In August I had a routine mammogram which picked up an abnormality. In September I was diagnosed with Invasive Lobular BC. In October I had a therapeutic mammoplasty and an axillary clearance. I am due to have radiotherapy in the New Year and start Hormone Therapy for the next 5 years.
I had the results of my oncotype test come back yesterday which were positive - low chance of recurrence in next 9 years.
But there seems to be no acknowledgement that ILC is known to ho dormant for 10 to 15 years and then recur as a secondary cancer. No one mentions that whilst the survival rate from Invasive Ductal Cancer improves the longer you are cancer free that the survival rate for ILC reduces over time.
I understand I need to focus on now and get through this current stage. I’m a logical person, I deal with stats and look at things in stages and steps. But it feels like I have a massive shadow over me. I’m 56 and thought I had so much life to live!
I know this is probably a temporary blip in my psyche but I genuinely don’t know how you just live life knowing there is a significant chance, the longer time passes that it’ll be back with vengeance.
I fully understand your feelings, I am of a similar mind when it comes to analysing and statistics. I too have read the facts about dormant cells…so I really do hear you.
I’ve had lump removed and waiting for Rads. But the oncologist mentioned I had cancer cells in blood vessel, and I’ve been quite in a spin since. I asked her why am I not having chemo? I’m prepared to have chemo if it offers more protection. But because my “benefit” statistics were low, the answer was no.
In my mind, I will be living with hormone suppression for 5 or 10 years, and after that any dormant cells might wake up and I can’t think about the rest!
I don’t know how you cope with it, but I’m guessing as time goes by it will be less prominent in the mind. I also have to remind myself, the recurrence rate is statistically low…so I hang onto that. And who knows what science there will be in 10 years.
I’m going to see how I am after rads, and might take up some counselling. Some ladies on here have said it’s very good, and helped them.
Hi , I was diagnosed with ILC in March .
I was a week off 56.
Was 2cm tumour that did not show on a mammogram . I had noticed a small mark on my breast .
My lymphs were clear and I had 5 sessions of radiotherapy , I found that quite emotional , as I truly felt like a cancer patient .
I started on Anastrazole in April .
You are still in active treatment, so it’s still very much present in your life , once that is finished , that’s when you start to rebuild yourself .
I’m back at the gym and I cut my hours at work to cope with fatigue . Thank you Anastrazole .
I very much wanted an answer to the recurrence question , I think we all do .
I’m learning to let it go a bit more .
My oncotype recurrence risk was low and I try to take hope from that .
There are a few celebs with ILC. Victoria Derbyshire , I think Michaela Strachan and Jane Hill , the newsreader .
They have a few years clear of treatment.
There is a group on Facebook called Linking Lobular Ladies”, if you want to connect with ladies who have ILC.
I’ve had through my BUPA cover .
Counsellor has helped me accept that I’ve been through trauma , which will take time to process .
Macmillan also offer sessions and , if you have a Maggies nearby , they do too.
The Moving Forward course was helpful .
The book “Reconstruction” by Rosamund Dean was helpful .
I’m coming up to 3 years since my diagnosis .its an easy date to remember New Year’s Eve . I’ve also had mammoplastie, radiotherapy and am on letrazole, another 2.5 years to go. Living with having cancer is sometimes tough . I have used Maggies and had counselling and also saw a psychologist with them which really helped me get my head in the right place . There are times when my diagnosis and living with cancer are much more prominent in my thoughts- usually around check up . In many ways having had cancer has made me take stock and I’ve done some amazing challenges, cycled lands end to John O’Groats as one of them . I’m also about to retire so I have more time to Do crazy things with my husband. There are some positives from a diagnosis. I’ve made some amazing new friends and also found out who my real friends are . I tend to be able to say no to things I don’t want to do and seize those that I do . I try ( don’t always manage it ) not to sweat the small stuff . Onwards and upwards to new adventures.
Hi,
I am living with invasive lobular breast cancer, diagnosed back in december 2020, grade 2 no nodes 25mm size lump!! two lumpectomies to gain clear margins, not uncommon apparently. After biopsy nodes where clear, followed by Rads, then as being post meno, 55yr then, tamoxifen, this didnt agree with me, then put on anastrozole for 5 years. This after a year caused various issues with my osteoarthritis, so after some deep conversations discussing percentage of reoccurance 2% -5% with my oncologist, i stopped the A1’s but was still having appointments to see how i was doing as developed odema in surgery breast.
So, on hearing a low percentage, slung myself back into work albeit slightly reduced hours, fatigue played apart in that decision. Started to gain back my new me with scars. Counselling helped then, even more so now. Started to enjoy my life with my husband and explore new adventures, life was looking good, i was moving forward …
I was told back then by my surgeon that ILC is sneaky into which how it grows (like fingers) not a lump as i first thought and felt at the time of finding it myself through self checking.
Also found out if no nodes present with cancer cells at time of surgery, it doesnt reoccur that way but through the blood instead.
I dont want to cause anyone further stress/anxiety this is not my intention, if i have im so sorry, living with secondary IL breast cancer is no walk in the park, 2 years and 9months after first primary diagnoses.
If anyone wants to ask me any questions at all, please do i will answer any to the best of my ability.
Take care
Hi @alikat I completely understand where you’re coming from. I’d just turned 50 when I was diagnosed with quite extensive multi-focal, grade 2 ILC (no lymph nodes). I had a mastectomy but wasn’t recommended chemo because of a low-ish oncotype. I genuinely feel that it’s inevitable it will recur either locally or distantly in 10 or 15 years. I’m only on letrozole for 5 years - which would possibly be okay for IDC but as you say, lobular tends to recur much later…
I’m definitely living my best life right now and not dwelling too much, but deep down I’m doubting I’ll live beyond 65, and that’s pretty cr*p isn’t it!
Thank you for sharing your story @purplerose - sending you love, positivity and strength. (No stress for me) @sal1 - look up Dr Liz O’Riordan’s YouTube piece about LVI - it should put your mind at rest.
sending hugs to everyone xx
Thanks for sharing your story. It’s good to hear from others in a similar situation. It’s very isolating otherwise. It looks as if we’re at a similar stage though I lymph nodes removed and not aware of anything in my blood. When did you find that out?
Thank you klf. I had no symptoms at all so was a shock when I got a recall from my mammogram.
Thank you for mentioning Vicky Derbyshire, I knew she had BC but not that it was lobular and I found a podcast she did with the founder of lobular cancer uk amongst others.
I have found it very isolating. I’ve looked for the Facebook page you mentioned but didn’t find it?
You sound like me normally! I have plans to fo an ultra next year! I did one this year 2 weeks before surgery and found it helped me stay focussed etc. I’m hoping I’ll be able to do that next year again.
I too hope to find a positive - my friends have all seen me as that throughout this - I’m just really struggling atm and feel very isolated.
I can’t share the link from FB
It’s this one
You have to request to be added , can take a while [quote=“alikat, post:8, topic:125193, full:true”]
Thank you klf. I had no symptoms at all so was a shock when I got a recall from my mammogram.
Thank you for mentioning Vicky Derbyshire, I knew she had BC but not that it was lobular and I found a podcast she did with the founder of lobular cancer uk amongst others.
I have found it very isolating. I’ve looked for the Facebook page you mentioned but didn’t find it?
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@diddy1 thanks for that info about LVI…it was very useful. I didn’t know the correct term.
@alikat i found out two things by chance. Firstly my tumor was uprated to grade 3. My surgeon had mentioned high grade DCIS, but I don’t recall any mention about the tumor. Regarding the LVI (as I now know it’s called). My oncologist was reading my path report while dictating a referral, she mentioned the tumor was grade 3. Then muffled something about cancer cells in blood. I had to request a second appointment, because I wasn’t sure I had heard her right, and that was the first I knew about both. That’s when my mind went in to overdrive again.
I need more distractions, I think I’m going to put my Christmas decs up early and watch a ridiculous amount of TV
Hi @alikat sorry to hear about your diagnosis. I was diagnosed with invasive and advanced lobular breast cancer in 2021 stage 3, with 3 positive lymph nodes. I was 43 years old at the time.
My advice to you is don’t read…just enjoy every moment with your family and take one day at the time. I gather you didn’t have chemo and it was picked through a routine mammogram so I think you need to always focus on positive things in life.
Mine tumor was soooooo big - 12.5cm and I didn’t have a lump as LBC is behaving differently. It has spread to the lymph nodes and I had 6 months of chemo, 15 radiotherapy sessions, 2 years of Abemaciclib and 7 years of Letrozole. Haven’t even been offered oncotype test as when you are so young they are throwing everything at you…but saying that of course I am scared about the cancer coming back but that’s not how I want to live my life in fear…I just want to enjoy whatever time I’ve got and not just existing…
My oncologist never actually told me that I am free from cancer. He was always saying you had the best treatments possible, etc. so I know that I am at a high risk of recurrence further down the line…I am not putting my head in the sand and pretending that all is good but I also don’t want the cancer to control my life…
Wishing you all the best. Take care of yourself. Xxx
I’m so pleased I found this thread, have just reread it all. So many of you wrote what is in my head every day.
I am enormously grateful for the ILC treatment I received, but I noticed that the medical and nursing staff were so very careful never to say anything overly positive about the future. And I’ve since read a lot of ILC studies.
I’m trying to live my best life and feel relatively confident I’ll be recurrence free for this 5 year post surgery window while taking exemestane.
But I am sceptical about thereafter. I am very disappointed that it is still so hard to see ILC on imaging and deep down I think mine will recur.
.
x
