Living with a Stage 3 diagnosis

[Ms Merton]

I’m sorry to hear this Helen, it must be very distressing for you. I was 46 at diagnosis with teenage step-children. Have you discussed your fear of recurrence with your oncologist? In the end it’s a bit of a lottery though. I had some counselling which helped.  Perhaps focus on creating and recording lots of memories with your children that they (and hopefully also you) can look back on in the future. Sending you my best wishes. 

[helen39]

Thank you for replying. I am only 39 and grade 3 as well as four nodes so I’m 

just so scared. My children are so young and my heart is absolutely breaking for them x

[Ms Merton]

Hi Helen. I’m pleased to report that I am well and enjoying life. Still working full-time. I now do a lot of exercise which helps with stress and the weight gain from Tamoxifen.  I do still worry about the future a bit, but what can you do about it? Sorry you are going through this but at least cancer teaches you to grab life and enjoy it! 

[helen39]

Hi Mrs Merton

csn I ask how you are getting on now? (I have a similar diagnoses as you did five years ago).

thanks 

[maz74]

thanks Jo xx

[Jobey68]

https://forum.breastcancercare.org.uk/t5/Diagnosed-with-breast-cancer/bd-p/4432

[Jobey68]

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 

[maz74]

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.

[riversidedawn]

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

[Ms Merton]

Dawn I’m v sorry to hear you are going through such a worrying and stressful time.  If you have been short of breath since radio, I wonder if there is a chance that the radio has damaged your lungs slightly? Let us know what the doc says once you have your MRI.  I tried to take the view when i had a PET scan recently that at least if it is bad news you know where you are and can start treating the problem (i was ok this time fortunately).  

Baz - what a great post.  Such fantastic advice.  I think we need to be honest about the risks we live with (whilst not overreacting) and get the most out of life while we can.  Of course that is good advice for everyone, whether or not they have cancer, but our diagnosis does focus the mind.  I have also found the Moving On course v helpful.  

Best wishes to you both. Xx

[riversidedawn]

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

[whitelily]

Hi Baz yes you have the right attitude I am 5 years down the line from stage 3 diagnosis. I did have a local recurrence found at my reconstructive surgery in January which was removed thankfully and no other evidence of disease. It is something we have to live with and be aware of but we have to still try and be positive and get on with life which is easier some days than others. It is not inevitable for any of us with a stage 3 diagnosis that it will come back and go on to stage 4 and I think there is a lot we can do ourselves in order to feel in control of the situation. It's great that you went to New York and you are making memories with your daughter I have had so many holidays in the last 5 years including New York, Rome and Dubai and I have just come back from 2 weeks in Los Angeles and Las Vegas which was amazing. As I always say to my husband you have to do these things when you feel well as it's too late once your health has been taken from you. If cancer diagnosis teaches us one thing it is to live your life and do what you want to do and not have regrets x

[Bazookas]

Hi, I was diagnosed in the summer of 2015 with Stage 3c lobular cancer with 11/17 lymph nodes affected and two tumours, a 5cm one in the breast and another (can't recall the size) under the arm. I'm ER/PR + (8/8) and HER -

My oncologist did actually say to me that there was a strong likelyhood of progression to Stage 4 but that the aim was to keep it at bay for as long as possible. My breast surgeon also told me that he expected me to be alive ten years after my mastectomy (only bit of good news is that the tumour is a slow growing one) but that I may have stage 4 by then. But both told me that all the survival statistics are out of date and based on women treated ten ears previously and medicines and treatments have advanced. Both told me not to put off doing anything I wanted to do and enjoy my life. I'm glad they were honest and open with me. My daughter was 10 when I was diagnosed and so I didn't just have myself and my husband to consider. 

Re monitoring. I initially had an ultrasoiund and two biopsy's on the lumps - breast tumour looked 2cm on the ultrasound but was found to be 5cm later on. I then had a CT, bone scan and another kind of scan I've forgotten what it was called to see if the cancer had already spread. I had that in May 2015 before my surgery in June. Luckily all was fine. I then had a mastectomy and lymph node clearance and then chemo for 6 months and then radio for 6 wks. I finished radio in April 2016 and then had a full body PET/CT scan in Dec 2016 which was fine. My next full body scan is booked in for early Jan 2018 which is followed by an appointment with my onc to get the results. If all is still clear I may not have another scan but leave thnings and only go back if I have aches/pains etc that need investigation. I'm on Letrozole which luckily only gives me minimal side effects. 

At frst I was convinced I was going to die before my daughter turned 12, but it's hard to keep up a high level of worrying! After a while you just get on with life. I do feel that I probably have limited time and that I am damn well going to make the most of it. I'm trying to get all the things done in the house that I've put off for years. I took my daughter to New York for half term - as once you get secondaries you can't get travel insurance to go to the USA and my daughter really wanted to go to NYC. I talked to my breast surgeon and he said just do it. Do it now. So that's what Im trying to do whilst still hoping that I'm on the better side of the stats that say that I have roughly a 55% chance of still being alive 5 years later. I'm seeing all the friends I really like and the family members I love. I'm not bothering with people who don't really care about me or whom I don't always get along with as life really is too short. I'm trying out new restaurants and getting out and about more when I can. 

Mostly I'm ok with managing the anxiety, I went on a BCC Moving Forward course which was really fantastic. Loads of great info and help but the bst bit was meeting other people like myself. I really recommend it. I'm starting to feel anxious now as I know it's only 8 wks until my PET scan. I'm really dreading having the scan and then having to go to the onc to get the results. I think so stressful!

But none of us really know what will happen. But if you have a Stage 3 diagnosis you can't help being very aware that your chances of a recurrence are possibly higher than many other women with a lower stage cancer. But none of us know for sure!

Baz xxx

[Ms Merton]

Go for it Angela!!! Xxx

[feelthefear]

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

[Ms Merton]

Hello Mary and Angela - it is good to know you ladies are feeling so positive about the future.  Of course, different specialists will have a different view, including on what and how much they should tell patients. It is interesting that they don't seem keen to volunteer to us that we are stage 3 - like Mary I know because I asked.  Maybe they are reluctant to scare people but I feel knowledge is power.  I won't share with you some of the statistics my consultant gave me because that would be unfair if you have chosen not to discuss this with your consultant. The odds are still very much on our side, but the risk is real.  I am not fretting about it but on the other hand it is an impetus to seize the day and get the most out of your life because you are aware it may be shorter than you'd hope. To re-emphasise, you have to understand my consultant was talking about the importance of hormone therapy (for at least 10 years) in preventing reoccurrence and/or spread for ladies with lymph node involvement because of the way microscopic cancer cells lurk in our bodies. Moijan has written eloquently on this topic elsewhere on the forum.  Mary - hope you find a medication you can live with. Counselling has helped me enormously so I do recommend it. Let us hope we are all lucky and that they continue to find new and better treatments. Xx

[maryminder]

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  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

[feelthefear]

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

[riversidedawn]

September 2014!!

[riversidedawn]

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

[Ms Merton]

Whitelily - Exactly!!  I could not agree more. I definitely do not blame myself, I just look at what things in my life are possible risk factors beyond random bad luck, which I agree is the leading cause! It's all about balance as you say and finding what works for you. 

Thank you also Ann for your kind thoughts and encouragement.  Much appreciated. Xxx

[whitelily]

None of us are to blame for what has happened to us and being female is the biggest risk factor. No one knows what causes it exactly it is just best to do your own research and do what works for you. I just try to be mindful with what I eat most of the time but we still have to live and enjoy ourselves otherwise what is the point. It is about balance and doing what is right for you x

[ann-m]

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

[Ms Merton]

Thank you Bethy and Whitelily - your stories inspire me.  You are amazing ladies. It is great to hear from ladies who have had a similar diagnosis and who are still squeezing everything out of life years later. I have heard about Jane Plant's theories.  I am a vegetarian but I do eat dairy. If I cut dairy out completely I would be a vegan which is absolutely fine by me on one level (I think it's morally right) but is difficult practically if you need to eat out etc.. Currently I am trying to eat more organic food where possible and doing more exercise.  My own theory is that my cancer is related to having taken the contraceptive pill since age 16 and not having children.  But obviously I cannot prove that!  But I am feeling very good at the moment and really uplifted by your wonderful example and kind words. Love, Susan xx  

[whitelily]

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

[Bethy]

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

[Ms Merton]

Hello - lovely to hear you are getting on with and enjoying your life 13 years later. These are the stories we want to hear!!  I am generally very positive about this.  However, I am aware that I am in a high risk category. I need to get on and do stuff now while I am young and feeling very fit still just in case I am unlucky later. In some ways it gives you the impetus to cut out the **** from your life and focus on the stuff that makes you happy.  Xxx

[frazzledfifty]

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  

[lottie63]

Hi Mrs Merton

                         I know its not easy when your giving the dreaded news but remember statistics are just that, each person responds differently to each treatment and treatment is improving all the time 🙂 I was HR & ER neg with PR just 3/8 very low so I was given tamoxifen for 5 years on the grounds that I could come off if I suffered with side effects as they felt the benefits were very low anyway, I decided to stop after 3 years as side effects were getting worse by the week !! that was a hard decision and it worries me still 😞 but my oncologist was happy for me too stop so that put me at ease a little, all we can do is hope that it never rears its head again and feed off of the positivity of your oncologist and others around you I try to avoid negative people as much as possible now lol

Good luck with all you do

L xx

[Ms Merton]

Thanks for your kind words Lottie.  Sorry about your lymphoedema - I am petrified of developing it!  But you are obviously managing to get on and enjoy your life 5 years later which is really good to hear.  It was the surgeon who was so downbeat.  I think you are technically still Stage 2(b) with 3 nodes involved.  Because I have 4/5 nodes involved I am now classed as Stage 3(a).  The surgeon said that having 4 nodes plus was considered to be a tipping point that materially reduced your chances, which is why it pushes you into the next classification.  He looked quite freaked out by it. It is also the fact that my lymph node tumours seemingly did not respond at all to 5 months of chemo!!  My oncologist, on the other hand, gave the appearance at least of being much more relaxed about it. I understand that statistically my chance of being alive in 10 years is about 75% but my chance of being alive and disease-free is much lower.  I find that knowlege quite hard at 47.  So, time to start on the wish list!  Susan xx

[lottie63]

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

[Ms Merton]

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