Hello I just want to give you some uplift.I have different kind of cancer.Breast cancer spread to my lungs,liver and kidney.I have started chemo in August 2019 and the April scan showed no liver and kidney tumors anymore.I still have some in my lungs but they are keep shrinking biggest now only 20 mm.I am 42 and I am planning to be here few more years.I am hoping retirement.

And there are people here who are living with stage 4 cancer many years.

Take care

Denise

Hello Si77,

               l am sorry to hear of your troubles,and the hard road ahead of you.To learn you have cancer is enough for anyone,but the sledgehammer blow of hearing of its spread knocks you so bloody hard. l remember going into shutdown crisis mode when l got my news ,the world was carrying on around me,but no way was l on it.

                                 My unwelcome squatter in my bowel decided to go visiting my liver and set up camp there whilst l was having chemo and radiotherapy thus avoiding any forced eviction.The landlord (me) only got to find this out just before going into surgery to remove the bowel tumour.So a hasty switch saw 60% of my liver removed along with my gallbladder,followed by surgery to the bowel six weeks later and a new addition in the form of a stoma.

                            Seven yearsl am living the life and my bowel has decided to rejoin decent society.Its been a long journey during which time l have achieved so much in my life, l never stopped working and built a new house during this time,When l could not walk ,l crawled,when l could not carry,l dragged, when l could not lift,l used a lever or a pulley rope.The only thing l could not do,was to accept l could not, do it,and found a way.

                               l must admit that fairly early on l accepted the fact that it had got me. but l was damned if if l was going to roll over and give it an easy win,it was going to have to work like never before in order to win.From that moment on l never looked back,l did not want to waste time on that,only forward,l was at peace mentally ,which was as well since the physical hit on my body was plenty enough to cope with.Having worked a career with livestock rearing and seeing the damage that stress causes to be unleashed,l knew that calm demeanour was my very best new friend and one that was in my gift to bring to the party that nobody really wants to attend.

                                                                                 l suspect our respective mountains differ,but they each have to be scaled on foot and by hard slog,l am not here to tell you it will be easy, just to tell you there are those who do find the way to the summit,that it can be possible,and that we look forward to seeing others join us. Just keep putting one foot in front of the other and keep moving ahead,

                                                                                                                                                     David

                 l

Hello Denise, sorry if I’m hijacking someone else’s thread but I’m feeling desperate, I started my own but only had one reply so far. I was diagnosed with aggressive metastatic breast cancer at least a month ago and still have no date to begin treatment. I have signed up to do a trial but everything is moving so slowly. I ended up having to call an ambulance Friday after vomiting vast amounts of clear liquid and have spent the weekend having my stomach drained, not pleasant. I’m thinking of going with standard treatment now if it means starting chemo sooner, but I’m not sure it does, was it standard treatment you had as it sounds preferable to what I’m getting, which is no treatment. I knew every area where my cancer had spread to, I can feel it, the doctors were very sceptical to begin with and told me I was fine but have since confirmed everything I said. Today I’ve woken up in my hospital bed still feeling nauseous, the tube to drain my stomach has been removed and I believe I’ll be discharged today, I’ve asked for my usual medication for acid reflux and been told there’s no record on my chart, I moved wards at midnight, so I’ve used my own medication which I bought in with me. Unfortunately I can feel a new area with the same niggling stingy like pain and I suspect a tumour in my lower tummy, I have sensed it for a few days and mentioned it whilst being examined but not received any real response. Not sure what to do for the best now, I was told 5-6 months without treatment and that was a month ago when I felt in good health, now I’m getting more and more symptoms and presume I have 4-5 months left without treatment

Hello River,something similar happened to me.Last year I went with cough to my GP and then I had xrays and biopsy which confirmed Breast cancer recurrence in lungs.Then i had CT scan which was saying is in my liver and kidneys too.I was in a really bad shape with my lungs couldnt breath,eat because I was spitting out mucus after each meal and it was hurting,couldnt even walk.In May 2019 i was officially diagnosed and they offered me trial too but they needed do more tests.first I said yes but after 1 month waiting I got worse I was so p...off from waiting for more tests I have refused the trial in the end and requested the start of standard treatment.Anyway that trial was only 1 person doing they didnt have even results from it if its working or not.So I am now only on chemotherapy since August 2019.I find it disquisting to keep the patients waiting like this.

Denise.

Hi Si 

Sorry you find yourself here. 

If you hang around the site long enough, you will be able to see MANY people who are living very well with stage 4 cancer. I can see two have already commented! 
 

Personally, I know of two ladies who were diagnosed stage 4, years ago. (I mean....one must go back to 2010!) One is a distant colleague - she still attends work full time, enjoys a morning run (runs to work!) and a fab life with her family (she's the lady who was diagnosed 2010). The other lady is now retired and is very content. 

Cancer treatments today can keep it at bay for years (before lockdown, I had a chat with a Macmillan adviser who confirmed this too) xxx 

Thank you so much for replying Denise, feeling very frustrated here in hospital. Unbelievably they don’t believe the fluid buildup in my stomach is linked to the cancer, I’ve just googled it and I’m more convinced than ever that it is. I’m going to get onto my oncologist tomorrow and request standard treatment as soon as possible and hopefully I’ll still be here a year on, doubting that very much at the moment. 

Just threatened to discharge myself as all I’ve had in 3 days now is a cup of bovril, a jelly and water, would you believe in this day and age they don’t cater for lactose intolerance.

Hi River I am so sorry to hear about the hospital and its a shame because the should be prepared  for patients with different dietary requirements.Can you complain to the doctors or who in charge?

I dont know about the fluid build up they should do a CT scan while you are there and they would know whats causing it.If you didnt have one be firm and request one.

And tomorrow be firm with your oncologist too sometimes you have to be pushy its your life.

Denise

Hello River, 

You seem very in tune with your body. Sorry for jumping someone else's thread but I am Stage 4 breast cancer to bones and liver. I am six weeks into an eighteen week course of Paxlitaxel. I also get Pertuzemab and Trastuzumab for my triple positive and Denosumab for my bones. What is your cancer? ER, PR etc? TNBC? 

Denise is right. Insist on a scan. A CT scan is the quickest. Sounds like it might be your liver building up fluid but I don't know as I'm not your doctor.. The liver might also account for the vomiting? (but again, talk to your doctors). Is there a consultant you can speak to about the trial verses immediate standard treatment?  Where exactly has the breast cancer officially spread to?

Ceyenne

So so sorry Si77 I didn’t mean to hijack your thread, hope you can forgive me

Hi Ceyenne,

 I have official diagnosis of metastatic breast cancer to stomach lining, lymph glands & bones. The cancer is in tubes/veins leading to kidneys& liver I think. It is HER2 negative think I’ve got all that right. I’ve started Denosumab injections & calcium tablets. The trial I’ve signed up to includes Paxelitaxel & 2 other complicated names which I can’t recall, one begins Aziz? 

The doctors came back to see and relented so I have had a tuna salad, here’s hoping I don’t regret it and prove them right.Anyway I feel much better for it at the moment, they’ve also put Fresubin Jucy on prescription for me. I’ve lost 9 kg in a matter of weeks fortunately I had got some weight to spare but I don’t want to let myself get to weak & thin, I was feeling very shaky & lightheaded earlier.

I had xrays done Friday which clearly showed my stomach full of fluid and not moving into bowel or bladder. Unfortunately I have been getting a niggling stingy type pain lower tummy, which has now developed into a lump, this is how it was in the breast for me, then it grew rapidly, so I’m assuming this may have some connection with my current problem. 

In  the meantime I have phoned the consultant & my named nurses & left messages explaining situation & which Ward I am on & saying I want to speak to them urgently, hopefully as I’ve stayed I’ll get to see them tomorrow.

Good luck with your treatment, hope it’s goes well for you.

Hello River, 

I've sent you a friend request so you can keep on touch if you would like.

Ceyenne