Hello ladies (and gents if they members too). So yesterday I was called into hospital to be told the full extent of my situation. From my first initial mamagramme, ultrasound and biopsy to left breast on 18th April, to diagnosis of ER+,PR+,HER2- stage 2 grade 3 invasive metastatic 10th May I've had CT scan, MRI's and biopsies then to lymph nodes and liver, yesterday I have finally been told the full extent of what I'm next going to be dealing with. The cancer has travelled through my lymps and is in my liver so I will be having chemo as soon as they can make it happen, hopefully within the next month if all previous situations are anything to go by. Haven't met an oncologist yet but when I do i will know more. The concern I had was the word "palitive" was used to describe the treatment I will start with. I was asked if I understood what that was and of coarse I told them what I believe it means they can't cure me but make things easier for me. "But hang on minute, I ain't yet unwell, you told me I had breast cancer a few months back, you ain't telling me it's in my pancreas already are you".
Some of you might be thinking I haven't been reading the right material or I'm jumping to conclusions but I was asked what I understood about my diagnosis and so I told them. Paliative to me wasn't what I needed to hear.
So the cancer in my liver hasn't yet been said if its the same as breast of ER/PR+ HER2- yet but if they find it's changed to triple positive then surgery will happen to remove the tumour in my liver first but I don't know what I will be told this.
Basically the chemo is most important and I know how important it is to get the right recipe from the start.
My journey till now has been a slow process and all through it I've been in fear that all this waiting is gonna give straggling cancer cells the chance to latch on to something else and be detected further down the line. Well now it turns out that's more likely after November scan (that's 6 months since 1st CT scan picked up liver and Overy irregularities and it takes 180days before electronic machinery picks things up) if I get one then. I want to be able to be cured but it seems the word Paliative means I'm not gonna be that lucky.
I'd like to hear from anyone on here that has already experienced and fought and have gone 5 years clear of any other cancer and share how you felt during your battle. I'm not riding the wave now. I starting to walk into the water.
Hello Les1963. First, I guess 1963 is your year of birth, so I know from that you are much younger than me which makes your diagnosis far worse as I am 78. However it still comes as terrific shock to be told you are incurable and are on palliative care. I don’t think they should use that term because it really means end of life care. It what they do to keep people comfortable and pain free for the weeks before they die! That is not where you are! I was told my liver metastases are inoperable but that my condition is manageable. However they also said that if I chose not to have chemo I would only have 6-8 months to live!so I started chemo straight away which was seven months ago. It has been tough and I had to have a break for the month of June as I was not coping with it. But anyway I am still here! During June I felt well and did lots of nice things. I find it hard to believe I am so ill because I felt so well once off the chemo! It’s only that that makes me feel ill. I have no symptoms of the tumours in my liver! I do have one other one in my abdominal wall which I can feel and which has started to be painful. I did have breast cancer last year but these metastases are from a sarcoma which I had removed from my kidney three years ago. The breast cancer was removed with a mastectomy and treated with radiotherapy and is still clear. I am not five years down the line, and it seems I won’t live that long. They are giving me one more year and that’s if I can tolerate the chemo for another few months. It is very aggressive so I may have to give up on it then. Anyway, keep fighting! You have to be very proactive with the NHS. Don’t let them leave you waiting, guessing, wondering. Find out the names of your consultant’s secretaries, and their phone numbers, and keep phoning them up asking for appointments and results. You have a lot to fight for at your age. Good luck!
Thanks for thatthat. And there I was cool as a cucumber when I was sitting in front of the consoltant and turned my thumbs up towards my MacMillan nurse.
I have said since 10th May I wanted chemo from the start coz that's all I knew was gonna kill all the potential cancerous cells as I guessed their all over from passing through my lymps. And they could cut me boob off. Bit then that was before my understandings of all treatments.
What you've now made me think of is I ain't likely to be able to see 65yrs........
I have lived a very healthy life in order to not need others to look after me. Hospitals haven't had any part of my life since giving birth to my son, and he's 40 next month. And now I'm quite frequent to the place and soon dependant on people there keeping me well...... Or should I be saying alive!
I wanted others to give me their own experiences, not what feels like a kick in the gut.!!
What a great way to start my day. Thanks anyway.
I am so so sorry to have caused you pain and distress! That was not my intention at all. Your case is completely different to mine and can’t be compared. Sarcomas are rare and aggressive cancers and so have to be treated at a speciality centre. And I have twenty tumours spread over both lobes of my liver, hence it being inoperable. This is why my prognosis is so bad. Yours have been spread by your lymph nodes. Mine weent. Yours originated in your breast. Mine didn’t. I wanted to make you feel how much better off you are than me although I don’t suppose you feel you are. But you are. And you have younger years on your side. And you are a fighter. I can tell.
Each case is unique and you can only go by what your oncologist and special nurse tell you. I thought a bit of advice from an old hand would come in useful. I hope you get more replies and of the sort you want and I can only deeply apologise again for upsetting you. And I wish you well for your journey - which will be much longer than mine.
Hi I just wanted to add my two cents in the hope of being of some help. I had bowel cancer stage 3 in 2019. It spread to my liver. I had a resection in 2022 and it has spread further into my liver within 6 months. Palliative care is not end of life care. I’m so sorry if that’s what you’ve been lead to believe. It’s about treating the cancer and giving you a good quality of life. I had chemo infusions alongside chemo tablets, but it was stopped due to extreme side effects. I’m about to restart the tablets on their own, my choice. The alternative chemo I was offered gave little chance of success, so I decided not to go through the stress of it. We’re all different and react differently to the various chemo on offer. Do speak to your nurses and phone your consultants secretary. I have found them to be my biggest supporters and they always push to get appointments through. I’ll be keeping my fingers crossed for you going forward. Take care of yourself. Stay as positive as possible and keep healthy in body and mind. It really does make a difference.
Ruthmary, I think what it was was I haven't still grasped what my future is gonna look like. The fact that I'm still stunned 3 months on from where this all started, to read your journey made me think is it worth it...... Reality for me won't be known. I haven't seen the oncologist yet..... As always still waiting.
Trusting someone is very difficult for me till I get to know them. Just to sit across a table and share a few words doesn't account for knowing ME.... How I operate, my strengths, my determination, my insecuries all things that sit in my makeup. OK they might know their stuff and I have to trust the recipe they make for me is a positive one first time as my mental strength is my only weekness. Hospitals are a massive trigger. So that's what's gonna be the hardest part of my forthcoming journey.
I don't want you to feel bad coz you think you upset me.... I read your comments, reacted but unfortunately I'm one of them people that says it as it it. And basically it transfered back to you.
Im sort of fine now, my doctor is going to be chatting to me tomorrow about it all coz I got to get my head around the truth and not the frills and spills......
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