Lobular Cancer - New Diagnosis

Diagnosed with breast cancer Recently diagnosed with breast cancer
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Hi All

I was diagnosed with Lobular Cancer in August. I had known about the lump for a while but life got in the way as my sister was dying and I was the sole breadwinner in my family. I have done the biopsy (terrible and dehumanising), had the MRI and two CT scans. Unfortunately for me the tumour had been quietly growing for a while and is large but CT and MRI are not showing any spread so they have listed it as Grade 1 for now. I am in the Public System and have been offered a Mastectomy with immediate reconstruction and am currently awaiting a surgery date. I am very proactive and since August have changed my diet and lost 20 kgs and am pretty much living on veges, fruit, nuts, seeds and a bit of fish for protein. The positive side of this whole thing is the weight loss which has enabled me to halve both my blood pressure and thyroid medications. The downside is the hormone blockers. I have always been a really positive, glass half full person so am struggling with the way these blockers make me feel. I am 56 so have been through menopause during which I experienced a year of anxiety and also some depression which I managed myself. I am having some low days on this medication (anatrole) and also feeling bouts of anger which is unusual for me. I am wondering how people have managed this side of it? I feel lucky thus far as I have not had anything in the way of joint pain or hot flushes which I was expecting. I know from reading on here a lot of people have struggled with it. I can’t help but think if more men got this disease that medication would never be tolerated or prescribed!

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It sounds as though you have been through a heck of a lot in the last year, so hardly surprising that you have days when it’s harder to be positive. I can’t say anything about the treatment you’re on because I’m further behind in my diagnosis than you. I was told it was lobular cancer 10 days ago when the biopsy results came back, but I’m waiting for the MRI and a treatment plan. In the meantime I’ve been prescribed Letrozole though I’ve only had that for a week. What I can say is that this group is fantastic -there is so much knowledge, kindness and understanding here that it’s been a huge support to me over the last month. I’m sure someone will be along soon who does know, but I didn’t want to leave you unanswered.

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Hi @cleolotus

So sorry for your situation. this whole thing is a big learning curve and we go through so much change in our bodies and minds. There are some positives that come out of it. It made me more attentive to how I feel and what is important in life. Having my ovaries out sent me to a dark place that I had never experienced. My saviour was a lady care magnet. The best £45 I have spent. It keeps me cool calm and collected and the darkness away.

Hope you find your saviour xxxx

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Thank you for your reply. I am so sorry you are on this journey as well. I agree with you about this forum. I found it a while back and lurked for a while. It is helpful to have people on the same journey as we can learn from each other and it also helps us to make some tough decisions. Good luck with everything going forward :growing_heart:

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Thank you for your reply. I am sorry to hear about your ovaries and how it made you feel. I feel fortunate that I have already been through menopause but of course some of the symptoms are like going through it all again! I have been surprised since this diagnosis who has really come forward to be kind and helpful (people I had never expected!) and who has disappeared when the chips are down. It really makes you evaluate everything in your life. Keep keeping on :growing_heart:

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I am sorry you are having a rough time. I just wanted to say how much I empathise with your final point. In many ways we are fortunate in that a cancer diagnosis that might have been a death sentence 35 years ago is now often no more than a brief illness. However, like you I found the hormone blockers intolerable with devastating side effects that turned living into simply existing. I took the decision to discontinue them and will take my chances if cancer returns, but I do wonder when medical research is going to come up with alternatives. At the moment we are still stuck in the slash/poison/burn syndrome, followed by up to ten years on drugs that radically alter the quality of life for so many cancer survivors. Time indeed for some new thinking.

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I whole heartedly agree with you. X

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Yes, I have read on here of so many others deciding to discontinue. Like yourself I am wondering how we are still here at cut/slash/burn, etc when trillions of dollars every year are donated for Cancer Research?? For myself I am taking some alternative medicine alongside the conventional which has less side effects. Every day while waiting for this surgery date I want to pick up the phone and walk away from the conventional treatment but anything different is so hard to access or is scorned. This whole journey is full of very hard decision that is for sure. What were your devastating side effects? There seem to be so many!

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Dear Cleolotus, it has been a truly tough year. Life can throw so many things at us sometimes that it can be utterly overwhelming. Well done for keeping on going. It takes real strength.

I also am on Anastrazole for lobular cancer, aged 61, post menopausal and 1 year in of 5 year inhibitor journey, grade 2 due to 6cm size, double mastectomy no reconstruction to reduce risk (was originally a uniboober but had other SMX 6 months after first as had read a lot about the sneaky nature of Lobular. My second breast had LCIS which didn’t show on mammogram so I am pleased a perservered with DMX).

Re symptoms, yes, I agree that I think if men were taking it a lot of the side effects would have been reduced.

It helps to know your oncoscore post surgery to be able to evaluate stats re. recurrence reduction with the hormone blockers.

Re. Your side effects, It is difficult, I believe and have frequently been told, to fully isolate the symptoms from the blockers, the shock/life altering effect of a cancer diagnosis/treatment and also grief. I also was going through an awful lot at my diagnosis time. Anger is a frequent emotion in the early stages anyway, of diagnosis, as it all seems so blooming unfair in many ways.

You have sadly only very recently lost your sister under very difficult circumstances. No wonder you sometimes feel angry. May I suggest whether it would be possible to see a cancer/grief counsellor? I would highly recommend it. Being able to process my thoughts and feelings has helped me in my journey a great deal.

I have found the hormone blockers hard going. Insomnia, fatigue and hot flushes primarily. But I have kept going because the alternative is potentially worse. Saying that, I am reviewing anastrazole with my consultant next month, 13 months in, to discuss the impact and alternative scenarios.

Whatever you decide on this journey none of us wanted to be on, you will know what is right for you. We just need to go gently on ourselves, I reckon x

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Oh dear, where to begin? Aches and pains in my limbs sound minor but they were so severe I was virtually spending my life lying on the couch. Hot flushes and sleeplessness I could just about cope with, but the depressive mood, overwhelming tiredness and constant pain so that I moved like an elderly cripple, were just too much. I am not young and having tried both Letrozole (terrible) and Anastrazole (marginally better) for more than a year I decided I would rather have some good years than live a longer time as a person masquerading as the woman I used to be. Four years on and I am fine. I acknowlege the risk but when my oncologist first told me that these drugs provide ‘up to 3% more protection’ I nearly fell off my chair in shock and told him to come back when we were talking 30%! I would stress that this is NOT the right decision for everybody and there are people out there whose reaction to the medication is minor. But for me they are the ultimate in dirty drugs and I have abandoned them.

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I think AIs have made me very depressed or at least much more so. Been on a couple different ones since summer. Started an antidepressant this week. TBD. But totally agree they need to come up with something new. Vaginal estrogen also to deal with those side effects.

Have joint pain as well, especially hands am very active

I also have lobular.

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Hi I’m 58 and was on HRT having struggled all my life with anxiety and then with my diagnosis in June of hormone positive IDC tumour I had to stop it instantly. That was bad but now I’m also on anastrazole. After 3 months I maybe feel not so bad on it but my treatment is all over (lumpectomy, full lymph node clearance and radiotherapy) and I feel like I’m living in some bad dream. Somedays I’m ok, other days I have a feeling of impending doom and everyone thinks I should be so happy and grateful that its all over which I am but also living in a state of anxiety. So totally understand. I hope you get through your surgery with minimal fuss.

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Thank you edithrose for your lovely reply. Although not my full time job I was trained to work on a suicide hotline as a crisis support worker and did this for a few years. The journey helped me to manage my own depression during Menopause and also has helped me to accept and deal with my sister’s death. I know that the anger and the low mood is because of the hormone blockers because before taking them, despite the diagnosis I was my normal upbeat self. People who know about my diagnosis were telling me how well I was taking it and actually I have not spent long worrying about it…… of course this may change as I get closer to the surgery date. I had been taking the anatrole early in the day but found the low mood would start a couple of hours later so am now taking in late afternoon which seems much better. Today I met some friends and had lunch and felt like my normal self again so maybe taking it later in the day will work better. I too have researched how Lobular spreads and realise that I will be under close surveilance for the rest of my life.

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So sorry all that happened to you Teddy. If there is one thing I have learnt on this journey it is that people have to follow their intuition and make the right decisions for them. Sometimes it won’t be what others expect or advise but ultimately it is our lives to live. I have lurked on a few forums and totally get why people abandon them. Ultimately you have done what feels right for you and I salute you for your bravery.

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Thank you Lolo. I get what you say about living in a bad dream! Some days it all seems so unbelievable that this has happened. I hope that you have someone to reach out to so you can cope with your anxiety. Interestingly I had a year of anxiety during menopause…. never had it before and then it just went away. I was wondering if that would happen again on anatrole but nothing so far. There seems to be a lot of support and services available. Because of my time working as a Crisis Support Worker I am fine with using the various hotlines should I need it. Thank you for your kind words about the surgery. I am under no illusions that it won’t be a walk in the park but trying to keep positive.

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Thank you cleolotus for your post and to edithrose for your thoughtful and helpful reply. I am going throught simlar thoughts at the moment, but you articulated them so clearly.

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Hi teddy 271,

I’m a year and half out from invasive ductal carcinoma stage 1. I had symptoms which made me suggest a mammogram .it’s rare they said to have symptoms wirh early stage breast cancer . I had a lumpectomy and radiation . I’m currently on letrozole. At first it made me just tired . After a year of it I started aching all over like most people say . I don’t sleep much either . I am doing better on it at 1 1/2 years . It matters the pharmacy that makes your medicine . There are 3 different companies that make this drug . I was told from a friend that her doctor suggested a teaspoon of honey would help inflammation . Something had helped . I take my medicine at night . I pray for everyone on this forum . It’s your choice what decisions you make whether or not to take the blockers or any other treatment . None of your choices are wrong . No. One know how you feel whether good or bad . I’m so thankful like someone posted on her we are advanced in treating breast cancer . Breast cancer is cureable . I’m also thankful for the oncologist, surgeons And nurses that are there for me and all their other patients .

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Hi cleolotus,

Bless your heart .Being there for your sister and facing your own health challenges . You are still standing . I’m here for you if you need me . There are good days ahead for you ((((Hug)))

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Thank you Blessed :growing_heart: I woke up this morning and felt glad it has clicked across to 2026. Although I have a hard journey soon I am glad to see 2025 in the rear view mirror! Thank you for your positive reply and (((Hug)))…… right back at you! Wishing you all the positive things in 2026 :growing_heart:

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Hi. I agree with the other lady who’s on Letrizole. It was my first med but it really caused me a lot of pain in my arthritic fingers joints. I was advised to ask tontry another which has helped. Maybe you could ask if there’s another you might try? Wishing you well.