Hi. I'm 46, diagnosed last month with invasive lobular cancer in one breast, multiple tumours that have probably been growing a while undetected. I'm having a single mastectomy in 3 days time, no reconstruction permitted due to needing radiation.
How I feel about it changes from one day to the next. Yesterday, I was scared of the pain. Today, I'm sad.
Hi MoominAncestor, So sorry about your diagnosis. I didn't have a mastectomy but from what I've heard from friends who have and also read on here there doesn't seem to be much pain. I think it's managed well with pain meds.
My advice is to but front fastening bras and tops and easy to pull on trousers - you won't be able to reach above your head initially.
I'd also suggest posting on the main breast cancer website as you will get faster responses and more of them as it's busier than it is on here.
Don't feel sad, try to focus on being cancer free in a few days time.
Wishing you all the best for your surgery xx
Hi Moomin
I’m wondering how you are you getting on a year on ? I have a similar diagnosis with positive lymph nodes and up and down emotionally.
I searched lobular and you came up️
Hi Tropical. I'm sorry about your diagnosis. You will find your own emotional way through, i think we all do this differently and for lots of diffetent reasons. I found that I had all sorts of changing feelings for months. Initially those emotional changes happened quickly so I felt confused and unsettled and not in control, but as I got used to it my feelings changed more slowly, which I found was just part of my way of coming to terms not so much with having cancer, which stuns you anyway, as having to go through cancer treatments and procedures which can take up so much brain space when you want routines and life to continue st the same pace as before. Especially if you feel fine most of the time. Emotionally I'm much more levelled out now and fairly stoic about it all. But a strange twinge can sometimes make me worry that it's back. I think it's normal to feel like that. And there's on going scans and check ups to make sure it hasn't come back.
I have found that my treatment options weren't all laid before me in one go. In fact it was 4 months after my mastectomy that I first met an Oncologist and a further 2 months for radiation therapy to begin - which I know from some people's experiences is slow going- it's just my NHS Trust luck of the draw. So for me, rather than fixating on a point in time where I might become cancer-free, and since my particular cancer can be a bit sneaky and aggressive (not all lobular cancers are) so I've learned to accept this as a journey, an ongoing different way of living with my body, instead of a binary on-off button way of thinking about cancer. It may be different for you, and that's okay too. Whatever feels right in your mind is the right way to deal with your diagnosis. You might find your mindset about it evolves over time. Mine has.
Being big busted, some of what I have found hard is being physically so very lopsided since surgery. It took some persistence to get the right expertise to help me find a prosthesis that made me feel confident in my own clothes again. But it was worth the extra effort. And I am finally now talking with plastic surgeons about the 2+ future surgeries I will need if I want to have a reconstruction (this process can be much less complicated for people who didn't have radiation) so like I said, it's still very much part of a journey for me. Yours may well be very different.
I'm on hormone meds for 5-10 years which have some unpleasant side effects but have been tolerable. (Again, not everyone needs these meds) A glitch for 3 months where one of my drugs was changed for "admin resons" made me realise that not all drugs are equal, And some that do the same job as others can have better or worse side effects. So if you find yourself choosing treatments, if something makes you feel bad, there can be alternatives, so keep positive and let your doctors know your side effects, not all just have to be tolerated . In fact my Onc has seemed very keen to help me manage side effects, because a high proportion of women don't complete their course of medication. So it has been helpful to talk about it with the consultants and nurses.
I have some niggly sore areas in my chest and underarm still from last year's surgery.and being nuked (as I like to call the radiation). Most of the time I don't notice the sore bits but sometimes a bra or other clothing can rub uncomfortably. Again, I've found it bearable and it's certainly better than having cancer. My cancer was fairly large and painful so I was ultimatrly glad to have had it cut out of my body. I had 1 positive node, too which was still considered Early Stage cancer.
Invasive lobular isn't the end of the world. It's a git, of course, like all cancers. But there are ways through, your doctors know what they're doing and will advise you, and you always have it within your power to decide which procedures or therapies you feel you can cope with, and to some extent the timeframe for some of those too. So try to remind yourself that you're still you, it's still your body, nobody else's, and that you will find your own way to mentally (and physicallly) come to terms with it, fix it, and continue with your life.
Feel free to message me if you would like someone to chat with or vent about it to. I was fortunate to find someone here who did that for me, and we're still in touch 18 months down the line from our diagnoses.
All the best. Stay positive.
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