Liver mets diagnosis today, but no point doing surgery? help

[Cress]

Hello Sheila,

I'm in a v similar position (no surgery), as I went for screening on 11-2-15, then called for further investigation on 12-3-15 and had biopsy and armpit cells taken.  On 18-3-15, I was diagnosed with invasive lobular ER positive 6/8.  I was told that I would need CT, MRI and Bone Scan. Whilst awaiting the results, I went for my first oncology appt. and was told that I would receive EC chemotheraoy and Letrazole, as my kind of ILC is a rare and agressive form (Pleomorphic). I returned a week later on 15-4-15, to be informed that I had a few lesions on my liver (I think the biggest is 2cm). I was told that I would not be receiving chemotherapy but started on Letrozole the same day. On Wednesday, I will be having a Bone Density test. I have blood taken and after my last test, I was given tumor marker figures and no real indication of what they meant. I had my face all set for chemotherapy and almost feel cheated, as I wanted the opportunity to shrink the bastards fast and I understand that AIs like Letrozole work well but very slowly. I do feel better since I started 'taking the tablets' - the period when I was left waiting for treatment was the worst!  I detested the thought that nothing was happening and things must be getting worse! 

I know exactly how you feel, as I have a wonderful 15 yr old daughter just coming up to her GCSEs. She needs her Mum and I'm not intending on going anywhere soon!  Good luck with your treatment and let us know how you get on.  Best, Julia 

[sod6162]

Thanks Bernie, it's the posts on here that keep me going. So much relevant information......I hope your results were ok? Xx

[Bernie610]

Hi Sheila we spoke earlier this month on another post and you were really helpful when I was worried about the MRI. So annoyed for you that the results of your scans were not what anyone wants and sending you a big hug & support. I have read about some amazing journeys on here from people with similar circumstances & send you every best wish on the next stage of the journey xxx

[EJ81]

Also with regards to work you should be eligible for PIP and ESA. There is definitely a PIP thread on here somewhere which I found really useful xxx

[EJ81]

Hi, bit late to the party but thought I'd welcome you and add my experience. Diagnosed with primary in May 2014. Opted for MX rather than chemo first Day after surgery was sent for liver biopsy as 'something' had shown up on a scan. Week after MX was told I had secondary on my liver. Had to wait at least 6 weeks before starting chemo while everything recovered with constant worry that my liver would be getting worse. Really wish it had been confirmed before surgery. I know its really hard to get your head around a double whammy diagnosis but I know I felt so much better once chemo started. Hopefully you have a clear treatment plan underway now. Ellie xxx

[mrsblue]

Hi, so sorry to hear your news, you've had some good replies already.  May I add another...... bc dx 2006 after routine mammo, multiple liver mets found 2009.  Never had surgery, I still have breast primary.  Am ER+PR+ but herceptin negative.  Herceptin is an amazing drug but I just wanted to say to anyone reading this who is HER negative, it is possible to survive for more than 5 years with liver mets.  I've had 4 chemos and various hormonals, good quality of life until about a year ago.

[sod6162]

Thank you Belinda, will be reading it later.

[SmartiePants]

Yes I still work full time. But I do a desk job and my boss is great.

[belinda]

Hi, sorry I have just read your post here, I have mets too. I don't know if it's of any help but you do come under the protection of the disability discrimination act. See link here, under progressive conditions,
https://www.gov.uk/definition-of-disability-under-equality-act-2010

[sod6162]

Can I ask you SmartiePants, have you been working while having chemo? I am pretty sure I will lose my (second) job, as I'm on 6 month contract and it's physical (post women).  My other job is driving tuition, but I'm struggling to hang on to my handful of students who can't wait for my good days.....understandable. more worry 😞

[SmartiePants]

hi, I too am bc with liver mets and was diagnosed in Dec 2014. What a shocker.....but slowly I'm dealing with it. Remain positive and live each day to the full. I'm 43 and have no intention of giving up! I'm on my 13th session of chemo tomorrow and my last breast scan on Tuesday showed my tumour had gone from 2cm to begin with to less than 2mm now. And the last liver scan showed my 3 lesions had reduced to just 1 small one. For me it's the fact it will always be there that I'm struggling with. I want to finish my chemo and be able to say, yes! That's it. I'm free of it. But I know that wont happen and I struggle with that. But I draw inspiration from these ladies on here. X

[sod6162]

OMG, you women are amazing!!!  Thank you ALL so much for you kind wishes and very relevant info.  I really didn't get any confidence from the surgical consultant, but the posts on here helped me talk confidently to my son.  I shall be back on here often and hope I can be as generous to someone else xxx

[LemonDrizzle]

Hello Sheila, I'm the same as you. Although when diagnosed in Feb last year it had already spread to liver, lungs and bones, the onc was more concerned about the biggest one in my liver which was just over 9cm. Surgery was cancelled and had Docetaxel, Herceptin and pertuzumab like the others. Even though I only had 3 cycles of the chemo, it started to shrink and continues to do so even though slightly and is about half its original size. It is a hell of a shock getting everything diagnosed at once, but in time it does get easier. My surgeon did say that surgery could be an option in the future if the drugs shrink and then stabilise everything so that might reassure you. Don't be afraid to ask us any questions you might have even if they seem a bit silly, someone will be able to help you. Put yourself first at this scary time and when your treatment plan starts you'll start to feel as if you're doing something to help yourself. LD x

[elliedog]

Hi Sheila, I agree with everything Nicky says. My story is that I had surgery then six weeks later a small met was discovered in the liver.I was but straight onto Herceptin,Pertuzumab and docetaxel for 6 cycles every 3 weeks.At the end of the chemo the scans showed my liver was clear and I now continue with Herceptin and Pertuzumab with Tamoxifen thrown in.All my scans have since shown to be clear and I hope they continue to be (I get my latest scan results on Monday).I know plenty of ladies with liver mets that have been around for years and doing well. I recently read about one of the orginal ladies from the Herceptin trials (Ginger) who is still here today after being dx 20 years ago and shes not the only one. It is a very difficult time at the moment obsorbing all the information thrown at you and dealing with this serious dx but you will find that you will find the strength to deal will this. I was dx 2 years ago at the age of 43. Two years on life goes on, I work and run around after my 16 and 11 year old boys. Herceptin and Pertuzumab are targeted drugs and apart from the itching from the Pertuzumab they are easy drugs to take and I hope they do their job for a long time. Take your time,ask questions and while you are on chemo be a little selfish and put yourself first.
Take care
Angela x

[nicky08]

Hi Sheila
Sorry you have had to join us and it must be quite scary to come to terms with a secondary diagnosis at the same time as finding out about the primary diagnosis. We have all learnt over the years how to cope with our new 'normal' but it takes a while in anyone's books so give yourself that time to adjust. I think most of us have felt more able to cope once we have a treatment plan in place and feel that something is being done. As your oncologist has said treating the secondary will be a priority so surgery for now will not be offered. It may be in the future but any treatment you do have will treat the primary and the secondary. One of the reasons for no surgery first is that it would compromise your immune system as your body would have to cope with the surgery itself and chemo isn't normally given directly after breast surgery, there is usually a bit of a wait.
Because you are HER2+ and not had any treatment before I would think you would be most likely to have chemo of docetaxel with Herceptin and Perjeta (also known by its 'proper' name of Pertuzamab) however they may be other treatments discussed when you next go for an appointment. If you are on Pertuzamab there is a thread on here called that so it's worth having a look on there for others who have gone through this treatment (me included) or are currently having it.
Please come back and ask any questions, however small they may be, you have a big learning curve ahead of you but here are plenty of ladies on here with years of experience who will be able to help and support you.
Take care
Nicky x

[busyanne]

You are Her2 positive so will be able to take advantage of the current treatments which are very successful.  Herceptin is your first point of call and if in England Perjeta.  Not sure of clinical name of this.  I have met suffers who are ten plus years down the line with liver mets at diagnosis.  Take care and keep your spirits up.  Yes it is serious it obvously is you have breast cancer but treatable at this stage.  Anne

[2catlady]

Hi,Sheila,so sorry you are joining us. We are a friendly bunch of ladies.
There're many ladies on here who have had liver mets for year. I've got,spine,pelvis,ribs,liver,lungs and chest nodes mets .I got the double whammy of PBC and SBC diagnosis in 2013.
I can't have surgery as onc said its all over so no point.
We all tend to hang out on the bone mets thread so feel free to jump in but I do warn you we are all as mad as hatters .
Huge hugs,helen xxxxx

[sod6162]

Hello everyone, this Forum is such a huge help, and fills in loads of gaps.  I was told today by the surgical consultant, 5 weeks after finding lump at mammogram, and assorted scans, that I have secondary breast cancer in my liver.  The consultant stated that there was no point in surgery to remove the lump (and nodes) due to this diagnosis, as I need to start chemo instead to treat the liver.  As per usual (after 3 visits with him), I came away feeling very calm, but unsure whether I will be around for 6 months, a year, 5 years....and when I asked for a prognosis he refused to comment, other than to say it was serious.  Thank god for the BCN, who was much more accommodating with information.  And again, bless everyone on here for posting such positive messages and information...I just need to explain it all to my 19yr old son now.  

Has anyone else gone straight to jail without collecting £200?  BCN did confirm (after I mentioned seeing something written on this site) that surgery may occur further down the line, depending on how I get on with chemo/herceptin (I am HER+ as well).

Sheila x