the biopsy had suggested. And yes, I had a year of surgery/chemo/radio but I came through. Four years on no sign of a return and I’m fit as a flea at 74.

You can and will do this. Best foot forward and plod on till the treatments do their work. Hugs from my dog to yours.

.

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Oh @flojo there is nothing worse for a parent than seeing their child in distress, particularly about a medical matter. You should speak to your GP. I don’t know where you live but your local hospital may have a Maggie’s Centre or a MacMillan drop-in centre. If you can find one or other in your area, they are invaluable for talking through your fear and anxiety. You could also ring the Breast Cancer Now nurses on 0808 800 6000. They are wonderful and give you all the time you need to talk things through.

Once you’ve got or had breast cancer, the anxiety about metastasis is something you live with. It does recede in time as it’s impossible to live with that level of fear long term. You are right at the start of your journey so it is go to be THERE :brain: for a good while. Your surgeon’s bedside manner has not helped but he is doing his job and doing it thoroughly. The chances of a woman having de novo Stage. 4 breast cancer is around 6% in the UK so the odds are very much in your favour.

I empathise with everyone who posts on this forum but, once in a while, a post hits me in the gut and that’s what your initial post has done so please do let us know how things are going. Biggest of big hugs to you.

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I think it’s quite normal to have scans to check if it’s spread. I had an MRI scan but luckily for me it hasn’t spread further than lymph nodes. The wait is the hardest and fingers crossed it hasn’t spread for you too x

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Hi @flojo i am so sorry to hear of your experience and anxieties. Your story punches me right in the gut as a reminder of what I went through also.
I was diagnosed in February. I had first found a small lump which I had thought was a blocked milk duct, I had not long since finished breast feeding my daughter, who is coming up 2 now, and I had been struggling with blocked milk ducts with both my kids so I thought, it’s obvious that, I’ll give it a while, do some massage to encourage it to disperse and if it hasn’t in a week or so I’ll nip to the docs and get some antibiotics… so anyway a month goes by and I’m in the shower and that lump was massive now! The size of a small lemon. I was gutted. Straight on the phone to my doctor, she had me in within the hour and did an exam. I could tell by her face she was worried. So off I go for biopsies, scans, mammograms all the tests possible. The lovely woman who did my biopsy said these words that will forever sit with me “Please when you come for your results next week bring someone with you” I was heart broken. What was a blocked milk duct in my mind had suddenly turned into cancer.
It was confirmed to be invasive ducts cancer with a large lymph node involvement. 5 months of chemotherapy, full mastectomy, radiotherapy, hormone therapy and a life time of worry that it will turn metastatic. I have 2 young children 3 and nearly 2. My world completely collapsed.
Then off I went again for another MRI and CT scan as they were worried about the level of lymph involvement that it had spread. They found a suspicious area on my liver. Luckily it was just a cyst. Oh the relief!
My point of sharing my story with you is that I was in the same position as you with the possibility of being told I’m stage 4 - it could still happen but my response from the chemo has been brilliant. No more tumour in site - I forgot to add that there was another 2 in my breast that I didn’t detect at first, they saw them on the scan. Basically my whole right breast was riddled with cancer. I laugh now as that was my favourite breast, all firm and perky… now I know why :joy: not so perky anymore now the tumours have gone.
I want you to know that there is an end in sight, you will be ok, your family will be ok and you will find strength from somewhere that you have never had before. Cancer is an absolute sh*t show and the emotional hell it puts you through is aweful. I’ve found strength in my family. I have to fight this and survive for them. There’s no negotiation there.
I’m actually weirdly enjoying my cancer journey as it has changed my perspective on everything. My happiness has taken a priority, my view on life has changed. My love for everyone and everything around me has increased. And empathy and compassion for others is insane! In a way I’ll be forever grateful that I’ve had this experience.
And as others have said in this thread, you’ve done the right thing by reaching out, the level of support you will recieve throughout this journey is incredible. Just remember to ask for it and don’t sit at home consumed in worry. It’s not good for you in anyway, stress is a trigger and we do not want to put anything else on your plate that will make it worse. Reach out, talk and get some sunshine :sunny: you will be ok :heart:

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Thank you for your uplifting message and I am glad you are ok. The one thing I have already changed is my attitude to work - I couldn’t care less about it now and up until now it was all-consuming. I think I partly blame the stress of it for where I am now. I’m very pleased you shared your story. It is so hard not to go to a dark place. Thank you. xx

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Ah I’m glad to hear it. I did this too, well it took a bit of encouragement from my partner to temporarily give up work but I have and I’ve managed to focus all my time on my family and my treatment and recovery.
It’s been lovely not having to stress about work or my expectations there. I’m a beauty therapist and my worry was that I would constantly have to rearrange clients, have the cancer talk with them as they will obviously ask and be curious, and then have to work in an environment with other gorgeous ladies when I’m not feeling 100% myself. I know that sounds so shallow but it has actually done my mental health a lot of good stepping away from that and allowing myself to take control of my hair, body, treatment etc in my own way and not have anyone question my doing so or anything like that. I feel like I have total control at the minute and it’s a great feeling :slight_smile:
I really hope you start to find the positive in this crappy situation soon and you’re able to see it as I do. You have been dealt a rubbish set of cards but with the right moves you can still win the game :smiling_face_with_three_hearts:

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Hi @flojo I was diagnosed with stage 3 lobular BC back in 2021. I was 43 at the time and already symptomatic. I had a breast MRI and what the surgeon told me initially turned out to be much worse. My tumor was 12.5cm and I had 3 positive lymph nodes so from lumpectomy and RT I had a mastectomy with immediate reconstruction, full lymph node clearance, 6 months of gruelling chemo and 15RT. I was on Abemaciclib for 2 years and am having 3 monthly Prostap injection to keep me into the medically induced menopause (which is worse than having chemo). I absolutely hate the side effects of it. I’ve been taking AI aka the dreaded Letrozole for over 2 years now and I have to be on it for another 5 years. My knee joints are killing me. I am also having Zoledronic acid infusion every 6 months for 3 years - my last one is in October.

My husband was diagnosed with multiple sclerosis a year after my diagnosis and now is using wheel chair to get around…so yeah 2 life changing events in less than a year on top of COVID. My kids really had a very hard time. My daughter was doing her A levels and she did so well. I am so proud of her. She just finished her first year at uni. My son is doing his GCSEs next year. I am back to work on a phased return.

I want to be honest with you that it definitely gets better - life goes on and you can’t just feel sorry for yourself…my husband and I tried to stay positive through everything because of my kids and honestly, what else can you do…cry all the time, feel sorry for yourself and what you’ve lost, pull you hair…how is all that going to help you… resilience is the word…and abundance of it!!!

On top of all of this a friend I met through Maggie’s 'Where now?" course just got diagnosed with secondary BC. Hers is triple negative and it’s not a good prognosis…so yeah life is bitch but we need to stay strong…

Wishing you all the best. Take care.

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Oh flojo.
I’m sorry you’re going through this.
Consultants & surgeons are always hard to read, but that’s because they are totally focused.
Mine didn’t make “small talk”, he just concentrated on his job.
As everyone has said, it sounds like they’re being thorough.
They also have to give you “worst case scenario”.
I know it all seems daunting, but you will get through it, we have all been where you are & are all here for you. XX

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I’m so sorry to hear about your husband. Tough times seem to come at once, don’t they. Take care. xx

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