Hello all - I am Stage 3(a) (Grade 2, ER+, HER2-) and am currently having radio which I hope is my final active treatment. However, even after chemo I had a further 2 live lymph node tumours (in addition to 2 taken in SNB) and another small live tumour in the surrounding axillary tissue found in my ANC. The oncologist has said I can have a CT scan or maybe even a PET scan later in the summer just to check the cancer has not spread any further since last August when I was diagnosed. The breast surgeon basically has said to me that it will come back eventually and it is a question of keeping it at bay with hormone medication for long enough that I die of something else first - but I am only 47 now so hoping for another 30 years at least! Can I ask other ladies (or any affected gentlemen) who are Stage 3 how you cope with the knowledge that the cancer has spread so far into your lymph system? How do you deal with the fear and anxiety about recurrence (which, let’s face it, is reasonably likely) long term without it taking over your life? How are you being monitored? Good news stories especially welcome! Many thanks, Susan xx
Hi Mrs Merton
I was DX with grade 3 IDC in February 2012 , I also had 3 lymph nodes affected so had the full treatment, surgery, Anc, chemo, radio and then Tamoxifen, It is a hard diagnosis to accept but I was never told it would most likely return I am under the Royal Marsden and they have always tried to be positive without being unrealistic, I think in my opinion it was rather harsh of your oncologist to advise you it would almost probably return, yes it may do but it may not, anyone at anytime can be diagnosed with all sorts of awful disease ok we may have a higher chance now but hold on to the fact that god forbid should it return there is treatment out there and you did it once you could do it again … life is a rollercoaster we never know what is lurking around the next bend … I have Lymphodema in my arm and breast so its a daily reminder I will never forget what has happened and some days are hard but we are still here 
Since DX I have seem my grandson grow and start school, hes now 8, My son marry & my grand daughter arrive at DX I was unsure if I would see that christmas, so be as strong as you can be at that time, but cry when you want and keep on keeping on, good luck with everything
L x
Hello Mrs Merton
I was dx at 48 and it wasn’t the same as yours but i hope my story helps
My tumour was grade 2 but grew rapidly and when they opened me up to do mx and immediate recon there was spread to the skin
So no recon and although only 2 nodes affected they couldn’t establish clear anterior margins
I was told Stage 2 but the very upper end (no a or b categories back then) and oncologist classed me as high risk
So i had chemo and Rads and then 3 yrs of Tamoxifen and 2 on Arimidex
So here I am now still alive and kicking aged 61
It sounds like your surgeon was a bit of a pessimist
The fear of recurrence doesn’t need to be exacerbated by talk like that
So i wish you well and hope you can move forward
Hello… I was diagnosed in 2008, aged 44yrs… With stage 3 invasive lobular 8/8 hormone positive,her2 neg,with 13/24 lymph involved. I had a lumpectomy, full axillary node clearance ,chemo & radiotherapy… I have now done 8 yrs of Tamoxifen ( tried Letrozole for 6 months following a hysterectomy but couldn’t stand the side effects).
I feel extremely fortunate to still see my BC surgeon & oncologist every 6 months & any twinge is fully investigated. Xx
Hi Susan I was diagnosed 5 years ago aged 43 with stage 3. Five nodes were affected in axilla as well as a chest lymph node which was removed at surgery. I had all the treatments and have had 4 years of tamoxifen. Have had to discontinue now as have had problems with thickened uterine lining and bleeding which I am currently being investigated for. Tried arimidex for 2 weeks but too many side effects so currently on no further treatment. I had reconstructive surgery in January this year after previous failed reconstruction (long story) and another affected lymph node in my chest was found which now luckily has been removed. I used to find it very hard at first getting myself in a state every time I had a pain or thought I could feel a lump but it does get easier over time and I find it reassuring going for yearly check ups and knowing I can phone hospital anytime and speak to bcn if I have concerns. It is good to try and distract yourself from thoughts though. I have returned part time to work after treatment finished and find reiki and kinesiology helpful. It is also important to feel in control and educate yourself armed with as much information and recent research as possible. I swear by the dairy link and if you haven’t read Jane plants book please try to and then make your own mind up. Other sites to look at are canceractive and Marnie Clark. Knowledge is power x
who knows why we get it Susan, it might be relevant, it might not, it could have happened anyway. I certainly refuse to blame myself for it!
ann x
Hi Ms Merton. I was 47 when dx in sept 2017. ER+ 8/8, stage 3, 2 tumours one was 8cm the other 2cm, 26/27 lymph nodes. Had mx, chemo, rads, 6 months of tamoxifen which was a total nightmare with depression and swears, moved onto zolodex and anastrozole which was even worse with drenching sweats every couple of hours 24/7 so onc agreed that quality of life was more important. I see onc and surgeon every 6 months. Annual mammogram and told to contact them if anything doesn’t seem right.
I was on the pill from 18, had children at 35 and 38, breastfed second one for over 2 years - supposed to help protect against it but it didn’t.
To cap it all I was made redundant during chemo and my husband had a knee replacement 4 weeks before I finished chemo so I was ferrying him to hospital, including A&E over Easter, which really wasn’t the best place for me!!!
But you pick yourself up and carry on. Having been off work for so long meant I could realise a dream and become a dog owner much to the kids’ delight. I carried on going to the gym and doing yoga throughout treatment. When I went back to work last year we got dog number 2 to keep number 1 company!!
It’s been tough. Depression, eventually got counselling but took ages, now suffering with aches and pains in all joints when is starting to affect my mobility and ability to do some simple tasks. But still here to fight another day.
Xx
September 2014!!
Hi ms Merton.
Your diagnosis is very similar to mine. Grade 2, er+, her2 negative. I had 5cm of cancerous cells and 7 out of 26 lymph nodes involved. I had mastectomy and lymph clearance on may 2. I’m now having 3 x fec then 3 xT, then three weeks of radio. My oncologist told me there was a 5% chance it had spread so I had to have a ct scan. It was clear. He stressed that they are looking at curative measures and definitely not just keeping it at bay. Look at the statistics yourself. They’re in our favour.
We have primary bc and my bc nurse told me we also have the most treatable type of bc. Outcome is based on many many factors and definitely not just lymph involvement. I’m 43 and absolutely don’t plan on going anywhere anytime soon. You only need to go back through this forum to see how many women with no lymph involvement now have secondaries and you’ll also find many many who did have lymph involvement and have been cancer free for many years.
We haven’t been given a death sentence. Let’s just thank our lucky stars that our nodes did their job and caught the little **** on it’s journey out.
Angela. Xxx
Hi
My original diagnosis in June 2016 was 1cm lump treatment would be Lumpectomy and possible Radiotherapy, had further tests and in July 2016 my then diagnosis before treatment was Grade 2 4cm Invasive Lobular cancer ER+, HER2 negative, no lymph nodes involved, started on Letrazole and mastectomy was done in Sept where they found it was a 7cm tumour and 3 of 14 nodes were positive, started chemo in Oct 16 and then Radiotherapy in March 17, CT and Bone scan were thankfully both clear so was put back on Letrazole and Ibandronic Acid but due to SE’s these were both stopped 2 weeks ago, I will see my Onc again at the end of Aug to discuss the best way forward as I will need some sort of medication due to the ER+.
I was not told what stage my cancer was but had an idea so spoke to my BC nurse last week who confirmed that it was Stage 3A, like you Angela I do not see this as a death sentence, both my Consultant and Onc have been extremely positive about my prognosis, I will be vigilant and make sure anything I’m concerned about is checked.
I am still coming to terms with my diagnosis and have asked for counselling but I now use the term " had BC " , I don’t know what could happen in the future, i could get hit by a bus tomorrow :smileysurprised: I worry at times but it won’t change anything, yes I have wonky boobs (recon due next year), my new hair is now totally grey but thanks to those Nodes I also have a life to look forward too.
Hugs and Best Wishes
Mary xx
I completely agree with this being an impetus to seize the day. Prior to diagnosis I honestly had moments last year where I believed I didn’t care whether I lived or died. My every waking moment was spent looking after other people and barley being able to leave the house.
I won’t moan about the situation, but it was dire. I was also grieving for my dad who’d just dropped down dead. I was diagnosed on his one year anniversary.
I’m a bizarre way, I believe this was his gift to me. It woke me up. The rules and boundaries changed. I decided I had to demand a life from the people around me to whom I was giving so much.
I might have bc but now I’ve also got a life and plan to be around for a very long time enjoying it. I haven’t felt so alive for years. I’m only 43.
As for statistics, they’re based on such broad and varied data I try not to focus on that. Even within the 3a status, this seems to cover a huge amount of circumstances, so I’ve decided not to wipe myself out trying to work out how long I’ve got left. ?X
Go for it Angela!!! Xxx
Hi ladies, I was diagnosed in September 2014, stage 3 idc, 26/27 lymph nodes affected, 7cm and 2cm tumours. My kids were 9 and 12 at the time and I had the news on my daughters first day at middle school which was tough as I didn’t know any parents.
You have reminded me to live life to the full. Recently I’ve been getting bogged down with day to day drudgery!
I was due my biannual onc check up in September but the hospital cancelled my appointment 4 times, so now booked for next week. But my onc called me a couple of weeks ago to say that he’d reviewed a chest ct scan I had in September whilst in hospital for reconstruction surgery, and although my lungs were clear (reason for the scan as I had breathing difficulties) but he was concerned about some changes to my thoracic spine. So I have had bone scan, ct scan and blood tests, yesterday his secretary called to say that he is still not confident that the lesions are purely down to wear and tear so I need a MRI scan which he is expediting.
Very worrying time… just had to sit it out but can’t help worrying that I’ve had upper back pain for a while and a lingering cough since radiotherapy.
Sorry to waffle on. But thanks for reminding me to have fun! X
Thanks Ms Merton. I went to yoga this morning and got home to a letter giving me an appointment for MRI next Sunday! So I need to cancel next week’s onc appointment and get a new one asap after the 3rd.
As you say you just need to know what you’re dealing with. I am prepared for the bad news, so things can only get better! Just frustrating to have to wait another 2-3 weeks to find out for sure.
My friend has invited me to go riding with her tomorrow so I’m cancelling household chores and taking the bull by the horns - or horse by the reins! - and off to have a fun gallop on a crisp Sunday morning!
Xx
Hi seen my oncologist yesterday and surprised that she told me that my cancer is Stage 3? i was distress becoz my surgeon has not informed me that my stage has changed…now its wiping myself out thinking how long im gonna live,friends and family advised stay positive but its so hard,they seen something on CT scan on my liver and spine so going to have MRI tomorrow.Spoke to my bc nurse and said “why im focusing on Stage 3” of coarse im scared thinking might leave behind my young family.But bc nurse reassured me to look at positive things like my cancer is Grade 2,er+,her- done lumpectomy with clear margins and 6/22 lymp nodes.Cant help it thinking what if there is something in MRI…its driving me insane and cant sleep.please help me reassure.
Hi Maz,we have so many ladies here who are stage 3 so you will find plenty of support across the forum , this is an old thread so you may not get much response here though, I will add a link to a current thread for you.
Its hard not to get hung up on grades and stages but the reality is we are all different and treatment plans are tailored to us personally so its hard to compare yourself to others but many many ladies with a stage 3 diagnosis go on to be just fine. Your BC nurse is right, try and focus on all the positive things and trust in your team to look after you.Xx Jo
thanks Jo xx
Hi Mrs Merton
csn I ask how you are getting on now? (I have a similar diagnoses as you did five years ago).
thanks