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Newly diagnosed with liver mets and suspected spine mets - hope required!

14 REPLIES 14
Member

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

Thankyou for replying. Just got back from hospital got to have a liver biopsy next Tuesday to find out if it’s same hormone receptor thing. I’ve just took my first letrozole, he said to start taking palbociclib 2 days after liver biopsy. 

The ones in my lungs are less than 1cm. He’s given me some oromorphe for pain in my hip. It’s just hard to get my head round but I will. That’s good you’ve been on it that long I’m hoping I could be the same 

 

Louise xxxx

Community Champion

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

HiLou, I’ve got four lung mets, two in each. I’ve been on Palbociclib and Letrozole for over two years with minimum side effects. My scans show that they are stable. My lovely Onco assures me that he has a black bag full of ‘tricks’ to keep me going! I feel very lucky to be living at this time as the research and the drugs means that cancer is with a small c, not a C. A few more years and Cancer Research says this disease will be like any other nasty chronic disease such as TB. The initial shock will wear off, and once you have started treatment I am sure you will feel better. The thing to remember, Lou, is that we are living with, not dying from, this disease. Big hugs. 💐

Member

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

hi I am a lot older than you but just wanted to let you know I have been on palbociclib for a year side effects minimal for me and 3 monthly scan show things stable I have secondaries in lung spine and pelvis 4 of 6 tumours smaller after first scan. There are lots of treatments and people living 15years plus with secondaries I am still working 19 hours and want to be around for my daughter who is a single mum to a ten year old. I know its all a bit frightenening but support on here is good. Sending you love and strength Liz xx

Member

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

Hi Rachel 

 

thanks for replying. Think my cancer is hormone positive but her -. 

Well I think it is.  Need to get my blood done on Thursday then might be starting palbociclib, I’ve had an injection in my tummy yesterday, she said they put on implant in. 

I just can’t get my head round it. Yeah I’ve been offered counciling. I have good friends around me and family xxx

 

 

Member

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

Hi Lou

I’m so sorry to hear about your diagnosis - I know it’s a really scary and uncertain time.

I’ve found this forum so very helpful - reading the replies to this post and countless others I have come to realise that there are many many women here who are managing this disease long-term with targeted treatments. 

Are you able to share a little more about your BC or treatment plan? Mine is HER2 + so I’ve found it helpful to read about and speak with others who are having similar treatment to me.

Are you able to access any counselling or therapy to support you with the emotional challenges this diagnosis brings? I’m going to be starting sessions with an oncology psychologist shortly and am really looking forward to these as I’ve heard they can really change your perspective and thought processes.

These early days are really tough, but I’ve had a lot of reassurance from people here and elsewhere, that things do get better once the initial shock wears off. We still have lives to look forward to! 

Huge hugs to you - and here’s to brighter days ahead for all of us 

Rachel x

Member

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

Hi everyone 

was diagnosed yesterday with liver lung and a bone met. I’m 38 single mum with 3 small children. I’m so scared all I do is cry. I just don’t know how I’m gonna cope 😢

Member

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

Hi all

Thank you so much for your replies - it really does mean the world to hear from you and to feel that I am not alone.

 

Jenni - it sounds like we are at a very similar stage in our journeys - I had my MRI to examine the suspicious spots on my spine yesterday and will get the results when I next see my Onc in a few weeks. 

 

I’m on day four of cycle one of chemo - I feel lucky in that the side effects have not hit me too hard so far (a bit tired and achy). 

 

I’m surprising myself with my ability to remain positive at least some of the time - and I’m really hoping that I’ll be able to overcome the lingering feeling of dread and sadness so that I can continue to enjoy my life throughout treatment.

 

I’m going to attend the BCC secondary support group (Brighton) on Wednesday - so hoping to meet some others who can relate.

 

Love to all

 

Rachel x

Community Champion

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

Grammy, I don't know how they are doing your lung biopsy, but for mine they went through my back. They gave me some type of anesthesia that didn't knock me out but I felt nothing. Good luck! FF

Member

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

Thank you funnyface. New here and scrolled thru to see if any similar situations. I was staged at 2 with IDC to lymph nodes in April but CT/MRI/Bone Scan results I got today showed many nodules throughout both lungs and suspicious sites in my humourus(mid arm) and near my left hip. They're ordering a PET scan to get a better look and probable biopsy of my lung nodules to confirm mets or if it's  a new cancer. Your post gave me hope.

Member

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

Hi all

 

i have had some problems logging in this week but just wanted to add that I had my scan results on Tuesday and all stable. it is always scary when first diagnosed I was straight in at stage 4 over 2years ago but there are lots of treatments for us all. Don’t let it get you down as we are all here to share our stories and some ladies have been going for over 10 years. Wendyx

Member

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

Hi, I have one liver met, not sure of bones yet scan next week. Had one out of five Chemo with herceptin and perfecta. It’s been tough the first week but picking up now. I too will continue on h & p indefinitely like yourself and your post was great to read so big thanks.  Jenni6

Member

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

Hi Rachel, just read your post, I am so sorry you are going through this, I remember so well what a stressful time it is waiting for test and scan results. I was diagnosed straight away with secondary breast cancer 5 years ago this month. Mine is also Her2+ It had spread to my liver, spine, ribs and pelvis. I have never had any surgery, after the initial 6 weeks chemotherapy I have had 3 weekly infusions of herceptin and perjecta ever since (just had my 86th) i have 6 monthly CT scans, latest showed no sign of the cancer. I feel very well, have virtually no side effects from the treatment, work and lead life as normal. I hope this helps you feel more positive. I am much older than you and my children are grown up but I understand it must be so much harder if you have young children. You can live many years with the drugs available at the present time and new treatments are being developed all the time. I hope this goes a little way in reassuring you about the future. All the best for the road ahead xx

Community Champion

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

Rachel, I'm not am Apples for Apples comparison. I was 41 with primary and 51 with mets to lungs and lymph nodes in chest. I am the opposite of you. Hormone positive and HER 2 -. I have had my mets for 13 1/2 years.  Hang in there! FF

Member

Re: Newly diagnosed with liver mets and suspected spine mets - hope required!

I couldn't read your post and not say anything. All the testing and scans are the scary part. I would jump out of my skin when my mobile rang waiting for calls coming from different departments to set up different scans so my heart goes out to you. You are having treatment and sounds like they have a plan going forward in terms of more surgery. There are a lot of new drugs that can be used. I'm sure someone with much more experience than me will be along soon but couldn't read and not send some words of comfort and massive hug. 

 

Mangomum xx

Member

Newly diagnosed with liver mets and suspected spine mets - hope required!

Hi all 

I was diagnosed with breast cancer (grade 3 invasive ductal carcinoma; Hormone negative / HER2 positive) just before Easter and have been having a number of tests since then to investigate a suspicious lump on my liver. I’d been reading a lot of posts on here as I was afraid it would be a secondary cancer - this has today been confirmed.

 

The cancer has spread to multiple lymph nodes in my under arm, plus one between my heart / liver. I have one larger met on my liver plus around 5 smaller spots, my PET CT has also shown spots in my mid spine - these are not confirmed as cancerous, I’m having an MRI to investigate further on Friday - but with everything else I feel the likelihood is that they are further mets.

 

I’ve competed my first cycle of chemo and antibodies this week - I’m having Docetaxel, Carboplatin, Herceptin, and Perjeta. Feeling fine so far - side effects yet to take effect.

Plan is a total of 6 cycles over 18 weeks - I’ll then be assessed for further treatment - breast and even liver surgery has not been ruled out, and radiotherapy maybe an option. I’ll remain on the Herceptin and Perjeta longer term.

 

On a personal level - I’m swinging between doing ok and falling apart. I’m a 33 year old single parent to a wonderful 9 year old son, and I’m frightened at what my future may bring.

The posts I’ve read on here have already filled me with such hope, inspiration, and positivity but I’m in desperate need of some success stories and words of wisdom. 

 

Thank you for reading!

Rachel x