Secondary breast cancer

[Anne30]

So glad that you are feeling better. I have been trying to post but it hasn’t worked! Been thinking of you 

[Sarahlew]

Ps a had a lot of discomfort after having the drain put in as they had a bit of struggle so keep on top of analgesia oromorph when needed etc xx

[Sarahlew]

Aw that's wonderful news so glad you have finally had it done and already feeling some relief😊. So chuffed you are now able to go home and learn to adjust to things.  See the chat about living with a chest drain for some more info.

Take care x

[Jayrand56]

A quick update; had my permanent drain fitted today. 

Feeling better and breathing easier already. Home this weekend to start my new chemo, I’ve got my positivity hat back on!

[Jayrand56]

Thank you so much Sarah. Feeling a bit better today and hoping that there will be enough fluid built up tomorrow to site the drain.

All this time in hospital doesn’t help, and I had a negative day yesterday. The breathless feeling is awful and frightening when I exert myself even slightly.

[Sarahlew]

Hi jayrand 

I'm so sorry you are still waiting for your chest drain to be sited - I can fully understand your impatience you must be feeling frustrated. 

I just wanted to say hang in there - before I had my chest drain fitted I was very unwell and thought it was the start of my decline but things did improve a lot once I had it that was nearly 2 years ago. 

I hope things get sorted for you soon so that you can get home. 

Hugs Sarah x

[Jayrand56]

Having a difficult day today. I’ve been on the oncology ward for 4 weeks with s weekend home in the middle- despite pleurodesis the effusion came back and I had to return to be drained again. Now transferred to the general hospital respiratory ward for a permanent drain fitting on the right side. I was supposed to have it done on Monday, but not enough fluid built up yet so might be Friday now..

Impatient to get home and start Cape pills as the Paclitaxel didn’t work. I’m so breathless too.

Feeling stranded and harbouring hopeless thoughts today. Anyone got any positivity to share please?

[Anniej]

Hi Clarence, sorry you are having such a rough time. We've all been there, but Funnyface is right...all the tears in the world won't undo this diagnosis. If they did then we'd all be clear! Ive had continuous treatment for two years following my primary diagnosis, then my secondary. The mets are in my lungs, and I've only just been categorised as stable. My Onco thinks that's great, and so so I.  I've had a lot of help from professionals - sleep therapist, mindfulness, TaiChi , and a wonderful psychologist . I've got a better insight as to how my mind works, and a few techniques for staying calm( er) and sleeping better . Some days the only reason I get out of bed is for my family....but that's worth it, isn't it? On those days I kick my a**e into gear, get up and have a very busy day. I'm living with, not dying from, cancer, and so are you, my friend. 💐

[funnyface]

Clarence, Mine was found with a CT. They never mention it now. I asked at my last appointment in Nov and she said that the nodes look fine now.I go again on the 21st of Feb and have a lot of questions. My oncologist left and I'm to have a new one. FF

[Clarence]

I’ve just been told I have a minimal increase in a node in my mediaistrum (hadn’t even heard of it) I’ve to go for another scan in 4 months. Oncologist said she wasn’t worried. I’m worried sick. How was yours found and what treatment are you getting?

[funnyface]

Clarence, Stable is fantastic! I was stable on vinorelbine for 5 years. I of course longer for it to say improvement, that didn't happen! I've been living with metaststic breast cancer for 12 years. I've had very few times that things have improved. Almost always stable. FF

[riversidedawn]

Hi ladies, I find keeping busy helps. I had my fair share of tears at the beginning and on New Year's Eve when everyone was hugging and shouting happy new year!

I work 4 days a week and have two children aged 12 and 15 who keep me busy - together with two dogs, two cats, three Guinea pigs and a share in a pony!! Somehow I also find time to go to yoga three or so times a week.

Hope you find a way to move forward. As someone said in a post recently this forum is called living with secondary cancer so that's just what we need to do!

[tatyana]

Hi Clarence, sorry but I've not made much progress with the bursting into tears! I tell myself it's early days yet, I still have to process a lot of stuff. My current strategy is, if I'm with a friend or stranger or casual acquaintance and the tears start to come, I just screw up my face, try to smile, and tell them to stop being nice to me! Then if I can speak, I tell them that I'm not necessarily crying because I'm depressed, it's just that all the emotions are very close to the surface and that's how they come out, even if they are good emotions. It's true.
In your case, if you were already suffering from depression, it must be even harder. All I can do is send hugs and remind you that the people on here are all here to support each other if we can. I hope you find a way that works for you.

[Clarence]

If you find out how to stop bursting into tears let me know. They say keep busy I can’t do anything. Most ladies seem to be coping and just enjoying life. Maybe it will come

[Clarence]

Sorry just came across your reply. Do you feel any better now. I still feel rubbish as my next scan when I got it didn’t show any change. Whether that was good or bad who knows. My Onc said she was very pleased with the scan for why she didn’t say x

[Clarence]

I’ve just come across your answer. Thanks for replying. Got my scans eventually and didn’t get much info except Onc was pleased with them as they were stable so still don’t know if Lung nodules are cancerous and adrenal gland seems ok. Still to see surgeon re lump on chest wall. It has gone down so don’t know if will have to get op. In fact don’t know where I am at plus I’m very unhappy. All you ladies seem to be able to get on with your lives. I can’t because I was diagnosed with major depression prior to my diagnosis. Any hints for coping?

[Lynnq]

Hi Tatyana. I can empathise with you. A few weeks After my diagnosis I was putting away our Christmas decorations and I wondered if I would ever see them again.

I have put them away another four times since then !!!

[funnyface]

Hi Tatyana, My cancer is in the mediastinal nodes and lungs. I'm sorry you have had this diagnosis. It's not easy to hear! We understand how you feel. We just hate knowing that another person is facing this heartbreak and worry. My best advice is to have some tears, get angry and stomp your feet. Then look around you, dig in your heels and get moving with a smile. Too many precious minutes, hours, days are lost on the worry and tears. Gosh, if we could add them up it would probably be a life time. FF... 

[tatyana]

Thanks for the encouragement, ladies! I got my secondary badge yesterday with Mets in mediastinal nodes, about to start capecitabine, currently in shock. I don't need to tell you all the things going round in my mind, just one quick example: the snowdrops are lovely now, will I see them next year? And how dol I stop bursting into tears every five minutes?!

[riversidedawn]

Great post FF. I'm going to shake myself I and get back out there ..... as long as I'm not too far away from a loo/bathroom!!!

[funnyface]

Hello ladies, Doing some catching up here. I'm jumping in to give you lung mets ladies some hope. My original bc diagnosis was Oct 1995.My mets to the lungs was Nov 2005! That is 12 years. I can't promise you the same, but I hope it can give you something to hope for!! I'm doing pretty well. I'm 63 and work PT. I have worked hard at exercising and losing weight. In the last 17 months I have lost 110 lbs. and started kayaking on a nearby lake. I recently broke 2 vertebraes, and had surgery to glue them together. All of these drugs have caused osteoporosis. I'm more worried about that than my cancer. I've seen my children graduate college, one marriage and now my first grand baby. My best advice is get up, wipe off the tears, smile and keep living!! Believe me, I cried plenty before I got my act together! It won't change the situation. It is a waste of precious time. I wasted enough time crying for all of us! FF

[Applecrumble]

Hi Camilla9 stay positive.
I was diagnosed 2 years ago in February with breast cancer which had gone to my lymph nodes ,then a few months later it was confirmed that it also had also spread to my lungs. The chemotherapy however totally got rid of them and I am still NED. So I don't think about it most of the time, just when I'm going back to hospital for tests or at milestones. So lots of love to you. It is horrible not knowing what is going to happen but you just kind of learn to live with it xxx

[Annigogo]

Hi there everyone
Just diagnosed today with secondary lung cancer - feeling **bleep** as had been clear for 5 years
Was blaming myself as I never felt a lump on self examination, but the Consultant said she couldn’t feel it either and it was detected on the CT scan
Very helpful to see all your comments as I thought I only had weeks to live xx

[Camilla9]

Hi there, I have had one FEC T treatment so far for a grade 3 HER 2 tumour in the breast which has spread to the lymph nodes.

A CAT scan showed there was a nodule in the lungs which was 'active.' 3 weeks later, a PET scan confirmed this and now I have to have another CAT scan to compare with the first and see the potential growth of what's in the lung.

Initially, I wasn't too upset because I assumed the chemo would zap that too, then I looked it up, to discover secondary breast cancer in the lungs is incurable. Such a shock. I had been expecting a pretty grim year but eventually I would come out the other side.

This is now a whole different picture.

Do I put myself through all the treatment and poss 2 mastectomies, still to be left with something incurable...?

It is hard to stay positive.

[happygolucky280]

Good morning Carolyn
Thank you for your reply. Things also feel worse in the middle of the night don’t they. I managed to get back to sleep without doing any internet shopping- am dangerous enough on amazon lol.
I feel calmer again today and as I have been since my diagnosis I just take things a day at a time.
I have been quite public about my journey and treatment and will have a lot of people asking today how my appointment went yesterday. To me the confirmation of the liver met was totally overshadowing the positive news if the chemo working. But today as much as I wish the liver spot wasn’t there I can take comfort in the fact it too is responding not as much as the Breast tumour but it’s still shrinking and I am only half way through my chemo.
I don’t feel ready to tell people about my liver met yet but I am also not ready for them to get all excited about the chemo working and already starting to celebrate a result of what they imagine will be NED at the end of treatment when I know the situation has now changed for me and it’s not a cure we are going for but management of the disease.
I better go get my kids up for school.
Hope everyone finds something to smile about today.
X

[Carolyn52]

Dear happy go lucky

Looking at the time you posted you were obviously unable to sleep and are worrying about things ..
We are real people here and understand. .the last few nights I have been getting up at 1.30 am as I can't settle. .making porridge and Xmas pressy shopping online !! Welcome to your new life but once you settle down with just the herceptin ..you should feel better as on its own ..it's easier to tolerate than chemo ...

Hopefully you will get a lot of support here ..a log over lovely ladies that are kind and caring

Sending big hugs xxxx🌹🌹

[happygolucky280]

Hi
I was diagnosed for the first time in August of this year. There was a suspicious spot on my liver so I had a repeat mri half way through my chemo. I got my half way results yesterday from my onc. The chemotherapy is working a treat on my Breast tumours the pesky spot on my liver has also shrunk although only slightly. It was very small to start with.
My team are now treating it as a secondary.

I will continue with my chemotherapy and surgery as planned and the plan is to keep me on herceptin indefinitely and to scan my liver regularly.
I feel distraught at the thought of a secondary. My initial liver ultrasound at my staging scan in September was clear, I only had a ct scan as the liver scan showed up an unclear area in my abdomen- Which turned out to be a weird shaped kidney. So if I hadn’t if had a weird shaped kidney the liver spot would not have been found so early and who knows when it might have been found. I appear to b having a very good response to the chemo for the breast tumours and it’s likely I would have been considered NED at the end of my primary treatment without even knowing about my liver.
So I feel distraught that it’s there but blessed that it’s been found so so early.

I find out less than 12 hours ago though. I fell asleep fine but i have just woken up feeling complete panic.
Thanks for reading
X

[Juma]

Hi Clarence, I'm sorry you've found yourself here. I'm recently diagnosed too and felt overwhelmed with fear only a couple of weeks ago. Once I'd had my scan results I found more focus and have felt more myself since. I've found concentrating on the things that I can do helpful in coping. Looking after myself, eating well and exercise. Waiting for the scans is excruciating, I hope it won't be too long. J x

[LYNDYLOO]

Clarence
Welcome to the forum you have come to the right place.

Once you have the scan and you know what you are dealing with and a treatment plan in place I am sure you will feel alot better.

I felt like you when diagnosed with breast cancer and bone mets in 2009 but in time I have got used to the new norm.

Linda

[Carolyn52]

Clarence

Welcome to the forum where we are real people ..coping with secondary but its so hard but once u get the dx ..it's a case of focus on treatment ..there are lots of different threads here to read and get involved with too. .
Sending hugs xxx

[Clarence]

Going for scan to confirm nodules in lungs are cancer. Meanwhile I have been put on letrozole. Also adrenal gland was puffy. I’m finding it very hard to cope and am sure my Scan will show other mets. My imagination is going haywire. Any tips on coping